Hello people, I am a carer for my husband. He has Asperger’s which always complicates things. He has a total need for absolute clarity which often disconcerts people who feel that they are being clear. Anyone else living with someone on the autistic spectrum will know about this.
we have known that he had a kidney cancer and a cyst on the other kidney for over 7 years. He has multiple other health problems which meant that surgery was never a viable option for him. The cancer has been very slow growing but he was recently transferred from urology, where they had been monitoring it, to oncology where we learned that it had started to metastise. It is now in the lymph nodes around his kidney, the cyst has become cancerous and a recent ct scan showed evidence that it is now spreading into a lung and his abdomen. He was put on pazopanib (oral chemo) but after about 10 days of this his mouth and throat became very sore and painful so that he could hardly swallow or speak. He also had diarrhoea. He rang the nurse who told him to go to A&E. They checked everything but couldn’t find any evidence of infection. What happened to him is a listed possible side effect of pazopanib so he was told to stop taking it and given a special mouthwash as advised by the oncology team. The problem improved. We already had an appointment with the oncologist. When we went to that he said that it was definitely a side effect of the drug and he absolutely would not prescribe it again because that side effect was potentially lethal. There is no alternative treatment.
Of course we asked what the outlook was, whether he would see Christmas 2021. We were told that he probably would but probably not Christmas 2022.
My husband now feels that he is living under a death sentence which of course he is. He already needed a lot of attention from me, he is hopeless socially however hard he tries. This is pretty common with Asperger’s people. Others feel his anxiety and his need for clarity is often interpreted wrongly and people are put off instead of being open to listen and find out about why this happens so that they can adjust and help him. This means that he is totally isolated apart from me and his son who is also autistic.
he is desperate to catch up with what he sees as missed opportunities, especially with women. There is no way that he would be unfaithful, our marriage vows and me mean too much to him for that. However, he needs a lot of sexual connection to an extent that I find too much. If I pull away he sees it as rejection which from his point of view it is. From mine it is not total rejection, it is safe-guarding myself.
I have a history of severe depressive illness and am too easily overwhelmed. I want to meet his needs but am limited in what I can do. I also have other interests which I need to keep going for my own health.
This is extremely difficult to cope with for us both especially as we live in a tiny flat so are constantly together. I don’t want to lose him.
the next step is another scan in 6 weeks and the oncologist in 8 weeks. What we need to know is how this might progress, what might happen to him and how long he may be able to function reasonably for.
This is all so hard.
Isobel
Hi Isobel,
My son has high functioning autism but it is my wife who has the cancer.
Things are unfortunately going to be hard for you both. My wife never wanted a prognosis and I really struggled with that but in reality it is worth remembering they are a best a guess based on averages and things change all the time.
I did a living with less stress course that really helped me. I was perhaps living in a state of pre-grief trying to work out how I would cope in an uncertain future that was certainly much blacker than things actually turned out to be and that was stopping me enjoying what I had.
You might like to look at Looking after someone with cancer and I really encourage you in your comment about looking after your own health.
It might seem like something of a platitude but there is a quote “Worry does not empty tomorrow of its sorrow, it empties today of its strength.” that I have quite come to like.
<<hugs>>
Steve
Hi Isobel,
Janice is doing really well, it took her a while to find a level playing field where she is "living with" rather than defined by cancer. The one thing that triggers her is when people say something like "you are so brave" - she can be rather quick to point out she was not given a choice in the matter.
I find this community so great because it does not shy away from talking about cancer - and often a whole load of other things besides - including sex! Just the sort of conversation that does not come up over coffee with friends more generally.
One of the positives I had was a world book day event, the speaker was James Withey and people can read a bit more about him here. I have a signed copy of the recovery letters book.
When I was a school governor one of the lessons we learnt was that school is only one way to learn. There are many highly successful people who really struggled at school - though perhaps school is really about turning out normal average people - average people tend to fit in better but the world would be really dull if everyone was average.
One of the teachers in my sons college has an almost identical academic record to Michael - including the autism and that can be really helpful.
<<hugs>
Steve
