This blog is possibly a form of therapy for me. I’m not too hot on opening-up, so the anonymity of the www allows me to vent my emotions in a way that I haven’t been able to or won’t mention to anyone else. It’s been a rough 18 months, so here goes …
Just before Christmas in 2006 I had a phone call to say my mother was severely ill. Two days later and we were making plans for her funeral. Within days of her death my wife collapsed at home with a heart-attack. Her previous complaints of neck and shoulder pains suddenly began to make some sense. Fast-forward to 2008 and she was finally diagnosed as having a permanent heart condition. After a bitter fight and desperate appeals to consultants she has been given a basic pension at 47. She continues to suffer from considerable difficulty.
My own diagnosis of Non-Hodgkins Lymphoma in the midst of the above (September 2007) was therefore a spectacularly bad stroke of luck. OK, parents do die and partners can become ill – although not normally all at the same time. I’m not writing this to pull at the heart-strings of readers, but more to explain the backdrop to our own circumstances. My wife’s heart condition can be contained, we hope! My own cancer might yet decide to take on a further new life of its own.
My own condition started with abdominal pain which my GP quickly decided was an ulcer – all diagnosed without examination or eye contact. Three months later and in frustration I managed to hitch a ride to A&E in an ambulance when the pain went beserk. I felt better the next day, but they weren’t keen to let me out – now I know why!
I’ve read the various Blogs and experiences of others on here. It’s a funny thing, cancer. It scares the hell out of people around you. The whole experience is full of bitter disappointments and gentle surprises. I’m shocked by the abrupt evaporation of some of my so-called friends, but I’m delighted by others who recognise that I don’t need tea & sympathy (not too much, anyway) just someone to listen and take the mick out of me & my condition in equal measure.. I’ve got family who’ve been great and others who have yet to visit at all. Cancer is a great leveller. Enough from me …
FormerMember
I've just read your blog and wished to say hello.
My husband was diagnosed with indolent follicular lymphoma (stage IV) in 2001 and was on "watch and wait" up to this June when the lymphoma transformed and went nasty. So heavy chemo had to be started right away and we are presently in the eye of the storm (ie, after chemo but awaiting an autologous stem cell transplant).
I do not know that I have any particular advices to give except to learn how much you can about the disease, but at your own time and when you are ready. Knowledge is power and lymphoma sufferers usually becomes very knowledgeable about their own conditions as this is a disease that may often give you time to think and pounder.
I am not British but I think the NHS is great, though suffers from being a little bit stiff and not the most proactive in new treatments. You should have seen the reactions when I requested a copy of my husband medical file ! Then I looked blankly at it for weeks before gathering the courage to go though it and investigate. Of course things were not as bad that I thought they would be.
I wish you both all the best. People often tells me that I am a rock to my husband. I think only him knows how I much I feel useless and lost, probably in the very same way he is.
On the bright side, we have discovered that we can still be happy together, even now, as hapiness is a thing of the present. So I hope you still are.
Have a good week.
Sophie
PS Our GP was great, he did follow up on my husband and when the lymph nodes stay swollen for a couple of week promptly send my husband to have a biopsy though he had no other symptoms at the time. His only fault was that he was quite depressed and we always felt defleted after a visit with him during the "watch and wait" period.
so glad to see your blog, and so sorry that you have both been through so very much, and yes, we soon find out who our real friends are at times like this, they don't mean to be cruel or unkind, they just don't think like we do now, and lets face it, we wouldn't want anyone we knew to feel like we do, ok, the odd oncologist or gp, but thats normal!!!!!!!!! i am so looking forward to seeing some of your poetry if you care to share, i myself am a great lover of Leonard Cohen, John Betjeman, Thomas Hardy, T.H.Lawrence, to name but a few, i find my feeble attempts at poetry help me to cope with the anger and frustration i so often feel, yet i am so fortunate to have a good prognosis, a great family, but i truly do believe that sorrow can be one of the hardest emotions to dispel. enough of my mindless ramblings, welcome to here
I never wanted to blog either. But this has been so helpful. I guess because it's all in the here & now. What we are experiencing. My husband has esophageal cancer & has been given 12 months, that was in Dec 2007 so who knows what's in store for us.
I have really cherished this www. I look forward to my "friends" & we learn some things, get tips, & complain together, release the pain & hurt & confusion.
I am sorry to hear about your Mom & wife. That's a lot to take at once. Too much. Glad you have joined in.
Thanks to all the other weekend who kicked, prodded and poked me into pulling myself together. Oh, and there was some kind and gentle persuasion in there as well. As a previously 'together' person I now often find myself walking in some dark places. So, thanks xx
Yes, cancer is a very dark place to be wandering around in, lost and confused. The feeling that our own bodies have been hijacked, and that we have so little control over what is happening is frightening at first. We do knuckle down to treatment, and adapt to the new situation - human beings are very good at that, although personally speaking it was a struggle as my life was in shreds just as I thought I had at last got going!
Thinking about you. Sending best wishes to you and all the family xxxx Penny
