Being Hopeful

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Hi all

I haven’t been on the forum for some time, we had finally moved down to Devon to enjoy our long planned retirement from Cheshire after my husbands APR surgery, moved into a new house and started chasing appointments for mop up chemo etc. However, they found enlarged lymph nodes near his spine but managed to get him into Bristol for targeted radiotherapy. He finished his last treatment on the 17th March, followed very quickly by lockdown. The mop up never happened and the discussed scan after 6 weeks never materialised. He finally had a CT scan last week and his oncologist rang with the results on Monday, it’s spread to his liver and lungs. He said if he had no treatment he would have months left, my husband asked what the average time is with treatment, he said about 2 years, could be more could be less, depends on reaction to chemo, which barely touched it last time. I feel so guilty I should have done more.

And so, sadly I understand where you all are right now. I have at least stopped crying, I’m not alone, as our daughter and our 4 year old granddaughter live with us but I find myself dreading the future, we’re both 68 been married 45 years, can’t allow myself to think of him not being there. We’re going through the motions of a kind of normal but it’s so hard, so painful, tears are never far away, and our daughter is struggling too. My family who live far away, keep telling me I’m strong, when really I just a good actress.

 At least now they’ve prescribed him some morphine so he’s more comfortable and he refuses to give in, his strength makes me love him all the more. He plans on playing golf with his brother when he comes down the day before he starts his 6 to 12 cycles of chemo next week. He still looks fit and healthy, know one would know.

Be kind to yourselves.....Budge

  • Hi Budge, can I just say that my heart aches for you all. There's nothing wrong with crying and please try not to feel guilty, who knows what may or may not have happened if there wasn't lockdown?? My hubby 48 had LAR right before the world went mad ,and we found like you, that appointments churned to a halt after. Slowly picking back up now. I was having counselling thru Macmillan earlier this year, which was helping and they've been in touch to say they're starting it again by telephone .. Might that be an option for you? Or your daughter. Being the spouse /family of the patient is so very tough. Outside looking in, at times helplessly. It's really tiring. Anyway big, big hugs... And good advice to sign off with, be kind to yourself xx

    Ps we live in Cheshire 

  • Hi , please don't feel guilty. Lockdown put so much treatment on hold and I know we all worry about what will happen when the treatment has been delayed. I understand; I sometimes walk round the house crying when no-one else is around and the last we heard, before lockdown, my husband could have several years. When he took the dog for a walk today I danced around punching the air to make myself feel stronger and it worked. So, for now, I'm strong; tomorrow, like you, I may be back to acting. Thinking of you.

    Love and hugs,

    LoobyLou
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