Monday, 9 March 2009

Stem Cell Transplant - Day 14 (or 12 days after actual transplant)

Home !!!!
Today has been a great day. I am home and as they say there is no place like home. I really dont know what to say, such a pot pouri of emotions. Relief, joy, happiness, surprise but above all so thankful.
To my incredible medical team thank you. A team of true professionals, so talented and always full of support and encouragement not to mention ready to laugh and keep the mood 'light'. To my gorgeous wife at my side throughout I love you with all my heart. To my friends, family and work collegues thank you for your support and best wishes throughout. You all provided such comfort and inspiration not to mention the messages I received on this blog. Thank you.
So now it is time to recuperate. I'm not sure how long that will take. I was told 4-8 weeks initially but I am seeing my Doctor (I should say Professor) tomorrow so will know more then. Given my dream and very fortunate run so far who knows. I may have another transfusion of plasma cells tomorrow but that will depend on my count in the morning. I feel great but also still very tired and of course the ongoing waves of nausea etc.... a small price to pay for life. Thank you all!
I will continue to update my blog with progress etc

Sunday, 8 March 2009

Stem Cell Transplant - Days 11-13

I have have had a very successful few days culminating with the great news that I will be able to go home tomorrow but more of that later.

Day eleven (Friday) once again had me feeling well. My counts had grown again steadily which was good news and came with the promise that I maybe able able to go out on 'day release' Saturday if they continued. The nausea whilst still there was only mild and came in waves which coincided with when the drugs were wearing off and the next set were due. My appetite gradully was returning which funnily enough also coincided with a visit from the catering manager to do a survey. I found that amusing given 1) I was still in isolation and 2) I had been living off virtually nothing for days and if I did eat it was the soup Sara had brought in.

So Friday night I just lived in hope that I could get out for the day to 'smell the roses' and see my family. I wondered if little Jack would remember me.

Fortunately I was allowed out and I have enjoyed two great day visits home. I am still very very tired and as of today bald. My hair continued to fall out at a rate and the patches had started appearing so there was nothing left to do but get it shaved off. I am OK about it but it is a very weird feeling. Jack did recognise me even with a bald head so that was a relief. Sara says I look hot (I think I scare small children and crack mirrors) which was representative of her loving support for me. I couldnt live without her or have gone through this without her by my side. She is amazing.

On the medical front I had a tranfusion of plasma cells on Saturday as my counts were down. They come in a bag and can best be described as looking like chicken soup. They were infused through my Hickman line. I have never had 'someone elses' blood before which brought a mixture of emotions ranging from being incredibly thankful (and thinking people who do that are so brave and wonderful) to feeling a little uncomfortable if I am to be honest. The whole exercise anyway was made 'light' as there was good banter with my nurse that morning Grant who was South African and we watched SA lose numerous wickets in the Test. I managed to get some good sledges in!

I also have a very painful shoulder which is a result of an injection to get the stem cell manufacture working overtime. That was and is unexpected for me and has caused discomfort. I am not complaining however as I still see and hear others around me less fortunate and who have struggled terribly through this process.

So tomorrow is the big day I hope. I will post the 'after' shot of me .... if for nothing else just to prove I am not hot! Also above is my room sign showing my various 'badges'.

Thursday, 5 March 2009

Stem Cell Transplant - Day Ten

The light at the end of the tunnel is not a train... it is the end of the tunnel!

That is how I have felt today. What a contrast and what a difference from the last few days.

Also I had wonderful news this morning... my white cell count is now 0.3 which means I am starting to produce my own white cells. The transplant has worked. That is such a relief as my remaining concerns were that either the transplant would not be successful and my stem cells would not take up residence again (which they obvioussly have) or the risk of infection (which is still there but will reduce with each day as my counts rise).

The nausea is also under control and I have been able to keep down foods. A real treat was my gorgeous Sara who delivered 3 lamb chops with mash for lunch. I was able to eat a fair portion, enjoy it and no after effects.

My friend the drip is still hydrating me and there are still plenty of drugs to take but it seems everyone is very happy with my progress. I have more energy today and am so pleased the last few days are behind me.

Was told today also they will take another sample of my bone marrow. I will not make the same mistake again when presented with option of local vs sedation! For anyone who reads this and is presented with the option trust me, go sedation!

I am not sure how much longer I will be here. My doctor (the 'Thursday' doctor as they rotate on daily rosters) said he didnt think he would see me next week. My 'main' doctors have intimated perhaps next Tues/Wed.... I am hoping for Sun/Mon. I guess it will all depend on the counts and some luck to not get an infection. Just hope the count increases rapidly. It is measured daily.

Wednesday, 4 March 2009

Stem Cell Transplant - Day Eight/Nine

Count is zero. Sorry for the lack of posts over the last two days but it has been a real struggle. Three words come to mind namely sick sick sick.

Yesterday in particular was a tough one. Extreme nausea meant I could virtually not lift my head off the pillow. Foods were definitely out of the question plus even a glass of water. There was also a fever and really just feeling unwell.

The day was really lying in bed... lights out, tv off just bunking in and hanging on.

My anti nausea drugs were changed and infused later in the day, that helped.

Sara was by my side as always and the head massages were a great relief ... thank you darling. She is amazing.

This morning (day ten) I feel so much better. Slight nausea etc but compared to the last two days hooray! Hopefully tonight when I do my blog I can reprot good progress.

Monday, 2 March 2009

Stem Cell Transplant - Day Seven

I need to start by admitting a mistake. Whilst my title is 'day seven' (which for me is the 7th day in hospital) it is really 'day five' (based on the date of the stem cell transplant). So to any fellow 'transplantees' who may read this and wonder if and why I am out of sync with the treatment that is why.

Today has been a real mixed bag. My 'count' this morning was 0.2 which now classifies me as neutropenic. I hadn't heard of this term until today but it means I get get a new badge on the door of my room stating this. That is now added to the 'irradiated blood product sign'. I am disappointed not to have had the 'isolation' tag added like others (even though I have been told I am now officially in isolation).

I looked up the term neutropenic which ... quote .. is ... 'Neutropenia (adjective neutropenic), from Latin prefix neutro- and Greek suffix -πενία (deficiency) is a hematological disorder characterized by an abnormally low number of a type of white blood cell called a neutrophil. Neutrophils usually make up 50-70% of circulating white blood cells and serve as the primary defense against infections by destroying bacteria in the blood. Hence, patients with neutropenia are more susceptible to bacterial infections and, without prompt medical attention, the condition may become life-threatening (neutropenic sepsis).'

Whilst that all sounds dramatic the staff here have it all under control and monitor me regularly for temperature rises etc. I am also on antibiotics to fight any suckers that may be attacking me.

Now that I have entered this stage a few changes have occurred. The first and most obvious is that I cannot go out anymore. Sara also has to wear an apron when she visits (and despite the fact it is a disposable plastic apron she still looks like a total spunk!). She is such a strength to me, not just now but always! My diet is also monitored far more closely (despite the fact I cannot stand to look at food at present and am eating less than a mouse). All foods must be fresh which meant the dinner order of a toasted ham and cheese sandwich was cancelled. The good news however was that Sara's magical and delicious soup which she brought to the hospital was OK to eat.

Today has really been characterised by just feeling like crap .... I cant put it more articulately than that. I did receive an intravenous shot of something to help and that did kick in. I am feeling better at present which is such a relief after the day so thought I would type this whilst I have the chance. Dinner will be here soon ... the thought makes my stomach turn but I know I have to force some down no matter how difficult to keep up my strength. I weighed this morning 5 kilos less than check in incidentally.

Is my Mother's birthday today so I will call her this evening. Happy Birthday Mum xxx

Eeeek dinner has arrived... bleck....until tomorrow ... all up a tough day but ok... sorry for the typos as always but I need to focus on the job at hand now.

Sunday, 1 March 2009

Stem Cell Transplant - Day Six

Another Leave Pass!

Another good day today as I was given a leave pass to go home again. That is the good news, the bad news is my doctor tells me this will be my last visit home until my treatment is complete as my white cell count dropped from six (I think) to two so I will not be able to leave the hospital anymore for risk of infection.

It was great to relax at home! Sara cooked a beautiful Sunday Roast (chicken my favourite) however three mouthfuls in I'm afraid I had to pass as I really am having trouble with nausea now. Dinner was half a bowl of Sara's beautiful chicken soup and quite frankly I think that is about all I will be able to face from here on in. Sara is going to bring this in tomorrow when she visits thank goodness.

I believe I can expect five 'interesting' days now as the count goes to zero and the inevitable infection (hopefully small as I 'm sure it will be) will come to visit.

So a very relaxing day at home. I am feeling very tired now and as mentioned the last thing on my mind is food!

I love my family and being at home and had a wonderful chat with my children in Australia this morning via skype. Cant wait until Juliet is finally here permanently! Also had a nice chat to Mum & Dad also in Aust.

Stem Cell Transplant - Day Five

There is No Place Like Home !!!!

A great day today! Anti nausea drugs are working well and my Doctor told me my blood counts were still high enough to go out again. So at 10am it was off home to be with my family, what a treat!!

What a difference it makes to be home and with loved ones. Whilst I have a nice room at the hosptital and really cant fault them an anything, they are all truly wonderful, there is no place like home!

Having lost close to another 3 kilos yesterday (its sounds just unbelievable but true) and having eaten virtually nothing due to the nausea the day before my darling Sara's chicken soup was just the thing. A bowl for lunch and dinner was perfect. To spend time just relaxing and chatting and to not be attached to the mobile drip was heaven.

So I am feeling very buoyed and recharged having spent quality time at home. Little Jack (just six months old) remembered his Dad which was nice. I was a little concerned having been away for a week but he welcomed me with a lovely smile and a good scratch to the nose which drew blood just for good measure!

Going back was difficult and I so wanted to stay but was thankful for the time I had. I gave the cabbie a good tip (no it wasnt be kind to your mother and dont talk to strangers) to which he responded 'thanks mate I that will buy my maccers tonight.'

Hopefully I will be able to go home again tomorrow (perhaps even be up for a small serving of a Sunday Roast .. I love that) but guess it will all come down to how I am feeling and my blood count. But feeling very positive and optimistic.

So day five... best day yet!