Before talking about my transplant, I would like to pause as one old friend that I have not seen for years just passed from breast cancer and it touched me as we were same age and it showed me that this bite me back in the future. So bottom line, there is always something to remind you… and today when checking in in Paris, the first news I see on television is the death by cancer of Jean-Luc Delarue… So while my wife is shopping in Paris, I am blogging to escape from these bad news!
So I left you at the end of chapter 5 ready to accept the transplant. It happens that this procedure is like a transfusion with a metal taste coming in your mouth. It only takes a few hours to get the new bone marrow “delivered”. I consider myself very lucky as I could get a 100% compatible transplant in less than two months. The only information I did get is that it came from a Polish lady that I will never meet (if you recognise yourself, THANK YOU!). So it was clearly more painful to get ready for the procedure than the transplant itself. The after-transplant life is even more of a constraint and so for the whole family. To come back to April 2nd 2010, after a night in the hospital and the transfusion, I was being sent home with my prescription for the pharmacist.. more or less 25 pills a day! Believe me, you quickly get used to eat them by 6 or 7! So now my life would move to a new pattern…
First of all, I was spending 2 or 3 half days a week in the daycare hospital to be properly hydrated and get blood tests followed by medication fine tuning. That lasted several months till I stabilised and could move into a monthly visit. I understood quickly that 2010 would be a year with minimum to no social life and fairly complex to manage from a family perspective, I’ll describe the other main constraints. Feeling weak, tired, with a colostomy, three times a week in hospital and daily nurse visits, you can imagine it is not that easy to have fun and enjoy family life. So I was stuck at home almost all the time.
I was not allowed to go to public places and if necessary e.g. hospital, I had to wear a mask to protect myself. If you wanted to pay me a visit, you also had to do so and children below 12 were simply not allowed. The main impact there was for my young one as it meant that none of his friends could come and play at home and so for a year or so. That drastically decreased the amount of visits we got at home… It was then mainly family, neighbours and close friends visiting me. Interesting to see how people can react facing a friend hit by cancer! On the other hand, a good Malaysian friend and colleague came and visit me (first time she saw snow if I recall correctly)… I was then doomed to live isolated for one calendar year. For the readers who know me personally, it was hard to be in a static environment so I did change the house, the garden and finally even extended it to keep myself busy… That shows part of the impact and the burden on the family and the overall change in the way of living.
The diet linked to the transplant was, and to an extent still is, a daily heavy constraint for the family.
The purpose of this diet is to protect me from bacteria and other substances that have the potential to cause me harm. Although most people can fight off small amounts of bacteria, people with weakened immune systems cannot.
This is commonly recommended for people undergoing chemotherapy treatment or those who have just finished a series of chemotherapy treatments. Chemotherapy can kill immune system cells that keep the immune system functioning properly. It is also recommended for those who have had an organ transplant.
This means that I may safely consume any fruits and vegetables that have been properly cooked. Canned vegetables, canned fruits and bottled juices are also acceptable. All meat should be cooked to well-done and eggs should be thoroughly cooked so that the yolk is not runny. Vacuum-sealed lunch meats are an acceptable item on this specific diet. As long as dairy products are pasteurised, they are considered safe as well.
So you you see the burden to get this and only that diet for a minimum of one year. The other side of that coin is everything that is forbidden.
People following that diet should avoid all fresh fruits and vegetables. Raw or rare-cooked meat should also be avoided because the low cooking temperatures can leave some bacteria and other organisms alive. Eggs that are not thoroughly cooked are also forbidden. Raw nuts and freshly sliced deli meats should also be avoided. Yogurt products that contain live, active cultures are also deemed unsafe.
In addition to avoiding the consumption of raw fruits and vegetables, I should not handle raw fruits and vegetables either. If a fruit or vegetable requires cooking, it is recommended having someone who is not immunocompromised help cook the food. A person with a compromised immune system should not handle live yeast either. These precautions are also known as neutropenic. You can easily imagine what my wife has to deal with with shopping, cooking and educating the boys. As a side anecdote I was wearing latex gloves to play golf as it is also recommended not to touch grass…
As mentioned before, I resumed my audit work by doing reviews without hard deadlines so that I can focus on something else than the illness and keep the link with colleagues, thanks to my line and the technology to achieve that.
I won’t spend time on all the secondary effects of the medication as the bottom line is positive but you don’t have much energy and it is hard to have your brainstorm 100% and your body at less than 50. My approach was then to pragmatically define my new environment, adapt it and in parallel while healing focus on how best manage living with the decease and work on my deliverables. Coincidentally after the first step i.e. three months, I resumed my MBA programme in September to also feel being in a “back to normal” mode.
You have now an idea of what my 2010 has been, heavy constraints but great support and a determination to go through this by focusing on getting my brain to work while the body tries to heal. On the other hand the bad news were that my abdominal hernia was getting bigger and bigger… In the next chapter we’ll talk about the next surgery (two in one combo).
Till Christmas 2010 (obviously my best period for surgery) it went fairly well by respecting all the prescriptions and being a good soldier by complying to all the rules received by the haematologists. The goal was clearly getting to April 2011 i.e. one year after transplant milestone but I will realise that we still have steps to reach that!