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Hello Lutterworth1

Thank you so much for finding the courage to share your journey here with us. your right in regards that many people go beyond the time given, but it is difficult. Things swirl around in your head as much as you try to block them out... but the continued ability to remain as positive as possible will surely help you..

My husband has OC, terminal, prognosis 1 year... the aim, like you is to well and truly beat it.

What are you doing? how do you find eating now? Do you make future plans? Please forgive me for asking, but we are all different and find amazing ways of coping.  

I am pleased to hear that everything has been behaving,

Psychologically, finding a way to meditate away from the up and coming dates our minds seem to focus on, is so important, it is difficult for me and I am not the one with the condition. I watch my husband meditate, work with crystals and totally changing his eating habits to include as many antioxidants as possible, and continue to hope that he improves everyday, taking him further away from the original prognosis.. I hope very much the same for you too 

Best of Luck

Lowe'

Hi, first of all thank you for replying as it’s appreciated, so in the first lockdown we bought a black lab puppy (Stan!) and he’s been a life saver in that we have been on so many long walks (this takes a chunk out of the day) then when lockdown eased we bought a camper van, again bit of a life saver and got away as much as we could (with Stan).

But now as you know we Are back in lockdown as well as being in the shielded group, prob like a lot of people in our circumstances it’s bad enough having TC without the restrictions when we all have so much we would like to do. But it is what it is am afraid, so in answer to your question we did plan ahead, well every three months after scans, as for eating I was starting to struggle a few months ago so had some radiotherapy which really helped me, I find smaller meals better to cope with then big meals, if am honest I sometimes feel my wife watching me eat and it puts a bit of pressure on to finish my meal even if I would be happy to leave some sometimes, but I know she is just worried.

I would be interested to know does your husband have the same feelings that I have on some foods, I still find it hard to think about eating certain foods (beans on toast) as I started to be able to eat less and less before my diagnosis I know find it hard to face some foods that where prob the last ones I could eat, if you know what I mean?
anyway thanks again.

Lutterworth1

Hi Again,

How lovely for you to have Stan, such energy and bounce surrounding you can be a great thing and a camper van, wow! for me that is living the dream  

Thank you again for sharing 

Dal was having whatever I had for dinner, but blended, before he started treatment, even sausage, egg and chips were whirled together, to make the eating of it better. But some of the food that he finds psychologically trying is, Chicken, (almost all parts except for wings) he finds it dry and tends to have a problem now and then with getting that down, same with Salmon, though we did have Salmon over Xmas and he managed it quiet well. Chips are now a thing that he rarely has, even then he only has a few. We do have smaller meals but they are still quiet large, this is because we use smaller plates, but load them with raw salad/veg nuts, and anything else we add, like steak or pork is cut up very thin before it leaves the kitchen.

Dal was a big eat eater, but a lump of meat on a plate now is not something that he can stomach, he would not feel comfortable and is quite conscious of people watching him eat.  Boiled egg yoke and Brown Bread, is too dry, and is best avoided! He no longer drinks milk, replacing it with almond milk, has reduced his sugar and coffee intake considerably, and has regular high anti-oxidant smoothies. 

Originally losing 2 stone in weight by the time he first started treatment but has since added that back on, plus some.. within a week of the first chemo session being completed we were able to make the blitzed food a little more lumpy and whilst undergoing his 2nd session he managed to consume a white bread sandwich.... he was so pleased!

He still has a fizzy drink on standby for all meals but is managing more and more without having to crack it open 

We wish you great days ahead - keep us updated.. it good to have others who are happy to share

Take Care

Lowe'

Hi, thanks for that.  Can only hope things improved by now.  Could you tell me what kind of feeding tube you ended up with?  I am in awkward position of arguments between oncology and renal as to which, either tube down nose, or pipe in stomach.  Have gone down to 47k and can’t keep anything down.  Must build up strength at least 2 weeks before any possible chance of cancer treatment, both procedures for have risks.  Wait for consultant to rule!

Hi,

So sorry you are on this journey. Have they tried immunotherapy? They would've needed to examine any biopsies taken to look at HER and other genetics around the tumour to see if it would respond to immunotherapy.  Have a look at the smartpatients website there are some on there that were stage 4 but are surviving. 

Wishing you all the positive vibes!

Thanks.  Had nose pipe inserted this morning successfully.  Will do some “feeding” through that and if goes well, may be swapped for stomach pipe thingy which will be more reliable.  Big meet among all concerned on Monday to decide.  Haven’t heard anything about immunotherapy but seems we past that now?I can eat normally as wel.  Things actually moving at last but I will be stuck here a while to monitor process of strength building.