Mums experience so far

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Hi, I’m new to the forum and site.

My mum (84 years young) was taken to hospital with abdomen pain in December last year (first spotted last summer but with no diagnosis from the GP), and treated for possible appendicitis. The end of January she lost the sight in one eye due to a plaque particle. Then in early February the tummy pain got worse again. She was readmitted and subsequently had a pulmonary oedema and spent several days in ITU. The heart issue and stomach pain blended and the hospital didn’t know which was the priority. Her heart concern was cleared, besides her original AF, and they got back to the tummy issue.

After the above she got transferred to a further away hospital in March for an exploratory laparoscopy. That was when it all started getting even worse. She got given a ileostomy (stoma) and a diagosis of cancer. Then transferred back to our local hospital where the stoma was leaking from the edges. There was a hole in the bowel leaking into the skin, probably yet more bad luck, this time from the laparoscopy procedure. The output is like acid so was excruciating for her and was going into the skin inside. Then an emergency op locally this weekend was to resite the stoma, clear the mess up and then another 48 hours or so in intensive care.  She has a VAC on the old stoma site to help healing and infection, and a new stoma called Polly (Percy stoma was a rightt  ).  Today she’s moved back into the ward but still in chronic pain. Hopefully soon she will recover from the op - this second op was major surgery - and can start whatever treatment plan they have. But although they’ve not officially staged it, it’s advanced as it’s on her liver too, more small growths spotted in the open surgery last weekend.  The primary seems to be bowel cancer, possibly small bowel (yet to be confirmed).  It’s also in the peritoneum near the small bowel 1.5cm lump, the original spotted suspicious lump from CT scans.

I can’t believe she’s been in hospital for over two months….

I am an only child so everything falls on me.  My dad passed away in 2021.  Mum is a hero so far, and has taken much of what has happened in her stride.  But I find it so hard seeing her in excruciating pain and having such continual bad luck.  She has a morphine driver post op at the moment, and has also had two tap blocks for the pain in ITU.  It’s made her very dopey the last couple of days.  


Her MDT is hopefully tomorrow so we should know what the next step is once she has recovered from this recent surgery. I am married with older teens, and my mum lives a couple of minutes walk away.  We run our own business, and I’m concerned how this will affect both time with mum and managing the workload.  Mums father passed away with abdominal cancer so I am also fearful for hereditary risks for my family and myself  I’ve yet to voice this with medical staff.

Thank you for reading, and letting me offload to you.  I hope my menopausal waffling makes sense…

  • Welcome  . 
    I am so sorry to hear your mum is in pain . It’s such a tricky age when using pain meds . My own mum gets completely knocked off with morphine or any new meds to be truthful . It’s not easy at all .

    However each day can bring a little progress and hopefully soon things will start to improve for her .

    You can chat through the risks of bowel cancer with our helpline staff . 0808 808 0000 and they could access the right information for you . The age of the person at diagnosis does come into play and I think if memory serves me right they get more concerned if the  relative is under 55 .

    I checked my own risks and whilst I have a slight increased risk I fall under the normal screening program for monitoring . In Scotland we start screening at 50 .

    It must be hard processing everything on your own so definitely make sure she is assessed before discharge to make sure she can access her facilities independently. Or to make sure she does not need a support package. A full occupational therapy assessment can help with that .

    The NHS does not discriminate against age for treatment but frailty does become a factor in their ability to endure treatment. My mum had ten months of Cetuximab on its own last year . All in all she did well but with a few emergency admissions and I was taking her to hospital three times every two weeks and supporting her in between . It’s only now that carers are coming into the equation and it’s hard for us all as I have always done it all .

    Please do chat to our helpline staff as they can talk through each step better than I can .

    Always here if you need to chat .

    Court 

    Community Champion Badge

    Helpline Number 0808 808 0000

  • Thank you Court. It means a lot to know someone else going through a similar situation.