Bernadette's Hodgkin's Journey

New Blogg Address

2008-04-30T23:30:00.001+10:00

http://bernadettevella.blogspot.com/

This is my new blogg address site

Entertainment Book

2008-02-27T20:52:00.003+10:00

As you know last year I was in the process of setting up a charity to help other mum's who are diagnosed with cancer when they have young children. Anyway I have finally had all of the necessary approvals granted with the tax office and office of fair trading, so I can now get it all started. The first fundraising I am going to do is selling the Entertainment Books. I will be selling both Sydney editions and Brisbane editions. If you are interested in purchasing one (or selling them at your workplace / to your friends) please send me an email (you can do this by posting a comment and including your email address so I can reply).

http://www.entertainmentbook.com.au/

Early Bird Special

Order and pay for your new 2008/2009 Entertainment Book now and receive 6 bonus offers valued at over $200 which can be used immediately. Bonus offers can be collected from Bernadette Martin when the payment form below is completed and they arrive end of February.

They’re coming… The 2008/2009 Entertainment™ Books will be available for collection end of March.

Arielle is a monkey

2008-02-20T22:26:00.003+10:00

Sorry for the writing across the video but it was 80 mb and this was the only way I could get it smaller

Remission

2008-02-20T21:05:00.002+10:00

Yes you read correctly - I was told today that I am in remission. How excited am I?!?!? The other piece of brilliant news was that I spoke to the nurse patient educator and Kerry about long term survival and they both said that the longer I survive post transplant the less likely it is that the cancer will come back. Apparently most people that don't make it, don't make it early on. So not only am I in remission but there is a good chance I will stay in remission. I feel like the luckiest person on earth!!

Aahh....

2008-02-20T06:33:00.008+10:00

I am now back from my holiday at the health retreat. Oh it was heaven. Julian came with me and we spent 5 nights there. It was absolutely fantastic. I was a little skeptical about the food prior to going however there was no cause for concern. The food was primarily vegetarian however there was one fish dish and one chicken dish. The food was all incredibly healthy and we loved it. We even survived the week without caffeine (yes no Coke for me!!) and sugar (yes no chocolate!). There were lots of fun activities like a flying fox, massage, mud baths, yoga, meditation and so on. The photo of me all wrapped up is when I had a salt scrub and a mud wrap - I was in heaven!! They also had personal development sessions which were all talking about being present in the now rather than wasting time dwelling on the past or worrying about the future. It could not have been more suited to what I needed. I had had a very negative attitude about my long term survival before going. I have come back with a totally different attitude. I have accepted that there is a reasonable chance the cancer will come back but if / when it does I am determined that I will fight it and survive. I am now living in the present and not worrying about the future. I realise how lucky I am to be alive and to be surrounded by the most wonderful family and friends. My life is so full of love and happiness and I am just grateful for that and making the most of it.

The kids stayed with mum and dad whilst I was away. They had a great time with them. It was so great to see them again when I got back. They both gave me the biggest cuddles ever.

The video below is of Arielle being a monkey!

This will be added soon - currently having technical difficulties!

On the weekend we had Ben and Rebecca's engagement party. Nunna, Johnny, Alice, Rita, Pauline, Cathy, Andrew, Jerry, Nathalie, Carmen and Joe all came up from Sydney for it. We had the most wonderful weekend together. Saturday night was heaps of fun. I had a few drinks for the first time in ages and really let loose. Most guests got a little happy and we all had a tonne of fun. I am sure Julian must have wondered what on earth he has got himself in for going out with me!! (Only kidding, he assures me he still loves me even after the weekend!)

Happy New Year

2008-02-05T10:42:00.000+10:00

Christmas Day at Ben's

Christmas celebration with Adam and Lisa

Day at Seaworld with Jess, Tim, mum and dad

Tiernan's 4th birthday party

Day at home with mum - cooking and then playing outside in the mud and rain

New Year's eve at mum and dad's

Happy New Year to everyone - I know I am about a month late but I have been a little busy. Life is going brilliantly. We had the most lovely Christmas. Jess and Tim came over on Christmas eve and stayed the night. Jess and I were up late making sure that Santa came and left his trail for the kids to find the next morning. On Christmas morning, mum, dad and I were up at the crack of dawn but the kids decided to sleep until 7.00am. We were so excited for them and could not believe that they were sleeping in!! They had a lovely time opening the presents and even Arielle got into the mood. After breakfast we went over to Ben and Rebecca's and had Christmas lunch over there. Once again the kids were spoilt and had a great time. The kids went to their dad's for the rest of the afternoon and we partied on.

I stayed at Jess and Tim's for a few days and Jess and I had a great time hitting the Christmas sales. The credit card got a bit of a hiding! The kids were back with me for new year's and Jess, Tim, Ben and Rebecca came over to mum and dad's. We saw the new year in and had a lovely night together. The rest of January was quite busy. Tiernan turned 4 and we had a 4th birthday party for him at McDonald's. He loved it and had a lot of fun with his friends. We caught up with my cousin Adam and his family a few times and the kids absolutely loved being together. Tiernan and I did a trip to Movieworld with Julian (more about him later) and his kids. I was very proud of Tiernan - usually he gets very scared and upset on rides however he was very brave and even went on the log ride with the big dip and splash at the end. The kids had an absolutely fantastic day. Then a few days later, mum, dad, Jess, Tim, the kids and I went to Seaworld. Again we had a fantastic time. Arielle even got into the ideas of the rides and we all had such a wonderful day.

Healthwise things have been ok but not perfect. I had a little trouble the day before new year's and had a little trip into hospital (turned out to just be a chest infection) and then two and half weeks ago I managed to get food poisoning and had a one night stint in hospital. Other than those two little hiccups though things are going well. I have had another CT and all was good - still scar tissue there but no new growths - fingers crossed it stays that way. I have had some more tests on my heart and it's functioning has got a little worse but nothing to be overly concerned about. I am still on my heart medication and quite a few other tablets but I suppose it is a small price to pay for still being alive! I have gone back to being able to drink alcohol which I am starting to really enjoy. Nothing beats a lovely glass of wine with a great meal. I am going to a health retreat on Sunday for 5 nights which I cannot wait for. It will be so lovely - there are lots of wonderful activities such as kayaking, yoga, meditation, flying fox and so on as well as some lovely treatments such as massages and body wraps. I need to refocus and get some more positive energy and thoughts back regarding my health (lately I seem to be a little preoccupied by the fact that I only have a 30% chance of being here in 5 years). Hopefully I will come back a fresh, rejuvenated person.

Well I promised more about Julian... who is that you ask. Well as I mentioned in my last blog I started dating again. I used an online site called RSVP on the recommendation of a good friend. Anyway, in December I happened to meet a lovely guy called Julian. He is a 35 year old English programmer with two children (girl 8 and boy 6). We have really hit it off and we both make each other very happy. His kids are also lovely and the 4 of them (his and mine) get on well. I was not expecting to meet someone so special so soon but I suppose life works in mysterious ways.

My house has not really progressed much. The land settled and the plans were in with the architect for December and January. The architect called yesterday to say that the plans were all finished and I will be picking them up today. The next step is to take them to three builders and get quotes and then the building can finally start.

Well nothing else to report. I hope everyone is having a great 2008

Christmas is nearly here

2007-12-15T09:25:00.000+10:00

Well it has been another month since I last updated my blogg. Here are some photos of the kids getting dressed up for some Christmas photos. Taking these was a lot of fun - Nutmeg and Basil (the dogs) wanted to be in the photos and then trying to keep Tiernan and Arielle in the photos and smiling was nearly impossible!

Tiernan is getting very excited about Christmas. He absolutely loves Santa and gets so excited he can barely speak when we see him at the shops. I cannot wait for Christmas morning. Arielle on the other hand is petrified of Santa and clings on for dear life whenever we go near him. It was very cute in the car the other day, Tiernan was telling Arielle all about Santa and that she should not be afraid of him.

Healthwise things are going well. I had a little set back the week before last. I had some chest pains and went to the doctor and they did a heap of tests. It turned out that when I was sick with the tummy bug last time, some bugs got into my bloodstream and I ended up with an infection in my blood (it had been festering for 4 weeks). I spent a week in hospital on IV antibiotics but now I am much better. I had a CT as part of all of the tests and everything is still going well - no signs of any active cancer. I had some tests on my heart as well and unfortunately things have not improved at all there (actually they are slightly worse) so it looks like I will still be on the heart drugs for a long time if not for life. I now have 4 whole weeks off without seeing any doctors which is the longest I will be going without seeing a doctor for the past 2 years!!

Socially things are going brilliant. I have started dating again and am having the time of my life. It has been great meeting some new people and it is a lot of fun. No one special yet but I am really enjoying meeting different people and being away from all of the negativity with Cam.

I am working between 2 to 3 days per week. One day in the client's office and the other days from home. In the new year I will probably try to spend two days in the office as I am really enjoying going into the office.

My block of land has now settled and I will start building on it in the new year. Mum and dad have sold their house and I will be looking for a place to rent closer to Brisbane to live in until my house is built (mum and dad have offered for me to stay with them in a rented place when they move so I still have that option open to me).

Not much else to report. I hope everyone has a very happy Christmas and New Year.

Holiday snaps

2007-11-14T16:14:00.000+10:00

This morning we went across to the beach. Tiernan's water confidence has improved heaps and he was a little fish. Arielle loved splashing about in the water as well. When we came back to the unit, Nunna, Tiernan and Arielle all crashed!!

Going along nicely

2007-11-13T22:18:00.000+10:00

Well it has been nearly a month since I updated my Blogg and believe it or not I am on holidays at Caloundra again!! My nunna (Maltese for grandmother) came up from Sydney on Sunday and today, Nunna, mum, Tiernan, Arielle and I came up to Caloundra. The kids and I are staying until Thursday morning and mum and Nunna are staying until Friday. Unfortunately the weather is still a little chilly for November but Tiernan and I have already made use of the heated spa tonight and we should still be able to go to the beach tomorrow. I'll take some photos tomorrow and update the blogg as I just realised that I have no recent photos to put up.

Well healthwise the past month has been ok. At the end of October I landed a sinus and respiratory tract infection but luckily they were managed with a tonne of antibiotics. Then last week I managed to land myself in hospital for 3 days. Little miss A caught a tummy bug and managed to pass it onto dad and I. Unfortunately I faired much worse than Arielle did and could not keep anything (including water) down for 36 hours. So once Kerry found that out, he admitted me and put me on IV fluids for a few days. I felt so much better so quickly so I was glad I was admitted. When I had the respiratory tract infection I had a CT and thankfully it showed up all clear. There was still some scar tissue left but no cancer. I saw Kerry again today and all my blood tests were good so I now get two whole weeks with no doctors appointments and no tests. He said going forward I will have CTs every two months and then once they are clear for awhile we can move to every 3 and then 6 months. I feel like I am finally on the mend!!

As most of you know by now, Cam and I separated a little while ago. Our separation was very amicable so hopefully it will not be too hard on the kids. We each have the kids 50% of the time and that is working well for both the kids and Cam and I. I have moved out of the house and now live with mum and dad. I will be staying with them until January and then I will move into a rented house with the munchkins as Tiernan will be starting Kindy 3 days per week. I have purchased a block of land and will be starting to build a house on it in January. It is only about 3 minutes from Cam's place so it will be easy with the kids going between the houses. Since separating I am in a much better place emotionally and am getting happier by the day. I am back to socialising with friends and really starting to enjoy life again. Between that and feeling stronger physically each day, life is pretty good at the moment (first time I have been able to say that for a long time).

Well that is all to report for the moment. I'll write again tomorrow.

A lovely break

2007-10-15T13:08:00.000+10:00

Here are a few holiday snaps. Mum, dad, Tiernan, Arielle and I spent a week at Kings Beach (Caloundra on the Sunshine Coast). Our apartment looked directly over the beach and it was just lovely. The kids had a ball. Tiernan absolutely loved the beach - he went fishing and swimming and played in the sand and had so much fun. Arielle found the water a little too cool for her liking however she was happy playing in the sand. I had a really relaxing break and being in the fresh ocean air gave me a lot of time to think about life and reassess where I was going. Just before I went away, I spoke with my doctor about survival rates. I had read studies that quoted 5 year survival rates of around 30% post stem cell transplants. I thought it was a little low so wanted to clarify it. Unfortunately the numbers were correct and the 5 year survival is only 30% (I stand a reasonable chance of getting the cancer back again and I have already been exposed to all but 2 of the drugs they can use to treat Hodgkins). I am not letting it get me down though as the cancer only wins when it stops me living and right now I am trying to live my life with my two gorgeous kids to the fullest. I think it will just make me more aware of how precious our time on this earth really is.

I have changed email addresses - my old one will stop working on Nov 10 - if you have not got my new email address sent an email to dette @ beeconsulting.com.au and I will send you the new address

All good news

2007-10-01T10:27:00.000+10:00

Well all my treatment is now finished!! Yippee!! I still have to see the heamatologist (weekly) and cardiologist (quarterly) but at least there is no more treatment to attend. We had a little scare last week. My blood test results weren't so good and there was a concern that perhaps there was a new tumour. I had a CT on Thursday and not only did it show there were no new tumours but it also showed the mass that was showing on the last CT was even smaller and the shadowing that was showing on my lungs and liver last time was no longer there at all. So basically it was even better than we were hoping for. I'll have a few more blood tests on Tuesday to help work out what is going on but at least it is not the cancer. My red blood cells are down a bit and not recovering so I may be up for a blood transfusion but I dont mind that as I always feel so great afterwards. My immunity is not picking up so well so I also may have to have monthly transfusions of something called Intragam which will give my immune system a little help until it works out how to recover on it's own. Basically at present I have the immune system of a 2 month old baby without the benefit of getting a mother's immunity from breast milk. It is all quite fascinating really (I'd find it more fascinating and less scary if it wasn't happening to me!!).

Energy wise I am feeling better each day. I am waking before 10am most days now which is a big improvement on my 11am to 1pm waking time of only a few weeks ago. Slowly I am eating more although my weight is still dropping a little (43.5kg at the moment - my doctor is not too happy with me). I am spending quite a bit of time at mum and dad's and that is really helping with both the resting and the eating side of things. They are both great cooks and they really look after me - I couldn't ask for better parents.

We are looking forward to next week. Mum, dad, Tiernan, Arielle and I are going away to Kings Beach (Sunshine Coast) for the week. We are staying in a unit opposite the beach and it will be great fun. They are off water restrictions up there and there are some fantastic water play features at the beach which Tiernan will just love. There are lots of rock pools and beautiful sandy beaches as well as a great kids sea water pool which is all under shade sails. There are also jettys that you can fish from. It is going to be a lovely holiday and we cannot wait. Tiernan keeps telling dad to remember to bring his fishing line as he wants to go fishing and catch a snapper!!

Well not much else to report. As usual I have posted some photos of my two adorable children. The first is of Tiernan and I at Seaworld (mum, Tiernan, Arielle and I went last week) and the second is of Arielle balancing her bowl on her head (and being very proud of her trick).

2007-09-16T20:24:00.000+10:00

Things here are going quite well. On Wednesday I finish radiation and hopefully that will be the end of my cancer! The radiation has been a walk in the park compared to chemo - the biggest hassle is having to go into the Mater each day. So far I have had no skin damage and no sore throat although they said the side effects will peak 5 - 10 days after treatment finishes. As for tiredness, I am always tired anyway so I haven't noticed much of a difference!

The kids are going well. Arielle and Tiernan are the best of friends and it is so lovely to see them playing together. Arielle is pulling herself up to standing on anything that will sit still for a minute. She loves reaching up on things and then throwing whatever she can reach.

Not much else to report - I hope you enjoy the photos and video of the kids.

Arielle's Birthday

2007-08-25T13:07:00.000+10:00

Our darling little Arielle turned 1 on Wednesday. I think she knew it was her special day as she was in a super smiley mood all day. She got some lovely presents for her birthday and she loved trying to eat her birthday cards (I did type that correctly – for some reason she likes trying to eat cards). She also ate a little bit of her birthday cake. Tiernan was a fantastic big brother and helped her open presents and blow out her candle. He was not at all jealous and was even more excited than Arielle was. We got her a Fisher Price dolls house and her and Tiernan just love playing with it together. Last Sunday a tooth appeared so she was not a gummy bear for her first birthday!

Not much news

2007-08-18T21:01:00.000+10:00

Well there is not much news to report which is a good thing really. I saw Kerry today and apart from my neutrophils being a little down everything else was good. I had to have two blood tests today. The first one was the normal one which I have to have every time I see him and the second one was to check my serology. Arielle is due to have her 1 year old vaccinations which includes some live vaccinations. Before she has the injections we need to know what my immunity to these diseases is and then they can determine if I can be near Arielle after she has the vaccinations – nothing is easy when you have cancer!!

I start my radiation on August 27. I am not looking forward to having to trek into the Mater each day but it is only for a month and then hopefully my visits to the Mater will be infrequent!

Well not much else to report so I shall sign off for today.

Good results

2007-08-06T16:07:00.001+10:00

Well it is nice to be able to report good results from my PET scan. The PET scan showed no active tumours!!! Yippee!! That means no more chemo. There is still a small area of something but they are confident that if it is any left over cancer cells that it will be treated with radiation. The radiation starts at the end of August and goes for a month and after that all I need to do is go for regular CT scans. My heart is still giving me a bit of trouble. The cardiologist would like to increase my heart medication as it is still beating too fast and working too hard (I still find it strange that this is called heart failure) and the medication slows it all down but unfortunately my already low blood pressure has been lowered by the dose of medication I am on, so he cannot increase the dose any more. We will just have to wait and see if it gets better on its own.

So that will be it from me for awhile. I will write again once radiation is underway. Bye for now!

Still no answers

2007-07-27T21:53:00.000+10:00

Well unfortunately the CT I had yesterday did not give any definitive answers. It still showed masses there but they cannot tell if they are cancer or scar tissue. Unfortunately the doctor who reported on the CT did not provide a whole lot of information and did not say the size of the growths which was pretty disappointing. So next Wednesday I will be having a PET scan and that will give a definitive answer on whether there is any active tumour.

I saw the radiation oncologist today and he is going to start radiotherapy soon. Hopefully even if there is some cancer left this will obliterate it.

Arielle and I were on tv tonight in an interview about faith and healing - click on the link below if you would like to see it.

http://cosmos.bcst.yahoo.com/up/player/popup/index.php?cl=3469111

It's been awhile

2007-07-21T17:22:00.000+10:00

Well it has been awhile since I updated my blogg - no real excuse other than laziness! I managed to get out of hospital on the Saturday and went up to mum and dad's for the weekend as Cam was at rescue helicopter. I spent the majority of the week in bed, either asleep or resting. For the first time in my life I actually woke up in the afternoon. Prior to this a sleep in for me would be 8am, so to sleep into the afternoon was a total shock for me! All of my muscles still ache and I get puffed doing even the smallest thing. Last week I can say I had no improvement at all - if anything I felt I was going backwards as I was getting quite down about being so sick. I knew I was going to be tired after the double stem cell transplant but definitely did not expect to feel so sick for so long. I told Kerry so when I saw him this week and he agreed I looked rotten but said it was to be expected. My tummy troubles continue to plague me and that is probably adding to the exhaustion. This week I think I have made tiny, baby steps and do feel better than I did last week. My mood has lifted too and at least this week I don't regret having the second stem cell transplant (last week I totally regretted having it as I was unprepared for how sick I would feel so long after the transplant).

On Thursday this week I had to have a heart monitor put on me for 24 hours to allow the cardiologist to look at how my heart is working and make sure everything is going ok with the heart medication I am on (he changed it last week). During the 24 hrs I had to record if I undertook any activity that could impact my heart, such as exercise or pain. They then compare the notes to the heart recording to see if any abnormalities match up to anything specific. Obviously I told Cam to stay well clear of me on Thursday night as I did not want to have to explain any night time activities!!

Next week is my tell all week. On Thursday I am going to be having a CT scan. I am still having night sweats so the CT scan which is usually just my chest, has been extended to my pelvis and abdomen to make sure there are no problems there. I will see Kerry on Thursday afternoon for the results and based on those he will decide if I have to have a PET scan (determines if there is any active cancer). On Friday I am seeing the Radiation Oncologist and he will work out with me when the radiation is supposed to start (Kerry said probably in about a month as I need to get some more energy in reserve for them to zap).

Hopefully next week I will continue to improve, even if it is in baby steps. I am loving being at home and enjoying everybody's company and enjoying eating home cooked meals. I even did a grocery shop last week for the first time in months and it is sad to say but I actually enjoyed it. It was nice to feel slightly normal again (I was exhausted when we got home). Well I had best be going - I will write again once I have the results on Thursday.

Still in hospital

2007-07-06T20:34:00.000+10:00

Unfortunately I am still in hospital and very unimpressed with the idea of still being here. Kerry saw me this morning and wanted me to stay in until Monday so that they can keep a close eye on me. I eventually managed to convince him to let me go home tomorrow if I promise to keep an eye on my temperature and come in if I have any troubles and see both Kerry and the cardiologist on Tuesday.

The cardiologist saw me this morning and he said that the fluid on my heart and lungs would not go away by itself so I had to start on two lots of heart medication today. One is lasix which I am used to having through IV but now I will have Lasix tablets to take at home. I cannot remember the name of the other one. I also have to see the cardiologist regularly until the fluid all goes away.

Unfortunately I landed a two share room instead of a single room this time. The lady I am sharing with is in her mid sixties and drives me insane. She talks so loud when she is on the phone that I had trouble hearing the cardiologist talking to me this morning! The other thing is she constantly wants to talk. I had turned all of my lights out and was tucked up in bed last night and she kept chatting away. Then this morning as soon as she heard me roll over and stretch the talking started again. Even my one word answers, grumbled out of my mouth did not give her the picture that perhaps I was trying to sleep!!

Hopefully tomorrow they will let me go home and I don't plan on coming back!

Home for a short visit

2007-07-05T18:56:00.000+10:00

I did manage to get home on Monday but unfortunately I landed back in here last night.

Monday was so exciting. Kerry had told me over the weekend that as far as they could tell from the scans there was no more tumours left and that was just fantastic news. I still have to have radiation treatment but at least we know that the tumours have already gone so the radiation is just to be sure and to get any rogue cells that are remaining. So home I went on Monday. It was just great to be at home with Cam and the kids. My energy levels were pretty low but that was to be expected so I just had to spend a lot of time resting in bed or on the couch. On Tuesday we went with mum, Nat, Jane and her kids and Tiernan, Arielle and I to a play centre. The kids had an absolute ball. Arielle even had a go on the slippery slides and Tiernan was making mum, Nat and I take turns at climbing through the play structure with him and then going down the big slippery slide. I was exhausted by the end but it was worth it. On Wednesday we had a quiet day at home and the boys finished building the sandpit in the backyard. I managed to get a little bit of gardening done (Tiernan and I planted a little herb and vegie garden earlier in the year).

Late yesterday afternoon I started getting pains in my heart and they would not ease so I came in to the Mater Emergency Centre. They did a few tests and it turns out I have fluid on my heart and lungs. I also had a temperature (I had to sheepishly admit to not taking my temp since being home - a big no, no as I am supposed to be taking it several times a day and coming into hospital as soon as I get a temp). So they have stuck me on some IV antibiotics to combat whatever infection is causing the temp and then I have had a heap of tests on my heart to try to work out what is going wrong with it. They call it heart failure but it is not as bad as it sounds it just means that my heart is not doing it's job of pumping fluid out properly and therefore my heart is retaining too much fluid and then the fluid overload has leaked into my lungs. It is not really too painful but more uncomfortable than anything else. My emotional state is probably of more concern as I am so peeved that I am back in hospital - I so do not want to be here. Tomorrow I should be seeing the cardiologist and hopefully then I will find out what is going on and what they plan on doing about it and then hopefully I can get out of here.

Yeah - No More Chemo!!!!!

2007-06-28T17:01:00.000+10:00

Yes the heading is right - as long as there is no new growth anywhere, I am finished with chemo. I have to have radiation but that is supposed to be a walk in the park compared to a double stem cell transplant! The timing is good as I am totally sick of it all. I feel like I can barely remember what it is like to feel well. The past few days I have felt miserable and sorry for myself, wishing there was some way to take a break from chemo side effects! But unfortuntely once the poison is in my veins there is no cure but time. I am improving, although I am still plagued by tummy troubles and my cold so Kerry has changed my release date to next week - hopefully early in the week.

On Tuesday I had a lovely day. Cam, Tiernan, Arielle, mum and Nat all came in to visit and it was just wonderful. It really lifted my spirits. Yesterday I had a lovely visit with Cam and Tiernan. Tiernan and I had a lovely cuddle in bed for ages. We were looking at photos on a digital photo frame that Nat bought me. Tiernan would name the people he saw in the photos. There was a photo of him as a baby and I was holding him. He said to me "Oh baby Tiernan and who is that?". It took me a minute to realise that I had long hair in the photo and Tiernan had just turned 2 the last time I had hair so it was probably reasonable that he did not know who it was! He talked to me a lot about when I was coming home and when I would be better. Those conversations always break my heart - it is so much for a 3 year old to understand.

This morning I woke up to Cam rubbing my hand! It was a lovely surprise. I had woken up earlier and had breakfast and then felt miserable so climbed under the covers and went back to sleep. I did not know that Cam was coming in so it was a lovely way to wake up from my snooze!

The weather in Brisbane is freezing at the moment and I don't think the hospital a/c has got it right because I am freezing in my room. Part of the problem is my lack of hair as my head is freezing more than anything else on my body. The ward has lovely warm blankets and I am constantly wrapping them around me!

Continuing to do well

2007-06-25T14:39:00.000+10:00

I had a CT scan this morning (I had some numbness in my left hand) and the results are in and all is very good. I don't know the exact size of what is left however Kerry said he was very pleased with the results and that the chemo has definitely worked. I will still have another CT in 2 weeks as the chemo will still be working away at the tumours.
My counts today were still good - my platelets were low but they are always the last to recover. If things continue to go this well Kerry said I could be out in a few days which is fantastic.

Bye bye eyelashes

2007-06-24T14:28:00.000+10:00

This morning I had an eyelash in my eye. I looked in the mirror to take it out and was mortified to see that I had actually lost nearly all of my eyelashes. I am not even sure when it happened - they have all just gone!! My eyebrows have been diminishing slowly as well and there is not much of them left anymore either! Oh don't you just love chemo.
I am on day 12 post transplant and can report that my white cells and neutrophils have recovered and are now within normal range. My platelets are still pathetic (12 when normal is 150 - 400) so I am continuing to have platelet transfusions. I am still swollen like a balloon and my weight was 56.5kg yesterday. They gave me a big dose of Lasix and today I am 55kg. The fluid retention is revolting as my skin is so stretched that any movements hurt. Hopefully soon my heart will start working properly and get rid of the excess fluid. The diarhorea is still persisting unfortunately so I am quite sore. I have been resting a lot as I am just perpetually tired. I will be having another CT in about 2 weeks and that will tell us the status of the tumours and then Kerry will decide what to do next.
I finally decided on a name for the charity - it is "Mummy's Wish". I am currently in the process of registering the charity and doing all of the paperwork to set it up. We have sold quite a few entertainment books to get it going which has been exciting. The next project is procuring items for the charity auction that we will hold later in the year. This is something I feel really passionate about and it is such a nice feeling to know that I am going to make a difference.

Yippee Counts are recovering

2007-06-20T09:53:00.000+10:00

Yippee my counts are recovering - I am Day 8 today and my white cell count is 0.6 and my neutrophils are 0.26!!! Yeah, yeah, yeah!! I am feeling heaps better this morning as well. Life is just going to get better from here on. All of the prayers are certainly working.

I look like a balloon

2007-06-19T21:29:00.000+10:00

I currently look like someone has blown me up like a balloon. I have a lot of fluid retention with my weight hovering around 53kg to 56kg which means I am carrying around 25% more weight than usual (45kg is my usual weight). My skin feels tight and stretched and all of the excess fluid is quite painful to touch. The reason for the fluid retention is that the chemo drugs put a lot of strain on your heart and it struggles to get rid of all of the additional fluids I am receiving - I am on 3 different IV antibiotics, IV potassium, IV magnesium, artificial feeding (TPN), albumen (a blood product), blood transfusions and platelet transfusions. So each day I am pumped with litres of fluids in addition to what I am orally consuming (lots because believe it or not even with all of the fluids being pumped into me I am constantly thirsty!!). So during the day I am regularly pumped with Lasix to keep the fluid retention under control.

I had a few dramas with my heart over the weekend and I had to be connected to a wireless ECG machine for a few days. It was such an amazing little machine. All the dots were connected to me and I had this little box that transmitted data wirelessly to the Coronary Care Unit so that they could closely monitor me. The whole medical world continues to fascinate me. I had been having chest pains of various sorts for a few days and then on Saturday night I had some more and they did a blood test. When your heart goes into distress it releases enzymes into your blood. The blood test results on Saturday night showed those enzymes in my blood which is why I had to be monitored. It was quite funny actually as on Sat night I went to bed at 8pm. At 9.30pm Dr Hill walked into my room and turned the lights on and started talking to me about the problems with my heart. At this point I did not know that my ECG from earlier in the night was not normal and I did not know about the blood test results, so I was quite confused about what was going on!! I had to get my nurse to reexplain everything once I woke up a bit more!!
I am now off the heart monitor as the pains have stopped and the ECGs are now normal. I have a little fluid around my heart but it is nothing to be concerned with as it should fix itself as I get better.

Unfortunately the diarrhoea has hit pretty hard again and I have a sore behind again. It is not as bad as last time though which is good. This time it seems to be my mouth and throat that are causing the most pain. Even swallowing water feels like razor blades. I am on an oral anaethestic that eases a little of the pain. I also resorted to having a Fentinyl patch and that takes the edge off everything.
I am on day 7 today and my counts are still 0 so I am not sure I will be able to match the last count recovery of 8 days. I suspect this time it will be around the 10 to 14 days.
The bronchoscopy results did not show any signs of infection in my lungs. Once I have recovered from this stem cell transplant I will have another CT and PET scan and hopefully the results will be good. Kerry said not to worry about any of that at the moment and to just focus on recovering.

My moods have been very up and down lately with the down part usually the morning and the up is the afternoon. When I first wake up in the morning I usually feel miserable due to everything hurting or just feeling off. It then takes me hours to have breakfast and get myself out of bed and showered. It is usually this time of day where I feel I cannot do it anymore. The next thought is always realising I don't have a choice - the chemo making me feel like this has already been given so I just have to ride the wave until I recover! Poor Cam then gets a phone call from me moping about how miserable I feel. He has been great with letting me vent all of my frustrations with being sick and then managing to turn my mood around a little with antics that the kids have done. We have had some really great family visits and that always helps my moods. It is hard to feel sick or miserable when Tiernan and Arielle are about. Poor little Arielle has bronchitus so we cannot see each other for a few days.

Enough of my rambling for the night - it is time I went to sleep. This is the first time in days that I am awake after 9pm!

Just poldding along

2007-06-14T20:51:00.001+10:00

I forgot to mention on Tuesday's blogg about the huge number of stem cells that were collected in my second collection. You may remember that on the first collection they collected 17 million stem cells which considering they only needed around 4.5 million was pretty good. I asked on Tuesday how many stem cells had been collected on the second day and the answer was a staggering 50 million (yes I did confirm that it was 50 and not 15). So all up my stem cell collection was pretty amazing. As I did not need all of those stem cells for my two transplants, I still have some left in reserve in case I need them.
Yesterday I felt pretty sick for most of the day. I spoke too soon about not having any side effects of the Malphalan. Diahhorea kicked in with a vengence and I felt revolting. Then my blood pressure started dropping and I got a small temperature. Bloods were taken to see if I have any infections and I was started on some antibiotics just in case. As I was having a lot of chest pain they did a CT. Unfortunately the results showed something in the area where my original tumour was and it was larger than what was there last week. As it is between my lung and aorta they do not know if the tumour has started to grow again or I have an infection in my lung and it is causing the tissue to swell. To try to get a better idea I had a bronoscopy this morning (small operation where they put a fibre optic tube into your lungs). The doctor could not see any obvious problem with my lung but he took some samples that will be sent off to pathology an if there is an infection then that will tell us. If it is not an infection then unfortunately it looks like the tumour might be growing again. I will be having a PET scan next week to help them work it out. So we are playing a waiting game now. Other than providing piece of mind, a definitive answer probably would not change much as I am already on the appropriate anti biotics if it is an infection and if it is the tumour then there is nothing else that can be done until my counts all recover and I am better.

Nowhere near as bad as I expected

2007-06-12T18:30:00.000+10:00

Well I can very gladly report that the Melphalan drug I received yesterday did not live up to its expectation. I did have some very strong anti nausea tablets but I did not need any tranquilisers. The day was actually quite bareable. I felt a little off for most of the day and food did nothing to interest me but they day passed without event. I was even up for a visitor at night and Jane popped in for a chat.
Today I faired a little worse but still in the scheme of things pretty good. I woke feeling great but then took small slides all day. At 11.30am I received my stem cells back (they are transfused into me just like a blood transfusion). This time I stayed awake for it - after they gave me all the drugs that usually put you to sleep (just in case you react to the storage solution you need to have pre meds), I got out of bed and sat in a chair determined to stay awake for it. And I was rewarded - this time I got to see the scientist bring in the big steel cylinder on wheels with the stem cells stored safely inside. Then there was another machine where the water was warmed to 37 degrees exactly. Then once everything was set up and ready the scientist took my stem cells out of the steel cylinder (it looked really cool as steam billowed out when he opened the lid - such a bummer my brain did not kick into gear and get the camera out).Then he put the bag into the water to thaw out and once it thawed out, it was put up on my drip pole and away it went.
Today my counts are on their way down White cells 1 and HB 100 and they will inevitably drop to 0. So we will have to wait and see what the week ahead brings but so far I have fared very well.

For Brisbanites

2007-06-10T16:08:00.000+10:00

I forgot to mention one of the fundraising ideas I have already made a start on is selling the Brisbane Entertainment book. If anyone in Brisbane would like to buy one please let me know.

Going along nicely

2007-06-10T15:23:00.001+10:00

Yesterday was a good day. Mum and dad came to visit in the morning and then I had some rest in the afternoon and then Jess and Nat came in to visit at night. Jess and Nat brought Chinese and some DVDs although we got too busy chatting to actually watch any DVDs! I felt well for most of the day. I was extremely tired though - last night I spent from 9pm to 10am this morning in bed!! Unheard of for me usually. This time I am not having Dexamethasone which is a steroid that usually peps me up and keeps the tiredness at bay. They think it was partly responsible for my hypomania so I am not having it this time. The good news is that now I don't need sleeping tablets to sleep (usually the dex peps me up so much I need sleeping tablets). Also the dex caused my skin to breakout so all round I am very happy I am not having it. For those who are wondering what role dex played in my treatment - it reduces swelling in the tumour and reduces nausea.
Today I have had a good day too other than feeling tired. Cam came and visited this morning and we had a nice morning together. Tiernan is sick with a cold so I will not be seeing the kids until he is better - I miss them so much. I contemplated seeing them and making sure Tiernan did not come to close but figured that would be impossible. Today is mum and dad's anniversary so mum, dad, Nat, Ben, Tim and Jess are out for lunch celebrating. Ben is going to pop in after that to say hi. Tonight Amanda and Kylie are coming in for our Sunday night chin wag. I am planning on spending as much of tomorrow as possible tranquilised. Doctors and nurses alike have warned me that tomorrow's drug is dreadful. Hopefully it wont be as bad as they say.
I am currently on the lookout for ideas. What for you ask. One of the positive outcomes of having had a hypomania attack was the ability to free my mind and have some creativity and I have been doing a lot of thinking lately (with my chemo and drug effected brain no less) and there are no services out there specifically to support mums who are diagnosed with cancer whilst pregnant or with young babies and/or toddlers. So I am starting up a charity. This charity is going to offer support such as babysitting so that the 'well' parent can visit the sick parent on their own, counselling for toddlers to help explain that a parent is so sick, counselling for parents to help them cope with the demands of a critically ill parent as well as a new baby/toddler, tip sheets for the sick parent on coping with some of the side effects of chemo, outings for the families on the times the sick parent is home, toddlers toys and DVDs to be kept in the 'cancer' wards of hospitals to help occupy visiting children. Where I need everyone's help is with ideas for fundraising. I am thinking of holding a charity auction dinner in October and would welcome anyone's suggestions or donations for items to auction. Natalie and mum are thinking of doing a walk from Bribie Island to Caloundra. Any other ideas are very welcome.

The other thing is the name of the charity. During my hypomania attack I decided that the logo for the charity would be three jellybeans - pink, blue and red. (Anyone with any artistic talents feel free to give me suggestions on how to put this together into a logo). The idea with jellybeans came from trying to explain to Tiernan that I was pregnant with him when I climbed the Harbour Bridge. We were at Circular Quay in Sydney and Tiernan saw people climbing the Harbour Bridge and he was amazed. I told him that when he was a tiny jellybean in mummy's tummy that mummy climbed the Harbour Bridge. Now we constantly have discussions about when he was a jellybean or when Arielle was a jellybean. I am not sure I really explained the concept well enough though as he has also commented about when he was grown up and I was a jellybean in his tummy. I think I will just leave it at that for the moment though as I am not going to have a birds and bees discussion with a three year old. The other reason two for jellybeans is that I just about live on them lately due to blood sugar problems and from childhood I have always related going to the doctors with having a Glucojel jellybean. So given all of this I was thinking of calling the charity either JELLYBEANS or JELLBELLY. Any comments would be greatly appreciated. I did think of Dette's Wish however I am conscious of the fact that we will probably have a website and trying to spell Dette's Wish over the phone would be too hard. So I want a name that is simple, easy to spell and easily recognisable.

Well that is all for now. It is ten to four and I still have to have a shower and change out of my pjs!!! At least I am holding up to my promise to keep the blogg regularly updated!

Finally an update

2007-06-08T18:30:00.000+10:00

Well in the past month I really haven’t managed to write much on my blogg – a combination of feeling completely exhausted, feeling unwell or simply not feeling in the mood. Hopefully now I will be back to my usual self and updating it quite regularly. So I will apologise upfront for a very long blogg entry today as I will give you an update from May 2 till now. But before I start here are a few photos of Arielle and Tiernan to put a smile on your face.

This is Tiernan on a day out at Australia Zoo with Tim and Jess.

The first photo is of Arielle and I at high tea. The other two are on my hospital bed. The last one is of my belly from all of the injections!!

Here goes on updating from May 2 to now. Be warned this blogg is very long.

On Wednesday May 3 I had my stem cells put back in. Having my stem cells put back in was easy – it was just like a blood transfusion and I slept through the whole thing as they gave me Phenergen to reduce any reactions. On Thursday morning I felt absolutely dreadful and by this stage my white cell counts had bottomed out. I called mum and asked her to come in. Thursday night I was still feeling awful, I had severe diarrhoea and was I was totally exhausted. I was on a Fentanyl patch (an opioid analgesic with an analgesic potency of about 80 times that of morphine - thankyou Wikipedia for that description) as well as regular morphine injections to control the pain. My pain stemmed from a few sources – the main one being the diarrhoea and secondary to that was my mouth and throat. I thought that once I stopped eating (I was on artificial feeding and was now consuming only water ice chips) that the diarrhoea would stop but unfortunately even with nothing but water was going in there was still a steady flow out! Going to the bathroom was usually enough pain to make me nearly throw up – very pleasant indeed.

About 3am on Friday morning I woke up feeling like death warmed up. The nurse came to do my obs and that is when the dramas started. My blood pressure was very low and my temp was 38.3. Not a good start to the day. Kerry was called (I am sure he appreciated being woken at 3am), they took a tonne of blood out of me and they started me on some IV antibiotics. I was not allowed to have anything to get the temperature under control until pathology tests came back. By 7am I was feeling even worse and ended up screaming at a nurse because he took 40 minutes to get me my morphine injection (I sound like a junkie) which I was desperate for at this stage as my temp still had not improved and my head was absolutely pounding. Finally I was also allowed some Panadol and that at least brought the temp down a little. They pumped my body with fluids and antibiotics. Pathology revealed that I had three bugs causing my infection – two of them were tummy bugs and the third was the strep bug. All of these bugs are naturally occurring and necessary in our bodies but usually your body sees them as bugs and acts accordingly. Unfortunately seeing as I had absolutely no immune system these bugs caused infections.

Despite their efforts the day did not improve and unfortunately my blood pressure would not behave itself (it got as low as 70 on 45). Then to add to my troubles my blood oxygen levels started dropping to below 94%. Usually this would not be a big issue as they would just give you oxygen but unfortunately when I had chemo last year I had a reaction to one of the drugs called Bleomycin and that leaves you with an allergy to high dose oxygen. The catch is they don’t know for sure what level of oxygen that you will react to (the allergy causes oxygen to be seen as a toxic gas in your lungs and you can die from it). So the only safe option is to not give you oxygen unless your life literally depends on it and you would die without it. So given the dilemma that we were facing I was told I had to go to the ICU. I was a little apprehensive about going as the ICU sounded like very serious and very scary stuff. I was calmed down and shipped off to a special room in the ICU that is used for hematology and oncology patients. It is a sealed room that is used to protect you from bugs and germs because you generally have no immune system. Mum and dad and Tim packed up my room and off to ICU I went.

Ben and Rebecca came by to visit and dad and Tim went home. Ben and Rebecca left and it was just mum and I. At no point were we specifically told anything was life threateningly serious so we did not call Cam to come in (he was with the kids and his parents up the coast). By this time I was exhausted. It had been a big, scary day and I wanted some sleep. Well the staff looking after me had other ideas. Unfortunately things were not improving with my blood oxygen levels. They told us that if they got to 84% they would have to make the decision whether to give me oxygen. I could maintain 84% whilst awake but as soon as I fell asleep it would drop to 79%. So I was continually poked and prodded and kept awake. Each time my blood oxygen got to 79% they would sit me up and make me breathe deeply. By 2am things got a little dicey as I developed a pulmonary edema which is fluid leaking into your lungs and this is caused by severe infection, low blood oxygen levels and too much fluid retention. Without immediate treatment it will cause respiratory failure. By this point I also had severe fluid retention and they were concerned that I could have kidney failure. Sometimes I believe that ignorance is bliss and this was one time that I am really happy that I actually had no idea what was going on. It was only after the event that all of this was explained to me and at the time I had no idea how serious the events of the night were. I think I would have been very scared had I known. I was given a drug called Lasix which is a diuretic that works quickly to expel excess fluid from your body. Thankfully this worked and by this point the antibiotics really started to kick in and all things started to improve. On Saturday afternoon I was returned to the ward (at this stage blissfully unaware of how serious the events of the night before had been).

The ICU doctors came to visit me on the ward and explained all that had happened on Friday night. It hit me pretty hard and I found it quite scary to think how dicey things had become. One of the things I became really upset about was that we were not told during the night that things were so dicey and so we did not call Cam, Dad, Ben and Tim to come in just in case the worst happened. I did not get to speak with the doctor that actually looked after me but the doctor I spoke to said that going to ICU is always serious and next time we should see it as such up front. The week plodded on and I felt pretty miserable for the start of the week. My body was still fighting the infections and the diarrhoea had not improved. The only thing I was eating were ice chips. Then by Friday I had started to feel a little better and was even able to start eating. I had had someone stay with me each night since my night in the ICU. Part of it was a comfort thing and part was to help me do basic things like get up and go to the bathroom as I was quite weak by this point.

My counts started to recover on day 8 – Thursday 10th May. My white cell count was 1.3 – it had been 0 for 7 days. They were very impressed as usually stem cells take 10 to 14 days to engraft. On Friday a good friend and I had a good discussion about our faith. She had sufferred through losing her child and I was amazed that she still had faith that God and heaven existed. I had pretty much lost my faith. After she left I kept thinking about our discussion. That night Kylie came in to stay. We had trouble sleeping and at 1am we were still awake. I decided to sit in a sitz bath (a salt water bath – eased the pain in my behind!) and covered myself in towels for some dignity and to stop freezing to death. We spent a few hours talking. During this time I realised that I had not updated my blogg for sometime and that I probably had a few people worried. So later that morning I called Natalie and she updated the blogg. As Kylie and I were chatting away we ended up discussing our faith. I explained how I felt and what my friend had told me that day about her faith. I had begun thinking that if after all that she had been through she could still have faith then maybe there really was something to believe in. Kylie and I started discussing all of the things that had happened to me on my journey with cancer. We started to see all of the ‘lucky’ things that had happened and were especially amazed with Arielle’s birth. The word miracle started to come up. All of a sudden it hit me like a lightning bolt. For weeks my family had been trying to tell me of the canonisation of Catherine McAuley and because I had lost my faith I simply would not listen. Then I started to realise what they had been trying to tell me – people were specifically praying to Catherine McAuley for me to be healed. It then dawned on me all of the connections I had –
* My auntie Joyce is a Mercy sister and had just completed a pilgrimage in Ireland for Catherine McAuley and had also visited Lourdes and prayed to St Bernadette for my recovery
* I went to Catherine McAuley high school
* I was being treated in the Mater hospital which is run by the Mercy sisters
* The Mater hospital is on Catherine McAuley place
* My cell counts had recovered on the 10th of May – the Mercy sisters arrived in Brisbane at 10pm on the 10th of May 1861

As you can imagine I was ecstatic. I had been feeling pretty miserable in relation to my long term survival. Only 10% of people with Hodgkins are not cured with the initial ABVD chem. I had been one of the unlucky ones. Then had the ESHAP treatment and that did nothing at all for the tumour. So rare is this chain of events that the TMC treatment I had had never been given before in Australia. Also getting three infections, having such low blood oxygen levels and getting a pulmonary oedema again were not common complications of high dose chemo (so basically I was unlucky all round in this respect). All of a sudden I realised that I had to go through all of this to make sure that my recovery is seen as a miracle by the Vatican. Knowing this I had restored my faith totally and it was just the ray of shining light that I needed. My spirits were very high.

Mother’s day was a lovely day. Tiernan brought Arielle and Tiernan in and we had a lovely morning tea. Arielle has a little red and white polka dot tea set that mum and dad bought her and we used that to have our lovely morning tea. Then in the afternoon, mum, dad, Jess, Tim, Ben and Rebecca came in and we had a high tea (we had bought mum some gorgeous high tea pieces and Jess and Tim had painstakingly prepared a lovely high tea). It was a lovely day.

On Monday morning I found out that during the next round of chemo (BEAM) I only stood a 1% to 2% chance of the treatment actually killing me. Between finding out this news (I thought it was much higher), knowing about the prayers that were being prayed for me and knowing I had one of the best haematologists around I was feeling on top of the world. Unbeknown to anyone at the time, I was actually starting to experience something called hypomania. It is a psychiatric condition (similar to Bipolar disorder) that in my case was caused by a combination of the drugs I was on. As my counts had recovered more I was allowed out for some day pass. Tiernan was in child care and I decided to go with some friends to high tea and then to a day spa. I was in quite a state (high) by the time I left the hospital and I actually turned up to high tea in my pyjama top with trackpants and pink slippers. I was due to get changed (mum brought some clothes along as I had no normal clothes left at the hospital just pyjamas and trackie pants) but decided I would not bother once I got there – that goes to show you the state of my mind at the time to turn up to high tea in pjs!! (And the photo of me holding Arielle proves it!) After the day spa I visited Cam and the kids at home.

In the wee hours on Tuesday morning I was wide awake and decided to call Natalie. I spent 2 hours on the phone to Natalie in London – she is in hysterics whenever she recalls this conversation as she said I sounded a little more than slightly loopy. After Natalie decided to stop talking to me I called my aunty Rita in Sydney and at least another hour on the phone. A little later I started having episodes of lucidity with a high feeling and episodes of dysphoria. The episodes of dysphoria were dreadful. When in this state it was like the movie Ground Hog Day. I felt that events kept repeating themselves and I was petrified that either I had died and this Ground Hog Day thing was hell or that I had suffered brain damage as a result of the low blood oxygen levels I had sustained. Even writing about it now, weeks later, I still vividly remember how petrified I was. At this stage there was a concern that there could have been something wrong with my brain so I had a full body CT scan. As we now know the scan revealed no problems with my brain and also showed the wonderful shrinkage of the tumours. I was started on some drugs to control the hypomania and also given sedatives to keep me calm until the drugs kicked in. The rest of the week is a blur and I only have vague recollections of the week. I remember being so tired that mum and a nurse had to feed me! I basically slept the week away.

Again I will plagiarise from Wikipedia to give a definition of hypomania for those that are interested (some of the people that spent any time with me during this period will probably laugh at some of this). Hypomania is a mood state characterized by persistent and pervasive elated or irritable mood. People with hypomania are generally perceived as being energetic, euphoric, overflowing with new ideas, and sometimes highly confident and charismatic, and unlike full-blown mania, they are sufficiently capable of coherent thought and action to participate in everyday activities. One in the state of hypomania might be immune to fear and doubt and have little social inhibition. They may talk to strangers easily, offer solutions to problems, and find pleasure in small activities. However, a large number of hypomanic episodes can be dysphoric. Subjects can be hostible, irritable, and in some cases, rageful. They may make poor choices and display little to no sympathy for other's emotions. A hypomanic episode includes, over the course of at least 5 days, three or four of the following symptoms, depending on whether the predominant mood state is elation or irritability:
* inflated self-esteem or grandiosity;
* decreased need for sleep;
* being more talkative than usual or feeling pressure from within the thought process to keep talking (i.e., cannot stop until the story is done);
* flight of ideas or the subjective experience that thoughts are racing;
* easy distractibility and attention-deficit (superficially similar to attention deficit hyperactivity disorder);
* increase in psychomotor agitation; and
* steep involvement in pleasurable activities that may have a high potential for negative psycho-social or physical consequences.
In the hypomanic state, people may feel like they can't slow their mind down, and that all these speeding thoughts are amazingly perfectly crafted.

Luckily they were able to give me medication to control the hypomania and life felt much better and got back to normal. My cell counts slowly made it to full recovery (white cells, red cells and platelets) and I recovered from the infections. I no longer needed my daily cocktail of transfusions and IV antibiotics. I was finally ready to come home after weeks in hospital on Friday May 25th.

I spent 10 lovely days at home. I was very tired and my muscles were very weak to start with. As the days progressed though my muscles became stronger and I was able to do more with Arielle and Tiernan. I had a lovely time just being at home and enjoying the company of Cam and the kids. I had some visitors during this time and also had a few little outings which were fun. I managed to pick up a bit of a cold and last Thursday I had to have another CT scan just to make sure everything was ok (I had started night sweats again). We had the wonderful results that both tumours are almost completely gone. It was the most fantastic news I could have received. I still had to have the chemo but at least now I knew I really had a chance to beat this cancer.

So on Tuesday night I came back into hospital and on Wednesday I started on the BEAM high dose chemo. The BEAM treatment involves
* Carmustine on day 1 – this drug is in an alcohol base as it won’t mix with saline – it made me revoltingly sick but thankfully was only for one day
* Cytarabine and Etoposide on days 2 to 5 – I am feeling fine on these drugs but that is not surprising given that these two were also in the ESHAP regime that did nothing for the tumour – no need to worry though as the tumours are much smaller now so these drugs may now work on them
* Melphalan on day 6 – this is supposed to make you feel very, very nauseous and is apparently one of the worst chemo drugs to have. Luckily it is only one day though and I can have Phenergen to knock me out for most of it!

So finally I am up to date on my blogg. Wow what a mammoth effort this has been. Hopefully now I will manage to update it a little more regularly.

Quick Post I am exhausted

2007-05-24T20:48:00.000+10:00

This is going to be a super quick blogg entry as I am very tired. Today I had a lovely day at home with Cam just relaxing and enjoying our house finally. We picked up the two little munchkins from daycare and had some lovely playtime, then a yummy dinner (spaghetti my fave) before they brought me back to the hospital. They stayed for a little visit and then went home.

I cannot believe how tired I can be from just being out of bed! I also had my flu shot tonight. It did not hurt one bit - to the point I had to ask if the needle had gone in yet (it had)!! Someone on the ward has the flu and Kerry has ordered that everyone on the ward have the flu shot to make sure they don't get a flu breakout (apparently that happened years ago).

I had a little investigative operation yesterday on my bottom (I have lost all dignity now) and the results were all good. I do not have a fissure but instead have a very irritated skin tag which usually he would have removed however given my counts will be dropping with the next chemo he said I would be better to get it removed once this is all over.

I will be allowed to go home tomorrrow (yippee) and I will have 10 days at home. During this time I am to rest, rest, rest. I then go back to hospital on Tuesday June 5 and start chemo on Wednesday June 6. The BEAM will go for 6 days and then on Tuesday June 12 my stem cells will be put back in. I am likely to have no white cell (and therefore immune system) for about 8 days if my last experience was anything to go by. So my danger period for infection will be from Tuesday June 12 to Tuesday June 19. Once I make it through that it should be a smooth ride.

I still have not updated the blogg for everything that happened during this treatment cycle but I promise I will get to it.

Bernadette

Finally I am writing in my blogg

2007-05-19T12:15:00.000+10:00

Yes finally I am writing on my blogg - it won't be a long one as my hands still shake a fair bit. The past few weeks have been extremely difficult but the end result that the cancer has shrunk so much is so wonderful. My tummy troubles have eased now and I am now just waiting for my body to make a full recovery. Today my haemoglobin level was 98 (above 115 is normal - I am having a blood transfusion today), my white cell count was 1.8 (4.5 or above is normal) and my neutrophils are 1.2 (above 1.5 is normal). The reason they have all dropped is that I am off the daily injections to boost everything and now my body has taken over cell production. Once all of my counts are normal then I will be allowed home. Hopefully that will be sometime soon. Then they will start the next round of chemo once I am strong enough to cope with it but they do not want to wait too long so it will likely be around the 29th of May still.

On another note altogether there is something I would like to tell everyone about - I will write another blogg later on with the full details however right now I am just going to blurt it out. This will be hard for some to believe but there was a nun called Catherine McAuley that started the Sisters of Mercy (an Order of Catholic nuns). The Vatican is going through the process of making her a saint (beatification). In order to become a saint she needs to perform 3 miracles - she has already performed 2. There are many people around the world being prayed for for the third miracle and I am one of those people being prayed for (pretty exciting). Obviously hearing all of this has restored my faith in God and a few other things that I will explain later also have led me to believe in heaven and reincarnation.

Anyway I would like to ask all of you who feel comfortable in praying to say the following prayers -

Prayer for Beatification of Catherine
Loving God, you chose Catherine McAuley for the service of your peoplewho are poor, sick and uneducated. You inspired her to found the Sisters of Mercy so that these good works might endure. Give to each of us a portion of her compassionate spirit and an ardent desire to serve your suffering people. Bless all our undertakings and grant that union and charity may always thrive among us.Graciously hear our prayer for Catherine, and by granting the favours we ask through her intercession, hasten the day when her sanctity will be celebrated by all the church.Amen

Prayer for a Sick Person (that would be me!)
O beloved Catherine, through the power of my most compassionate Lord and Saviour Jesus Christ, I humbly beseech you to look with love and pity on Bernadette who is ill at this time. Stir up in me the same passion that impelled you to respond to the needs of your time. Bless me with the sure knowledge of your presence and with a complete trust in your providence. Use once again your spirit of compassion and your ardent desire to alleviate suffering and to restore her/him to full health if it is God's holy will. I ask this in the name of Jesus who lives and reigns with the Father in unity of the Holy Spirit. Amen

Thankyou everyone for your love and support.

Love Bernadette

Scan results are in - Good news we have shrinkage

2007-05-17T18:07:00.000+10:00

Hi Everyone,
its Natalie here Bernies (Bernadette to everyone else) little sister in london, playing PA again.. The results of the latest scan are in – its good news – the cancer has shrunk. Mass 1 (the original cancer) in the last scan was 47mm X 47mm this one has now shrunk to 12mm X 25mm. Mass 2 (the second cancer they found in Feb) in the last scan was 26mm X 26mm and this one has shrunk to 12mm X 18mm. During this round, she did get rather sick, and needed to spend a few days in intensive care as she got a few infections which she caught from her own body. But her determined fighting attitude and the wonder of modern medicine, she is now feeling much much better (she has started bossing us all around again and giving us orders) and is recovering well. She still has a few tummy problems but hopefully they will also get better soon. Mum has been at the hospital at lot helping take care of her.

They are planning on starting round 2 (her 2nd stem cell transplant process) on around the 29th May (as long as she has recovered enough by then otherwise it might be slightly delayed). She will start by having 6 days of high dose chemo called BEAM, and then she will get given some of her stem cells back at day 7 and then she will need to rest and recover. We hope she will recover in the same speedy time as she has for round 1 (the doctors have been impressed with her quick recovery). Then she will have about 1 month to recover and then they will start a month of radiation treatment, and (cross our fingers) she will be cancer free (in remission).. BUT, if at the end of all of this, if that stubborn cancer is still there, the doctors now know of a few other types of high dose treatments that can be used. And she will still have enough stem cells for at least another 2 stem cell transplants (if that cancer thinks it can win, it doesn’t really know who it is fighting, my sister is more stubborn and will fight stronger than anything, so if it knows what is best for it, it should just give up now).

Bernie requests, that if everyone can pray to Catherine McAuley for her to make a complete healing.

Bye for now - Nat

Alive and still kicking

2007-05-12T05:10:00.000+10:00

Hi this is Natalie Vella, bernadettes little sister in london being her PA (typing what she is telling me to write)..

Bernie (Bernadette to everyone else) is very sorry she has not updated her blogg recently as she has been pretty busy keeping herself alive. Everything is good now and there will be a full update some time soon, but Bernie was worried that people may worry as she had not written for so long. I have had to type this for her as it is currently 5am Saturday morning in Australia and the last time she was asleep was 7am Friday morning. Despite all of that, her day has gone from good to better, peaking at 3am in the morning with a revelation her and her friend Kylie made. At 4am they both took sleeping tablets to try and get to sleep, and Kylie is fast asleep but Bernie is still completely wired and is she is only just starting to get tired and she could not focus enough to type so I have done it for her.

Love to all, and after reading this give extra specials cuddles to the people you care about and one last thing she asks is everyone to say a pray of thanks to Catherine McAuley and God.

Just started artificial feeding

2007-05-01T18:04:00.000+10:00

Well I have just started TPN which is basically where they feed me a bag through my port a cath over 24 hours that contains all of my nutritional requirements. My gastro tract (GI) has decided to pack it in and therefore I am not absorbing my food - it was one of the side effects of the chemo that they were prepared for so it is not really that bad. The TPN will allow me to not worry about eating and give my GI tract a bit of a break. The good news though is that I am allowed to eat anything I do feel like so it is the best of both worlds. I am hoping that once this TPN kicks in my energy might pick up a little. The tiredness is pretty bad still but if in 6 months I am at home playing with the kids and Cam then it is all worth it.
Yesterday I had a nice day. Cam and Tiernan came and picked me up in the morning and I spent the morning resting at home (yes resting - I actually sat on the couch and even spent some time sleeping in bed). It was an effort to get out but it really picked up my spirits. Jane and Lucy visited in the afternoon and they brought me back to the hospital. I had a blood transfusion last night and actually fell asleep at 7.15pm. I then slept until about 1am but had a fitful sleep the rest of the evening. I felt pretty miserable this morning and did nothing but rest but that is what I am here to do! Mum came in and visited with some of her special home made chicken soup for lunch which was just heaven. She has left me a good supply of that and dad's yummy chicken and corn soup and they are just perfect for how I am feeling - the medicinal properties of home made chicken soup never ceases to amaze me! Then Cam and Arielle came in and had a visit which was just lovely. I don't often get to spend time with just Arielle and it was some really special time and I got lots of lovely cuddles and chats. Arielle then had a little nap and Cam and I got to just sit and be - it was so nice. Once we were well rested, Sue brought Tiernan in and he had a lovely visit. He was such a well behaved little man - I cannot believe how much he has grown up - he has coped with so much in his little life - I am really proud of him.
So now it is time for me to rest again - it looks like I have gone to granny hours - it is 6.15pm and I am thinking about bed! My stem cells will go in tomorrow. They said I will still be going downhill for a few more days but at least the process will be underway. I hope everyone has a lovely night.

Feeling tired

2007-04-29T16:06:00.000+10:00

Well the chemo has certainly kicked in on my body - I have never in all my life felt so fatigued. I am usually the bound out of bed kind of person but at the moment I am spending most of my time lying down in bed often too tired to even read or watch tv. This is a good thing though as it must mean the chemo is working. My counts are slowly on their way down at the moment but I am not in danger zone yet. I am being very diligent with mouth washes and hygiene and hopefully I will be able to stay reasonably well.
Yesterday I had the most lovely brunch with my mum's group. Sarah picked me up and we went to Tenerriffe where we met the other girls and the six of us got to have some long overdue chats. It was definitely food for the soul and we are hoping it will be a monthly event. I was quite tired afterwards and spent the rest of the day in bed. Sue and Tiffany brought Tiernan and Arielle in (Cam is up at rescue helicopter) and I had a lovely visit with them. The kids always cheer me up. After that Jess and Tim came for a visit and brought in a lovely polar fleece blanket which is currently wrapped around me (as I am tired and losing weight I am feeling so cold). They also brought me in some Froot Loops - I am having difficulty facing breakfast and thought some Froot Loops might do the trick.
Today I rested in bed until lunchtime and mum and dad were going to bring in take away Chinese. I decided it would do me good to get out so we went to the Chinese restaurant instead. It was really yummy and I ate a lot and even brought some chicken and corn soup and wonton soup back with me to have for dinner tonight. Mum and dad left a little while ago and I am about to go back to bed now and maybe watch a DVD.

Day 3 of TMC is over

2007-04-27T17:01:00.000+10:00

Cam and I in WA before all of this

Well I have finally made it through this regime of high dose TMC (Thiotepa, Mitoxantrone and Carboplatin). The plan now is to rest and recover a little for the next few days. Then the plan is

Wednesday 2 May - stem cells reinfused (just like a blood transfusion)

Thursday 3 May - start on my daily Neupogen injections for 10 - 12 days

In about 2 weeks I will have a CT to see if this worked at all

I will then stay in hospital until they consider me well enough to go home and rest - by that stage I need to have good cell counts as well as being able to get enough nutrition in (this chemo may cause some effects on my gastro tract)

After we get through this then I will be going on to have a second high dose chemo regime called BEAM with another stem cell transplant (my own again). They have warned me that I will be extremely fatigued from now until day 100 post the second transplant and then not to expect normal activity levels for up to 2 years. As this is an unusual situation and they have not given the TMC protocol here before I am a bit of a test case by the sounds of things so we will just have to take each day as it comes.

A point to note about stem cells - Cam was reading a really good blurb about it and thought it might be handy for me to post it here...

What is a stem cell? Stem cells originate in the bone marrow and are referred to as 'seed' or precursor cells. Bone marrow is the spongy tissue found in the cavities of your bones where all of your blood cells are produced. Each type of blood cell in the bone marrow begins life as a stem cell.

The stem cells then divide and form the different cells that make up your blood and immune system. These include white cells that fight infections (leucocytes and neutrophils), red cells that carry oxygen (erythrocytes) and platelets that enable blood to clot thereby controlling excessive bleeding.

Under healthy circumstances stem cells are found in very small numbers in your blood stream (peripheral blood) and in larger numbers in your bone marrow.

Stem cells can be stimulated to increase their numbers in your peripheral blood. This process is called mobilisation. Once the stem cells have left the bone marrow and appear in the blood stream they can then be collected for the stem cell transplant.

The high dose chemo obliterates your bone marrow and therefore cell production. This is when the stem cells are reinfused into your body and they then take 10 - 14 days to graft and start to produce mature bone marrow cells.

Hopefully this will help everyone understand a little more about the process.

So far it has not been too bad. I fell a little nauseous for most of the day but there has been no throwing up and no diarrhoea. The head spins have been controlled with drugs (I take about 20 tablets a day in addition to the volumes of drugs going through my port). The only bad side effect is absolute extreme fatigue. I have never in my life felt so tired. I am spending most of the day lying in bed either sleeping, dozing, listening to music or watching DVDs. I dont even have the energy to feel bored - having to get out of my bed to go to the bathroom is an adventure in itself! But dont feel sorry for me - this is a road to recovery - a road to the light at the end of the rainbow. Sure enough the next few months will be tough but it will be worth it. You never know I might even learn to relax and like it!

If I am feeling well enough tomorrow morning I might be allowed out for a short visit as my mum's group (mum's only) are going to brunch and I would love to catch up with them - so fingers crossed if I get an early night tonight that I will be up for a few hours day pass. On Sunday mum and dad come back from Stradbroke and are going to a BBQ at Ben and Rebecca's - hopefully if I am well enough I will be able to pop over to that for an hour or so as well. Cam is at rescue helicopter this weekend and the munchkins are with Bob and Sue so they will be bringing them in for a visit to me as well which will be nice. So all in all it should be a quiet restful weekend.

The house is getting there a little more now and hopefully next time I am home I will be able to take some photos. We cannot wait to all live there as a family again. We are all missing each other so much but Cam is really great with the kids and he brings them to visit me and puts them on the phone to talk to me but it will still be so nice when I get to go home for good.

Day 1 of TMC

2007-04-25T20:06:00.001+10:00

Well this will be an extra quick blogg as I am so very tired today. I have been out and about the past few days and then the chemo started this morning. Today involved three drugs one of which made my urine bright blue. The second one was pretty uneventful but the third one gave me dreadful headspins and dizziness so I have been on a tonne of anti-emedics today to combat and prevent side effects. I have felt a little nauseous but have not had any diahoarea or vomiting which is good. Jane spent the day with me today and that helped the day go much faster and it was lovely to have time to have some girly chats. I will write more tomorrow when I am more awake.

Results are in

2007-04-20T15:33:00.000+10:00

Quick update as I am about to go home for a visit - I have received the results and the tumour is definitely Hodgkins. Kerry has decided to give me some high dose chemo starting next Wednesday and involving three drugs called Thiotepa, Carboplatin and Mitoxantrone. The chemo will go for three days and will make me feel quite nauseous. Then the following Wednesday they will then give me the stem cells back. That week I will also have a CT scan to check on the progress. Once I recover from all of that (between 3 and 6 weeks) I will then get a month at home and then have another high dose chemo regime followed by another stem cell transplant (my own stem cells again). Then I will have some radiation. If that all does not kill the cancer altogether then they still have a few other drug options that they can try on me to either kill the cancer or at least keep it under control to give me some more time. So fingers crossed this all works!!

No I haven't fallen off the planet!!

2007-04-17T21:55:00.000+10:00

Well it has been nearly a month since I wrote last! I thought I would start my blogg with a photo of our adorable children. We bought a new couch last week (yes I know it is white and yes I know that white and children don't usually mix but it looks so good in the room and it is leather so it will clean) and on Sunday Tiernan discovered that he and Arielle can both fit on the armchair and he asked me to take a photo of my two beautiful children.
A few notable things that have happened of late with the kids that will make you laugh - the other day Tiernan was having a shower with me and he said "mum you need to shave your legs" so I asked him why he thought I needed to shave my legs to which he replied "you have lots of whiskers on them!". Needless to say after being told I needed to shave my legs by Tiernan I promptly shaved them. Little miss Arielle started solids a few weeks ago and she just loves them. She will eat anything put in front of her however it has even further diminished her liking of her bottle. She throws big tantrums sometimes when you even bring the bottle near her and on Friday we had a call from childcare as she was absolutely refusing her 12.30pm feed and screamed and yelled when they even picked up the bottle and she could see it. In the end she skipped the feed altogether and was happy as larry until her next feed at 3.30pm! Cam and I had a giggle and wondered what sort of phone calls we would get from her school when she is 16!

Well what have we been doing with ourselves for the past few weeks. I was released from hospital on the Thursday (March 21) and then Tiernan, Arielle, Nat, mum, dad and I went to Sydney on the Friday morning. We had a lovely time in Sydney catching up with everyone and Tiernan had lots of fun playing with his cousins and Arielle loved meeting all these new people who told her how gorgeous she was. We came home from Sydney on the Monday afternoon having had a wonderful time. On Tuesday unfortunately I started feeling a little unwell and by Wednesday Tiernan was also unwell.

On Wednesday we received the terrible news that one of the little boys in our mums group had drowned. It was devastating news and even now I still struggle to believe that such an adorable little boy is no longer here. I delayed chemo and we went to the funeral a week later and although it was the saddest funeral I have ever been to it was also the most beautiful service - I had lost a lot of faith about afterlife lately yet somehow his service restored a lot of that faith I had lost - I truly believe he is still out there in spirit and still by his mum's side and shining as a bright new star in the sky.

During this time Cam, Tiernan, Arielle and I all managed to fall ill. The kids were only sick for a few days however Cam and I went through a see saw of being sick for a few days then getting better and then getting sick again. Natalie also went back to London which was very sad. I really miss her so, so much. Then it came around to Easter. We had a friend, Theresa, from Melbourne and friends from Perth (Collette and Tony and their boys) come and stay with us for Easter. We had a lovely time and Tiernan loved having new friends to play with. On the night before Easter we hid eggs all over the house and yard and on Easter morning Tiernan was so excited he was jumping out of his skin - he struggled even getting the words out of his mouth when he came in to tell us that the Easter bunny had left eggs all over the house. The three boys managed to find all of the eggs and were very good about sharing them. Arielle also managed her first taste of chocolate much to our shock. She had been given a fluffy bunny holding a big foil wrapped egg. She loved holding it and as it was wrapped I did not see any harm in it. I was chatting away when I heard a slurping noise - panic set in as I thought she must be choking on foil (yes I know I should not have left a foil wrapped egg in her hands). I looked down and was amazed to find that she had actually unwrapped the foil and was slurping away on the egg. Luckily it was a large enough egg that she had really only sucked it and could not bite into it. I promptly took it off her and we were presented with the hugest tantrum and scream session I have ever seen her deliver (and she can do some beauties). Needless to say we no longer leave any chocolate (or any other food for that matter) within reach of her - she even tried grabbing a beer out of Cam's hands the other day! Our Easter Sunday was a lovely day with some more friends (Matt and his family and Brendan and his family) came over for a BBQ. Unfortunately my health continued to go downhill and chemo was delayed another week.

On Sunday just gone I was still not totally better however I came into hospital anyway as I just wanted to get the chemo over and done with. During the past few weeks I had been having a few problems with dizziness, night sweats, numbness in my hands, difficulty breathing, chest pains and this silly cold that just would not go away. I started my chemo on Monday morning and Cam came in and visited last night. Then this morning Kylie and Emily visited and Cam came in with the kids. Whilst they were here I had a full body CT just to be sure nothing untoward was happening. Kylie and Cam (and kids) left and then mum arrived soon after. Whilst mum was here I called Qld Xray to see if my results were ready which they were. I sent her down to pick them up. She brought them back to the room and I opened them. The results had a lot of medical mumbo jumbo but the crux of the matter was that it appeared that the new tumour had grown. I tried calling Kerry to see if I could talk to him but his secretary was not there. Tim then arrived to have his blood test to see if he was a stem cell match (got Nat's results this week and she was not a match and we are still waiting for Ben's results). My friend Gayle popped in as she had been going to Kerry to have her review and just as it was her turn she was told that Kerry had to urgently go up to the ward to attend to a patient. I said that was good timing as I needed to talk to him about my results as they did not look good. So I buzzed the nurse to ask him to ask Kerry to see me whilst he was on the ward. Before the nurse answered the buzzer Kerry and Dianna (Nurse patient educator) walked in the room and asked to speak with me alone. I knew something serious was happening. The bad news is that the new tumour which was 3cm on March 7 is now 4.7cm diameter. Previously it had been near my lung and heart and pulmonary artery and unfortunately now it was touching the lung and the heart wall and was also around the pulmonary outflow artery - all in all not good news. Basically it means that this tumour is not reacting at all to any of the chemo ("kicking the chemo in the face" were Kerry's words). So they stopped the ESHAP chemo immediately. Kerry is very concerned as the growth is quite aggressive and obviously being so close to my lung and heart is a huge worry. I am having another needle biopsy tomorrow to determine whether it is definitely Hodgkins (last one had inconclusive results). If that does not give conclusive results then I will have to have a thoracic surgeon do a biopsy under a general where they deflate my lung and stick a tube in - not fun! They need to get an absolute result though to make sure it is in fact Hodgkins. If it is not Hodgkins (I think that would be the preferable option at present) then I would have to start on whatever treatment is suitable for that type of cancer. If it is Hodgkins (most likely) then unfortunately the outcome is a little dicey. There is apparently another chemo regime available however seeing as the tumour has already been resistant to chemo it is unlikely to respond to that one and at present they don't think I have the time to try a treatment that is unlikely to work. So the only option available is probably to have the BEAM (blasting) chemo and then have my stem cells put back in me. This is not ideal as they usually use this chemo on tumours that have been got under control using other forms of chemo and not agressive active tumours. So again the chances of success don't seem that great. Kerry is concerned that with it being so agressive and so close to heart and lungs that I don't have a lot of time to play with as far as treatment goes. I was not at all surprised that the tumour had grown as I have had a gut feel about that for a few weeks however I was totally shocked that this chemo was stopped and how serious it is - I thought that it would just mean I would have to have a few more rounds of ESHAP before going on to the BEAM and stem cell transplant. I will talk more to Kerry and Dianna tomorrow to try to understand a little more as I am not sure how much I absorbed in my state of shock today.

So right now it is just a waiting game until we get the biopsy results and know what we are dealing with. So lots of prayers are more than welcome and I will keep in touch as much as I can.

Fantastic News

2007-03-20T17:59:00.000+10:00

This photo is very rare - as Cam has just laid our lawn on the weekend we are actually allowed to use our hose to water the lawn for days. Tiernan was helping Cam water the lawn and seeing as he had an audience that would laugh at him (dad, Nat, mum, Ben and I) he decided to attack Cam with the hose!!!

Here are a few updated photos of the house - more will come soon

Kids playroom

Kitchen

Pool and poolhouse

A few adorable photos of dad with Arielle - don't they make your heart melt!! Arielle just loves her nunnu!

Well I had another stem cell collection today and all went well. The stem cells were collected from 7.30am to 11.30am. Nat, mum and Nunna then came in to visit and spent the afternoon with me. We had a lovely visit and it was fantastic to catch up with Nunna again. They had spent the morning with the kids and Tiernan was very excited and loved taking Nunna on a tour of the house and explaining how everything in the pool worked (he knows more about the pool pumps than I do!).

Where is the fantastic news part you ask - well as I previously mentioned they take two lots of stem cells to make sure they get enough for a transplant. The counts from yesterday's collection were not available this morning and it is highly unusual to get enough stem cells in one collection so they went ahead with today's collection. This afternoon I found out that yesterday's collection collected 17 million stem cells which is close to a record for a single collection. I only needed 5 million for my transplant!! So once they take into account today's collection I will have enough stem cells for multiple transplants should I ever need them. The even better news is that this means that after the next round of ESHAP chemo I will not have to have the high doses of Neupogen and so hopefully this will mean a lot less bone pain. And even better news is that I may be allowed home tomorrow and if not tomorrow definitely Thursday - I am absolutely thrilled!!

Frankenstein loves Morphine

2007-03-19T23:53:00.000+10:00

Me with the machine that takes my blood, sorts it, takes the stem cells and then returns the blood without stem cells back to me
The vas cath tube in my neck - yuk

I'll bet the title of my blogg made you look twice!! Well on Sunday I had a lovely visit in the morning from Andrew and Linda and Abby and then I went home for the afternoon. Cam and Tiernan were at home and then mum, dad, Nat, Ben and Arielle all came and we had a birthday cake for Ben. It was a lovely catch up. Natalie drove me back to the hospital and stayed the night. Jane, Amanda and Kylie came over and we ate pizza for dinner and had a great time catching up. The only bummer about Sunday was that I was in agony by the evening from bone pain from white cell production and the stem cells coming out of the bone and going into the blood. It is pain that goes on the same scale as labour pains. They tear through your body concentrating on the pelvis, hip and thigh bones for me and the intensity is so severe that I cannot move or stand up when the wave comes. So when I did arrive back at the hospital I went straight to the nurses station and asked for a Morphine injection. Once I had that I felt much better.

I continued the morphine injections every 4 hours and then this morning they were able to change the order to have it put through my port instead of an injection. The downside is that it does not last as long and the last hour the pain becomes pretty bad. I have decided to go back to the injections from my next one on as I really don’t like that much pain. I had a platelet transfusion this morning. They gave me the pre meds for that and between that and the morphine build up I was knocked out and poor Natalie had to struggle getting me into the shower (thank god she was here with me) and I was barely able to get sentences out! After that it was the wonderful news that my neutrophils had gone up to 1.3 and another test called CD34 which needed to be 1 in order to have stem cells taken was 11!! It was one of the highest results they had seen and were very pleased. My hb was low so I am about to have a blood transfusion now. Mum and Nunna arrived and poor Nunna saw me in the worst state possible – I was falling asleep as I was talking and was probably talking total gibberish! I went down to have the vas cath (Frankenstein thing) put in and Natalie accompanied me. They took me in the room, set me all up and were about to start when the doctor came in and said my platelets were too low – I explained that I had just had a platelet transfusion but she said they were still too low and I would have to go back upstairs and have more before they could do the operation. So they took me off the table and put me back on the bed and then the nurse rang the ward to come and get me. The ward then explained that I had actually had 4 units of platelets already and could not yet have any more. This info was relayed back to the doctor who said she thought I had only had 1 unit and they decided to go ahead with the op. So it was back on the table for me! They then gave me a drug called medazaline which spaces you out and makes you not remember anything. So my last recollection of the event was them putting in the local anaesthetic into my neck. Then I was back upstairs. Then I went down and had the stem cells taken which took about 4.5 hours and I slept for about 4 of it. Mum, Nat and Nunna stayed with me for about 2 hours of it and I managed a few conversations but who knows if I made any sense! It was really lovely to have them with me though.

They took my blood again at the end of it all and my platelets are still low so I am having another platelet transfusion after the red blood transfusion. I also have really low potassium so I am having a high dose potassium for 4 hours and then a low dose for 24 hours which added to my 4 hourly morphine means that I will have lots of action tonight (they have to do really regular obs when you get transfusions). Hopefully the pre med and the morphine will mean I get a good sleep.

Counts are low but feeling good

2007-03-17T14:56:00.000+10:00

Well as the doctors predicted my counts are the worst they have ever been - my hb was 104 (below 100 they transfuse me), my platelets were 50 (normal is 150 to 400) and I have already had a platelet transfusion yesterday and my neutrophils were (drum roll) 0.00 even despite being on double the dose of Neupogen for my weight. So hopefully today is rock bottom and I go up from here! As far as how I actually feel - well not too bad really - a little tired but otherwise ok. Yesterday I spent a good percentage of the day asleep. I ended up having a platelet transfusion and they always give me a pre med before a transfusion and it always knocks me out!

On Wednesday I was lucky enough to be allowed home for an overnight visit. It was just wonderful. Amanda picked me up on the way to the library and I went to mums group at the library. It was a fun morning with Tiernan. Then it was home for the rest of the day and I got to spend some lovely time with Cam and the kids. I decided to let Tiernan help me with my injection. He was so excited about doing an operation on mummy and so proud of himself (I put the needle in and let him push the syringe). Tiernan was so gorgeous when I put him to sleep - he said to me "mummy are you all better yet" and I said not yet but that I would go back to hospital and they would try to make me better. Then he said "mummy you don't need to go back to hospital. I can do operations on you and give you needles to make you better and then you don't have to go back to hospital and you can spend all of your time at home with us". It broke my heart! On Thursday we ran out of milk and Tiernan and I walked to the shop to get milk - well he rode his trike and I pushed it from behind as after about 3 minutes he said it was too hard and he wanted to go faster! Then I walked the kids to daycare in the pram which was just lovely. It is funny how it is the simple, normal things I miss the most.
Then mum, Natalie and my aunty Maryann came over and together we did the groceries (again another normal thing I miss doing - crazy I know). Luckily I was hungry and we bought a lot of things for me to snack on - I always try to shop when hungry as I have a better chance of buying snack foods that I hopefully end up eating. We then had pizza for lunch (Cam took a break from leveling the backyard and joined us) and then they took me back to the hospital. Tim then visited as well and we had a lovely time catching up - lots of laughs. Natalie did her blood test to see if she is a bone marrow match for me but it will take a few weeks for the results.
We had a great talk with my doctor Ashsish (well my doctor's replacement - Kerry was away and Ashish is his replacement when he is away). Ashish tends to be a little more giving in relation to information and so it is always great to talk to him. It was an absolutely fascinating talk. It started out by Natalie telling him that he needed to get me better by next Jan as she wanted me to go to Africa with her. His response was basically no chance was he going to agree to me going to Africa and so started the discussion on stem cells. Basically I will be starting from scratch again after my transplant (using my cells). The stem cells will grow brand new white cells (and hence immune system) and it will take time for it to mature. I also need to have all of my vacinations again as any previous vaccines go when I get the new stem cells. So for a long time after the transplant I need to be more careful than usual in relation to keeping clear of germs. Then we started discussing survival rates and success rates. Basically after this treatment I stand a 30% chance of going into remission and remaining in remission for life which means I also have a 70% chance of either the treatment not killing the cancer and/or getting a relapse. With each relapse the chance of another relapse gets higher and that is where your survival rates decline. Hodgkins can occur in lots of places in the body and if the relapse is not in the mediastinal area (chest) then you can actually live for quite awhile with Hodgkins. If however it is in the mediastinal area then the chance of the tumour getting in the way of your heart, lungs or windpipe is obviously an issue and also your body can only stand so much chemo. The bad luck on my part is that both my tumours have been bulky and in the chest area. Then he talked about the fact that if this treatment does not kill the cancer then we would try a donor stem cells because this would actually give me a whole new immune system to fight the cancer. If it still recurrs after this treatment then it means there is some underlying problem with my immune system and its ability to fight the cancer cells at all. By giving me a donor's stem cells they give me a new system that hopefully has the ability to fight the cancer cells. I did a little research on the internet and found amazing stuff they are doing in research. Apparently stem cells each fight a specific thing. They are able to identify which stem cells fight which diseases and they are working on being able to reproduce these outside the body (apparently very, very difficult) in order to try to make cancer vaccines so to speak. Who knows where they will be in the fight against cancer in 20 years.
Back to our discussion. Then we were talking about donor stem cells. He said that they will always pick a male match over a female match as for some reason they have more incidence of graft versus host disease when the donor is female. Then if they have 2 males that are a match they will test the bloods to see which male has the most immunity in their blood and use that one. Then (this is the interesting part) when the stem cells go into the host (ie me) it creates new blood for me and I would then have identical DNA blood to the donor. So if the donor is male, my blood would then show as male blood. Taken to the extreme if I were to commit a crime and the only thing left behind was my blood they would not be able to tell my blood from my donor's blood!!
I found the entire discussion thoroughly fascinating! That is all from me for now. I hope everyone has a lovely weekend.

Want a laugh

2007-03-14T08:16:00.000+10:00

I am entering modern times and have worked out (with a little help from Nat, Ben and Tim) how to put some video of the kids up on the net. So if you want a good laugh (they are both little performers) then click on the following link. Whenever I put new video up I will put a link from my blogg. http://s155.photobucket.com/albums/s320/bernadettemartin/

I had a lovely day yesterday. Nat and mum and Becky, a friend that I have not seen for about 12 years, picked me up and we went to Tiernan's dance class. Tiernan goes to dance classes on a Tuesday with Greta and Mia (Jane's girls). They have a great time and we always wonder how the teacher has the patience to teach a group of 3 year olds! I then spent the rest of the afternoon at home and it was lovely to just be at home. Amanda and Joel came over and picked up Tiernan for a sleepover and I was able to spend some one on one time with Arielle whilst Cam worked out in the yard preparing for laying the turf on the weekend. I made spaghetti for dinner which I thoroughly enjoyed as it is my all time favourite food. Then Cam and Arielle brought me back in here. Today I am going to go out with my mum's group to the museum and then I am getting an extra special night at home - yipee! My counts are taking a nose dive so I am probably going to require transfusions and start getting unwell so they decided to let me have one last bout of freedom!

Forgot to add the photos

2007-03-12T15:20:00.000+10:00

I forgot to add some photos that Natalie took on the weekend - enjoy!! There is some video too and if I can work out how to resize it I will put that up here too

What a wonderful weekend

2007-03-12T11:20:00.000+10:00

I feel totally refreshed after the weekend. On Saturday I had quite a few visitors (Tim, Jess, Sharon, Cam and Bob) and although I had a few tummy troubles all in all I did not feel too bad. The GCSF injections started on Saturday morning and they do not seem to be effecting me so bad this time. Quite surprising seeing as I am on triple the daily dose that I was last time. I suppose it goes to show that each chemo regime is so totally different on the way your body copes with it! On Saturday night I had the worst sleep possible due to being woken every 2 hours by a nurse on happy drugs. She would turn the lights on each time she came in and by 7am I was ready to kill someone! I was moping in my misery and then at 7.30am my door opened and Cam suprised me with a visit. I was so happy to see him. My levels had continued to improve so they decided to let me have a leave pass for the day (my spirits definitely needed it by then). So I spent the day at home and it was just lovely. Cam was with me for the morning (it was so nice for the two of us to actually have some time together in our new house) and then he had to head up to the rescue helicopter. Then mum, dad, Nat and Arielle and Tiernan came over and Jess, Tim and Ben all visited. We had the most lovely afternoon and we even got to spend some time in the pool. It was the first time Arielle did not complain about going in (probably due to the fact that it was 38 degrees outside). I had such a lovely afternoon. Cam's parents popped in for a visit and Cam came home and then Kylie picked me up to take me back to the hospital. We got some takeaway on the way in and met Amanda and Jane at the hospital. The four of us are meeting up for Sunday night poker games at the hospital however we chatted and laughed until we realised the time was 10.30pm and we had not even got the poker game out yet! We had a lovely night and I look forward to next Sunday night.
I had the most wonderful sleep in this morning until 9am - can you believe that! Today's results were all good and still on the improve. One of my liver function tests is back to normal and the other one continues to improve. I am still on antibiotics but hopefully they will be able to stop soon (they are causing dreadful tummy troubles so I am keen to get off them). I cannot believe how good I feel considering I am on the GCSF injections and I had a week of chemo last week. All the fluids have caused my weight to go up to 48kg (I tried convincing the doctor it was because I was eating so much but they refused to believe me and said it was just fluid retention). With the increased weight and a little colour change from the liver troubles I actually look reasonably healthy! I have been warned that the week probably wont end as well as it started as this chemo is very harsh on counts and that by the end of the week I probably wont be in a good state but I dont really care about that right now - I am feeling good for the moment and I am enjoying it. As I am feeling well and my counts are good I am allowed out on day passes which is nice. I am being a good girl though and am going to take it easy and not do too much!

Day 5 - better results

2007-03-09T11:46:00.000+10:00

Well finally some good news to report - my liver toxicity levels are half of what they were yesterday so the good news is that chemo is going ahead as planned today. They do not know what has caused the problem but at least I am on the mend now (the levels are still 10 times what they should be but at least they are on the way down). I had an ultrasound yesterday and I have swelling on my gall bladder as well. They could not find any gallstones so again they are not sure of the cause of it but apparently that explains the pain I am having. They have started me on antibiotics to see if that clears it all up.

Today is my last day of chemo for this round - yeah. Tomorrow I start the GCSF injections to return my immune system to normal and to coax the stem cells out of the bone marrow and into the peripheral blood (isn't it amazing what modern medicine can achieve).

Cam and the kids visited last night and that was great. It was lovely to have some great cuddles with them and Tiernan accompanied me down to the ultrasound and sat in the room whilst I had it. He told the sonographer that mummy was having special medicine to get rid of the bugs inside her so that she could come home and spend lots of time with him! It made my heart melt!

Not much else to report so I will sign off for now.

New Blogg Site - Day 4 of chemo

2007-03-08T09:51:00.000+10:00

My old blogg site ran out of space so I had to get a new one. I decided to go with the blogger site as it has a heap of great features and makes it a lot easier for me to post my bloggs.

I realised that it had been quite awhile since I had posted any updated photos of the kids so here they are. The first two photos were taken by my wonderful friend Amanda last week. This photo of Arielle in her gorgeous pink dress was taken in January by my aunty Alice, when Alice, mum, Arielle and I went to High Tea.

Unfortunately the liver situation is not improving. There is some liver toxicity count in my blood that was 43 on Monday (10 - 45 is normal) and it is now up to 810 and climbing each day. They are quite certain at present that it is a drug related toxicity rather than the cancer having gone to my liver as it is such an acute change. There is a suspicion it could be caused from Panadol however it would have had to have been very high doses and I would remember taking that as I hate swallowing panadols! They are checking whether anyone has given me IV Panadol. Although none of the chemo drugs should be causing this type of toxic reaction, if the counts continue to go up tomorrow then they will have to stop the chemo and see if that relieves the problem. So all in all I am not feeling so well at present. The only pain relief I can use is hot packs as they do not want to introduce any more drugs into the equation!

The tumour increasing in size a little is not of a concern at present and Kerry said I will have another CT in about 6 weeks and he will assess how it is going then. It is quite normal for the tumour to initially swell upon commencement of chemo.

The last problem of the day is that my HB levels have fallen and I have to have a blood transfusion. I am not bothered by that as they always make me feel better anyway!

My hospital stay has been quite a social one this time. On Monday Cam came to visit. Then on Tuesday, mum and Natalie brought Arielle and Tiernan in to visit and then Kylie and Emily came in and visited and then took Tiernan home with them for a sleepover (can you believe this he ate raw beans and lettuce - at home he wont even let me put lettuce on his plate!! And he slept until 6.15am - he usually battles to sleep past 5.30am at home!). Yesterday was a lovely social day. Jane and Lucy visited me for most of the day and we had a lovely time catching up and chatting. In the evening I had a lovely visit from Justin a friend that I used to work with in the UK. He lives with his wife Tania in Melbourne but is up in Brisbane for work for a few weeks. Today Cam will come in and visit and then this afternoon he will pick up the kids from daycare and bring them in to have dinner with me. So I am certainly not getting a chance to get bored or feel sorry for myself which is really great.