We were very lucky to have had a lovely trip in Cornwall in the van and have the ability to go away, the winter sunshine was present and we enjoyed beach walks and time away and now Spring is definitely here.
It was CT scan time again, these come around way too quickly, waiting for these results was different, we knew that things were going to be growing, whilst the anxiety was less (in a way) its still difficult to get these results. Scan results are as we expected, whilst everything below Simons diaphragm is stable, the tumours in his lungs are not only multiplying but growing, this is evident in his breathlessness and fatigue.
It was at our next appointment that Dr S asked whether we would want him to refer Simon to Oxford Trials Unit, to see whether there was any trials that Simon could go on and that may offer him some time. With the referral sent within a few days we received a phonecall offering Simon an appointment.
The appointment was very interesting, we had written down all the relevant dates of diagnosis, surgeries, chemo cycles given etc, it was a long list. To our surprise they offered us a Phase 1 trial. This trial was the first time the drug regime (and new drugs) had been used on humans, it was also a trial that was setting the optimal dose, which meant that it tested what was the highest dose that could be given before side effects had a substantial effect on a body. The team from Oxford were great, there were no guarantees with the drugs and so we were given time to make a decision on this drug, they gave us 33 pages of information on the trial, cycle regime and what to expect.
Deciding what to do with the trials was absolutely agonising in so many ways, the issues it raised were (sorry for the list but we work so well with lists):
- This was primarily Simons decision, whilst all the decisions and plans we have gone through so far we had done everything together, but this time it HAD to be Simons decision alone.
- We had come to terms with there being no further treatment and the thought of further unsettled us greatly.
- This could be the next “new thing” in chemo for bowel cancer and could be a miracle drug for us.
- This was the first time this drug had been used on humans, how safe was it, what are the side effects that would come with it.
- Time away from home, in the first month Simon would only be home for odd days.
- Other people ahead of us had made the move to go on trials, and they had with their decision got Simon to where he is today. By accepting this trial he would be helping cancer patients in the future.
- If this cycle made any positive difference to Simons cancer the amount of cycles available to us was limited (as part of the trial) and so we would then be back to the place we were in now.
And this is just a few of the issues we had and discussed and points we had to work through and Simon had to decide what he wanted to do. Our conversations went back and forth for a week. In the end Simon took the phonecall from Oxford by himself and told me his decision when he had finished the call.
Simon made the decision to not go ahead with the offer of trials from Oxford and any future trials, whilst some may not understand this decision we felt like a weight had been lifted back off us, and move forward with our lives and coming to terms with what is coming. BUT we get to plan trips, days out and with Spring definitely here everything seems better. It was his decision based on quality of life.
Simon is as always getting great care from the oncology team and GP. There are things that going forward will change, soon we will move from the Oncology Team to the Palliative team (with the Hospice team). Things are now about managing Simons symptoms and ensuring he stays in as best health as possible.
On his recent GP appointment it was decided that he did not need oxygen at home at the moment, but that time would come. Even though Simon suffers from breathlessness the decision to not start oxygen therapy was one we agreed with. The other thing they discussed (and this was a big one) was a TEP form (TEP stands for Treatment Escalation Plan and Resuscitation Decision Record), this basically sets out Simons wishes. This involves fluid and antibiotic treatment, resuscitation and also comment on Simons wish to not go back into hospital unless it was for a short specified treatment for something and then home. The form was ready for picking up from the surgery today, we have a copy of this at home in case Simons needs urgent medical attention at home and we can make sure his wishes are met. I tell you typing an explanation of this form was far easier than picking it from the surgery. Its another of those horrible realities of life, another of those hurdles we encounter, but we have put it in a safe place and will deal with it and get it out when needed.
Whilst Simons medical needs have always been met there has been times when, and understandably, his emotional and spiritual needs needed help. With the help of my niece, her husband and the vicar from our local church, they have given Simon immeasurable help, through meetings, conversations and reading they have given Simon and I an insight into a faith we didn’t have and a peacefulness between us.
For now though we are getting on with life, gardening, enjoying time together and with family and planning some time away in the van. We only make plans a few weeks ahead of time, we feel more secure in this in ensuring we know what we are doing and safe in those plans. So thats us and where we are.
Onwards and upwards Mr C.