14 March 2016

The gist of the GIST

The GIST tumour growing in my stomach is rare. Benign, thankfully, but rare. There are only three hospitals in the country that can remove it, apparently. Not only that but it is in a tricky place. In my stomach but one centimetre from the junction where the oesophagus comes in to the stomach, so they have got to be very careful removing it, in case they damage the oesophagus. Trust me to be awkward. They want to remove it sooner rather than later as it could turn malignant and has already obviously bled. However, life is not that simple.

My 92-year-old mother suffers from chronic arthritis and is in severe (and I mean severe) pain, particularly in her knees and back. She creeps around her warden-assisted flat holding on to the furniture to cross a room and yells out in pain when she tries to stand up or sit down. I am her sole child and sole carer. I help her all I can, taking her to appointments, shopping, visiting.  She saw an orthopaedic consultant in January who promised her she was not too old for a knee replacement operation and she was booked in for 1 March to have it done under a spinal anaesthetic. However, at the pre-operation assessment she was told she had a bladder infection and they wouldn't go ahead with the operation unless she was infection-free. So the date of 1 March was cancelled and no other date given. That much I understand, but after a course of antibiotics, a 2-week wait to ensure the bacteria had not recolonised and a second test, she still has an infection. The daft thing is, she has no symptoms at all, never has, but the tests keep coming back positive. This now means more (stronger) antibiotics, another two-week wait, another sample - you get the picture. Next test for her will be at the end of March. We could be repeating this little game up until Christmas. Meanwhile my poor old mum is in agony.

Now here's the complication. When we finally do get the go-ahead to book her a date for her operation (and assuming the bacteria have not returned in the meantime), I shall be the only one to take her to the hospital , visit from time to time, do the washing of her personal things for her, see her home again and get her over the worst. It therefore makes sense to do that before I have my operation. If I have mine first, I shall be out of action for at least four weeks afterwards - that means virtually housebound on my own, not able to lift anything heavy or do any driving, so my mother would have to wait at least a month before I can begin to help her over her operation. But with her date going ever further into the future, how long can mine go on hold?

Chicken or egg? Egg or chicken? Why is life never straightforward?

10 comments:

Graham Hunt said...

Never rains but it pours.

Hope you find the best way through this Addy - take care

Anna of the Mutton Years said...

OK well I think you can't look after anyone til your fixed. Social services etc could take on the care of your mum. It's like on a plane, you put life jacket on yourself before the child so as you can look after the child. That's me being objective and distant from the emotions you are experiencing.

Wilma said...

A quandary, but break it down. As Anna says, you are in no good position to help your mother until you are in good shape. Hire someone to help her and hire someone to help you. I know, easier said than done to find the help you need, but it may be the answer. Hope you find the best way forward, whatever it is.

Trisha E. said...

I agree you must get your surgery done first. You cannot afford to wait for the GIST to get closer to your esophagus or to turn malignant. Do find someone to care for your Mom until you are recovered. Perhaps they will be able to take her for her surgery as well if need.

Have you tried cranberry juice (diluted to reduce sweetness) and/or cranberry capsules for your Mom's recurrent UTI? 250 mg-500mg vitamin C with meals twice a day and lots of water, soups, tea, etc. to dilute the urine might help a lot too. As a veterinarian we see lots of UTIs and they are most often related to inadequate fluid intake and too much dry food.

K Ville said...

I'm with Anna too. There must be some other help out there. What a to do. x

the veg artist said...

Surely there is an emergency/temporary at-home or residential care facility in your area for this type of eventuality? Your mother would be far worse off in the long run if you allowed your own health to suffer.

DD's Diary said...

You must get yourself sorted out first, Addy - a bit like the safety routine on aeroplanes when they say fit your own oxygen mask before helping others. You'll be much more use to your mum when you've got your own operation done. In the meantime, is there anything they can do for your mum's pain relief? It doesn't sound as though it's working too well. If they dealt with that then the need for an op might not be so pressing. What does Kay think about it all? I imagine this sounds a bit too much like one of those hypothetical complex cases they have to talk through in the medical finals! Big hug to you X

Jennifer said...

I agree with everyone else about taking care of yourself first. You can't be a carer for someone else until you have your own health under control.

Good luck to you both!

Flowerpot said...

Yes I agree, get yourself sorted first, Addy - but a difficult choice to make. But there must be respite care for your mum. Best of luck and take care X

auntiegwen said...

As my dear friend Libby a,ways says ageing is not for cissies X hope you find some good replacement care for your mum x