Well there you have it in the title No measurable disease, let’s hope this is the start of remaining clear for a long time.
To recap this last cancer episode, in April 2018 a scan showed an enlarged lymph node so it was suggested by an oncologist I had never seen before that I should have surgery to take it out. However logical it may seem to anyone reading this, it was not logical to me as back in July 2015 when I was diagnosed with metastatic melanoma too many nodes were affected and surgery was not an option, when I became clear after receiving a second line treatment of Pembrolizumab (Dabrafenib being my first, until a spread to my ovary) I was allowed to come off treatment after 12 months but as this was earlier than in the trials, I did so on the proviso that I could go back onto treatment if I had a recurrence. Having been a complete responder it has been mentally hard going back onto Pembro and then it not working as well this second time, and having surgery in March to eventually remove that lymph node as after all those months since restarting in June 2018, it had grown back to the same size as it was in May before starting treatment.
So this May 2019 result was important to me, in the last 3 months I’d had surgery, I’d had a gap in Pembrolizumab due to the surgery and I’d had a low calcium result in my blood tests so it was still possible in my mind that another node or worse could pop up as an issue on my scan and make the whole surgery thing a waste of time when they could have changed me on to targeted therapy months ago. On the plus side I was looking forward to being told I was clear, and looking forward to being clear and off treatment in March 2020 if all goes well. My one issue was that I doubted if the scan result would be ready for my appointment and therefore my celebration (not that I ever do celebrate) would be ruined. Why did I think that? well although there was two weeks for the results there was a bank holiday in between, also I had registered for a hospital app and it showed “you have no test results”, also I have once before not had scan results on time and they consultant had to chase it up and phone me the next day.
So yes you’ve guessed it, I went in to be introduced to a registrar I had never seen before and him to tell me my head Scan was clear but the other Scan hasn’t been reported on yet but we can go ahead with treatment on Friday. What what brain does not compute, so I tell the guy that the scan result is important to me that the drug is expensive to keep treating me with out the knowledge of the scan results, and that I would want to be moved onto a different treatment ASAP if it wasn’t working, after all in the last three months I have had a bit of a break and have had surgery due to the drug not working on one node. I explained that my expectation was for him to get the scan results rather than to plough on regardless as if the consultant did that last time, why wasn’t he taking that action. He mutters about national shortage of radiographers, actually that bit was probably before I told him I expected him to chase up the scan today. I did apologise for making a fuss it was probably because I wasn’t to confident in the results and that I have a family funeral to go to next week. He did go out and he thought it would be respirated on tomorrow and that he would phone me, which he did at 3:30. The journey to the appointment had been terrible, torrential rain, floods across the road, hail and lightning. I hadn’t had my usual National Trust walk to clear my head before the appointment and I’d been called in early to a person I didn’t know. The journey back wasn’t quite so bad but I was still fuming from not getting the results and them deciding to plough on regardless, in hind sight if he couldn’t get the results it’s what he would have had to have done as it’s more logical to carry on in the absence of info to tell you to stop but that wasn’t my way of thinking at the time. I assumed he had just seen lymph node removed shouldn’t be any problem continuing. Argh I hate getting het up, don’t get me wrong I didn’t swear or shout but I may have embarrassed him as he had a student with him in the room, and the skin cancer nurse specialist who as I was apologising said I wasn’t saying anything that she wouldn’t say in my shoes and informed me about PALS if I wanted to complain.
My diagnosis for metastatic melanoma came within a few months of my mother passing away, and my cousins diagnosis of cancer followed the same pattern. Unfortunately within a few weeks my cousins fate had gone from diagnosis of secondary kidney cancer, to finding the primary was bowel and to going into hospital and passing away before any treatment was started. Last May between biopsy and starting treatment I had stayed with her for a much needed break. We had a lovely time sightseeing in Edinburgh, and Dumfries, and lots of scenic walks. I had a touch of survivor guilt a few years ago when another friend who had supported me passed away so I knew I would have some feelings when I got the news that she had passed away in hospital. Cancer can be so cruel, my sister said it wasn’t fare and it’s not but saying so to me didn’t feel right. So next week I travel up to Scotland again in May but not so happy a trip and it is difficult to think that if someone last year had said even in jest one of you won’t be alive this time next year, I would not have guessed that it would be her not me.
I was glad I had that week with her, I was volunteering for Macmillan then and she saw what I did and when she had her diagnosis I was glad that she felt she could ring me and talk about it. She knew I would understand what her mind was going through when she was told she was incurable. I have heard some people say it’s good to go quick rather than and look at me and shut up. I am clear at the moment though incurable cancer still on treatment but clear for the second time since my 2015 diagnosis how mad is that. I have no big sweeping statement to make about my future and making it mean something that I’m still here, but I think the next week is going to be tough partly because of the funeral and partly cos I’m in the not quite myself cycle of my treatment.
Well I’m not sure when my next blog entry will be as hopefully things will go smoothly for a bit now and I won’t have the urge to get things out of my head so much. This time last year I was so disappointed at not being clear, I wish I had the opposite elation of being clear now, last time I was described as NED no evidence of disease, this time it’s no measurable disease, that little difference is important but just words, I hope the continuing Pembro wipes out the anything smaller than a scan can see. I hope I don’t end up worrying about it coming back, but just enjoy the fact it’s not here now.
