Quick Post I am exhausted

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

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

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

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

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

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

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.