Total gastrectomy - open surgery

Hi, I had a total gastrectomy on Oct 7th, 2 weeks before my 43rd birthday.  The op itself and the immediate recovery in hospital were  much easier (if that’s the right word) than expected.  Personally I wouldn’t wait.

Get in touch if you want to discuss.  :-)

Hi Andy 

thanks for your reply, unfortunately all surgery is cancelled because of coronovirus...I don’t know when I’m going to get my surgery now and it’s very frightening.

they said that my blood pressure was high and I didn’t do well on the fitness test so that if I had the surgery and then caught coronovirus they had real concerns.

they have coronovirus patients in the icu so I would be mixing with them and nurses that are potentially infected. It was all a bit garbled but the nurse said they had concerns about doing the surgery even if all the tests came back ok!!

these are horrible times

so now I have no choice but to wait ....

lisa

Hi Lisa, sorry to hear that your surgery was cancelled. I had a total gastrectomy on October 24th and it was not as bad as I expected. By Xmas I was feeling much better. To be honest, when you do finally get your surgery, you will be well looked after re pain relief and medication control. Re living alone, this Coronavirus has enabled those of us having treatment to be identified as vulnerable and you will be entitled to lots of help. I really hope your surgery goes ahead ASAP and that care will be arranged for the first month at least once you are home. Please let us know how you get on.  Best wishes. X

Hi Andy, how are you getting on? Our stories were quite similar back in October. You had your TG three weeks before me and then you had a dilemma over further chemo. Same here, the initial chemo was not as effective as they would have liked but I still had 4 further rounds of FLOT at the beginning of this year. Apart from struggling to gain weight, I am doing ok. The 4 rounds were tough this time but glad I did them now. 
wishing you the very best. 

Hi Maggie

all elective surgery has been cancelled so my operation did not go ahead today after all.

my blood pressure was really high so they didn’t think it safe.

so now, like many others, I have to wait until the coronovirus passes us by.

what help specifically did you get? Financially I’m broken as I’m just on SSP for 28 weeks, I got my diagnosis 4 days into a new job so they won’t pay me and did suggest I might be better off resigning!! 
im pretty depressed about it all as there is no support from anyone at the hospital... no offer of anyone to talk to about anything.

im just stuck knowing I need the surgery but with no date in sight! No pre-hab support either... 

I just feel lost.

x

That’s terrible!   Have you spoken to anyone about financial help?  Macmillan can help there, they are brilliant.

As for the medical side of it, you have a CNS?  If so speak to them?    What about your GP?   There loads of support out there...and if nothing else there’s always the people on here. :-)

hi Maggie.....I’m doing ok.  I had the chemo, it was significantly grimmer than the pre-op, even at a reduced dose, but was tolerable.  I had my first post treatment scan a couple of weeks ago and it was clear....can’t overstate how much of a relief that was. Obviously not out of the woods by a long long shot but it took a lot of weight off my shoulders.  

My weight is pretty stable now, my eating is a bit up and down but generally ok.  Weight fluctuates within about a 1.5kg range so it’s alright.  I’m not underweight or anything but I did put on a huge amount before the TG.   I did get told off by my CNS last time we spoke though.   Good days and bad days.

Now I’m sat here waiting for a phone call to say the wife has gone into labour and that I need to get to the hospital  :-D

Hi bronte46,

I've been through the same operation and now it's over 12 months since first diagnosis. In fact I've put a website together to help others through the same journey stomachfreelife.com or you are welcome to message me.

Debra x