Hi. New to this so forgive what i suspect may be a long post.
My husband has been ill since June 2019. Chest infection led to sepsis, lost his peripheral vision due to nerve damage from it, he's been on steroids and immunosuppression medicine to preserve his remaining sight ever since. He was in hospital 9 weeks. He had a bit of upset about him having to stop driving after over 40 years as it was a huge life change but wevcame through that together.
Unfortunately, he had an embolism in October 2019 as a result of his long stay in hospital and has been on blood thinners since. He's also had abnormal blood tests and various lingering infections over the last 4 years and being so immunosuppressed he was acutely ill after catching covid last year. Unfortunately whilst on a cpap machine he developed a 'sticky blood' bloodclot in a left artery in his head, which caused irreparable damage to his retina in his left eye. So all in all he's had a rough 4 years.
His rheumatology consultant always suspected that there was an underlying cause for his blood being abnormal and in mid 2020 he had a bone marrow biopsy which came back clear. As things were no better he had a second biopsy in October 2022 which came back in November, with a diagnosis of low level Chronic Myelomonocytic Leukemia (CMML). It was a shock to us both, but we were told no treatment was needed yet and he was to be on Watch and Wait, with blood tests and phone appoinments to follow up. We were sent home with booklets about CMML and a research project.
We are always juggling lots of hospital and blood test appts for opthamology, rheumatology, respiratory (covid follow up) and coming to terms with his more recent sight loss needs but these somehow feel practical and I feel I'm doing something. Why is it the Watch and Wait seems more stressful to me. My husband seems OK with it and just says "it is what it is, they've said I can live the rest of my life like this so why worry". But I can't get my head into that place yet. I try not to get upset but thoughts of what might happen are often my night time companions. Thanks for reading and any advice at all but especially on coping.would be welcome.
Hi Sueb143 and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.
It's I'm sorry to read that your husband has been diagnosed with CMML and I know what a difficult time this will be for you both.
I can see that you've already found and joined the carers only group, which is a safe and supportive place to share your worries and emotions.
When you feel ready to post there, you can start a new post in the same way as you did here, and join in with existing conversations by clicking on reply.
It would be great if you could pop something about your husband's diagnosis and treatment so far into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
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"Never regret a day in your life, good days give you happiness, bad days give you experience"
