I thought I should probably just post a blog actually explaining Hodgkin's disease and explaining where I am. This is mainly for my friends and family to stop them from worrying but hopefully it's interesting for others too!
So I know it is very google-able but Hodgkins lymphoma is basically cancer of the lymph nodes. There is another type of lymph node cancer called non-Hodgkins lymphoma. They consist of different cell types and have different patterns of spreading. When I was first referred to the hospital I (perhaps stupidly) googled my symptoms which essentially was just a painless lump behind my left collarbone. Hodgkins lymphoma was highlighted to me at this point as it is common in individuals in their 20s and over 50. For me it was symptomless but for many people there can be symptoms including night sweats and fatigue. Interestingly there has been found to be a loose link between Glandular fever and Hodgkins lymphoma, and I actually had a bad case of Glandular fever at the age of 17 whilst studying for my AS levels.
There are different stages of the disease: 1, 2 ,3 and 4, and there are letters: A and B. A is assigned to symptomless patients and B is assigned to those with symptoms. I was told originally that I was probably stage 1A or 2A which would have meant the disease was localised to my left shoulder and involved 12 weeks of chemotherapy, but following my PET/CT scan it became apparent that it was stage 3A and therefore 24 weeks of chemo (darn it). But the results from the bone marrow extract showed it hasn't spread to my bone marrow which was great news!
Hodgkins lymphoma is extremely treatable and has generally got great outcomes. In the words of the nurse in Birmingham 'if you've gotta have cancer, this is the one to have'
When I first found out I was having 24 weeks of chemo I'd tell people "It's okay because I'm just pressing pause on my life and I'll press play again in 6 months time". But now I have a different outlook all together and would like to live by the following saying:
"Life isn't about waiting for the storm to pass. It's about learning to dance in the rain."
(another of mum's plaques - sorry!)
You are so brave! Wishing you all the best in your treatment, Matilda (joyce's home pal ) x x
ReplyDeleteHi - I've just stumbled upon your blog and I have never read something so inspirational in my life. There are so many things you've said that have been so poignant to me. I spent a while in hospital (broke my pelvis - nothing like this) and many of the mottos you've used or points you've made really ring true. I decided to comment on this post as my mum actually bought me a wall sticker of the exact quote about dancing in the rain which has been firmly placed on my wall ever since. You're absolutely amazing and your positivity is contagious. Wishing you all the best XX
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