Cancer Support thread #78 - Newbies welcome

[MrsPnut]

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

Hey @FizzyOrange if you want message me and I'm more than happy to chat you through the injections. Just don't ask me to look, I don't do people stuff

@BadEyeBri oh that is kind of you, thank you so much. I've sent you a message xxx

Hi all, I was on the last thread, HER2+ breast cancer diagnosed last August. Now finished with chemo and awaiting a lumpectomy in a fortnight's time...and at a bit of a loose end until then!

Sorry to hear about all the problems with picc lines and blood tests. I'm in Switzerland and pre chemo blood test is a finger prick on the day, results come from a machine in 5 min. Oncologist meeting is 5 min later then straight round to the chemo suite. I guess it's expensive but must save a lot of the nurses' time.

Best wishes to all for waiting, tests and treatments.

@FizzyOrange so sorry you are also struggling with body image. It is a very demoralising feeling. Just one more way in which I feel a disconnect with my body at the moment. Strangely, the scar on my breast doesn't bother me as much as the weight gain and baldness - perhaps because I feel that these are things I can and should be changing.

Also wanted to pass on sympathy about the injections. I do filgrastim injections at home on days 2-8 and was quite shocked about how little info I was given. I was literally passed a box of them and told to just make sure I pinched an inch's worth of flesh before I injected. I wasn't even told about/given a sharps bin, so I ordered one for myself off Amazon. Maybe I am just getting angrier generally, but I do think this kind of thing is inexcusable - taking the time to properly explain how to inject would make a scary process so much more pleasant. Hope you manage your injections ok!

JustDavesWife, thinking of you today. I'm hoping that you get good news. We are all here to help you process whatever today brings.

@FizzyOrange I was taught to self-inject doing IVF. The nurse had me practice on an orange! All my IVF was private - and there was just so much more time for these things. They used to warm a rice bag in the microwave and I'd hold it on my arm for 20 minutes before blood tests.

I'm a pretty low maintenance kind of girl but I am also having body image blues. I feel repelled by my own body and I also keep a hat on 24-7. It got caught on a branch out walking with a friend and I was mortified!

I was told the district nurse could come to give my injection if I preferred. I only have one jab.

Has anyone else seen the news that cancer patients get a lower response to the covid vaccine & should have the 2nd dose sooner? It's on the BBC.

@HauntedDishcloth yes I read that this morning - bit disappointing. Hopefully cases will stay low through the spring so our risk will be low in any case.

Sending good vibes to you @JustDavesWife and hoping it is good news.

Just a quick message to say I had my PICC insertion today and it was fine! The nurse was very calm and confident and did it first time with no issues. She tried further up my arm than the previous one because she said the veins would be scarred at the previous site - which explains why the last attempt failed as that nurse basically tried to insert at exactly the same place.

Apparently I am a "bleeder" though - at the end I looked at my side and there was literally a pool of blood on the pillow where my arm had rested! It was actually dripping off the trolley. The insertion site is still bleeding a lot under the dressing which I didn't have last time, but I think is normal.

Hope my fellow PICC/vein sufferers on here have similar good luck with forthcoming procedures!

Never realised how lucky I was re needle-phobia etc till I started reading this thread. (My reaction to pain is to faint before it gets too bad. I play possum, pretend to be dead so the big bad wolf will go away.)

Best thing I can suggest is make to sure you inject at a right angle, straight in, not at an angle and push the plunger slowly. If it's blood-thinners, don't rub the injection site immediately afterwards or you'll get a bruise.

I think covid has resulted in a lot of cutting corners, hanging around waiting, unjoined up care. HCPs are exhausted, short-staffed and feeling thoroughly demoralised by the stupid, stupid pay -rise- cut. There was the same sort of atmosphere at my local hospital, 'failing', till it was taken over by King's.

Re covid immunity, my hospital seems to have been part of the trial, but I had my jab at the GP hub. No reaction whatsoever, not even a sore arm. Now wondering if that means no antibodies. Anecdotally, I had noticed that it was the younger and fitter in my (ageing) circle who'd had the 24hr 'flu' symptoms.

Thinking about @InOtterNews. Post-trsansplant, she must have been super-vulnerable. @IVampire - hope you are getting on OK. You're our resident blood cancer expert?

Fed up. Just as I was thinking of spreading my wings a bit. Brazilian variant in neighbouring borough and now this. I wouldn't say I was losing the will to live, but if I spend much more time indoors I'll be losing the use of my legs.

@Thymeout just a caution - some injections have to be at 45 degrees and NOT straight in - e.g. filgrastim that a few of us have - so check the instructions.

I'm waiting for my onc phone consult - it's been 3 hours. I reckon it's not happening today but there are a couple of things need sorting for chemo on Monday. After yesterdays train wreck I am generally hacked off.

Still getting out for walks when I'm up to it though.

Finally got my consult - different dr I've not spoken to before. But what a nice chap! That's the most I've spoken to any dr since starting treatment. Makes such a difference

Greetings all from the thread media star
Today I recorded an interview with Hugh Pym for the BBC Six o’clock news. It’s about the 11000 women with breast cancer that haven’t been picked up yet. They wanted film of me doing something so DH videoed me on my bike in the living room. I hope the BCN don’t spot it as I am still meant to be resting my arm. I absolutely hate seeing myself with convict hair but it’s in a good cause.
I totally relate to the body image issues. @AlbertCampion the one good thing is when I see myself in the mirror at the gym it strengthens my resolve to say no to cake and biscuits.

@HumphreysCorner glad the parcel arrived safely. You are welcome

@Babamamananarama I am the SafeFit enthusiast and have been doing aerobics and weight training since my op but got into trouble with the BCNs for overdoing it. I love my instructor! She is so good.

Regards to all. May your veins be obedient and your side effects minimal.
Top

That's interesting about the vaccine response and bringing forward second jab. I had absolutely zero side effects when I had mine a week after first chemo so I do wonder whether it found any immune system to actually trigger!

I'm in for my PICC line next Tuesday and feeling quite nervous and daunted about having wires dangling from my body for the next few months. I have told my son (4) I'll have a wire like a robot. Can I ask - do they give you some sort of sleeve/cover or should I order one pronto??

@AlbertCampion I’m a bleeder too, despite it being really hard to get blood out of me except for one vein. Once I start bleeding, I bleed a lot.
My PICC insertion was done in a cath lab by a very experienced clinical radiologist and I still had loads of blood and extra dressings slapped on it afterwards.

@Babamamananarama I wrap gauze around the end of mine and tape it to my arm, I can pull it out of the gauze if it’s needed but it keeps it secure and a little more hygienic. Do buy a limbo cover though to protect it in the Bath or shower. Some people use some tubigrip to secure it the rest of the time.

@Acinonyx2 That sounds positive, it makes such a difference to have good interactions with the doctors.

I am on day 8 of lying in bed with no pants on, and I am thoroughly fed up. I spoke to my oncologist last night and she told me that the only things she could recommend were the things I had already tried and made me worse. She also claimed that she had received nothing from my GP. I’m pretty fed up with it and she cheerfully tells me that it should only last another 4 weeks at most and I should take morphine and laxatives.
Not sure how that will help with the bleeding and pain when I pee but it seems to be her answer to everything.

@TopOfTheCliff Ooooh. 6 pm - can't wait!

@Babamamananarama despite our various issues having a PICC or port is definitely worth it. Join us cyborgs!

@MrsPnut that sounds properly miserable.

I've gone the other way to wearing knickers in bed as (and this may be way TMI) chemo renders my privates unpleasantly sticky. My eyes are also sticky - seems to be a general thing. Anyone else unusually sticky anywhere?

@MrsPnut have you tried orabase paste? Might be worth asking your CNS about. I use it for mucus membrane protection in my patients. It forms a barrier and allows healing.
I think it's used for stoma care in humans. It might help with the rawness.
I hope you heal soon

Oooh @TopOfTheCliff I will be watching! Brilliant stuff - we have a thread TV star! 🎉

@Babamamananarama a tubi grip works well on a PICC. Waterproof cover for it needed too- like this: www.amazon.co.uk/Waterproof-Protectors-Dressing-Cover-Protector/dp/B081QPQRRJ?tag=mumsnetforu03-21

@BadEyeBri I have, that was Monday’s prescription. It’s crystallising too quickly to apply and because I can’t see the area, it was claggy and a mess.

We’re debating flamigel wound or cavilon at the moment and I am waiting for the nurse to call me back. Apparently my oncologist told my GP to prescribe something I have already tried and that has caused a lot of bleeding when I tried it again last night. My GP was lovely and admits that wound care is not her speciality hence passing me to the nurses.

@MrsPnut you could ask about Intrasite? It's a bit old skool but I like it for open wounds and granulating tissue. It also has a nozzle applicator and is more runny than orabase.
It's made from kelp. Not sure why I know that.
Sorry if I'm being overbearing.

Can I ask if anyone else's menstrual bleeding has gone haywire post-chemo?
I had a light period 14 days into my cycle the week I got home from hospital. Then it stopped, now it's started up again with light bleeding. Or is it just basic lack of blood clotting so it's all just falling out??

@BadEyeBri Tried that too, made it much worse last Wednesday. I’ve tried flaminal hydro, flamazine, intrastite, orabase, daktacort and am back to trying flamigel RT. I have some instillagel but that is just for numbing and doesn’t really provide much relief. I have enough to start a pharmacy (or certainly a wound care service).

Oh Pnut I wish I could help. Do they think there's an infection? Might explain the delayed healing

It’s unfortunately a side effect of going through an early menopause and brachytherapy at the same time. It’s absolutely shit though.