9 months down the line

FormerMember over 5 years ago

2 replies
38 subscribers
2041 views

Hello everyone !

Just come for a place of peace & sanity really. Briefly husband has a rare (2 in 1 million) Appendix/ peritonium cancer. Had his first major op 6 yrs ago when first diagnosed , & lost 3 major organs plus the fatty omentum ( holds all the tummy together ) .Then in New year he developed aggressive symptoms again, ascites with bloating ( 51 inch girth ) tiredness & loss of appetite. Where only two cancer units in the UK treat this cancer back he went to Basingstoke , for his second op.

Nearly dying twice throughout the op. & recovery , we are now 9 months along this difficult worrying journey .Yes , he still has 20% of the mucous tumour, yes he's had to befriend a stoma bag this time , & all awhile I have cajoled , threatened him & rang his specialist nurse in tears , to help him gain 1 stone in weight ( he was 9 1/2 on hospital discharge after 8 weeks , not good on 6 '1'' frame he is starting to look better , & that cancer taste & colour is disappating.

We are now looking at chemo next year ( more weight needs to go on) & a bladder biopsy in 2 weeks for him, blood in pee .

I was coping & in " fight " mode for the last 9 months , serious discussion with consultants, stoma nurses, his GP etc etc .Now after a nasty virus myself I am cranky, over tired & irritable with him & my very frail mum.I keep telling myself I must have some " me " time but TBO I am so tired by mid afternoon I fall asleep, yet still sleep well at night.

Have you lovely carers got any pearls of wisdom or tips please? I do have two very good women friends , but don't like to ask too much of them

Thank you in anticipation -

FormerMember over 5 years ago

That's a lot to cope with. And of course you're feeling cranky. I don't really have any pearls of wisdom to offer. I get cranky with my poor husband, who is now paralyzed from the waist down due to spinal mets and when I am sharp I feel so sorry. I am lucky, I have our 2 children living close by, I have siblings who are a phone call away and s group of friends who offer help, at first I was reluctant, but I've discovered people like to help. I'm careful about what I ask of them, but I've found it's a real relief if someone else walks the dog or cuts the grass or picks up a few bits of shopping. So I suppose my pearl of wisdom, even though I didn't think I had one is accept those offers. And enjoy even 30mins to yourself.

Take care. XX

FormerMember over 5 years ago in reply to FormerMember

Thank you for your reply Cathjt . It does help me to realise I'm not the only one going through the crankiness,sadness & weariness of being the main caregiver. Sadly we do not have any extended family, but neighbours who you have just nodded to occasionally ,have actually knocked on the door to offer help, which are gratefully received.

I am glad to read you have a support network ,& my heart goes out to you , I understand " the sharpness" then the sorrow .

I guess I should n't be too hard on myself , & also try & talk more to him about what's uppermost in our day to day anxieties . Difficult when he keeps a lot bottled up, but not impossible.

I am glad I found this group, & here if you need to vent .

Thinking of you X

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9 months down the line