Mums still in hospital

Hi,

If your mum had her surgery on 30th October then she is only 2 weeks post surgery now. I’m sure she barely has the strength to make it out of bed let alone undergo more chemo. It was 16 days post surgery before I was out of hospital and 11 weeks before I started FLOT again. Like your mum, I found the last two pre-op chemo pretty brutal too but she should have more weeks before having to go through it again. I only managed 3 cycles at 75% after my surgery as my body had just had enough by then but I wanted to give it my best shot. It’s a long and difficult road we are all on but I wish you and your mum all the best as you travel it. Good luck, CB

Hello

I hope your Mum is improving daily, it must frustrating when they make important silly mistakes like removing the feeding tube, hopefully the leak is healing and your Mum can start sipping fluids, such a feel good factor on one’s recovery.

Like CB has said the post chemo will not be until your Mum has recovered, it will be tough but they will monitor her closely. I started mine 12 weeks post surgery, they stared at 80%, I then went to 50%, I only managed to do 2 as it did take its toll.

50% is the lowest they can go I believe. 

Take Care, Jennie

Hi sorry to hear about your experiences with your mom also your dad having to travel so far.

 I’m sure your mom is in good and safe hands, a bit stupid removing her feed tube though. Like most people I’ve seen she’ll need that for a good few weeks after getting out of hospital to build and support her new eating capability.

As for the chemo I wasn’t on FLOT but a lot of people have said how hard the last one is, but as long as she is open and honest to her oncologist that way they can best understand her treatment. 

As for getting her up I was up every day when I was in a high dependency ward with 2/3 people caring my chest drain bottles and oxygen around, also spent time sat on a chair daily slowly increasing the amount of time each day, so that does seam strange and maybe worth asking about. 

I wish your mom a speedy recovery. 
Any questions there’s always someone here who’s lived the same experiences and got some good sound advice if you need it. 

Hi. Sorry your mum is going through so much post up and it is of course distressing for you and your dad to watch her. The leak your mum has is not uncommon but will probably take several weeks to heal. Mine took 7. This does not mean she will be in hospital all this time - she can use the feed pump at home. However on the plus side because she is being fed by a pump this will contain a much better balance of nutrients, thus helping her gain strength, than she would be able to take in by mouth. She will be able to drink water/fluids  in increasing amounts all the time the tube is in. However, the lack of walking sounds a concern. All of the equipment she is attached to is mobile and this should not be an issue to push it round with her. The key to recovery is getting up and being mobile. Obviously you need to discuss this with the medical staff but helping her mobilise is perhaps the best thing you can spend your time on when visiting. I cannot help with the chemo question and will leave comment to others. You should not be bothered that the CT scan is 'not til next week'; They only do the CT scans at intervals to check how the hole is sealing up and there is no point doing it too early. She will  no doubt be asked to drink during the scan. I had 3 CT scans during the leak healing process. I can comment further on the feed pump process if you need further advice on this particularly if she continues at home on the pump. All the best to all of you and hope it goes well.     

Hi

I expect your Mum is a bit unsettled after hearing about the leak alongside all the other challenges after major surgery like this.

The leak will heal - in its own time. In the meantime, the physios should be coming every day to try to help her to walk, if only a few steps at first. That will help with breathing.

My anastomotic leak in my neck took about 5 weeks to heal and it was quite small. However it did cause an infection in my neck wound which had to be opened and left to drain and that took about 4 weeks to heal. I was in hospital for 4.5 weeks.  I was just unlucky. I was nil by mouth for 4 weeks and it's not a lot of fun but that's where the JEJ comes in.

I wish your Mum all the best. She will need all the support you can give her but it is very early days, recovery can be very slow.

Best wishes

Mutti

Thank you all for your replies they have been very reassuring.
I think mentally the key problem was this “two week” time period that they tell you at every pre op conversation. I think she just was not mentally prepared to be in without an “end date” as it were. I can only imagine how long the hours are in hospital. She is mobilising better yesterday and today, the physios have signed it off to the ward staff now so I think she’s just going to have to make a bit of a nuisance of herself until she’s more independent which she hates :) 

She has been out of bed all day every day in the chair, it was the chair that caused the “bedsore” I believe. 

It’s reassuring to know that chemo can just be a “we’ll see when we get there” scenario, i think that will be a different conversation when she is back home rather than after being told that news yesterday

Hi

I had soreness too, it's not nice. The nurses changed my normal mattress for an air mattress and also gave me a blow up cushion for my chair. Worth asking if your Mum can have the same? There is also a barrier cream that can be applied to the affected area.

Worth an ask

Best wishes 

Mutti