Have just logged on and found all the lovely messages of support from everyone, thank you so much. I will respond but am just a little too emotional right now. We met Joe's surgeon yesterday - i'm in shock, we are all in shock. He says that Joe must have a total gastrectomy because he believes that the cancer is a genetic fault within the stomach itself. I just didnt expect this and have absolutely no idea what this will mean for Joe longterm. On monday Joe and I will go in to hospital for a PET scan, laparoscopy and lung function test. In two weeks he begins the first of two cycles of chemotherapy, then, six weeks after chemo comes surgery.
Joe keeps asking me how he will be able to eat without a stomach and I just cant answer him. He is so positive though and tells me there is no point in worrying because it wont make things better. He's gone to a festival tonight and Im so afraid but so happy for him. I think I drove him from the house nagging him to take Ensures and pills and waterproofs etc. None of my suggestions went down particularly well but he relented and took a bin bag for cover and a bag of 'essentials'. He just wants to be 'normal' and I know he's sensible but I just cant let go of my fears.
Ive filled today with practical things - calls to Macmillan support, my university (ive stepped off my course), our GP and benefits helpline. This is something I can control at the moment so its proving therapeutic. My husband has just stumbled in to the kitchen sobbing - he's written some words for our boy and says that I can share them with you.
The C word.
One moment a smile
The next a frown
The word cancer rings out loud
One moment of joy
Gone in a flash
Seems like my world
Is going to crash
My son, my son
What an awful plight
Together we'll stand
In the fight of all fights
I’m so sorry for your son and although I didn’t have a gastrectomy I did have an oesophagectomy so I do have some understanding of the dietary issues. To answer your son’s question about how will he be able to eat, well with a total gastrectomy the food will go straight from the oesophagus into the small bowel where the food will be broken up as normal and absorbed. The only difference will be that he won’t be able to eat so much as he will feel full quite quickly, and therefore will have to eat little and often, usually around six small meals a day. Over time his body will adjust and he’ll find that he can eat more eventually. The chemotherapy before surgery is likely to be ECF or ECX regime, the first one being the type I had. If I can help answer any questions just send me a pm and I’d be happy to try to help or point you in the right direction. I don’t often blog but felt you needed some help. It’s good that your son can go out and enjoy himself as it will do him good. I’m sure he will be fine and all will be well. You will find this link from Cancerback up very useful regarding the gastrectomy, the chemo beforehand and recovery afterwards.
As a mum of 2 sons I can only imagine what you are going through. This web site is a wonderful source of support and information. I am pleased to see that Kitty has given you some good advice which I hope helps. Joe sounds a positive young man and I hope that everything goes well for him. I look forward to hearing about his progress.
Hi Kitty, thank you so much for your help and giving your time and energy to offer support during your own recovery. I checked the link out this morning and its just what we needed. Ive been avoiding sites that might give me more info than I really want right now (statistics) but am happy to report that this one did not raise my level of anxiety at all. I will share with Joe when he returns (no phone calls so all must be well).
I just wanted to send love to Joe and to all of you.Im so sorry you are having to go through all this, its so hard to see our loved ones have to fight this cruel disease(((hugs))). Your husbands poem is so heartfelt, thank you for sharing it here.
