Cancer support thread #77 - newbies welcome

[InOtterNews]

I couldn't see new thread so here we go...

Welcome friends old and new, to the most supportive thread on Mumsnet. Everyone is welcome whatever stage you're at (fears, diagnosis, treatment). Introduce yourself and say Hi

Good luck to everyone having treatment this week. Hugs to all - especially if you're feeling rubbish (physically, mentally, or waiting for results - ugh)

I really do apologise btw- I don't usually sit around feeling sorry for myself, I promise!

Hello. Sorry to read that so many people are still having a shit time with treatments. It is so hard.

I am after advice... I had my third round yesterday and have been utterly floored by nausea. I ended up phoning the nurse yesterday and he said that I need to try to plough through with cyclizine and the oral steroids which start today. I have had a horrible night, constantly waking up and feeling like I am going to throw up. I haven't yet been sick though - but my body will do anything to avoid that to the extent that I have only thrown up about twice in my adult life (and I think both were alcohol induced in my younger days 😳).

Nurse says next step is IV anti-emetics if I still feel bad over the weekend, which I really want to avoid as I am worried about going into the main hospital as my local cancer unit won't deal with acute problems. I'm sipping water, forcing down the occasional cracker and sucking lollies DH got for me, but is there anything else I can try? Feeling awful, even though I had my first steroid an hour ago. I am just so knackered. I am really starting to understand what they mean about chemo being cumulative.

Oh no @AlbertCampion. I'm a relative newbie with only one cycle so don't have much advice. Some things my oncologist mentioned were patches that release into the skin often used against travel sickness and another drug that was combined with a sedative similar to diazepam, I don't have the name of it. I would've glady been sedated in hospital when I was in the thick of it, if it weren't for the covid risk.

My sickness hell lasted 3 days, but at the time it was so awful the fact it might be a finite episode didn't make any difference. I was scared of getting dehydrated. I had various ginger drinks & foodstuffs prepared beforehand as that's always recommended but I couldn't face them. Have you tried a few sips of an energy drink? There may be anti-nausea apps or yoga poses if you can concentrate on them. Or perhaps call the nurses from Macmillan or BreastCancerNow for another view on the meds.

@BitOfFun - I don't think you need to apologise on this of all threads! Get it all out

@BitOfFun no need to apologise, it is all very hard. My cancer is also advanced and I feel as though my body is falling apart, bit by bit. I really understand what you mean about having one day to feel fit and well again, I also didn't appreciate my body and health. Sending you a hug xxx

@AlbertCampion oh dear, nausea and sickness are my biggest fears. If you are taking sips of water and ice lollies you will probably keep the dehydration at bay. I remember when DD was little a doctor said the fluid gets absorbed in your mouth so even little moistening sips will help. Hoping it eases soon for you

My hair has started to shed in alarming handfuls. I have my second cycle on Wednesday so it is a little premature. I actually wondered if I had put the plug in the bath when I had my shower yesterday as it was full of hair. At least when my fatigue hits I won't have to expend energy washing my hair. Adult DD helped me sort through my scarves and tie them round my head yesterday and they don't look as bad as I thought they would. I may have to rethink my earrings though as I do look as though I might be about to tell someone's fortune.

gypsy fizzyorange I would like to know my fortune. Cancer does bring weird silver linings maybe it will bring you new job opportunities!. My hair is starting to come back and I wonder how it will look, Grey, curly and sophisticated? or brillo pad the latter I think.
I remember feeling as if I had aged 30 years after my first chemo. It's hard to explain to others how it feels to have everything that you regarded as good health removed overnight. At risk of sounding like a member the 'be positive' army, one day at a time it will improve.
I'm waiting for the results of my latest scan. I spoke to CNS and she offered to speed it up for me. However I'm not prepared to hear any news apart from the news I want and I have deluded myself that no news is good news. I speak to
the onc this week so my blissful denial bubble will be burst. I find that remote learning and worrying that my sons education is being flushed down the drain keeps me distracted!
Love to all and I hope the pain and discomfort that some are experiencing can be managed.

Just nipping in briefly to say @AlbertCampion I had acute nausea and vomiting after my first chemo and eventually got an injection of metoclopramide. Your community nurse should be able to come to do it, and mine was prescribed by my GP.
@BitOfFun I completely understand how shit it is to feel regret for when you were healthy and fit, and this is exactly the right place to moan about it.
I too am thinking of @InOtterNews, Otter I do hope you are getting better.
I can see that lots of people are having a very hard time, love and sympathy to all.
I'm enjoying feeling pretty good - chemo on Monday will no doubt put a stop to that!

Ah @seizethecuttlefish you have eaten from the tree of knowledge - put the survival stats down. I found a bunch of algorithms and ran mine and felt pretty much like you - not very reassured. But the survival curves are always using old data so tend to be lagging pessimistically - and they're very general and non-personalised.

As for that old stable door. My diet is not bad but if I had to point an accusing finger it would be at alcohol and stress. I've stopped drinking but it's quite hard not to be stressed, what with one thing and another - but I do try. As they say - worry is like a rocking chair, keeps you busy but doesn't get you anywhere.

@BitOfFun indeed let it out. You are among friends. Better yet - friends who know what the hell you're on about.

@AlbertCampion I had horrible nausea 3rd cycle but hardly any 4th cycle! Hope you get it sorted - I do know someone (in the US) who has had to go in for IV anti-emetics and they did really pull her round.

Really hoping @InOtterNews is being well-looked after and recovering.

@Bloodybridget having had a thorough whine-fest upthread I am now feeling quite bouncy. I've been cleaning the kitchen and made my poor finger nails hurt. I actually find that I worry more about the future and my prognosis though when I feel better - like I'm just trying to hold that worry at bay. When I feel really sick I think I just kind of give up and cease to care.

@HauntedDishcloth - yes even if it's just 3 days at the time it feels like forever. This is so true. Very hard to keep hold of the 'This too shall pass' aspect when you're really unwell. Those hours are so long. But as Liz said (and lord knows I'm not the most positive person) it does pass eventually.

When I feel better - like now - I try to focus on living right now and not think about the future (or the news etc). But when it's shit - that doesn't really work very well and I need to think about feeling better - even if that too passes IYSWIM.

So enjoy your weekend @Bloodybridget

@TopOfTheCliff great to hear you raring to go and get back to things. Slightly random but - when you had surgery did you wear any kind of hat or were you just bald in hospital? Also - what did you wear - pjs? How soon after surgery do you think one would be able to play guitar (I hardly play as it is because of neuropathy and nails)? I want my gardening and music back!

Hey all, just catching up but feeling a bit icky and tired after round 2 so just a quickie. I'm just waiting to lose my hair, daren't wash it but I know I will have to soon. When it starts to come out am I supposed to buzz cut it?

Dilemmas eh? And constipation 😭

Big wave 👋

Just popping on very quickly to say thanks so much everyone for all the tips and words of comfort. My second dose of steroids helped a bit and I even managed to get some soup down this evening, so I think things are improving. Still
On the cyclizine and having the odd wobble but it is now just unpleasant rather than unbearable. I am definitely going to see if they can up anti-emetic meds for my next cycle, though.

@BitOfFun I completely understand the body regret. Five years ago I was fit and healthy and ran a marathon. Now I am fat and falling apart. I wish I had taken more care of myself. You may feel you're moaning but it really doesn't come across like that - and it is oddly comforting to read that other people are feeling the same way.

@seizethecuttlefish I gather everyone's different, but my hair started coming out a lot at the end of cycle one. My hairdresser popped over and gave me a number two all over. Then that, too, started to shed a week later, so DH took the rest off with his clippers. It's a very personal thing but I felt much better not having hair falling out everywhere. I felt more in control of it all.

God I am so sorry - brain is like a sieve at the moment! That hair comment was for @HumphreysCorner not seize. 😳 I am honestly incapable of holding thoughts in my head for more than a second or two. So frustrating. Sorry!

@AlbertCampion I'm so pleased you feel a tiny bit better, that is good news. My hair is shedding like mad at the end of cycle one. I am finding hairs everywhere and it is driving me mad. DD has offered to shave it for me but I don't feel ready for that so have compromised with one of my scarves to try and 'catch' the hair for now. I doubled over a silk scarf and tied it on then busied myself with a bit of housework. I didn't realise how hot having a head covering is with hair underneath. I felt so hot I had to take my temperature!

Yes, I'm so glad that the nausea is abating, Albert- it sounds really nightmarish.

FizzyOrange- I can well imagine you'd overheat in a scarf while you've still got most of your hair! But I totally get it that you don't feel ready yet to shave it off. Are you looking at wigs yet, or do you think you'll stick to the scarves?

@BitOfFun currently I think I will stick with scarves. DD brought round a wig she has (just one she bought a year or so ago for when she fancied a 'change') and I tried it on. It felt very uncomfortable and I looked like Cher on a bad day. I would like to be able to go to a proper wig shop and try different ones on but obviously that isn't possible at the moment. I feel a bit exposed in a scarf - I normally wave DD off as she drives away but I hid behind the door in case any of my neighbours saw my new look. It is a small problem in the big scheme of things though really.

I wonder if there are companies that will post out wigs for you to try at home? You'd think so.

Thanks for the good wishes everyone. I am, of course, now wide awake and feeling nauseous again - I'm sure it's worse at night!

I had wigs posted out for me to try by a company called Banbury Postiche. But you do have to pay for return postage. I got a wig prescription and ended up getting one from there but have never actually worn it as it just feels weird on me! I prefer the hats from annabandana, and I quite enjoy rocking a bandana like a pirate!

I was just thinking aloud, btw, not saying that people should choose wigs! I like the idea of a pirate bandana very much .

Morning all. Thanks for the wise words. Overdid it on Friday. Call to NHS24 and ordered to bed with painkillers and there I have stayed.

No advice on wigs or chemo but thinking of you all.

@Acinonyx2 when I went for surgery I dressed normally with a bobble hat to go in and changed into the lovely rear tying gown for theatre. My hair is now reaching the Brillo pad stage so I went bare headed to theatre. After surgery I dressed and escaped again by 9pm although I did have new pyjamas ready if I needed to stay.
From the conflicting information I have had about activity you will have to leave your guitar for at least six weeks at which point you may be able to manage short sessions that may or may nor trigger arm swelling.
I haven’t even thought of picking up my accordion. My poor DH has had enough to put up with recently
@AlbertCampion I did wonder about adopting the pirate look. With my crutch and bandana I just need to accessorise with a parrot now.
Happy Sunday to all
Top

@seizethecuttlefish oh dear, hope you are now resting well and will feel a bit better soon.

I am laughing at looking like a pirate, and Top with your parrot omg .

Yes there are wig companies you can order on line. I bought one and it was OK I was very pleased with it, but you could return if not right. You need to measure the circumference of your head to give idea of what size. Obviously the cheaper wigs dont look as good, the one I had people thought it was my own hair.

Im sweating on next CT scan results and consultants appointment n ext week. Not optimistic as had two lines of chemo, which had only partial success. I have not been able to have surgery (ovarian) and have massive tumours which doubled in size between chemo lines, so very worried about what will happen in the end. Live on my own with no relatives so have actually had to do all my own final arrangements which has been very difficult. Bloody Covid has practically put me in solitary confinement like a lot of us and I was planning a trip on one of the Tall Ship sailing boats this year

Oooh brilliant idea Top! Am v tempted to search for a parrot!

You can get a fake parrot that you programme, like an Alexa, I think. Depending on your disposition, it could squawk something inspirational along the lines of 'You've got this, girl'. Or pragmatic, 'Well, life is shit, but it's better than the alternative.'

@thereisonlyoneofme that sounds tough to do on your own. I imagine you are quite scared. When you say final arrangements do you mean arranging your own funeral? That is grim! Respect to you for your clear thinking and courage.
I have booked up just one thing for 2021 so far which is a trip out on a Brixham sailing trawler in July. Where about are you?If you are near me perhaps I could take you out sailing in my new boat? That will be the one with the pirate captain She is in a marina waiting for me to get strong enough to take her out. And lockdown to go away obvs.
@Thymeout my grandfather had an electronic parrot that repeated everything you said. I think I am descended from Grace O’Malley.

Morning

@InOtterNews I hope you are recovering, and that you have responded to treatment.

@thereisonlyoneofme That sounds like a very tough thing to do and being alone whilst going through all of the treatment must be hard. Have a gentle squeeze.

I definitely prefer the pirate look, my mother had an operation to repair her detached retina a few years ago and we sent her a stuffed parrot to go with her eyepatch.

I am being very lazy here, I’ve finished my mammoth 25 radiotherapy sessions and since Wednesday last week, have mostly been in bed.
I am still exhausted if I do the slightest thing though, yesterday it was making cauliflower cheese that required a lie down afterwards.

I also need to lie down rather than sit because of the sore vulva issue, if I sit for more than a few minutes, it rubs the skin. When every loo visit feels like it is post partum then it starts to really get me down.

I have a call with my oncologist on Wednesday to discuss my MRI results, and decide then next bit of treatment then a visit to the breast surgeon next week to talk about that part.

Hope everyone else is coping with being prodded, poked and chemoed.