Testing times ahead

October 2021 Since our last blog Simon has been on fortnightly chemotherapy, this has been a pretty gruelling regime and initially within the 14-day cycle Simon would pick up on the later 7 days, as the cycles ticked away these well days reduced. As part of the process of assessing how the chemo was working Simon had his blood cancer markers (CEA) checked every two weeks and bimonthly CT scans. Simons CEA at its peak reached 186 (normal levels are under 5), with the chemo this dropped dramatically to 80 when he had his first scan in August, this showed that everything was stable and a few tumours in his lungs had shrunk by a few millimetres, this was beyond any of our expectations and so we continued with the regime. We then were able to think about the possibility of getting away. On Simons bucket list was a trip to Normandy (in the van of course) and so we planned and planned (we had a strict itinerary). We sought advice from Simons oncologist about delaying treatment for one week and also about going away. Whilst this was something we so wanted to do I had so much anxiety about going, Simon being well enough and keeping well whilst we were away, the COVID risk of travelling. Due to Simons condition, we were unable to get travel insurance for him, that’s something I worried about (a lot!), but I knew if anything went completely wrong, I would just have to get Simon back to the UK via a ferry. Our journey to France was via Portsmouth, we knew that we had a video call with Simon consultant that afternoon, and so we parked up in a Tesco car park and logged on, our relationship with Simons consultant is great, he loved that we were getting away and ready to board a ferry. Following the usual conversation with him he then uttered the words “I don’t know how to break this to you”. Simons CEA was once again on the rise, this for us was our worst nightmare and the timing was not the best and the fear was etched on both of us. We decided one thing, nothing could change this news in the following days and we dug in and decided to carry on and try to park this news. That wasn’t easy on either of us and we did occasionally over the following days talk about what was going on and where we were going. France was something Simon had wanted to do for a long, long time, he loves history, particularly the history of the second world war and so visiting Normandy was something he wanted to do, we packed a lot in and I ensured he saw everything he wanted to. It was an amazing time for both if us. Following our return Simon was back on treatment but this cycle did not go well, and Simon could not shift the side effects and so after a conversation with the oncologist we decided to delay until his CT scan. This is when we had the most heartfelt and heart-breaking discussions with each other, this was regarding whether we carry on with treatment and we concentrate on quality of life rather than length of life. There were some caveats to this and that depended on his CT results. We now have them, and this was a mixed bag really, and didn’t help any decision making. Two areas had shrunk by a few millimetres, some lung areas and grown and some stable, strangely everything under his diaphragm is stable, and this was for years our biggest area of concern, and still remarkably his liver remains free from disease. But obviously areas of growth are an issue. We chatted long and hard with Dr S, our oncologist, we talked about how the chemo was working, and the future. These are signs that chemotherapy is starting to fail and possibly not holding things as they were, we also have been told that having chemo breaks are not helping and really cannot have them going forward. We know we are coming to the end of any treatment for Simon, it has kept him alive much longer than we could have ever hoped and ending it all does feel slightly like falling off the edge of a cliff. So, our decision for now is to have another two cycles of chemo and reassess the situation, checking his CEA and ability to manage the side effects. His CEA on his last two tests and dropped slightly again, and so cancer as ever is having a merry dance with us. So, we are going on a short three-night trip away in the van, to our favourite site in mid Devon, this closes in a few weeks for the winter and not opening until April. Simon was keen to go here, and I can read his mind, will he still be here when it reopens? How do I manage these feelings and thoughts? How do I manage any of this going forward? We never ever ask for time scales, Simon a defied all things and even Dr S has said that the chemo has held things far longer than he ever expected. We have always been stronger with a plan and knowing where we are and at the moment I feel a bit lost in it all, how do we tell everyone (apart from anyone reading this) that we have made this decision to stop treatment, if that is made in the coming weeks. His children, his Mum……..will they understand and know this is not giving up, this is taking control. So, thats us and all our news, we will as much as we can plan short trips in the van and live a life worth living. Christmas is coming up and for the first time in a few years Simon is looking forward to it. So that means I can go all out with decorating the house this year! As always, onwards and upwards. TTFN

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5 Comments

  1. Pauline

    What a roller coaster for you both. I can imagine the difficulty of choosing quantity versus quality. Whatever your decision in the future, it’ll be the right one for you both. Sending much love to you both. Xxxx

  2. Beverley Allingham

    So eloquently and honestly put Ali. You are both such incredibly strong people and have dealt with all of this with courage, humility and a great sense of fun and adventure. Keep going and living life as you can. Love to you both xx

  3. Chris Field

    As has been the case for some time, the pair of you are an ABSOLUTE inspiration. It sounds as if you have become expert jugglers in the most challenging and emotional environments. In doing so, your love for each other comes shining through – keep the faith xx

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