Cancer Support Thread 87 - everyone here is so supportive.

[LemonDrizzle10]

New thread

Thank you all.
Im having carboplatin and paclitaxel - so will take at least five hours (I think more, especially first time). Just sitting with the infusion.
Good reminder that I don’t need to be brave - I just need to turn up!
Your answers - in different ways - have got me back to where I was with it. Not delighted - but philosophical and will get in with it.
I did used to do an art class - and the older men in it were lovely and kind and relaxed and chatty. I’ll remember that on Tuesday.
Thank you all - for the reassurance
xx

@RedRosesPinkLilies Ours was one big room too. Like Silkie mine was still insisting on masks so no one spoke. Most people took headphones or a Kindle and stayed in their own little world. I didn’t see any of the same people ever, people are in for different times and different days and in my hospital there were 3 Chemo suites.

I wouldn’t worry about getting emotional, all the nurses were adorable in my unit, people are bound to get upset sometimes. If they offer any alternative therapies such as reflexology (they do at mine) take it up as it passes time and is someone to sit with you and gently talk with you. You will be okay. The first time is the worst.

@AGreatUsername Thank you - I think they do offer things like reflexology- I will be saying ‘yes, please’
There is a solidarity in this thread that is invaluable.
xx

Where I get chemo there's no alternative therapy at all. I feel jealous of you lot now with lovely reflexology!!!! There's a full time MacMillan lady downstairs, but she never seems to exit her locked room. The brochures on shelves are the only support.

Our chemo room upstairs is a very big circle where everyone can see everyone, but I am shameless: I've cried, had panic attacks, and even got really angry in front of them all. After my angry outburst, later that day the lady near me and I had a lovely chat. The nurses understand and most likely agree with us; I think they'd feel the same. One senior nurse has told me about 3 times that a certain thing that happened to me should never have happened, she had noticed and I suspect reported it on my behalf.

Oncologists seem to consider themselves exempt from the Hippocratic oath in the thing about not doing your patients harm. At our place, they are really useless with side effects from the toxic shit they administer.

@TopOfTheCliff

your place sound very social! That's so nice.

I think mine is just too pressurised with the overwhelming ratio of patients to staff. Rather a small building, not enough rooms and always patients standing waiting due to not enough chairs.

I'm in suburban London; I imagine it could be a lot calmer more centrally in a larger hospital or further out into the countryside.

The chemo nurses are mostly lovely though.

Mine chemo suite was pretty utilitarian - certainly no reflexology and I think I've said before on here that I got a very odd look when I asked if they had any herbal tea when offered a drink. I hardly saw anyone twice, and people didn't really chat beyond a quick hello. But it was fine - and I remember taking Top's wise advice to heart at the time. You don't have to be brave - you just have to show up.

Mine was quite chatty, the first time I was next to somebody who I chatted to nearly all the time, she had exactly the same three names as my best friend as well, which was weird, but I mostly didn’t see the same people either. No alternative treatments, and I took my own herbal teabags!

@RedRosesPinkLilies my first chemo
I had such a public meltdown. I couldn’t even walk through the door. DH got me through the door, he and my favourite nurse got me to the chair but then I had another one. Floods and floods of tears. I didn’t even notice if anyone was looking at me because I was so distraught (which is unusual for me because I’m usually far too aware of what people think) but I don’t think anyone was, because all my other trips there I kept myself to myself and never felt weird for doing so. I’m not one for chatting to randomers I don’t know when I’m stressed out and I never felt like anyone was looking at me (and I ALWAYS think people are looking at me)

Despite the lack of curtains, in my chemo suite I did feel that everyone was in their own “bubble” and it was up to them what they did with it.

Don’t get me started on the “brave” because I still get that shit now and I feel like screaming “if you’d seen me on that first day sobbing like a child saying I don’t want to that’s the last adjective you’d be using”. I wasn’t in the slightest bit brave when it came to this. I’ve been brave in other situations, mainly work ones, but I certainly wasn’t brave during any of this. But I guess people don’t know what to say so they go all pink ribbon and woo.

I actually miss my chemo team. I used to bring my Labrador to that hospital as a PAT dog so when I get back to that the first place I will go is back there to see them all. I never thought I’d say that on that first day, but those women and men were wonderful and no one else I’ve met on this journey has supported me like they did.

You can do it. ❤️

@RedRosesPinkLilies nothing to add to what others have said as strange as it sounds I quite enjoyed a sit down in a comfy chair ,listening to music podcast and then having a little nap.
My tip with carbo/Pac is that it is a long time and you will need the loo .If you have to be cannulated wear elasticated trousers because they are much easier to yank down one handed (learnt the hard way!) Also I used to get a bit chilly so I would take a blanket with me it felt comforting to have something from home. Good luck for tomorrow x

@EachandEveryone I had microblading and it was the best thing ever, I love it.

Thank you to everyone re hair comments. DH is still annoyed, but not as annoyed as my dad bizarrely - I expected him to tell me to suck it up when I told him but he seemed genuinely furious about it 😂 really out of character for my dad, I told him thinking he might find it funny but he was really upset and angry and didn’t really know what to do with that 😬

Then we went to a bbq at my best friend’s mum’s house and she said I looked like Sigourney Weaver and I’m lucky I have a “nice shaped head” 🤔

v much looking forward to hopefully one day looking like someone who no one feels they have to comment on in any way whatsoever.

@RedRosesPinkLilies I had my first chemo session (TC) last Monday and had exactly the same concerns as you. I knew I would have to share the chemo room with at least one other person and was dreading it as I really just thought I would want to be in my own little bubble and not have to interact with anyone other than the staff.

The reality couldn't have been more different though. Sharing my room was an amazing woman with the same diagnosis and treatment regimen as me, just one cycle ahead and we clicked immediately. We found we had a mutual friend and similar work backgrounds, kids similar ages and she really helped me when I was struggling with the staff not putting the cold cap on properly. Since then we have shared messages and supported each other in a way I would never have imagined. Clearly if I'd wanted to be quiet, she would have left me to my own devices, but just wanted to say what I thought I wanted was very different from what I actually needed and it made me feel v positive about the whole experience that I'd been dreading.

@RedRosesPinkLilies if you’re on paclitaxel you might find you’re quite sleepy and just want a nap - the advantage is unlike EC they are not constantly changing the IV. Honestly don’t worry though, just surrender to the process - chemo day ended up being my favourite day of the week because at least it feels like doing something and everyone is so nice to you

What chemo unit are you in @SummerCycling? are you north London? Mine s a pretty new community hospital and I cant complain about anything except the loos. They have those stupid flushes that are no touch and hardly ever work.

the chemo is fine I quite like going. The pax and carbo take 3-4 hours the first time and after that its much quicker. I always take a packed bag but actually dont use anything in it! I take a sandwich and crips and if I time it right I get fed off the trolley. Take water with you. Lots of it. We have a massage therapist but its down to luck if she catches your eye. Im not one to switch off and sleep simply because I know the steroids will keep me awake so I try not to. I see the same people alot of the time. Most want to talk. Im not bothered either way. I like listening to my audible books.

im more worried about radiotherapy and how they can possibly do it to my groin will I have to take my knickers off? Its not something Im looking forward to but like everyone here, Ill just get on with it.

Thank you again everyone. I’ve enjoyed reading your advice and will be reading it again!
I’m nowhere near London - we live in North of Scotland- it’s a unit that covers a wide geographical area, so I think it’s busy enough, but I believe it’s also well supported by volunteers etc.
Thank you again. Really appreciate it
xx

@EachandEveryone yeah it will be pants off unfortunately. You'll have a gown and they will cover you in some sort of paper towel.

It's not very dignified unfortunately but they are very kind. And on the plus side it doesn't take very long and isn't painful at all.

@EachandEveryone at mine they give you a gown but you keep your top on (no metal bra) underneath it.

Knickers off underneath the gown, and then when you're on the bench you take the arms out of the gown and they lower it down to just underneath your lowest tattoo - mine is kinda towards the top of the pubic mound so actually most of my bits remain covered.

The most embarrassing part is normally at the end in this heat, when my sweaty bum sticks to the paper stuff they put down on the bench.

Very frustrated at blood clot leg tonight - can still hardly walk on it and have been giving myself palpitations reading horror stories of complications. Logically I can see the swelling and pain has improved slightly and it's still early days yet so I just need to be patient and trust the docs. I am definitely not a good patient and have been so lucky so far through treatment that I haven't really had to be.

@ClashCityRocker my troubles started with 2 DVTs in one leg and I was told it can take 6 months for the clot to disperse completely so the progress will be slow. It's frightening though, I also scared myself silly in the early days, full on panic with waking up sweating and shaking. If you can already see a slight improvement, the injections are working. I'm now on lifetime oral anticoagulants as I had a recurrence of one of my DVTs due to a blood disorder, but I had to do the Enoxaparin injections for 8 weeks around my surgery. You mentioned the ones you've done haven't bruised - I found if I rubbed the area afterwards, then it bruised.

Ah I think that's what the nurse did! Yes, googling recovery time has been a bit of a shocker. I'm just going to have to reset my expectations.

Ive been through two central London chemo units (injections only though, no actual chemo) and they've all been crazy busy. One does have curtains they can draw which makes it a bit easier, the other was multiple rooms (from really large 6-8 chairs to smaller with 2-4) which wasn't so bad either as you were facing patients who were quite far across from you in the grand scheme of things - getting to chatting wouldnt have been an option. But the waiting rooms - sheer chaos all the time every time!

Can I have some non-cancer related advice? I can’t start my own thread on it in case my friend sees it but she definitely wouldn’t be in here and I don’t have anyone IRL to ask.

My oldest friend - we basically grew up together - has two DC, 4 and 2. The 4 year old is lovely but the 2 year old just…isn’t. I feel terrible saying that and I’ll admit I don’t know much about 2 year olds but he’s violent and unpleasant to be around. The last few times I’ve met up with them he has sought out my 13 month old DD to be mean to her. He kicks her, hits her, pokes her, it really upsets me and whenever he does it he’s just told “that’s not kind” or made to sit on her lap (which he seems to actually enjoy tbh) and neither thing has any effect. It’s not for me to tell her how to parent her child so I don’t say anything and now I just make excuses not to see them, which is such a shame but I don’t want to lose my oldest friend over it so I find avoiding her when she has the children with her easier. Yesterday we went to a BBQ at her mum’s (who does tell the 2 year old no so I thought it would be “safer”) and he kicked and hit both our dogs, pushed and kicked DD when she was crawling by our feet so nowhere near him and his toys etc, deliberately trod on her foot multiple times when she was cruising on furniture, poured water all over her head and almost hit her with the hose pipe nozzle he deliberately swung at her face but DH caught it. Just typing this is making me angry. We are going camping in a couple of months and I don’t want to go as I don’t see it getting better. I know kids hit each other and stuff but I feel like he goes out of his way to be nasty and he targets my DD who is so little 😢 they joke about him being a “hooligan” but I don’t think it’s funny.

Have any of you guys been in this situation? What the hell do I do?! Or am I just being PFB about it all because this is what little kids are like, I don’t know.

Hi @WorryMcGee I get where you are coming from. My BF had a second child at the age of 45, this child is now 6 and completely feral. She has had to go into the school because her DD keeps biting the other kids. I have a granddaughter who is also 6 and when they were babies we would meet up once a week. Every week without fail her DD would do something vicious (even trying to strangle her at one point) to my GD. My friend would tell her off but in that loud I'm doing this so other people can hear my parenting voice. Sometimes she wouldn't tell her off at all - think sometimes she just didnt have the enegy as her DD would have a meltdown if told off. On those times I would tell her off myself, it's not acceptable behaviour and at any age they need to be told off quite severely for being physically abusive. You are not being PFB and this is not what little kids should be like x

Thanks @Scandimandy , I think I will have to say something before she realises something is up herself/I snap and tell him off. It’s the fact that it’s clearly intentional harm for harm’s sake that bugs me the most. It’s not a reaction to her taking his toys or something, he just makes a beeline for her to hurt her. DH thinks he’s jealous of her presence in general because he’s no longer the littlest? But I’m not sure that’s true because he’s not short of attention, the opposite in fact. Ugh 😣

@EachandEveryone

You've got a massage therapist! That's amazing, I hope you get her treatment soon.

We have none of that at our place - no, not north, but SW London. Nice chemo nurses but such a hectic place. I'll miss it after treatment like missing a chainsaw cutting my leg off i.e. relief not to have to turn up there any more.

I found radiotherapy totally fine, although different part of my body so it didn't involve taking my knickers off, which would have made it more stressful because I'm shy - I hope they are kind and discreet about that for you. They did my neck as well as breast, under arm, and 2 other places, but thankfully not high enough to need one of those terrifying masks.

Overall, radiotherapy wasn't even 1% of the suffering caused by chemo / immunotherapy. I hope it goes well for you too.

"you don't have to be brave - you just have to show up"

Exactly. It takes enough courage to show up though, when you know more suffering is ahead because of the stuff they're going to put into you. But the nurses don't expect or ask for bravery; they understand when someone is scared - they were lovely to me when I had a panic attack. I feel traumatised by chemo. Others sail through it. We are all different.

@WorryMcGee I think some kids use aggression/violence as some sort of outlet for something, they need to be taught alternative ways of dealing with these feelings. You're being brave about addressing it and it is the right thing to do. It's funny isn't it how you can be perfect friends with someone but when they have kids you become incompatible :) x