Saturday, 15 December 2007
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.
Wednesday, 14 November 2007
Tuesday, 13 November 2007
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.
Monday, 15 October 2007
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
Monday, 1 October 2007
Sunday, 16 September 2007
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.
Saturday, 25 August 2007
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!
Saturday, 18 August 2007
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.
Monday, 6 August 2007
So that will be it from me for awhile. I will write again once radiation is underway. Bye for now!
Friday, 27 July 2007
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.
Saturday, 21 July 2007
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.
Friday, 6 July 2007
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!
Thursday, 5 July 2007
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.
Thursday, 28 June 2007
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!
Monday, 25 June 2007
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.
Sunday, 24 June 2007
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.
Wednesday, 20 June 2007
Tuesday, 19 June 2007
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!
Thursday, 14 June 2007
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.
Tuesday, 12 June 2007
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.
Sunday, 10 June 2007
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!
Friday, 8 June 2007
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.
Thursday, 24 May 2007
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.
Saturday, 19 May 2007
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.
Thursday, 17 May 2007
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
Saturday, 12 May 2007
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.
Tuesday, 1 May 2007
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.
Sunday, 29 April 2007
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.
Friday, 27 April 2007
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.