I am like all of you we are fed up with this weather, when is Spring going to arrive and when is the rain going to stop. On top of everything these continuous grey days do not help the mood. for anyone. We have had days out, have tried again to go away only to have the trips shortened by Simon not feeling well. Saying that we are waiting for Spring the time has come again for Simons latest scan, these three months roll by so quickly it appears. Since Christmas I would say Simons health has taken a battering and whilst we thought sit was the effect of chemotherapy we were hoping it was nothing else causing the decline in his health. Whereas as year ago Simon would recover quite quickly between chemo cycles he was now hardly recovering, if at all.
We had an appointment with oncology the week prior to the scan where we met the lovely Leonie, she is Dr Sherriffs registrar and we have a good relationship with them both. She raised a concern that the chemo was not making Simon quite “toxic” as he had been on the treatment for so long. it appears that the side effects are getting to the point now that Simon is unable to recover enough and is likely to end up with him being seriously ill and admitted with side effects. It is a fine balance between having chemo to keep the cancer in a stable place and the chemo actually causing harm now.
As we have said previously the run up to scans is an absolute nightmare of anxiety and tension, we look at every symptom and feeling and try to second guess what the results are going to say. So as we have done on quite a few occasions we trundled off to oncology last week. We again met with Leonie and we at first discussed the side effects of the chemo, how Simon was feeling etc and then we got down to the scan results. We were hoping to hear the words “Stable” but unfortunately this was not going to be the case.
So, firstly the things that haven’t changed, the two nodes in Simons neck and the para-aortic node has not changed, however the four nodules in his lungs have seen changes in three of them, now this is minimal change but the view is that the chemo has started to not work as well as it was. With the chemo regime and cituximab the drugs put breaks or a wall in the way of the cancer to grow, however cancer is a canny bugger and after a time will work its way round everything put in its way, and this is what appears to have started. Whilst we knew at some point this was going to happen it was all very surreal to hear.
We went in this appointment wanting to ask for a break in treatment, we thought of about 6 weeks but now we have other options. The suggestion was we took a three month break from all treatment and for Simon to have another CT scan with a possibility of trying another chemo regime (possibly Lonsurf). The second option was that we took the 6 week off and went back onto the current regime. It was clear that Simon needs a break from treatment to try to let his body recover from everything, but the thought of having these changes occurring already and having no treatment for three months also had its own anxieties. The oncology team are very clear that at the moment the chemotherapy is a big risk to Simon and a break is needed. So our plan is to stay off chemo and see the team at the end of March to review the situation, however we feel returning to the current regime is not going to be workable as the side effects from it are getting worse and he is unable to manage these drugs.
Its been a week since we were told all this information and in this time Simon has not been well at all, today he has spent most of the day in bed and we know this is chemotherapy, I actually never thought we would ever be having the conversations we are having about quality of life vs treatment side effects, it is clear that if the chemo carried on like it is Simon has such side effects the quality of his life is seriously reduced. So we have some knowns and unknowns:
- Of the 7 nodes and nodules Simon has currently three are showing signs off growth
- The side effects of the chemotherapy are having devastating effects on Simons body
- He has had 30 cycles of treatment in the past 15 months and a total of 46 in the past 4 years
- Every day of the past four years Simon has made me proud to be his wife
- We are going to kick the arse out of every day
- We have a camper van that will take us on adventures
- What the path will be in the coming months
- What a scan will show with three months off treatment
- If we will get offered another chemotherapy line of treatment
- We haven’t and will never ask for time scales
- When the sun will come out and the rain will stop
So we move onwards and see where the next stage takes us. Whilst we allow ourselves some time for reflection on the whole are looking at making a load of memories and having fun. (as long as coronavirus does not stop us in our tracks!)
As always onwards and upwards Mr C.