New, awaiting biopsy/ct results.

I read your post, and kept saying "Oh I know that feeling". I had an endoscopy and was told straight after it was likely cancer, then left to go home and worry for 3 weeks. That was the end of May.

I've just finished my 4 rounds of FLOT chemo and am now in the pre-op stage. I hope I can give small comfort, but looking back those first 3 weeks were the absolute worst time in my life, and worst time on my journey so far. Both for me as the patient, and my partner. No way round it, it was a living hell. I totally understand how you are feeling, and have such empathy for you. BUT... once you are in the system, and once treatment, whatever that may be, has started, you will feel a whole lot better.

Waiting for results is awful, but the best advice I was given - and I stuck religiously to it once told - was NOT TO USE GOOGLE! There's a lot of misinformation and American guff on there, that just scares you even more. Please, please just use Macmillan, Wessex or NHS only. Their information is up to date and informative.

I sincerely wish you the best going forward, things will fall into place and get easier as you go along. The oncologists are amazing people who will tailor treatment to you personally. Macmillan have also been a great support for me, so if you have an Upper GI Macmillan contact, then talk or email them too. I did that a lot in those first 3 weeks, and they were able to reassure me and also get appointments through quicker! This forum is also a good way of getting support. xx

Thank you so much Nicky, your message, advice has really helped. I have not been near Dr google, I know it will scare me more. I will see if I have an upper GI Macmillan contact. 
I have been adjusting my diet also as certain food cause acid reflux and discomfort, will there be support with this, can’t go near spice. 

thanks again 

There will be support for diet, yes. You can ask to see a dietitian who will be able to help. With regard to reflux you need to speak to whoever you next see, as they will happily prescribe something to help. I was on Omeprazole at the beginning as I had reflux bad too. As treatment progressed this has eased a lot, and I no longer take it. 

Eating is a big learning curve. At the beginning I could only eat soft foods and soups, definitely no spice or meat, or even anything fried, but after round 2 of chemo I found I could add more and more foods, and am now eating normally again... with the weird exception of rice! For some bizarre reason I still can't eat that in any form, but I can live with that.

The other thing I asked for and got, was Ensure Shakes. These are small shots of high calorie, nutrition filled milkshakes. They come in a few flavours and are excellent for days when you might feel you've not eaten enough. You will be told you must keep your nutrition up, and eat as much as you can to avoid weight loss (important for surgery). These shakes will help that. Again, your nutritionist will be able to help in this regard.

Another bit of advice I was given was to treat food as medicine to make you better. You will have days where you can't eat, or have no appetite, but mentally I found by treating food as medicine I was able to force bits down little and often (not literally, I mean just make myself eat even though I didn't want to). You just have to find ways of coping that work for you personally, and doing what you're happy with, eating what you can... even if it's a cream cake for breakfast! :-) I had pancakes with sugar and a cream scone for breakfast yesterday lol. Other days just Weetabix, but again with lots of sugar for calories. 

I hope the above helps a little. I promise, this awful early stage does get better. x

Thank you for that advice it will help me 

Hi Nicky, I wanted to let you know how much your reply’s have help me, last night I slept from 11pm to 6am for the first time since Saturday. The food info is very helpful, I am making notes. :-) yes food is a new journey so I will ask to speak to a dietitian.  
Many thanks 

Jennie 

Hello NickyF , Hope you do not mind me contacting you. Have you got your OP soon?  I have seen my consultant after a CT scan, then a PET scan, he is not sure yet what cancer it is, his words were, "everyone has different cancer, and yours is different!" he said it is operable after treatment, to determine the treatment they need to confirm, so I have a laparoscopy on the 5th. 

You were spot on when you said my feeling would get better, obviously I would rather not have this beast but thankful I will be in good hands with treatment and an OP. 

How were you on the eating side of things, I am taking Omeprazole 40mg a day, some food like porridge, soups a digestive, no problems then another meal, fish pie fine one day, not the next. I seem to get mucus, burp n hiccups. Just wondering if you had a symptoms? tips? 

Aww JenJen, I feel for you, as yes I also had those problems early on too. However, after round 2 of chemo things changed for the better really quickly. I found I could introduce more and more different foods again, and my round 3 was back on roast beef dinners on a Sunday! Oh the bliss! I've made up for living off soup and mash since, and have even put a bit of weight on. I was also able to stop the Omeprazole as the burping and acid got a lot better too.

It's very hit and miss finding foods you can eat right now, and maybe you could ask to see a nutritionist? Do you have an Upper GI Macmillan Nurse? If so, they may be able to arrange this for you. Even having a list of foods in front of you can help.

At the stage you're at I lived on soup, mash (I mixed it with fish or corned beef), fish pie, cottage pie, scrambled egg... anything soft really. I couldn't tolerate any fruit though, even pureed, but I can now. I also couldn't eat bread, which I really missed, and pasta was awful - it's so sticky and made me physically sick when I tried it. I found soups and foods I liked, and unfortunately just stuck to those until things got better. So boring, but I found telling myself food was medicine helped my mindset, and I knew I had to eat it.

Also, a nutritionist might be able to give you some shakes or 'shots' - they're milkshakes that contain all the nutrients you need, and are 300 calories each tiny bottle, so a quick way of getting nutrition and calories inside you. Some days I had these as well as food to try and keep weight up.

You're at a horrible stage right now, but sounds like you're being swept up quickly in the system and being taken care of, and eating really does get easier once treatment starts. 

Wishing you luck with your ongoing tests and results. You're doing a grand job so far, well done to you. xx

Thank you NickyF, good luck with you next step x