Little update from Bekky
The last couple of months have seen quite a considerable change in Rich and his wellbeing. Gradually, slowly, he has become increasingly weak and unwell. He is still able to be at home, for which I am very grateful and he is not yet at the stage where he needs to go in to the hospice. This does mean that I am now caring for him full time. He isn’t able to walk very far and is using crutches to help. His legs are very swollen, in part due to being sedentary but also due to the spread of the disease in his abdomen affecting the flow of blood to his legs. This means he has to keep his heavy and hugely inflated feet up all day. He is also becoming a bit wheezy as his lungs try to breathe through the many tumours. He isn’t able to get dressed alone, make a cup of tea, bathe, lift his feet into bed at the end of the day. He is so bloated he feels he’s going to explode.
The latest appointment with the oncologist told us that there is a new growth between his bowel and bladder causing a hole, which is causing infection. But one of the most frustrating things for him at the moment is fatigue and weakness. Everything is such a huge effort, just standing up from the sofa is a mammoth effort that takes time to recover from. He is still just about managing to climb the stair to go to bed at the end of the day, but this is like climbing a mountain and it takes a long time, slowly, one step at a time to catch his breathe. But we have our routine, our techniques, I help with what I can and he pushes through the limitations where he can. And we get there in the end, but he is totally exhausted by the effort.
It is utterly heart breaking to witness his slow and gradual decline. Watching him get weaker every day. Its like watching a slow motion car crash where you know it doesn’t end well but there’s nothing you can do to stop it. Its just happening. But this has brought us even closer together, more so than anything we have experienced in our lives before. There are moments of great tenderness and beauty, honesty and love. We don’t know how long he has left, it could be a few weeks, or a few months maybe. It is painful and hard to get our head around the reality of death and dying, especially as life around us goes on as usual, people get on with their lives as normal yet ours is anything but. Its like we are in this cocoon, detached from the outside world, a parallel universe, another reality. We have been having really difficult conversations about whether to continue chemo of not. Quality of life versus treatment. There is no right or wrong, just a painfully hard decision to make.
The hospice team have been completely amazing in their support. We now have a house full of handles and every piece of furniture is raised to make it easier for him to get in and out of. There is a commode in the bedroom so he doesn’t have to deal with the stairs at night, we have a very clever inflatable chair for the bath and so many other pieces of equipment to make life a little easier. On top of this they are on the end of phone 24/7 with a team of experts which is so reassuring. As and when he isn’t able to manage the stairs anymore we will get a hospital bed installed in the sitting room, to keep him at home and ensure he is as comfortable as possible.
The thought of him not being here is unbearable, but the suffering is very present and for that reason alone, I want him to be at peace. But from a selfish point of view, I want him to live for as long as possible. He is my world, he is my soul mate and I just don’t know how I will manage without him. I am so lucky to have the most amazing group of friends around me who are so supportive and present. Thank you, you amazing humans, your love means more than you will even know. It is also quite surprising the strength you can find within yourself when not being strong isn’t an option.
Life is precious, life is fragile. Go and hug those that you love, you never know when life might suddenly change direction.