Its amazing today looking back at how this blog started and to be where we are now. We wanted to be able to tell our story of Simon going through HIPEC surgery at Basingstoke and here we are two years later still able to update and still here. Looking at the way this blog has meandered through this journey, and how far we have come in that time it is quite staggering how the years have passed. In February 2021 it will be 5 years since Simons initial diagnosis of bowel cancer, its a big milestone that he has made the 5 year mark, initially he was diagnosed as stage 3, this has moved to stage 4 with the spread to other organs, he has been on a palliative pathway for 18 months now, and we continue to fight. I continue to look for research trials and scour the internet, speak to other patients and carers for anything else we can do or look into. I am thankful we have got to five years, for the things we have done, places we have been to and things we have seen.
In many ways we know we are very fortunate that we are heading into another Christmas together, I think we both feel better about this Christmas strangely than we did last year. Last year Christmas came with a lot of sadness and we didn’t want to celebrate, I remember putting the decorations away early in the New Year and dreading seeing the boxes again, but at the end of November we ventured into the loft and got the boxes down. We have completely pimped the house for Christmas, lights and tinsel everywhere and have decorated the outside also. 2020 has been a difficult year for everyone and looking back at last year we would never have imagined this year would have taken the twists and turns it has, but we are grateful that we are here, and think of those families that have lost loved ones throughout the past year.
Simon is currently off chemo, he was, until recently on Lonsurf. We knew this was a chemo that would possibly not be able to hold the spread of the cancer, and it appeared this was to be the case. He had three cycles, each cycle was delayed due to the effects it had on his blood counts and his regular blood tests showed his CEA (cancer markers) continued to rise. This is now at the highest level it has ever been at and so the difficult decision to stop treatment was made. This decision was followed by a CT scan that showed that his lung mets were the ones that were continually growing and causing the problem. We are amazed and relieved that his liver still remains cancer free. Whilst this was not positive news the scan results were the best they could possibly be and so we will take that. We are having a break from everything and in the new year will meet with the oncology team to discuss the last line of chemo available, this will be a return to Oxyaliplatin and capecitabine chemo regime. This was the original chemo and comes with a lot of risks, mainly an increasing in the neuropathy that Simon still has from this previous treatment in 2016 and so the numbness in fingers and toes will get worse, however what do we have to lose.
Simon is pretty symptom free at the moment, and so the team want to hit him (not literally) with this chemo at the optimum time for the optimum effect, there are no guarantees this will work, the best we can hope for is to hold the growth and spread for a time but we hope that this will give us some precious time.
We continue to try to keep ourselves busy and looking forward, as much as treatments, Covid and lockdowns will allow, we plan to take the van away again if we can, have day trips and mini projects. Planning and keeping ourselves motivated we have to do in order to keep our mental health in check. When I say plan, we usually look at a maximum of a couple of weeks to a month in advance, anything else seems too far away and impossible to gauge where we might be.
It is easy to get overwhelmed by everything, and I am sure in 2020 a lot of people have felt the same, with the changes enforced on many of us as to how we live, move about and work it had felt for a lot of people that their freedom has been removed from them. Strangely it is the freedom that patients and families with a cancer diagnosis face daily, a lifestyle enforced on them that they didn’t ask for or want. It has been interesting to observe the reactions of people to the situations they find themselves in, we have seen a lot of kindness, but sadly there is a lot of selfishness. In the last 12 months there have been national initiatives to #bekind, ‘clapping for key workers’, yet we ask people to wear masks, keep your distance and to protect yourself and others and suddenly a wave of protests on our rights are being diminished when actually we are trying to protect and look after people.
During this year I have had numerous conversations with my Mum and Mother-in-law about living through the second world war, and in the years in post war Britain, it was a time where the people of this country had lost so much in lives, livelihood and infrastructure. Where people dug in to survive, and so little to offer but offered everything. My Mum lived through the war in London, my Grandfather was in the London Fire Service through the war and they saw complete devastation and loss. She found it within herself to put herself almost back into that time to deal with lockdown, she lives on her own and has spent a majority of the year on her own. There is something very humbling about listening to someone who is 84, fortunately for us she is in pretty good health, she hasn’t complained, she has gardened. She set herself a project, if it wasn’t raining she went into her garden, and my word she produced an amazing sight, plants, flowers, colour. We were able to find someone to cut the grass for her, but everything else was her work. She has four daughters, nine Grandchildren and nine Great Grandchildren that she would normally see, hug and be with and she hasn’t be able to, but she has dug deep and got through this year, as winter has approached she has found it harder to be indoors, and so now she has arranged her vaccination in order to protect herself and so look forward. She has lost a year of being able to live freely, and at 84 these years are luxuries but she hasn’t complained, she has learnt how to Facetime and use zoom.
Christmas this year is going to be difficult for everyone, we are actually very sure this is Simons last Christmas, but we are dealing with the cards that Covid has dealt us, protecting ourselves and protecting our families. I am hoping that come the Spring we will as a family be able to meet more openly and safely and we look forward to those days, Christmas parties in the Spring have a bit of an edge to it.
So onwards and upwards as always Mr C, the tree lights are on, the fire is lit and the fizz is chilled.