Cancer support thread #82

[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

@TwoBigNoisyBoys having the PICC line removed is no big deal, mine was a nightmare to get in, they had to do it twice but getting it out didn't hurt at all, it was just slightly weird because you have to hold your breath while they do it, but it was fast! Well done on finishing x

@Silkierabbit that sounds a nightmare, I have to fill in the limited capability for work forms but macmillan are going to call me and do it over the phone thank goodness.

Hello to @TwigTheWonderKid and @SierraSapphire I'm really sorry you find yourselves here but welcome x

I'm doing ok, still taking too many painkillers to drive but starting to feel really bored at home so that must be a sign I'm getting better. I have been invited out on another date on Saturday by a guy a dated during lockdown so that'll be two dates in two days!!! I just hope my bowels behave and I don't burp on them! Slightly scared of my new digestive system letting me down in public 😳 but I'm determined to get back out there, going through the last few months as a single woman was hard, I'd quite like to get married again one day x

@Podgedodge that's really tough and so true how things can change in such a short time. Big hugs

@Stomacharmeleon I hope you feel more like your self again soon, it takes a long time after such trauma xx

Hi
I think it is time for a hand hold:
DH is having tests at the mo - he thought he had sciatica a few weeks ago but Physio didn't help so he went to the GP thinking he could get a cortisone injection but GP ordered tests:
Blood tests which showed no Vit D (but normal calcium) and high APL (?) levels
CT scan showed up lyctic lesions (pelvis)
He is now having a bone scan
We have been googling looking to see what else it could be but....
GP has given him morphine for the pain as codeine wasn't helping
He is 48

Hello @mumofEandE and welcome. Let’s hope your visit here is a short one. The golden rule on this thread is Don’t Google! You will just terrify yourself with out of date information. Stick to the NHS Choices site or Macmillan if you must. The waiting is awful while the tests are done but things will improve once you know what’s what.
Sending best wishes
Top x

@MissSmiley the line came out fine, the clip was a little more problematic and I did have a teensy little swear! But it’s a memory now 😊 I’m home safe, my fella brought me a beautiful bouquet and fish and chips and I was asleep on the sofa by 7.30.

I rang the bell to mark the end of chemo, THAT was emotional…! It’s been a long 24 weeks.

So, onto the next part of treatment now. Contrast mammogram next, then an appointment with my surgeon to determine the type of operation and the date. So a week or so of feeling poorly to be expected now, then next stage. Ever forwards!

Sending everyone love as usual, and I hope you all have a peaceful Easter weekend xx

@Stomacharmeleon you’re not moaning, you’ve had a terribly traumatic time. We’re all here for you xx

Happy 🔔 to Twobignoisy and Podge.

Is anyone getting any support outside the clinical services? My friends are good, but I feel a bit isolated in that I'd like to talk to other people with cancer. There is a charity locally that is supposed to provide support but they haven't started up again after Covid, and the nearest Maggie's is 50 miles away. I'm in online FB groups for endometrial cancer, but I'm missing face to face contact.

I am supposed to be back in London next week to see specialist and talk about radiotherapy. My calcium is settling - was 0.4- and I had a tic when I was in intensive care. Neck is swollen still and very tight... have lost nearly a stone in weight. I am hungry at times but I feel like I am suffocating and then it just sits which does not make eating attractive.

I know it's going to take a while. Am really croaky and when I left hospital my right vocal chord was still paralysed.

I have been out and about. Taken the dog for a walk etc and my dressings are off. I can feel people looking (it's not that bad and I know I am being paranoid) and I feel like I am just stood still and life is continuing to buzz around me. I feel teary and detached.

Also have a zoom call with bowel surgeon beginning of may and am dreading doing it all over again.

Thanks all for kind messages and allowing me to vent. It's appreciated x

@Stomacharmeleon I 'm not sure what area your in but I've been using the services at Penny Brohn. They are based on Bristol they are slowly opening back up after Covid but a lot of their sessions have been delivered via zoom. I also had some one to one counselling with them which I found really useful.
I hope you find something that will work for you ,good support is as important as the drugs. X

My last message was ment for SierraSapphire sorry, to many hot cross buns in my system🤦

@SierraSapphire try Macmillan? I know they offer one to one counselling which I’m going to try to get, but they are so good they may be able to point you in the direction of other support services in your area too.

Thanks for the suggestions, Macmillan can only suggest the group that's not doing much. There is individual counselling, but I don't want that, it's more the social / wellbeing activities. I may take the plunge and drive to Maggie's. They are building a Maggie's a bit closer to me, but I'm hoping I won't need it again in the future...!

@TopOfTheCliff

Hello *@mumofEandE* and welcome. Let’s hope your visit here is a short one. The golden rule on this thread is Don’t Google! You will just terrify yourself with out of date information. Stick to the NHS Choices site or Macmillan if you must. The waiting is awful while the tests are done but things will improve once you know what’s what. Sending best wishes Top x

I hope you're right but reading this thread is helping too

Lovely ladies - does anyone have any positive experiences of having PICC line put in? I’m dreading it as have heard horror stories, but I know I now need one as it took an hour to find a vein today and it was agony the whole time and I was in bits. My veins have all given up. Didn’t help the guy trying to do it was a cunt; accused me of not cooperating and threatened me with cancelling the treatment. My PALS complaint just gets longer and longer …

But seriously any experiences good bad indifferent I want to know so I can take the plunge eyes fully wide open!

Thank you all and hoppy Easter - tomorrow is the first day all week I won’t have to go to hospital for an appointment - yay!

I know nothing about a PICC line, but that man definitely needs complaining about, the staff should be making sure you're under as little stress as possible, and that sounds possibly abusive to me

Podgedodge Have lovely time at fair today, sorry about your anniversary.

Mowly I am still on cannulas though may need to go to picc I have heard good reviews though my friend had hers in 3 times due to issues. Mine get cannulas in first time but 9 weeks to go. I saw one taken out and very simple.

Sapphire no in person cancer groups but in breast cancer Facebook group some women ask if others want to meet up. I am trying to avoid Covid on chemo but after might do.

We are away for 3 nights and lovely.

@mowly77 I’ve just had my picc line removed (having reached end of chemo) after having it in since the end of November. My experience was that it was NOT what I expected…I naively thought it was like a cannula but higher up! So I was a bit shocked at the process. I had no pain in insertion at all as I had local anaesthetic in my arm. I felt slight sensation of the tube being inserted, but again, no pain. I was however incredibly fortunate in that the nurse inserting it was very kind and compassionate, which sounds at odds with what you’ve been experiencing! I did have a very sore arm for the following few days.

I went on and had problems with it in that it remained sensitive pretty much the whole time it was in. District nurses came to flush weekly, meaning it was undressed, which was always painful. The hospital think it might have been sited near a nerve, which caused the pain, and offered to remove it and re-insert, bit I refused as to be honest I found the whole thing pretty traumatic.

HOWEVER, I will balance this by saying it makes administering chemo and taking bloods SO MUCH EASIER. No poking round for veins of that fear that your veins wil collapse etc. So yes, it’s a bloody nuisance and not nice, but the balance is worth it. And I say this as someone who has moaned about it almost constantly since it went in!

If you have any specific questions please ask away 😊

Love to everyone as usual xx

If (or when) my cancer recovers I'm not leaving the oncologist office until the referral for a picc line has gone through. My experience was positive putting it in was fine I didn't feel a thing. The benefit of just being hooked up at the start of treatment and not having the painful, long and soul destroying process of searching for a vein was just amazing. You do have to get them cleaned weekly but I never minded that.I
As you can tell I ❤ my picc!

Thank you @Runningwithoutstopping @TwoBigNoisyBoys @Silkierabbit … ghats all quite reassuring. I’m definitely going to at least try one as the constant cannulas are the worst part by far at the moment. I’m getting constant blood transfusions and blood draws and I haven’t even started the feckin treatment yet. I’ll see how I get on with it and I will research what it actually looks like and where it is!

The issue is my cancer stage 4 so everything feels very “permanent” and I don’t want it in my body until I kick the bucket … but I guess I can get it taken out as am going to have 12 weeks pax if and when blood count good enough and hopefully oh so hopefully switch back to immunotherapy one day.

@mowly77

Lovely ladies - does anyone have any positive experiences of having PICC line put in? I’m dreading it as have heard horror stories, but I know I now need one as it took an hour to find a vein today and it was agony the whole time and I was in bits. My veins have all given up. Didn’t help the guy trying to do it was a cunt; accused me of not cooperating and threatened me with cancelling the treatment. My PALS complaint just gets longer and longer …

But seriously any experiences good bad indifferent I want to know so I can take the plunge eyes fully wide open!

Thank you all and hoppy Easter - tomorrow is the first day all week I won’t have to go to hospital for an appointment - yay!

@mowly77 I had a PICC line inserted after my feeding tube failed twice in hospital, I was already very weak and was feeling sensitive to any kind of pain by that point but the insertion was ok, it was done in interventional radiology by a very experienced doctor, local anaesthetic at the site meant I didn't feel much but it didn't go into the right place first time so he had to redo it in the same place. Second time was pain free so I'm guessing if they get it right first time you won't feel a thing.

I had special feeds through mine and it didn't hurt at all once installed. Weirdest thing was having to hold my breath when they changed the connectors (not sure if that's the right term) but overall it was a good experience and a lot less painful than constant cannula replacements.

Happy Easter everyone, it's almost 9 weeks since my operation and I woke up this morning to liquid bright yellow diarrhoea so I guess I'm not constipated anymore! I feel ok but can't trust any wind in case there is more to it. I have asked my whipples group and they seem to think it's yet another sign of malabsorption so I probably need to up my creon (pancreatic enzymes) again.

I found out a couple of days ago that most of my lovely clothes fit again after gaining a stone and a bit due to menopause so I'm not going to complain if I lose a few more lbs at the moment, some are still a bit tight. Already lost 22lbs since my op, there had to be a silver lining somewhere.

Happy Easter everyone. I’ve come on to evangelise about oxycodone modified release. It was belatedly prescribed after op and post op infection and worked well so I decided to taper it down for a few days then reintroduce it to use it to mitigate the Bad Days after chemo (day 3/4/5 were awful in cycle 1-3). Currently on day 5 of cycle 4, still a bit buggered up from the op, and it’s been comparatively a breeze. Doc was very supportive of the idea of prophylactic/proactive pain management and it’s worked wonderfully so far.
Yours in calm and a bit stoned, Mrs W

@mowly77 you’re very welcome…I also had all my blood transfusions through it, it really did make everything easier (even though I moaned non stop!) 🙈😂

@MissSmiley every cloud indeed! Enjoy your clothes again!