Cancer support thread 90 - still the best threads no one wants to be on

[LemonDrizzle10]

Last one filled up quickly!

Thanks everyone. I shall leave cancerland for a bit now.

@TopOfTheCliff your so wise with your words.

Wishing everyone all the best x

@JIL2013 I am absolutely made up for you, but agree they do try and do things in the most anxiety inducing way possible!

@JlL2013 fabulous news, so pleased for you!

Great news JlL2013

I was also afraid of hospitals, piccs, ports etc I got through on cannulas and thankfully the neuropathy meant I could feel very little and veins aren't too bad now. Cancer was good exposure therapy. I was lucky DH was very supportive, we definitely got it right way round as he loves playing nurse though hit the covid ban on anyone accompanying you.

Hey everyone, I dropped off the last thread with the waiting time for my op.

Finally have a date for my ovary/tumour/tube removal and it's 2nd October when both junior docs and consultants are on strike. The person who phoned to tell me this didn't sound too positive it would go ahead. Anyone have any experience of surgery being cancelled for strikes? Wondering how long I'll have to wait after that. It's also fallen badly in that both my DM and DMiL are unable to help with the kids/school runs that week so I'll be asking all those people who randomly offer to help 😅

Mine wasn't cancelled for a strike but was cancelled as surgeon had covid. But they did same day in private hospital paid for by NHS with a nights stay so I did well out of that. Hope it goes ahead. Will be interesting to see how you get on with the people who offer to help and say anything you need. Some of them mean it, some it's just a phrase.

I prefer to go to things on my own. My partner came for the day of surgery and visited while I was in hospital but chemo and appointments I prefer to go to on my own. I can focus on myself and my questions rather than thinking about my partner's thoughts and reactions. I can always report back after. Now that I think of it, some doctors seem to find it odd. I have had questions like 'Have you come on your own' from nurses when getting a result. I guess I need time to process things myself first rather than reacting in front of a loved one.

@HohiyiKozbevi welcome. I live in Australia and have recently finished treatment for bowel cancer. I’m still recovering from chemo so I pop in here regularly as the support and knowledge is fantastic. Obviously I’m no help with NHS queries but happy to support with anything relating to bowel cancer surgery and chemo.

I am popping in for a whinge. I am not bouncing back from chemo this week. I am shaky and achey and fuzzy headed still and all I can think to try and improve things is to maybe drink more? I'm bad at that and do tend to get dehydrated.

Chemo experts, any advice please??? I'm so bored and fed up of staring at everything that needs doing without any energy to do it 😔

Water all different types and posh juices I found helped. You won’t feel like doing Buggar all so just don’t!! I admit I made myself go for a walk to the park and back every day. I can’t remember if you are on your own or not, I am and it helped just to see people in the local shops and chat.

I had my fourth radio today, I can’t say I’m enjoying it especially as the machine broke down half way through today and I was butt naked from the waist down for longer that necessary😀 it does make me feel lonely and I’m airways tearful after for some reason. I wasn’t like that on chemo.

Have you taken your temp Allotmenttime to check it's not over 38C, if it is call chemo line. If not maybe rest, drink at least 2 litres a day and I found eat little and often helped so every 2 hours or so and foods high in iron. Its also fine to call chemo line for their recommendations. I found my temp dipped in chemo and shivery with that. Very strange but wasn't ill just cold.

🐥🌻Each

Woke up at 9 today to appointment for oncology at 9.20 on 21. For some reason I thought that was today. Phoned and confused the girl but I have it moved to 28th as have 3 kitchen people, a tiler and specialist teacher coming on 21st.

Just joining the new thread, will read through later!

@EachandEveryone ugh that sounds horrible. Hope you have something to cheer you up this afternoon after that experience. Thank you for the suggestion, posh juices is a good idea, think I have some elderflower somewhere.

@Silkiebunny thank you, good point re temp!! Have just taken and it's fine. I am eating loads 😳 it's the only time I feel okay.

You are both right and I need to rest (and tbh just need to deal with that probably.. I'm a bad patient!!).

Silkie that's quite a list of visitors.. I want to ask if the specialist teacher is a typo or if they are unrelated to the kitchen?? 🤣

@AllotmentTime I am in exactly the same situation. Totally wiped out by last round of chemo. This is day 5, and I feel like a wreck of a human being. Everything aches. I need to get to the supermarket but struggling with even doing that. Partner away for work and my DD snd I need to eat so will have to get off the sofa but feel horrendous. I also have no sense of taste so there will be no enjoyment in dinner. It is wuite depressing when you have no energy for anything. Anyway, no great advice from me just a lot of sympathy.

@AllotmentTime and @isaxx sorry to hear about the post chemo plunge. Maybe you are low on carbs?
I recommend home delivery of shopping. It takes all the hassle out of it and I spend less too.

Had my review by nurses and onc prior to round 7 oral chemo.All well but I gave myself a fright when I looked up my results as I found a random tumour marker result from July (ca 15-5 I think) which was elevated at 40 (0-30 normal) to. It’s never been up before to my knowledge but I don’t usually see it. I wish they wouldn’t measure it! I’m trying to ignore it…

@isaxx sorry to hear you're the same!! Lots of sympathy back to you. Chemo is SHIT!!

Hopefully we will feel better in a couple of days. I am pinning all my hopes on that...

@TopOfTheCliff I can definitely, positively, 100% guarantee I am not low on carbs 😁 eating is about the only thing that stops the nausea and the horrible taste for me.

Can you ask the nurses for some more information so you can be less worried? If you know what your past results have been for that marker that might help?

@TopOfTheCliff Sorry you are struggling with some uncertainty at the moment - the CA level and bone scan wait, etc. Although I believe we are both triple negative, I don't think anyone has ever measured my CA levels. I get the feeling they try not to measure too many things where I am being treated as it just confuses things and does not give enough specific information. That does not stop me from freaking out over every blood test they do take, as the numbers are always all over the place. I then google...and the mental consequences are all too predictable. As to the bone pain, is it worse when you are at rest or when you move around? From past experience (lymphoma, many years ago), cancer pain is very obviously worse at rest. This does not mean that you cannot have injury/overuse/etc. pain that is bad at rest, but if it is slightly less bad when lying down and not moving, it is less likely to be tumor related.
I am slightly baffled by how different doctors and hospitals do things slightly differently - in what they do or do not measure, what they test, how much treatment they give, etc. for what seem like similar situations. I asked my oncologist about this the other day and she just confirmed that there are indeed different approaches. Some like to treat and test a lot. She doesn't. Not sure which is better, but can only go with the experts in front of me..Since they did measure it, you should definitely ask what it might mean though for your situation.

@Crimsonbow My surgery was scheduled for the last consultant strike day. I queried it with my breast care nurse who seemed unaware and said they were scheduling for that day. They phoned me two weeks before and moved it forward because of the strikes. The next day they tried to move it forward again, but I declined as I’d had enough change. Hope yours goes ahead for you as soon as possible, with enough notice to sort things out. Results day for me tomorrow - a long 29 day wait………hoping for good news.

@EachandEveryone I found radio very lonely and tough emotionally too. It’s the lying there in the dark, half naked while people talk over you. Nothing to do but worry, and it felt very dehumanising. Everyone said it’s easy after chemo but I found it tough in a different way. 🌹

Isn't that weird we both feel like that? This will sound terrible but i prefer the young fellas when they are on because they at least both help me to get up 😃 the women, not so much. I know they are young but they laugh and giggle so much with each other Im sure thats partly why it went wrong today.

i know its just aimed at my pelvis but do you think its normal to feel kind of warm in other parts of your body too?

@EachandEveryone yes, I used to get that with my pelvic radiotherapy.

In fact they had cleverly scheduled my chemo pre-assessment for immediately after my first radiotherapy. They were gnashing their teeth because I had a temperature and saying they'd have to postpone chemo til I mentioned I'd just come from radio.

They made me wait another hour, drink lots of water and sure enough my temp came right down.

I swear I also used to get a tingling sensation.

I found radio mostly boring, especially after the first two weeks...i had 25 in total...are you having to do the empty bowel full bladder stuff? That was the worst bit for me and I got quite upset about it at times.

No Im not having to do that. And I had chemo first then this. Its strange the different approaches. Did you do the leg exercises? I havent got my stockings yet.