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Surviving blood cancer

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17 Mar 2016

Things you may find helpful during chemo and undergoing a bone marrow transplant.

In August 1999 myself, my then partner and my children paid our annual long weekend visit to Whitby for the regatta weekend. If you dont know Whitby its a very lovely small seaside town on the North East coast near Scarborough. Its partially built on two cliffs so there are quite a few steps and banks to endure while sightseeing. This particular year i was finding the steps and banks a little more difficult to cope with, stopping for regular short rests and aching backs of both my lower legs.|I put it down to maybe a virus or just being unfit and coped for the weekend. 
When we arrived home things got no better, in fact they got steadily worse, walking short distances became a struggle as i would have to stop for breath breaks and general tiredness in my lower legs, again putting it down to a virus or similar. Things got steadily worse and just going upstairs was becoming a struggle, literally fighting for breath once i reached the top. One day someone stopped me in the street and asked me if i was OK as i looked terrible, i now felt terrible but kept puttng off going to the doctors. This person probably did me a big favour. On October 5th i went to the doctors, he took one look at me and  immediately ordered a blood test there and then. The following morning the phone rang, it was my GP Dr David Kipling. He told me to bag up a few toiletries etc and go straight to the hospital where there was a bed waiting for me on the haematology ward. Just before he hung up he said "good luck", this is when i knew it was serious and leukemia was in my head but i refused to believe myself. They took further bloods and sent them for tests. At 4:20pm the same day Doctor Ann Youart and her amazing oncology Nurse Lisa Smith walked into the room and gave me the news that i had acute myeloid leukemia. I knew what she was going to say before she opened her mouthbut it still felt like being hit by a brick, this was all withing 24 hours from visiting my GP. I was 39 and my children were 9 and 7. The first thing i thought about was  my children and how would they cope with losing me. This wasnt a defeatists attitude it was just a natural thought. I wasnt scared to die strangely enough or if i was i was hiding it from myself very well. They gave me blood and sent me home for the weekend and told me i was to begin chemotherapy on the Monday after having a hickman line inserted. I was told that i would need three 7 day courses which would be spread over about 3 months The chemo hit me quite hard at first, vomiting and regular use of the toilet being the main problem. This became easier to cope with but my body knew it was being hit hard. Towards the end of the 3 months it became worse and my body just wanted to give in but the fighter in me refused to give in, i was determined to beat this. I went into remission after the first course of chemo which was a massive boost to my confidence and mind. I eventually made it to the end and told i was in full remission and i thought that was that.

During my chemo bone a marrow transplant was mentioned occasionally and i was asked about my brothers and sisters but nothing was discussed in detail, i thought this was an option if the chemo didnt work. After the chemo i was sent to the R.V.I. in Newcastle to see professor Graham Jackson. It soon became clear why the hickman line hadnt been removed and why i was sent to see professor Jackson. He told me that if the cancer returned it was basically game over. The chances of this happening were 50%, it really was the toss of a coin. If i was to find a donor and have a bone marrow transplant the chances of it returning would drop to an outstanding 5% however bone marrow transplants (stem cell) back then carried around a 25% mortality rate. I had to make a life changing and very difficult decision. While all this was happening my 2 brothers and 2 sisters were being tested for stem cell donors. I was extremely fortunate that my brother Michael was an almost perfect match. Being a gambling man i played the odds and decided that the transplant was the favourable and most sensible option. After tests on my brother and myself to make sure we were both strong enough to give and receive the stem cells the transplant went ahead in the June of 2000. I was under an amazing team spearheaded by Graham Jackson and a fantastic team below him including Steve Fox and Carol Richardson, not forgetting the ward nurses and the cleaners, everyone was brilliant. I mention the cleaners because i came back from a chest X-ray one day after feeling very unwell so they sent me for an X-ray, on returning to the ward i got a whiff of the coffee machine and threw up in the coridoor like a scene from the exorcist. Apologising profoundly to the cleaner mopping my vomit up from floors and walls she simple said "dont be silly its my job", smiled and asked me if i was feeling better. Priceless !! This team was like a well oiled machine. I once asked Steve Fox how i would feel after the transplant and he replied "a little ropey for a while".Cheers Steve, your nose must have grew a few inches when you left the room !! 

Undergoing more chemo and having the transplant wasnt the prettiest thing ive endured, it was very hard to cope with but once i knew it was all starting to work it became worth it. Vomiting after meals, constant bowel movements and sleeping up to 16 hours a day were basically my life for the first 6 months or so. My body changed too, I had to have luke warm baths, eating hot or spicy food was definately out, even things like ketchup and mayonnaise were too hot for my mouth but i eventually found a suitable diet. I would get uncontrolable itches all over my body, no matter how much i scratched they just wouldnt go away. I was told things like this were a good sign as it was a sign that the stem cells were grafting properly. Slowly but surely my body returned to an almost normal state and although my energy levels never really reached the old heights I'm reasonably happy with myself. I did however lose my tearducts so i constantly use saline to keep my eyes moist,  my spleen became inactive but this is easily sorted by taking penicillin daily. 

Now, 16 years on I live an almost normal life although i have another disability to cope with which is the result of a chromosome disorder i was born with. I was born with half a chromosome short, this caused me to have a brittle bone disease mainly as a child, my left thigh has been broken 9 times and my right 2. Basically the bone that forms around a fracture to repair it (callus) wasnt growing with the rest of my body so it would eventually snap. This is almost certainly why i got leukemia too.

If i was to give any helpful hints to anyone receiving chemo or undergoing a stem cell transplant they would be as follows: Try and live a normal life as possible, this is very difficult at times but you dont really have a choice, curling up in a corner isnt really the way to proceed. Dont be afraid to cry, your natural state of mind will want you to at times. This doesnt make you weak it makes you human. Dont venture too far from home, if you fancy a break from it all then i would suggest a short break somewhere local, keep near public toilets etc because you never know when your going to need the loo so countryside walks etc arent really a good idea. Carry spare underwear whenever you go out, if you think your going to break wind DONT even go there, most of the time its a trick and you end up with soiled pants, if you think you need to do this sit on a loo to do it (a little off putting but very true). Dont be afraid to ask for help from anyone, most cancer patients are introduced to the Macmillan trust anyway and these people plus other similar groups do a brilliant job. They are there to help you. Use the mouthwashes etc provided by doctors, when you are having chemo your gums tend to bleed and you can taste everything thats pumped into your body and some of it is very unpleasant tasting. You are almost certainly going to lose weight so clothes shopping isnt really the best idea, when your current clothes start to drop off you then buy one or two more items that fit but dont over do it because the weight loss is gradual. You are probably going to lose all of your hair, this however can have its advantages if your a man. No shaving for 3 or 4 months (i loved that bit). Be positive all of the time although its very difficult especiaslly when you have young children, if they can see you smiling then it helps them to cope too. If you fancy a good cry, and you will from time to time, (see above notes) then go to a nice quiet private place and have a good cry, you will feel a lot better after it believe me.
To anyone undertgoing treatment right now or have just been diagnosed with blood cancer i wish you all the very best and i send my well wishes to you all. To those of you in remission and are getting your life back to some sort of normality after this dauntingtime i applaud you for fighting and beating this horrible disease. 






Eleanor Baggley

Thank you very much for sharing this blog with us, Brian. I can't even begin to imagine what you've been through and I am in awe of how upbeat and positive this blog is. I am sure that this will be such a great help to others going through similar experiences, particularly your chemo advice. It's wonderful to hear that you're living as normal now - long may that continue - and I hope your chromosone disorder doesn't cause you too many problems. If there's ever anything we can do to support you please do not hesitate to get in touch. Very best wishes, Eleanor