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Cancer Support thread 86 - Stay Positive

996 replies

LemonDrizzle10 · 20/03/2023 10:40

New thread as other one nearly full.

OP posts:
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48
WorryMcGee · 15/05/2023 22:06

I hope this is okay to post as I deliberately haven’t read any of the thread updates in an effort to have a mental break… we are on holiday. I can’t quite believe I did it and it took a while to get up the courage but I went in the pool with DD, with no hat/scarf on, c section belly and lopsided boobs and all. And the hotel arranged us a babysitter so we could go for dinner and gave us an incredible table right on the water, and I cried because maybe things might be okay after all. Sending love to everyone and letting you know that (hopefully) the Rage Room will be free for the next 5 days at least.

Cancer Support thread 86 - Stay Positive
Whattodotomorrow · 15/05/2023 23:18

Your post has made me smile @WorryMcGee Good for you to get in that pool. Enjoy every minute of your holiday and having no need for the rage room. (I’m back off to my holiday researching!)

TopOfTheCliff · 15/05/2023 23:28

Ah @WorryMcGee that is lovely to hear! Enjoy your holiday
@RedRosesPinkLilies sorry to hear your news. Chemotherapy is “ tough but doable” says the veteran of two laps of the course in 2020 and 2022.( FEC-T and EC-T) Take it step by step, don’t look ahead just deal with today and snatch joy where you can and before you know it you will be out the other side!
@Atreus sorry to hear your news. I would look at the figures differently. It’s not just a 5 percent reduction in risk if you have chemo, it’s a 33 percent reduction from 15 to 10 percent. That’s even more worthwhile. It’s just a short time out of your life going through the treatment to give you the best chance of not needing to go back in future.

I had a haircut today as I have a wedding and a funeral to attend this week. My favourite hairdresser shaped my crazy fuzz and only charged me for a half haircut. We made a date for highlights in July. Grow fast little follicles!

dotty2 · 16/05/2023 05:44

@WorryMcGee I love that photo, and your news made me smile this morning. I’m so pleased you’re all getting a break.

@RedRosesPinkLilies re the chemo, it depends on the timing, but I had my chemo in 3 weekly cycles and felt ok for the last 10 days or week of every cycle. So having treats in the diary for those days really helped. I managed a night away a couple of times, but even just going to the cinema in the morning when it was quiet was a nice distraction. Not everyone gets all the side effects but we can help with specific tips as and when you need them.

bringonyourwreckingball · 16/05/2023 06:16

@Whattodotomorrow i had the face full of painful spots too, I’m now on lymecycline antibiotics and it has cleared up massively.

SierraSapphire · 16/05/2023 06:26

The holiday was great @Whattodotomorrow I definitely recommend it! I hadn’t been abroad or away for a whole week since 2019 because of caring for my DPs, getting no financial support over Covid then the cancer. I could have done with more than a week really, though my DD got ill at the end of it and ended up in A&E back at home (she’s okay now) so it’s a good job we did actually come back.

For the people asking about chemo, I did a lot of things to get me through it, and I only had the day of the chemo itself and maybe two or three other days over the five cycles where I couldn’t live my normal life. I made sure I was as fit as possible, I bought an exercise bike to use at home if I wasn’t feeling up to going to the gym, I ate really healthily, I used hyperbaric oxygen, and probably the main thing that made a difference was that I fasted around the chemo to protect my healthy cells. I also used ice slippers on my feet so I didn’t get neuropathy. I did all this under supervision though. I also had a few days away in the middle, but mainly I made sure I got out a lot with friends even just to the park over the road. It feels like it’s going to last forever before you start it, but actually it does go quite quickly.

RedRosesPinkLilies · 16/05/2023 07:47

Thank you - @SierraSapphire @dotty2 @TopOfTheCliff for the thoughts on chemo. All are very helpful.

The point (to someone else) about percentage risk reduction from further treatment is a really good point.

This thread really does look on the brighter side of the situation that we are in. X

RedRosesPinkLilies · 16/05/2023 07:48

@SierraSapphire - fasting during chemo - should I ask my oncologist about this?

RedRosesPinkLilies · 16/05/2023 07:51

@WorryMcGee i know I’m a newbie - but your post have me hope of a future (altered, but a future nonetheless).
Thank you x

TopOfTheCliff · 16/05/2023 07:59

@RedRosesPinkLilies there will be differing views on fasting with chemotherapy and I am no expert. The main thing is to get through it intact. For me eating regularly is vital for my good temper and energy levels and in three years I haven’t missed a meal. I eat healthily when I can but coffee and cake saved me some days. Others will tell you to fast but just do what feels right for you. There is plenty of time to catch up on healthy eating once you are through. I seem to have lost my sweet tooth at the moment which is great news for my waistline!

SierraSapphire · 16/05/2023 08:19

Your oncologist won’t support or know anything much about fasting @RedRosesPinkLilies (unless they are one of the few in the NHS that does practice an integrative approach) and I wouldn’t advise anyone to do it if they don’t know what they’re doing and preferably have done it and been in ketosis before, but I’m convinced it’s what helped me to avoid the side effects that I saw others having. I first heard about it from this article ages ago, but Dr Valter Longo is the doctor who’s investigated it most https://www.theguardian.com/society/2016/jun/03/how-to-get-through-chemotherapy-decca-aitkenhead-cancer-treatment

How to get through chemotherapy: Decca Aitkenhead on cancer treatment

Before it happened to me, I never truly understood how terrible chemotherapy could be: no description can do it justice. But there are ways to ease its horrors that feature in none of the official advice, and I want everyone to know about them

https://www.theguardian.com/society/2016/jun/03/how-to-get-through-chemotherapy-decca-aitkenhead-cancer-treatment

RedRosesPinkLilies · 16/05/2023 08:32

Thanks both. I will look into it. I had heard a little before.

What I have been doing is trying to be conscious of what I am eating, and not eating excessively/ crappily- but if I’m hungry I do eat. Never eaten more veg in my life!
That can’t not be a sensible approach

Atreus · 16/05/2023 08:32

Thank you everyone for your messages about whether to go ahead with chemo or not after my higher than expected risk of recurrence score. I had a pretty sleepless night last night (not helped especially by the 2 9kg cats who were lying on me and trying to be 'supportive') but this morning am leaning more towards going ahead with the chemo. Off for a long walk in the sun. Hope it's shining with you too.

dotty2 · 16/05/2023 08:50

Thanks for the link @SierraSapphire I might try the horse shampoo she recommends. To anyone contemplating chemo, though, I would say that for me, it was never as bad as she describes. I never felt this was true: ‘Chemotherapy strips away every last ounce of vitality or volition, until you are left only with the outward appearance of a living person’ .I’m not trying to minimise but that’s a very scary thing to read and won’t be the case for everyone.

bringonyourwreckingball · 16/05/2023 09:00

@dotty2 i would second that - I had a pretty dreadful time on weekly paclitaxel and had pretty much every side effect going but although it has been a slog and I have had some very low days/moments it was never that awful and it has gone surprisingly quickly.

WorryMcGee · 16/05/2023 09:15

@dotty2 @bringonyourwreckingball I third that - I’d say I felt rough for the first 48 hours and after that I felt pretty much myself but run down/tired. Still cycled, ran (on EC, not on paclitaxel as I had joint pain on that) walked the dogs every day, saw friends. I expected it to be far far worse than it was (not minimising anyone else’s experience) and I was terrified of it but the 8 cycles went relatively quickly - for me the worst thing was the emotional impact of losing my hair. It completely did a number on me, it was worse than finding out I had cancer in the first place but I have major self esteem/body image issues anyway.

WorryMcGee · 16/05/2023 09:22

@RedRosesPinkLilies I didn’t do anything special throughout chemo except do my best to be as active as possible, and my team said that was likely why I did so “well” on it. Even when I felt bone tired and nauseous in the 48 hours after I made sure I got out for a walk or did some stretching or something. I had days where I felt completely normal - especially on EC - and on those days I would cycle or go for a run. I even did a couple of 30 mile bike rides during EC so it’s not necessarily the case that you’ll be in bed feeling rotten the entire time (which is what I thought was going to happen!) I completely agree with Top’s “tough but doable” description ❤️

TopOfTheCliff · 16/05/2023 09:22

@SierraSapphire I enjoyed that article and am intrigued to try horse shampoo. How would you think to start using it? I can see that poor Decca felt very strongly about her hair and her appearance and it mattered hugely to her not to look like a cancer patient. This isn’t the same for all of us. I have a good friend who won’t go out for an evening without dyed and curled eyelashes. This is incomprehensible to me. She would undoubtably feel similar to Decca if she faced hair loss. The fasting thing seems harmless enough as long as you drink enough fluids but again each to their own. In a different article I read she says she spent six months of chemotherapy lying in bed eating KitKats so I would take her words as hyperbole as she is a professional writer and very dramatic.
All I have to do today is sit around waiting for the chemo nurses to call me. I might go and hoe my strawberry patch gently.
Sending strength to all
Top

KefaloniaKid · 16/05/2023 10:51

@Atreus sorry to read your update. I don’t think it’s an easy decision but from a personal perspective I would want to minimise the risk of recurrence. If your oncologist thinks it would reduce the risk by at least 5% to below 10% I think I would accept the treatment. None of this stuff is easy though. I’m about to start on tamoxifen and whilst I really don’t want to and the percentage benefit seems very small I’ll do it because I don’t want to regret it later down the line. Hope your walk is calming!

JlL2013 · 16/05/2023 10:51

@ClashCityRocker Wed will be a long day. The Chemo takes six hours I think and then you've got to do Radiotherapy as well. Take lots to read! And snacks!

Atreus · 16/05/2023 12:21

I'm so happy I joined this thread (even though I've felt a bit of a fraud at times at having things comparatively easy up to now). My walk with a good friend was fabulous (as was the millionaires shortbread) and talking things through with her and reading all your super helpful comments have put me in a much better place. I'm not going to make the final decision yet, but there is a lot to be said (for me at least) about taking control of this and being proactive about minimising the chance of recurrence rather than sitting and waiting and wondering especially when I am at much greater risk than anyone expected. For now though, I'm going to enjoy the sun and not get too upset at the massive spike on my glucose monitor (I'm doing the Zoe nutrition program atm) from my shortbread...it was definitely worth it!

Cancer Support thread 86 - Stay Positive
Chocolateismyfavourite · 16/05/2023 12:50

Hi everyone

Bit of an update. I can't remember if i told you on here that last Wednesday, I rang up my oncologists secretary to ask for an update. She told me they were waiting for the last part of the biopsy sample to come back from the lab, it was late due to the bank holiday, and that she'd book me in as soon as it came in.

Hadnt heard anything since, and even though Ive been fine, I got myself worked up yesterday and rang the oncology nurses phone late on and left a message, the thing is the surgeon and breast care nurse told me the absolute latest id be seen by the oncologist would eb the 19th ( had a previous appointment booked for then)

The nurse rang me this morning to say, they're still waiting for the last result and they can take up to 6 weeks to come back!! I was like, 6 weeks, wtf!!! she said, its been 4 weeks since it was sent so up to 2 left to go, and it could be that it comes back in next few days, and as soon as they do the secretary will book me in asapa and ill be in within a few days. I said to her why wasnt i told six weeks and she couldnt answer, and, to be fair, if four weeks ago you'd told me i'd have to wait six weeks, i'd have done my nut in. Its just i feel like its in there growing and growing and ive not had any treatment, the earliest I'd have epxected to start was late this week or next week - comparing from my experience last year.

I asked if i could have some chemo in the interim until they came in and she said no because you cant have both together - Im waiting to see if i can have immunotherapy, so I do understand if thats how long it takes, thats how long it takes, but they could have told me.

TopOfTheCliff · 16/05/2023 15:32

@Chocolateismyfavourite is this an Oncotype test that has to be sent out to the USA? They always seem to take 6 weeks. It’s very unfair that they didn’t give you a clear picture of the timing at the beginning as it helps you manage your expectations.

I had my chemo nurse call. Bloods are all good and I am feeling better although dozy. Round two of Cape starts tomorrow. Gloves off and off we go.

I managed a bit of allotment weeding and I’m Googling battery powered tools to help me tame the wilderness up there. I’ve even planted up some ferns by my conservatory so I am feeling positive again. It’s such a blooming rollercoaster this business.

SierraSapphire · 16/05/2023 15:33

It took 8 weeks between my diagnosis and hysterectomy @Chocolateismyfavourite - it was one of the worst times, they’d originally said 4 weeks and I just couldn’t get a date out of them. My cancer grew quite slowly though (or so they thought, though they’d missed something) so they didn’t seem that bothered.

@Atreus I’ve done Zoe, it’s fascinating, I haven’t changed my diet massively other than eating a bit more of the gut boosters and changing the order that I eat things in. I was pleased to find that dark chocolate after meals didn’t do anything.

I’ve no idea about the horse shampoo @TopOfTheCliff, I wonder what it smells of! I don’t really care about how I look much, I never wear make-up, and I don’t do anything to my hair, but I too didn’t want to look like a cancer patient, so for me it’s been more about privacy than looks. I’ve now got hair of two lengths, some that was saved by the cold cap and some that wasn’t, so I look a bit like a grey frizzy pineapple on top!

Chocolateismyfavourite · 16/05/2023 16:56

@TopOfTheCliff do you know, I don't know, but if thats why, then that explains it, and, yes they should have said because after the intial shock I'd have managed it, like you say. Glad youre having a nice time sorting your allotment and that you're bloods were good too.

@SierraSapphire I hope you don't mind me saying this and know what I mean, but Im glad to know this has happened to someone else. Mine is quite quick growing tn breast cancer, but I'm glad I'm not the only one.