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

[LemonDrizzle10]

Last one filled up quickly!

Thank you both. Friend is very grateful for the comments.

Bronchoscopy on Monday

Said I'll be sedated and no driving for 24 hrs

Other than that, I don't know what to expect

Anyone able to advise?

@SummerCycling I've found the book moving through cancer really helpful; here's 3 really encouraging pages

Also about recognising bad days and when to conserve energy, especially during treatment.

Post treatment imo it's very much about graded exercise for you and your personal circumstances.

Hello. 9 weeks ago I had half my colon out due to a tumour, luckily they got it all out. No cancer left is what the oncologist said. But there was cancer cells left. As a precaution I was offered chemo, which I said yes and have started. The drip and tablets. Tablets haven’t been easy. I think the treatment is called capox. It will run right up till Christmas. This morning I got my oncologist appointment for the 9th January. I know this is a silly question, but will this just be a check up? How do they know that the chemo is working? Is that what blood tests a few days before my chemo drip is for? Thanks 😊

I know I will have to go for regular colonoscopies in the next few years too. I think every six months

Hi @Slitheringheights and sorry you've had this, but sounds positive news about them getting it. I had chemo to mop up any remaining cells for endometrial cancer, which as there's no specific blood marker for they couldn't tell me whether there were actually any cells left in the first place, and no way to tell through chemo, they leave it 6 months after the end of chemo to scan on the basis that it would take a while for anything to grow big enough to be spotted. I don't know whether there are any blood markers for your cancer, someone else might, in which case they may monitor it that way, but I had blood tests during chemo to check how it was affecting red and white cells not to assess whether or not it was working, but different cancers are so different.

SierraSapphire
thank you for your kind message. I will curious as I didn’t know how they knew if the chemo was working. I will ask at my blood test on Wednesday or chemo app on Friday. This whole process has made me a nervous wreck. I have always been a nervous person but I’m worse now 🥲

Hi @Slitheringheights I'm on CAPOX for Stage 4 appendiceal cancer which has spread to my colon amongst other places.

Blood tests are primarily to ensure you are fit enough for the chemo but can also be used to look at tumour markers to see if looks like there is a response to chemo. I've just started my 4th round and my oncologist appointment before this round was the first time my blood results were discussed with me in regards to tumour markers as presumably you need a few rounds before they can see a response.

I'm due a CT scan next week and chances are you will get one before that January oncologist appointment.

If you have any questions about the CAPOX feel free to message me here or send me a PM. The list of side effects they give you is quite scary but I've found them so far not too bad apart from a few weird ones initially which have been dealt with by a dose reduction of the Oxaliplatin.

TwigTheWonderKid
thank you for your kind message. I hope you are well. Your message explains a lot about markers thank you. I have had my first round of capox, felt tired and had bad wind. Got a week of the tablets before the drip next Friday. My arm hurt the last time. I have a feeling I have had this tumour for a few years as I have been feeling awful plus unexplained sickness, it wasn’t till it started blocking my bowel it got worse. But I had no bleeding or diarrhoea. I thought it was my gallbladder. Which they took out.

Good luck with your ct scan

@TopOfTheCliff how very frustrating about your scan!

@thesandwich I started taking Abemeciclib 2 weeks ago exactly. So far I've had nothing much in the way of side effects - I expected diarrhoea as that's the one everyone seemed to stress but, other than once or twice, my bowels are behaving normally for me. I'm not really any more tired than I was beforehand either. The only random thing I can think of is my fingernails have come apart from the nail bed, on three fingers, up to where the new growth that isn't discoloured from the chemo (but, that could also be from the chemo - the registrar I spoke to on Thurs didn't seem concerned about them & didn't really answer either way).

From what I understand, the bowels do tend to settle down once you get used to the Abemeciclib, so it might be worth your friend trying them maybe. The pharmacist who delivered them to me did say they start everyone on the highest dose, and then can reduce it down if you struggle.

I've had a very lazy day today, after one too many wines last night 🙈 It literally was one too many. I went from merry but functioning, to "I need bed now" 🤣

Think tomorrow will be low key too, with a wander somewhere or other squeezed in.

Can I still have a wine when on my week break from chemo or on chemo. I’m going away to a log cabin in a few weeks. Just in case I’m in the mood 😊

Yes you can have small amounts of alcohol on chemo.

Silkiebunny
thank you. Not had a drink in about three months. One glass and I’ll be fleeing lol 😂

Yes I normally almost never drink but got so fed up with doing chemo (and GCSEs and SN child meetings) started drinking the odd alcohol drink but 1 is enough for me. I think my chemo, Pax, had alcohol in it too.

Welcome @Slitheringheights I am on Cape alone for mop up after triple negative breast cancer. I don’t know whether I needed it and I don’t know if it’s doing anything but I have faith in my oncologist who said it would reduce my chance of dying in the next ten years by 50 percent. That’s worth the fatigue and sore hands and feet I have had for six months. I have just 3 more days to go now! Trouble is I am getting excited and overdoing things so my feet have blistered again. Back to bed rest tomorrow.

Hi ladies, has anyone got any tips on how to stay strong mentally. On paper I know I'm fortunate that I'm in quite a positive situation, trying to word this properly, but tbh I'm really struggling today. How does anyone ever get past feeling sorry for themselves? I know it doesn't help cause what I'm coping with at the moment is probably nothing, I'm physically ok just a bit tired. Its just having to be strong all the time and having to accept so much and have a lot taken off you. Yesterday I felt all pleased with myself cause I had got the housework done, I then thought 'that's just typical of me, soon I'm not going to be able to get things done and its going to really stress me out'. I can then hear my Mum's voice telling me 'you're no different from anybody else'. I know that's true, but I'm so bitter, my Dad only died a year ago. I'm meeting a friend in a couple of hours and I need to take the dog out but I'm just sat here crying. Really sorry if my post has offended anybody.

@Octopus45
I'm not sure if this helps, but you're not alone
I feel very similar
Like my entire life is downhill from here, and everything seems pointless
Is my DD's birthday tomorrow, and instead of been exited I'm just going thru motions
Perhaps someone more positive will come along

@Octopus45 It’s hard whatever your diagnosis, so be kind to yourself. There’s a lot to take in and it can be a scary time. Talk to your CNS about referring you to counselling, if you’re finding things hard. Don’t suffer in silence, there’s good help available as processing it all can be difficult. Take care of yourself.

@unex so sorry you're feeling like that as well. @tam23 I will talk to the CNS about counselling when I have my appointment on Wednesday.

@Octopus45

I'm totally the same. So I'm guessing it's very normal at the point we are post diagnosis?

It's emotionally exhausting. All the unknowns and the drip dip drip of the unfolding scenario.

Just the morning I thought how I'm going to struggle with the house not being like how I like to live in it. It's by no means a palace but i like to vacuum each day and keep it to a certain level of clean and tidy. Maybe we are focusing on that because it's a tangible sign of how out of our control the situation is?

I got very low when my McMillan nurse didn't call me as arranged and my consultants secretary didn't ring me back. Realising that my treatment is in the hands of people who can let you down isn't great.

I think you can't avoid being low some of the time. I'm glad you came here to talk about it and get support.

@tothelefttotheleft I'm sorry you are feeling, I agree its inevitable at this point post diagnosis. I think you are spot on about the cleaning and control. I guess its the whole one day at a time thing which is so difficult to follow when you're a planner.

@Octopus45

Have you walked your dog? ( love to see a picture of them!!).

I find exercise really changes my mood. I walk two hours a day. Will miss it so much when I have chemo.

I think it's quite common to feel sad and anxious after a cancer diagnosis and feel the future looks grim.

I think in quite a lot of cases it does mean your old carefree life may be over and there will be a tough time of treatment which can be an emotional rollercoaster, esp chemo, before you get back to a new normal.

I finished in Aug 22 found the whole treatment year a rollercoaster emotionally, got very low and very anxious but now I feel there's quite a lot to look forward to. During treatment distraction helped, Below Deck, or similar, days out even once a month can make a huge difference and pick you up, for me that was seeing puffins around the UK though that is seasonal but this time of year I did Edinburgh, horrific weather but seeing castle, Forth Bridge helped. Counselling may help, Macmillan have some via Bupa. Charity SomethingTolookforwardto online provides days out etc. Around now maybe fireworks, Christmas things, steam trains, whatever appeals. Then exercise helps, 20 mins a time for it to have positive effect or longer.

If can afford it get a cleaner in or any help you need. Some people find plants and gardening help, not me really.

Year after was tough for me as son in hospital 8 months of it but been to Maldives, Mauritius, Azores, Porto and France and done new kitchen, painting outside of house, new flooring. Financially Macmillan can help with advice. And I swim about 3 miles a week. Saw daughter get 12 almost perfect grades at GCSE, start A levels, get first job, turned 50, seeing her apply for university, get a boyfriend, there's masses of life left for you yet.