Never thought I’d need this group again

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Hello all,

I’ve been around the site a long time and was a member of this group when our daughter was going through a long long illness with a blood cancer. She’s doing ok though still has ongoing problems. 
since then I’ve had breast cancer (still on tablets) and ‘hang’ around that group a lot.....

Now it seems my husband of 51 years has renal cancer with secondaries, he’s still not been told (I know as was an OT and learnt from his previous ‘inconclusive’ scan) but is in hospital since Thursday night, with very low haemoglobin but high potassium, last night very very sick, now nil by mouth but double cannula for fluids and glucose as he’s diabetic. All started in early January when he peed blood and clots, due to Covid any diagnosis and treatment has got so delayed. They haven’t been able to do anything except a straight CT scan as potassium levels don’t allow for contrast, even. 

I’m scared, gutted and so angry that it’s taking this long. His annual diabetic checks showed a concern about kidney function for the last couple of years but his GP has closed ranks and I got a ‘whitewash’ letter after I complained. 

Thinking of all folk who are struggling, the wee small hours are the worst......hugs to carers xxx

  • Hi moomy,I do hope your husband’s potassium levels can be stabilised.What a worrying time for you both.I had read a little bit about your situation on the awake thread but find it harder to keep track since the site update.I’m sorry that you have had problems with the gp.I can empathise as I’ve had trouble with our health centre.Good for you making a complaint though it’s disgraceful that you have been put in that position.It’s exhausting having to fight to get treatment/help.Sending love and best wishes to you both.Jane xx

  • Awww, thank you Jane, yes the Awake thread moves at such a lick sometimes! 
    Im just so annoyed and angry that this has been allowed to go on so long. 
    hugs xxx

    Moomy

  • Hi Moomy,How are things today ? The Covid situation just adds to the stress levels.Big hugs Jane xx

  • He’s been vomiting so much, as the cancer has adhered to the duodenum as well as liver. His potassium levels stabilised for a contrast scan which he’s just back from, and a doctor has just said the word ‘cancer’ to him at last. 
    he’s nil by mouth, they tried to get an N-G tube down to relieve the fluid in stomach but it just made him vomit even more. They are now talking about an endoscope. That will be horrible, bless him, he’s a sicky person at the best of times, always has been. 
    in some ways I’m lucky as with our daughters long history of a blood cancer, in the end treated at the Christie in Manchester, one of her final consultants there has kept in touch with her (they took a shine to each other, not romantically, just clicked as people) and she asked his advice, he’s reassured me enormously in a phone call this morning and given me names of renal consultants there, which I’ve forwarded on to his ward doctor who I spoke to this morning. 
    hugs xxx

    Moomy

  • Oh how rotten for him.I was really sick post surgery when my bowel stopped working.I had to have a N G tube down which didn’t stop the sickness but did help relieve the pain.Good that you have the names of some renal consultants.Fingers crossed that they are able to help and advise.Love & hugs.Jane xx

  • The latest; 

    N-G tube was in and worked well. I was allowed in to see him yesterday early evening, he perked up and it helped me too. 
    today the tube fell out but was reinserted by the same capable doctor. 
    plan (gastric specialist has been to see him recently) is for endoscopy tomorrow and possibly op in the next couple of days to either insert a stent or bypass the end of the stomach to enable him to eat and drink and possibly get home for a while; it seems we will be lucky to get months. But they want to do the best for him while he is strong, Doc told him cancer doesn’t like strong people! 
    palliative care nurse has been to see him and will come again, he seems to think she has ‘clout’! Said she was nice. 
    he’s just phoned for a chat which was nice. He’s feeling bored but can’t concentrate on anything which I totally understand. 
    Hugs xxx

    Moomy

  • Hi Moomy,I’m so sorry to hear your husband’s prognosis.I do hope that he is not in too much pain and discomfort.It must have been a comfort for you both to be able to see each other.Such a difficult time for you both,sending my very best wishes.Love & hugs Jane xx

  • Thank you! 
    im updating on my thread in the breast cancer group ‘it seems I’m a patient now’ to save typing such a lot! You’re welcome to read of course....

    hugs xxx

    Moomy

  • I will do.I should leave this group anyway as I’m no longer a carer.Love to you both xx

  • Awwwww, bless you I’m so very sorry 

    hugs xxx

    Moomy