mu husband began our cancer journey about 5 weeks ago. I say "our" because we'll face this together. We had a call with the professor at the Marsden on Friday, and was very direct with us as requested. Aggressive stage 4 retroperitoneal dedifferentiated liposarcoma - 5 tumours. So - he is now going to be an inpatient for 3 days this week where they try a highly toxic 2 drug cocktail of chemo, and hopefully he will be out on xmas eve but obviously need a lot of care. Where i am struggling the most is that we know the average life expectancy is 19 months and he doesnt want people to know that; but i want people to know because i dont like not telling the truth and also I'm struggling to be cheery and we'll beat it etc etc when what i want to do is have a good cry - which i am doing when i'm on my own.
I'm also a very practical person and am already thinking of the things we need to arrange - with his business, our finances etc etc yet i dont dare mention it again as i did once and it didnt go down well. I know its very early days and i will constantly hope that chemo is amazing and he has a lot longer with us. He;s my soutmate and i am distraught at the thought of losing him. Our kids have just left home, his business is going well and we were planning on having the most amazing time together and growing old disgracefully.
I'm not looking for pity just genuinely wondering how others deal with this, and especially how do i not betray my husband's trust without it eating me up inside. He has told his best friend so i can at least have proper conversations with him but i can't even tell my mum the truth. His worry is around his son (my step son) and i get that but he's not the only one dealing with all this.
Sorry - just needed to get that off my chest before he comes back from having his PCR test ready for admission on wednesday.
thanks for listening. Any words of wisdom appreciated.
Hi hermes
As I am sure you know already sarcoma's are rather rare - my wife has Leiomyosarcoma and one of the more challenging things there can be getting any kind of reliable statistic so prognosis becomes more problematic. My wife never wanted a prognosis and I really struggled with that but now some years down the line I recognize how much of a guess it would have been.
I was also lucky that my wife is very open about her cancer, I really do not know how I would have coped without that because for sure people will pick up on "something" being wrong. For children it can be even more difficult in that they sometimes look to blame themselves and other times will imaging something ever worse that it really is.
Some of what you talk about sounds a lot like something often referred to as pre-grief - grieving for the loss of the life we expected.
I did a living with less stress course that really helped me, taught me to appreciate what we have rather than the future we may have lost - though of course it was never guaranteed anyway. The breathing exercises were also great in helping me cope with the inevitable curve balls that live loves to throw our way.
Do vent on here whenever, there is always someone listening and we do not do pity on here - we understand because we have been or are there everyday.
<<hugs>>
Steve
