Hi, my husband of 53 years was diagnosed with bowel cancer in February 2018, after more scans another site of primary cancer was going in his lung.
after much toing and froing as to which cancer took priority the the colon team performed a colostomy in June that year. It was very successful and all cancer was removed.
he saw the oncologist dealing with the lung cancer a month later, to our horror it had increased in size by 50% and was deemed inoperable.
the team said that fortunately the cancer was the correct type, anc da be had the ‘right’ DNA to be offered immunotherapy, it was explained that there was no data around recovery rates etc, but very positive things were happening. We had never heard of it.
Oncologist explained it wasn’t without risk, but any side effects could be dealt with, so on August 2018 we embarked on three weekly infusions, for nearly a year All was well, cancer had shrunk, we were all very positive,
however June saw everything fall apart . Dave had never had any symptoms around his lung cancer, but he was increasingly short of breath and coughing. For three weeks the triage team said nothing to worry about, was just the heat!
he was admitted to hospital in July, misdiagnosed with pneumonia, finally realised it was pneumonitis, a potentially fatal reaction to the immunotherapy.
Treatment was stopped, huge doses of steroids started, in and out of hospital as the pneumonitis kept flaring up each time steroids were stopped.
so, 2020 is here, still on steroids, can just about manage to get around the house, cancer is growing again, oncologist monitoring him monthly, and would like to try radiotherapy but is unsure if Dave will be able to tolerate it, because his lungs now have fibrosis in them, due to the pneumonitis.
Ithete is nothing else to be done.
We’re trying to come to terms with it all, but it’s so hard. Last thing on my mind at night is what’s going to happen, and wake up with the same thoughts.
finding it so difficult to cope, and feel completely overwhelmed,
I'm not surprised you 'feel completely overwhelmed'. You don't say whether your husband's team have said that he is now termed 'incurable', but I wonder if it might help to pop into the supporting someone with incurable cancer group? They are lovely people and will understand what you are going through. Are there any local groups you could go to? Face to face support is so helpful. Maggies Centres are wonderful, pop your post code in to see if there's one near you. I do hope he picks up soon.
Love and hugs,
LoobyLou If you find dust in my house, write your name in it. When the signatures overlap I'll get the polish.
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