Cancer support thread #72 - come in, we're here for you

[Bloodybridget]

Welcome to the new support thread for anyone who has cancer, at whatever stage of treatment, is worried about symptoms, or is waiting for tests or results.

This is the place to worry, moan, ask questions, share experiences and good and bad news, and celebrate milestones!

If you've got a loved one with cancer then your best place for support is probably on the Life-Limiting Illness board.

Our previous thread is here

Current members, please do introduce yourselves

isawyouinTesco welcome to the thread, yours sounds same as mine, lumpectomey and rads, I'm still doing radiotheraphy, half way through a four week stint, I was diagnosed in July and it really does consume your time and your head.

Bridget the bloody arm is a nuisance, this morning one of the radiologists suggested seeing the nurse to have a dressing put on but I couldn't bare the thoughts of more dressings under it at the moment.

Mustard

catrnidge it's so frustrating playing the waiting game and then for things to change is completely head wrecking.

The Patience Inn sounds very apt

I will never get that shirt, Brassica. It was too lovely, and therefore unobtainable (seems like Seasalt only made 20 of them). No joy at all this morning and Holloway is more of a shithole than ever, apart from Waitrose. Even M&S has closed down. (There isn't anyone on here who lives in Holloway, is there?). I bet dizziness/vertigo is one of those side-effects that lots of people get, but medics always act surprised when told because they just don't know why it happens! I'm sorry your car is poorly too, always bad timing with car repairs, isn't it?

Ellen would it be worth getting a nurse to look at your underarm anyway, even if you don't want a dressing?

Catnidge I found lots of inconsistencies in various letters and discharge notes, some of them made me quite panicky, talking about metastasized ovarian cancer and the like. My oncologist always said not to worry and that it was down to mistaken interpretations of my notes and people who'd written notes/letters not necessarily being oncologists. I think there might be blurred lines between endometrial and cervical cancer.

I love the Patience Inn, catnidge's description had the same effect on me, WTF! Can I join you, Brassica? Let's pretend wine doesn't taste completely foul, so I'll have a glass of cold white and some cracked black pepper cashews.

I've just had another phone call with another appointment - going to have a busy few days! Having a clip inserted into the large lump in my breast on Thursday, MRI scan Friday, then oncologist on 23rd, followed by start of chemo probably the week after. Reality is starting to hit home a bit now, and the anti-anxiety drugs aren't helping as much as before. It all just feels so daunting! I have however decided to get my hair trimmed - was debating whether it was worth it, given it's likely to drop out, but have decided to be positive and trust in the cold cap. Someone mentioned about seeing if they can get their hair dyed (sorry, don't remember who) - is there a reason you can't dye it (assuming it doesn't fall out)? I've been dying mine for years - in fact, I don't know what my actual hair colour actually is, as I dye it religiously when I see any roots (which are very white). Does anyone know?

I think dye is just one of the things that can stress the hair and/or scalp out, Zorgoth, so it can weaken your hair even if it doesn’t fall out because of the chemo itself and maybe irritate the skin. Also brushing hair, using elastic bobbles, hair dryers and straighteners etc are all ruled out. So if you want to get your hair dyed you should do so before starting though that may not turn out to be good value for money for obvious reasons!

Good luck with the various appointments. Having the clip put in won’t hurt, they use a local anaesthetic but it will be tender while it heals.

Thanks Brassica - I knew someone would know! Looks like I'll get to find out my natural hair colour then!
Going out to lunch after my clip appointment, so will look forwards to that while they're doing it.

It was me talking about dying my hair. I was told no chemicals for six months after chemo. I had a patch test today and if there is no reaction I will have my highlights done next month. At the moment I look like a patchwork badger. 50 shades of grey without the excitement. It does look better after a proper cut though

You’ve got a way with words meercat - patchwork badger 🤣

Thanks to catnidge for the official opening of The Patience Inn.

Mine's a pint of lager and some chilli crisps.
Or actually I think tea and cake will have to do. I'd like a chair with a headrest please and a footstool.
I decided that knitting is something I can learn and do on the sofa so I got some needles from a charity shop, found a ball of old wool used in games when the boys were young and put a tutorial on YouTube. I'd like to make a hat. As you can see there is some way to go.....
@Brassica I'm a bit of a veteran of dizziness. Going dizzy / fainting on standing up runs in the family. Both DSs will go dizzy on standing up. My sister was ace at fainting in school assembly. I've also also had vertigo which is altogether more unpleasant. This one is, I think, brought on by infection or stress and related to arrhythmia.
When I told the oncology nurse this morning she did a head tilt and suggested mindfulness...

@Bloodybridget shame about the shirt. I live up north in a village in the sticks with no shop and no public transport . If I can't buy it online I can't buy it.

Welcome to new people

Skap she did a head tilt and suggested mindfulness I know what I would have suggested to her!!

Dizziness and feeling that you might faint on standing up is not nice at all. I have only ever had that on the rare occasions when I lose enough weight for my blood pressure to get too low. It is horrible.

Eh up! Mines a pint at The Patience...... Of lime and lemonade though I'm really off alcohol.
I need to cut my hair! Its coming out in bits all over.
Next week, another long chemo. I am having four infusions on the day, because ... ??? Its a long old one and no mistake.
Ooops got to collect from beavers. Better go...

You know, i really must proof read before I post, I make so many mistakes, always posting from phone and not checking it actaully makes sense.

Anyway, pulls up a comfy chair and a foot stall. Orders exotic cocktail and packet of peanuts.

brassica how annoying about the car, last thing you need at the moment.
The sock thing did work really well though. I wish people got advice like that before leaving hospital. When my mum used to have them, I'd dread taking them off for fear of not being able to get them back on. If I'd known that it would have made her life easier.

bridget I think you're right, inconsistencies are down to staff working at speed or so many hospitals, departments involved that no one is quite in the same page in regards of current information

ellanora sorry about your poorly arm. I understand when you reach the point where you don't want another piece of you poked or prodded by someone. Hope it improves soon.

zorgo things are moving on now. I'm sure you're new trim looks lovely.

@skap I like knitting! I think its a nice idea to take it up. The first attempts are always full of holes but you will improve!
@catnidge compression socks are a right faff aren't they. I had them after my operation. Felt so ridiculous in them but they are v helpful.

I cut off my ponytail with scissors this evening. It seemed the right thing to do at the time but I've now got hair like.... Idk its very bad. I look quite unhinged.

Morning all, no bridget in the night, so lets hope she is snoozing away.

Gosh, emperor I'm sure you don't look unhinged!
Consider yourself a pioneer of modern hairstyling!

Have a fab Wednesday all.

Thank you for the your kind words. I too like the idea of the Patience Inn!

WTF I was a bit worried about driving too - my hospital is 20-30 minutes away depending on traffic - but I ended up able to drive myself right to the end (25 sessions) even though my skin totally broke down in the last week and fatigue set in big time by week four. I took the earliest slot available, so generally 7.15/7.30, which also helped avoid traffic, but I was fine until around 11am every day and after that I was useless and in bed by 9. I had a thin cushion to keep the seatbelt away from my skin and quickly learnt to avoid speed bumps! The first three weeks were absolutely fine so if you "only" have 15 sessions you might do ok, fingers crossed for you.

Skap I'm Irish originally but lived in the UK for 17 years and had my three kids there. Have been in Sydney for 12 years now and absolutely love it here. DH and I did meet here though many years ago so it would always have been a special place for us.

Well I have had my first full on post treatment health anxiety attack. I found a lump in my groin in the shower on Saturday night. I was totally convinced that I would have the shortest "all clear" period in cancer history. DH was heading to the US on Sunday for work so I didn't want to worry him. I ended up seeing my oncologist this morning who examined me and has told me that it is nothing to worry about - he thinks it is an infected pimple! He also had a very kind talk to me about health anxiety and told me that he would fit me in for an appointment at any time but right now I need to just concentrate on recovery. I am very grateful for my treatment team.

Emperor I just saw what you wrote about hair, if it is any consolation I look like a tennis ball mated with a skunk at the moment. Cancer makes for some interesting hairstyles!

@snowsinwater ha ha sounds cute. I think I'll go get it shaved, eventually

Snows thank goodness for empathetic treatment teams! I can imagine what you felt when you found that pimple. I think we will probably all live with that buried dread for the rest of our lives. So pleased for you that it turned out to be harmless.

Horrible grey wet morning here so I hope it is better wherever you all are. I am working this morning then off for the Herceptin session I missed last week. Whatever you are all doing today, I hope it goes well and that you have a restful day.

Oh gawd Snows sorry you had that horrible fright - thank goodness your oncologist is sympathetic.
Emperor have you kept your ponytail? Maybe you could sell it like Jo in Good Wives!
catnidge I was only up for an hour in the night! That's pretty good for me, and dare I say the cough seems to be diminishing!

By the way - this morning, this thread doesn't come up on "threads I'm on", not on laptop or phone or tablet! Anyone else in the same boat?

It does come up on "threads I'm watching"

Morning all
Just dropping into the Patience for a quick coffee.
Not up to breakfast as still feeling pretty ropey. Does anyone else get side effects from the bone marrow boosting injections as im wondering if thats what ive got now?.....or it's probably combined effects from the various drugs I've had. Anyway, still finding it hard to eat and my mouth, throat and nose are all sore/uncomfortable. Slightly freaked by this as this time last cycle I was off to A&E with tonsitiits. I don't think that's what it is this time.....sincerely hope not anyway. Will be monitoring it like mad today.
In addition I've got a painful acne like spot at the base of my spine which is really tender when I sit. Ive had them before at this point in the cycle, but never in such an awkward place. And (tmi alert) my bum is really sore from all the dire rear I've had over the last few days I've just rung a friend to go and get some sore bum cream from the pharmacy for me.....thank goodness for good friends!
So nothing major but just enough to leave me feeling bleurgh overall. Really hoping that all these little things start to get better soon as it's draining to keep waiting for that day.
snows thanks for your comments 're rads....gives me hope that may be I'll be able to do it myself. I have lots of friends supporting me but most of them work so not the easiest thing to get time off during the day ....somehow asking them to have a day off to come with me to preplanned chemo seems easier than requesting that they free up a couple of hours in a working day. I'll have to play it by ear I think.
Your oncologist sounds lovely. I'm glad the lump turned out to be nothing serious but not surprised you were freaked out by it....I would have been too.
meercat did you say you were working today? I feel like I'm not a million miles behind you in terms of my treatment and the thought if being at work fills me with horror right now! Hope it goes well anyway.
emperor respect on the ponytail lopping!
My hair is in a right state but I'm ignoring it for the time being, until I feel better.
zorgo do you know yet what your chemo regime is going to be?

I had a lazy day yesterday and same today....tv and knitting ...jumper is coming on great and I've decided I'm gonna knit one of my good friends the same one for Christmas as I've nearly finished mine and will miss not having it to do. I'll put a pic up if mine when it's done. I was binge rewatching Breaking Bad yesterday but had forgotten that the first bit features his terminal lung cancer quite a lot.......so that was jolly
I really wish I was at the Patience and could just sit up a corner and have a little chat with you as you all come and go......that would be very nice today. Good wishes to all anyway.

Hello WTF, sorry you are feeling so crap today. Hope your throat doesn't develop into anything that will take you to hospital! Re bone marrow booster jabs, I got bone pain a couple of times, once quite badly, but didn't notice side effects otherwise. The spot sounds painful too, and the dire rear, you are going through it. A nice drink and natter down the Patience is just what you need (and yes I have been thinking how brilliant it would be to have a meet up IRL, put faces to usernames! I am hopeless at imagining what people look like.).

It is hard to cope with feeling rubbish day after day, when you keep hoping you'll be better. Here's another coffee for you and a hug ((()))

Pops into The Patience for a quick catch up.
@EmperorBallpitine I seem to remember years ago there was a thing called The Mumsnet haircut. It was essentially supposed to be a way of doing a DIY haircut and involved lopping off the ends of a high up ponytail . It's funny how some friends have disappeared and some people I don't know very well have been incredibly supportive. A neighbour of many years has a hair salon. I haven't seen her to speak to for over a year but rang her to ask for recommendation for wig specialist. She has been incredibly kind, brought a card and gift and has offered to come round and shave my head once my hair starts to drop out.
@SnowsInWater what a scare, I don't blame you for flapping. Great service from your oncologist though.
@catnidge I can only manage long posts on a laptop. Middle of the night it's usually phone so lots of mistypes.
@WTF99 oh poor you you sound as though you have sore bits all over.
I swear by good old fashioned sudocream for a sore behind. And once any open cuts heal, lather on diprobase or something very gentle and none perfumed. I'm sticking with gentle tv. DS was watching the new Netflix film which follows on from BB with Jessie Pickman.

Well apart from dizziness week 2 day 2 is pretty good. I've had no nausea. Been at a different hospital this morning to see my cardiologist who is lovely and has given me lots of reassurance and the all clear to have Herceptin. I was very anxious about this. I'm HER2 positive and this used to be the deadliest breast cancer until Herceptin was discovered. I was terrified that my heart condition would prevent me from having life saving cancer treatment....

@Bloodybridget I've had that thought too. I bet we all have pictures in our minds which wouldn't match the real people. We are scattered far and wide though so unlikely. I have in the past met two MNers who had a shared interest/ experience. I have ended up with two friends IRL who I would never in a million years have crossed paths with otherwise. It was all done furtively through DM, then email, then meeting up wearing red carnations. Well you know what I mean.

The thing is, Skap, I don't have any pictures in my mind, I can never imagine what people look like! Is that odd? I just see the name in my head, not an image.
My good news of the day is that I was moaning to a friend on the phone yesterday about the lovely shirt being unobtainable, she said she would look in John Lewis in Leicester today, and there it was!