It is important to visualise, to dream and to be positive but at times you also need to be realistic. This is the lesson I learnt yesterday, not that I didn’t already know it but I had allowed my fantasies to perhaps go a step to far. Yesterday my consultant brought me back down to earth.
I was excited about my visit to see the consultant. I had imagined him hugging me and shaking Colin’s hand,congratulating us for beating all the odds. I had visualised him telling me that now that I had no para proteins in my body I was free of cancer. That is what I, my friends and family all wanted to hear. This is what we had been saying to one another. You don’t have cancer now. The doctor told me differently. The bits I heard before my eyes glazed over with tears and my emotional brain took over from my thinking one were;
- You will always have cancer
- You still have cancerous cells in your bone marrow
- The blood tests show some areas of high risk
- The pain in your legs may take months to get better and in the worse scenario may never go away
- You should go and make good use of your local hospice and get to know the people there.
The reality of the conversation as translated later by Colin was; Yes I will always have cancer and that although my blood tests show no para proteins, this actually means that there are no active cancerous cells (just dormant ones) which indicates that I am in a period of remission. The doctor was delighted as to how well I had responded to the trial. He did say there were some indicators in my blood that showed I was in a high risk group but there were also some positive indicators too. The doctor couldn’t give me a timetable as to how long it would be before I needed the stem cell transplant but he did say it definitely wouldn’t be ten years (I am of course going to prove him wrong on this point!). The neuropathic pain in my legs may take several months to subside and in some cases it doesn’t go away all together.
I also met a new nurse who took me through my next time table events, spoke to me briefly about what to expect and have me a big pack of reading material to bring home. My next appointment is May 21st. On this date I will need to get another ECG done , see the consultant and have a two hour slot with the harvesting department, (I think it has another name but I am not sure what this is yet) to go over the consent forms and sign them. There must be a lot to explain if it is going to take two hours?
So my harvesting timetable is:
May 21st – consent appointment
May 25th – chemo
May 26th – injection with growth hormone (this can be done at home by myself or a willing volunteer)
May 27th – injection with growth hormone
May 28th – injection with growth hormone
May 30th – injection with growth hormone
May 31st – injection with growth hormone
June 1st – injection with growth hormone
June 2nd – injection with growth hormone
June 3rd – go in for Harvesting
June 4th – go in for Harvesting
During this period and apparently for a little while afterwards I am apparently likely to be Neutropenic. This means that I will have a very low white blood cell count therefore more open to infection. I apparently must take this very seriously and there is even a special diet you must follow when you are Neutropenic which is a bit like the diet restrictions for a pregnant woman. No uncooked meats, pâté etc, no raw eggs, soft cheese like goats cheese (my favourite) and no probiotic yoghurts. It doesn’t seem too bad a diet anyway.
I must admit I was quite tearful yesterday so I did pop in to see the lovely ladies in the Macmillan room and they helped to calm me down a bit. Maybe it was because I just felt very tired yesterday, perhaps the time away had caught up with me? I suppose also that I had been feeling a lot better and thinking more about my future and going back to work sometime. I think the hospital visit yesterday has re confirmed that my life has changed and that there will be no going back to it as it was. I think maybe I need to take this positively and see it as a time to look at different opportunities. This would all be fine if I could include winning the lottery in my plans then I wouldn’t need to work.
Today I will rest and perhaps start reading the pack of information given to me yesterday. I would also like to get the party invitations done and dusted if only I can get a clear enough head on.
I hope that it’s a good Wednesday for you all.
Try to do something every day that you enjoy as you never know what is around the corner!