I’ve been in a bit of a daze since Thursday, I’m actually finding it difficult to come to terms with what I was told.
At the end of July I had a CT scan and got my results on Thursday morning, the idea behind the scan was for the oncologist to get an idea of how quickly my cancer was spreading through my lymphatic system. My last scan was in March this year and I was expecting it to be clear, it was to be used as a start point to see if my cancer would come back after my surgery, radiotherapy and chemotherapy. Unfortunately, what it showed was that my cancer had spread to the mediastinal lymph nodes in my chest, specifically L4, L7 and L11 (these are round about the throat to the heart).
If you want to know what the lymphatic system does have a look here. Essentially it acts as an immune system and also helps drain the body of unnecessary liquids. As far as cancer is concerned the lymphatic system is a convenient way of traveling round the body and reaching all the vital organs in turn, which is why when cancer metastasizes into the lymphatic system the prospects of the patient are not very good. Typical life span for my cancer having metastasized have been given as 3 to 18 months with the likelihood of survival (i.e. living more than 5 years from diagnosis) being around 0.1%.
So when I went for the results of my CT scan on Thursday I was expecting to hear that my cancer had continued to spread through my lymphatic system, possibly to one or more vital organs. What I was actually told was that there had been very little change from the last scan in March! We looked at the two scans and compared them and could see each of the lymph nodes looked exactly the same on each scan, apart from one which had grown in size by 2mm. I should explain that these lymph nodes shouldn’t appear on a CT scan so what we were looking at were cancer cells in the lymph nodes and they had hardly changed in 4 months.
Now I know from experience that cancer cells only show on a CT scan when they have become a problem (nothing showed in the lymph nodes in my neck before surgery to remove them yet nearly all had cancerous cells in them) so I kept scrabbling about for a down side to this but couldn’t come up with one. My oncologist translated the results as “the cancer is spreading at an extremely slow rate, which is good” whereas I translated them as “what I am doing is working!!!”. My oncologist also said “if I had given you chemotherapy and got these results I would be extremely pleased”.
I think it is only just sinking in that the regime that I’ve researched and put into place is actually doing some good, it seems to have completely stopped the spread of my cancer. I still have cancer cells in my body but I also have ten times as much confidence that what I’m doing will kill them off in time. It is like a weight has been lifted from me, I haven’t dared to think it might be working as the disappointment would have been too much to take. I had told myself that being as healthy as I could should at least give me some quality of life and may extend my lifespan but I was fairly resigned to the fact that I may only have a short time left, but I couldn’t just come home and die so I had to try something and it looks like it works. I’m still pinching myself.
I’d also been a bit worried because in early July I had come down with a really nasty throat infection which led to a week’s stay in hospital. The knock on from this was that I had gone 10 days with no supplements and my diet had suffered due to the hospital food (nutrition and the NHS are still strangers). When I came out of hospital, pumped full of steroids and antibiotics I had a further week of oral antibiotics and I felt quite run down and didn’t feel like eating, so my regime suffered again, when I tried taking my supplements I felt a bit ill and had difficulty swallowing the pills, so stopped after a few days. My worry was that I had missed about 3 weeks of my regime just before my CT scan, but the results were still way better than I expected.
I did a bit of research and found that antibiotics are used to kill off the bacteria that is causing the infection, however, like most drugs, they have side effects. One of these is that they also kill off the good bacteria in your digestive system which is something I’d spent about 3 months fine tuning. This is probably why I couldn’t be bothered to eat much and had occasional cravings for high calorie items which were very much not part of my regime (Magnum ice creams and beer to name 2 – and yes I did!). More research showed that I needed to sort my digestive system out with probiotics, not those silly yoghurt things in supermarkets either, these are what I used.
Having a bit more confidence about my regime, I stopped taking any supplements and tried to put my body back on track. After only a few days I started feeling better and started feeling hungry again. So today I’ve started back on all my supplements although I am easing myself back onto the apricot kernels and B17 as I haven’t taken them regularly for a while.
I’m hoping that in a week or so I can get back into the gym and start exercising again but as I managed to do something extremely nasty to my knee a week ago whilst sailing 2 races after 3 weeks lying on my back, I’m taking it easy until my body tells me its ready this time. Having the confidence that my regime is actually working has made me much more relaxed about everything which is a positive thing in itself.
Next scan is at the end of October and I can’t wait to see what the results are.