In three words I can sum up everything I’ve learned about life: it goes on – Robert Frost
My treatment plan was decided before I left hospital in January 2007. I was considered young and fit and so I was a candidate for a stem cell transplant.
The stages to be completed up to transplant were:
1. Reducing the myeloma to as low a level as possible using chemotheraphy and/or radiotheraphy
2. Collection of my own stem cells either by a bone marrow harvest or a peripheral blood stem cell harvest.
3. Treatment with high dose chemotheraphy. As this chemotheraphy cannot tell whether a cell is malignant or not, my bone marrow cells would all be killed so in order to rescue me from this I would need a transplant.
4. Reinfusion (transplant) of my own stem cells which will grow and form new red blood cells, white blood cells and platelets.
This all sounded so cutting edge and so dangerous but I knew it offered me the best hope for long-term survival, for any kind of survival, so I said yes to everything they were going to throw at me.
But there were some HOWEVER moments to deal with.
Not everyone is eligible for a transplant – age and general fitness are factors as well as the issue of stem cell harvesting.
Also it is often not possible to get stem cells mobilised for harvest.
I began my cycles of chemo in January and would have one per month while being supported by medication to deal with other issues caused by the Myeloma and to prevent me from getting ill with other infections and viruses etc. My cocktail of drugs daily/weekly was:
- Nuseal (to prevent blood clots)
- Valtrex (to keep viral infections away)
- Diflucan (to prevent fungal infections)
- Zoton (to protect stomach lining)
- Alfacalcidol (calcium)
- Calcichew (calcium)
- Zyloric ( to prevent a build up of uric acid)
- Thalidomide – beginning at 50mg and building up over time to 300mg.
- Septrin was taken every Monday and Tuesday (an antibiotic)
- Dexamethasone steroids which I took 40mg of for four days every month which which worked in combination with the Thalidomide as a form of oral chemo.
- I took two injections into the stomach every Wednesday to increase the production of red cells.
- I had a bone strengthener by IV once a month as well as a Vitamin B12 injection to treat anaemia.
Before I left hospital I was given this little booklet called an Oncology Diary. Now I was haematology rather than Oncology but it was designed to help me keep my own record of blood results and it also had all the really important emergency numbers for me if something was to happen to me while I was at home.
I saw my GP once a week for a general chat and so as he could issue me with a medical certificate for work.
Every second week I went to the Haematology Day Ward in Tallaght Hospital (Dublin) where I had full bloods taken, a chat with the nurse specialists, and then a chat with the consultant. I was kept on a very short leash.
Once a month I was given an IV dose of bone strengthener. Now that might sound like an old fashioned splint attached to my bones but it was delivered intravenously in liquid form. If you can visualise a slice of Edam cheese with all those holes of varying sizes in it – well that’s what the effects of myeloma on the bones looks like if you view the bones on a x ray. I was lucky in that my bones were good and the doctors were anxious for me to keep it that way.
Dr Wall my renal consultant saw me regularly too and she kept an eye on all my results especially my creatinine levels.
By February my creatinine had not improved that much and was holding at 375 which was still way too high. The other HOWEVER issue for me with the transplant would be what it might do to my kidneys. A few years ago they would not have offered me a transplant because of the way my kidneys had been damaged, but with improvements in medication they were prepared to do so. I was told to prepare myself for dialysis being on the cards during the transplant as my kidneys would take a hit again then.
I was drinking 3 litres of fluids a day as part of the treatment for the Myeloma and there were days where I felt like I was a camel, loading up with water to cross the desert. It’s not easy to drink 3 litres a day!
My bloods too were up and down and I was still needing regular blood transfusions to boost my levels. It was just part of the treatment and although it always felt unpleasant to have a transfusion (like being too full), I knew I had to keep saying yes.
But I developed my ‘In Treatment’ routine.
Bryan went off to work early each day. Emma got the bus to school. Cathal was collected by his minder and I did whatever my energy levels would allow me to do. There was also a huge amount of paperwork which comes with being sick and preparing for something as serious as a stem cell harvest.
Whilst the haematology department in Tallaght would be my primary carers for my treatment, Saint James’s Hospital in Dublin would also play a significant part. I was to meet Dr Paul Browne and his team as soon as possible as they would do the harvesting of the stem cells and the transplant. My before and aftercare would be looked after by Tallaght.
The staff in Tallaght are superb. I had a great team of nurses – well nurse specialists as they have had to train for years to work in haematology. There were always new faces but by the time I was ready for my harvest, they all knew me very well, and vice versa.
I had also spent a morning in Saint James’s in their haematology department, where I met and chatted with consultant haematologist Dr Paul Browne. I was showed around the room where the harvest would take place and the machinery that they would be using. It was all pretty daunting. Dr Browne answered all my questions including one which I think he wasn’t expecting. We hit it off straight away which is always a good thing when you are putting your life in someone elses’s hands.
I was told that I would have stem cells harvested for two transplants as I would only ever be offered two transplants. That was a shock but Dr Browne explained that after two transplants the results from a third would not outweigh the risks involved. I was also asked to have all my siblings come to the hospital to be tested as there was a good possibility one of them might be a perfect match for me if things got grave for me in the future and if we ran out of other options.
That was another reality check for me about how seriously ill I really was.
I finished my fourth cycle of chemo in April and they did another bone marrow biopsy. When they They decided that the levels were optimum and that we could go ahead and do the harvest.
Harvesting was to begin in May.