My first week

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Hello,

I've been getting through the first week and wanted to see if what I'm experiencing rings a few bells?

Firstly, you may recall from my earlier post that I have a lot of travelling to and fro 5 days a week. Two days a week I've been provided with hospital transport that has helped my husband manage his own exhaustion - we're at the age when we usually don't travel much, just locally, so a long daily trip really takes it out of both of us. So we reached Friday and the chemo pump came off and by then I felt as if I could barely stagger in the front door. But boy, was that night's shower wonderful. I had two lots of chemo this week, plus the daily zapping.

By Thursday my stomach had started to feel a bit fragile and I began burping for England. Stools also softened, but no diarrhoea yet. I tweaked my diet, as advised by the nurses, so stopped eating all the green veggies and wholegrain cereals I usually eat. By the weekend, my appetite had changed and I felt that I couldn't face eating too much of anything, certainly a complete meal was out of the question. I've not been sick, just felt very wobbly and fragile inside.

I've managed toast and honey and a jacket potato and am drawn to carbs. That won't do much for controlling my blood sugars - I hover in the pre-diabetes range, but usually manage OK with diet. As others have said, I think that toast will end up being my go-to.

Despite being exhausted, sleep hasn't exactly been brilliant and after a few hours I'm up, as usual, for the bathroom, but then what follows is patchy and fragmented and I wake up feeling like an old dish rag. Then this morning, Sunday, I noticed when I woke up that the skin inside my cheeks and around the gums and lips felt different - quite rough. It's not all over but there's a definite change.

I didn't think I'd have any noticeable symptoms during Week 1, but I certainly have. I'm finding it hard to think that I can actually become any more exhausted than I am at the moment. But with 4.5 weeks to go I'm really worried I won't get past the post. So feeling crap already. I'm not usually a moaning minnie, but feel like it's going to be a real mountain to deal with it. No pain at the moment and am moisturising everything daily, as well as using Strats XRT - which I hope will help prevent the worst. We'll see.

Everyone at the hospital is great and they're a wonderful team. I couldn't ask for better.

Hope you are all coping OK?

Rainie

xxx

Irene75359 13 hours ago

Hello Rainieday

I am so sorry that you are feeling so rough and can totally understand all your concerns. I am very much hoping that your body is having a knee-jerk reaction to the chemo and that everything will settle down a bit. Remember to always share with your treating team how you are feeling and if you are struggling. I used to get home and go to bed from about week three. Not everyone has the same side effects and there is really no way of knowing how any one person will be. I thought I would be, not exactly fine, but held the thought that I was very healthy and active which would stand me in good stead, it didn't. So take as much rest as you need, the fact that you are travelling a fair distance five times a week sounds exhausting enough. Is there any way that the hospital can up the number of lifts you get?

You have been through so much already and no one on here will think you are a moaning minnie in the least.

Big hug

Irene

PS My appetite went right out of the window too, my husband used to make me very strong cheddar on toast with sliced onion and mustard, every day, it was the only thing that tempted me.

Nikki65 13 hours ago

Hi Rainieday ,

Firstly I'm sorry that you’re feeling so ropey! My guess is that if you’ve had intravenous chemo in week one then that is the culprit for the way you’re feeling opposed to the radiotherapy so hopefully you’ll begin to pick up a bit now that’s over for now. The side effects that you describe are very typical of IV chemo, it’s definitely harsher that the oral kind, my oncologist said that the oral chemo is much gentler on your system but each oncologist/hospital seem to have their preferred method of delivery.

If you’ve have to travel a fair way it can become pretty exhausting especially if you’re not used to going very far like you’ve said.

I’m pleased you feel well supported by your treating team, this is so important & makes it easier to approach with any issues you’re experiencing.

Wishing you the best of luck with week 2 & I hope you start to feel a little better soon. You’ll be at the end before you know it.

Nicola

AllyL 11 hours ago

Hello Rainie

So sorry to hear you are feeling unwell. And I really hope things settle down over the coming weeks.

You mentioned your craving for carbs and how you need to be careful. Just a suggestion, if you chill pasta, rice in the fridge overnight the impact of the carbs is reduced. Don't know all the technical stuff, but I do know it has less impact on your blood sugars. Also if you freeze bread, it does the same. I make my bread in batches and freeze to preserve, still tastes lovely once defrosted.

I also like porridge and to avoid the spike I eat it with nuts, ground seeds and a portion of high protein yoghurt on the side.

If you can manage some tuna, salmon, cottage cheese, eggs or a nice smoothy with banana and avacardo, it will help your protein levels.

Also lots of fluids and you may need electrolytes. I drink coconut water, refreshing and good for my hydration.

I also found it easier to eat after radiotherapy and chemo.

You will get through it, just take one day at a time. Keeping posting and also let your team know how you are feeling.

Ally xx

PEB24 11 hours ago

Hello Rainieday,

Well done on completing your first week after such a long wait, although it sounds really challenging.

The travelling time and effort alone is a lot. Adding in IV chemo and radiotherapy and it sounds like your poor body doesn’t know what’s hit it.

I certainly remember feeling quite rough in week one then things improved until week 4. I had oral chemo however and it seems that it was easier to deal with.

I can see that you’ve been given some good dietary advice from Ally . The treatment definitely has an impact on appetite, taste and digestion. My diet changed completely during treatment and although I tried to keep it healthy, ended up eating whatever I could face. For the sore mouth and gums I was given a mouthwash - Benzydamine hydrochloride 0.15% although never had to use it. I hope that you can ask for some tomorrow as well as telling your treating team how you are feeling.

Hopefully you will have had your first weekly blood test which should show how your body is responding.

Im so sorry that you’ve had such a hard start and very much hope that next week will be better. Could you request additional transport days? Although it won’t help physically it may ease some of the pressure.

Wishing you all the best for next week.

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