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HISTORYDiagnosed with stage 4 large diffuse B Cell non-Hodgkins lymphoma triple hit in Oct 2018. Within 2 months I had developed peripheral neuropathy and a drop-foot. 3 months later one leg became pins and needles from foot to thigh and leg stopped working from the knee down so it gives way, leading to several broken bones last year. A year of chemo proved ineffective and the cancer destroyed nerve and muscle in my right hip/thigh area so I became wheelchair dependant. So after being diagnosed as terminal last October I was put forward for a T-cell transplant. I had this in November and then went into a major cytokine release syndrome with seizures, pneumonia and flu! I was in a coma on life support for 3 weeks and spent a total of 7 weeks in hospital, coming out on Jan 10th. NOWThe good thing is that my 3 month scan was clear. But I seem to be the only one that isn’t delighted. I think back over the years of my life and it was so happy. I loved walking, fell walking in the Lake district, the Highlands, and around where I live in rural Norfolk. The outdoors was my safe place. Now I can’t walk Life just seems pointless. I have tried to get out on my motorised chair when I can but wheelchair accessible paths are few and far between. I can’t even do the gardening any more. I’m so depressed and not a day goes by when I don’t mourn over what I have lost. My husband and I should have retired last summer but he is now having to work an extra 2 years as I have now lost my income. and to cap it all my last child left home this week and I go past his door and see his empty room, and because of Covid I couldn’t even hug him goodbye. I’m just so depressed. Thanks for listening
I am so so sorry to read your post, you have been through so much and are still going through a lot, so my heart goes out to you. Have you spoken to your medical team or GP about how you are feeling? They may be able to put you in contact with a counselor or psychologist who may be able to help you work through these emotions and try to process them in the best way that works for you? I too have a blood cancer, although haven’t had the long-term effects that it has had on you, but I do appreciate that the treatment can be quite brutal and it was around 15 months from diagnosis when I started to experience emotional problems so I have some understanding of how you might be feeling. Counseling really helped me as it allowed a safe space to let out what was going on inside me and in turn this helped me to find a way forward. It was not the way forward that I had hoped for, but it was a way forward nonetheless.
I am wishing you all the very best,
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Hi Greg. Thanks. It does help to know that someone is listening. The hospital in London where I was treated offers counselling to all people who have been in ICU but they don’t do it in Norwich and Hubby, quite understandably, doesn’t want to drive 4 hours each way just for a one hour session. I did have counselling at my local big C centre last year but was only allowed 6 weeks which I had. They do have group sessions for those with any type of cancer but of course they are all cancelled now and I HATE talking on the phone. So this is my only connection to anyone who understands. Thanks
Things that have helped me in my darkest moments are:
1. Emotions are only temporary - yes, they can be incredibly painful, but they can’t and won’t last forever
2. there is beauty and joy in the simplest moments
3. the past is gone, we have to just let it go. The future is unknown and is not ours to own. The present is the only thing we can control.
Distraction worked massively well for me. I decided to write a book. It was fiction but it allowed me to pour out everything that was inside onto the page. It also distracted me from tunneling into dead ends.
I hope these help in some way LellyNelly. The answer will be unique to you and sometimes it just needs time to present itself. Here’s hoping that it comes to you sooner rather than later and in the meantime, please continue to use this space, I know you’ll come across people who have a chance of understanding what you are clogging through.
Hi Lellynelly, these services may well be limited at the moment but for future reference check to see if you have any Local Macmillan Support services in your area.
Up in the Highlands our Maggie’s Centre is the main focus for cancer support and many many folks will do the 4-5 hour round trip for their various support services - I see there is one in Cambridge.
Mike - Thehighlander
It always seems impossible until its done - Nelson Mandela
Sending a hug from 12,000 miles away.
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