I am 69 and my husband is 70. My husband was diagnosed with oesophageal cancer about 2 years ago. Following chemo and radiation the tumour was dealt with but the bad news was that it had spread to his liver. Following various treatments he has now been told there is nothing more to be done. We only moved from WA to Queensland about 3 years ago where my brother and family live. We have 2 children, a daughter who is currently in the Pilbara and moves around following her husband’s job which is mining related and a son who is in Europe. Due to my husband’s illness and the chemo side effects we were not able to put a lot of effort into building up friends and a social life here. It’s funny how the invitations dry up as soon as people find out about the cancer. All our lifelong friends are back in the UK. I do not really have anyone I can confide in.
Over the past 2 years there was always hope that his life could be prolonged a little longer and his death always seemed to be some time in the future. The doctors have not really been able to give a time limit as they say ‘everyone is different’. I see my lovely strong husband becoming more tired as each week passes and I am really worried about how I am going to cope with everything on my own. I do not have any close friends to call on. My brother and family live not far away but he is much younger than me and they are still working sometimes at weekends as well. I am already having to take on more and more as my husband gets very tired after any exertion plus he is trying to cope with his pain, and I am starting to struggle, that’s without having to nurse him yet. I am currently shattered after having to clean out the pool filters. I wake up in the night in a panic attack and cannot get back to sleep.
We had a visit from a community palliative care nurse and when I asked about support she only seemed to be able to focus on emotional support (which is why she referred me to this website). How do others cope? Does anyone know if there is any help out there and what such services cost? I have seen information about agencies such as Blue Care, but would imagine they are expensive. Is it just a question of buying in services for the practical side such as mowing the lawn and sorting out the pool?
Conversely my husband has just been offered a place on an immunotherpay clinical trial with his first appointment this week to undergo lots of tests to see if he passes the criteria. He says he wants to take part as then he will know he has tried everything. We are aware that it may not work and although I want to support him I am worried that this will take away the quality of life for the time he has left. There will be loads of appointments etc and the treatment itself is not without side effects. I feel quite resentful as we have already been affected by this as when he was offered a place he was told he would be contacted to start the trial within a couple of weeks. We had intended to go away on holiday to Tasmania but didn’t go as we were waiting for the important phone call. It eventually came after 2 months wasted. Now it’s too late as I don’t think he would be able to cope with the travelling.
My head is now all over the place, I do not know how to feel. Yes, we are hopeful for a positive result but at the same time we have to prepare ourselves for the worst. We have already had 2 years on an emotional rollercoaster and this is just being prolonged. My daughter said to me she feels like she has been grieving for 2 years. Our son and daughter have taken it really hard, especially I think as they cannot be with us. I am the one who has to offer them emotional support especially for my daughter as her mother-in-law is deteriorating with motor neurone disease and she has to support her husband as well.
I’m sorry for the really long post.
I'm so sorry you are both in this situation. It's so hard. But I'm glad you've found this forum. It's a great place to vent/ask/encourage and just connect with other people who are affected by cancer.
My husband was diagnosed with stage 4 Follicular Lymphome in 2011, so I know a bit about what you're going through. For about 12 months I've been a member of a Facebook group 'Caring for Husband's with Cancer', and they are great as well. It's a big group now, about 1200, so really active, and very encouraging and supportive. I encourage you to join that as well- there are guaranteed to be women who in your demographic in similar situations. You are definitely not alone.
Sending encouraging hugs, Emily
My husband just received some further bad news, taking away his last glimmer of hope. We had an appointment today to start the ball rolling for his taking part in an immunotherapy trial. We have been waiting ages for this only for him to be told during the medical history check that because he has had ulcerative colitis in the past (which apparently is an auto-immune ) he does not meet the criteria for the trial. Such a blow. I don't know why they didn't already know this for goodness sake. I am sure he would have mentioned it on his medical forms for the hospital. Such an emotional roller coaster, it's so hard.
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