It's not summer yet, but we are on cancer support thread 69. Join us if you've got cancer or are having cancer-related tests.

[WhatWouldLeslieKnopeDo]

Good evening lacies and welcome to another thread. We filled the previous one rather quickly with dog stories

Hello to any new posters. Feel free to join us if you've got any sort of cancer, or if you're waiting to find out if you have it. We are always happy to share our experience and hold hands, and even happier when we get to wave goodbye to people who have had the all clear :) (please do come back and let us know either way - sometimes people just disappear into the sunset, leaving us wondering whether they were OK or not!)

It's helpful if you can post a quick (re)introduction, even if you're a regular on the thread, to save people having to remember or to refer back to previous threads. There's no need to "catch up" - just join in whenever you want to.

Waves at Leslie - I’m still awake! My DH is travelling and has a dodgy signal so I’ve spent a lot of time trudging up and down stairs. Took my mobile to bed so he can call me ... so he calls the landline downstairs.... so just as I get down there he hangs up and calls my mobile... which is upstairs ... and repeat ... !

Bloody cancer indeed! Sorry your shoulder is giving you grief.

My scar has been really uncomfortable the last few days - not sure if I’ve been walking too much or sitting for too long in ridiculously hard chairs. Two hours on school chairs last night and an hour on church chairs this morning. Perhaps I should carry my own cushion with me - though nothing screams “fanny cancer” louder than a woman carrying her own cushion....

Lots of love to everyone as we launch into a new week x

tahiti - poor you. But glad you’re out again. I had no idea neutropenic sepsis could be painful (I just thought you’d feel hot/cold and wiped out). I’m also permanently at risk, and have to carry a scary card with a list of symptoms which mean ‘straight to emergency 24/7 number for haemotology advice and don’t muck around’

Hope your scan goes well. How long do you have to wait for results for that sort of scan, or can they tell you as they’re doing it?

Toofar - actually, my first thought would be piles! (sorry)

Leslie sorry about your shoulder, all sounds a bit grim. Hope you can get comfy

Leslie I’m sorry about the shoulder pain. I know how many nerves there are in that region so it’s really not pleasant. In terms of my cancer, I’m just going through the treatment process every three weeks. I hope to stay stable for as long as possible.
I missed Rocket’s post. We have a similar diagnosis

Tahiti I didn't realise neutropenic sepsis was painful. I've had sepsis a few times and felt rubbish but luckily mine wasn't painful. Glad you're finally home

I'm not sure Leslie, it quite possibly is the same book, it's written by a palliative doctor and makes you realise that death doesn't need to be something to be afraid of. I hope your shoulder is a bit less painful today

I'm still in hospital as my temperatures still spiking, they think it's either my nephrostomy tubes or something in my abdomen as I'm getting a lot of pain there.
I saw my oncologist and was told to live my life the best I can he did say he's not ruling out anything but I need to be fit to get on the trial and I have to go back in 4 weeks to see him

ivampire purple I had mouth and oesophagus sores from the chemo, that's where the infection was. My whole neck and jaw went twice the size, the sores all got infected. The pain was unreal! I still can't even eat solid food. I'm living on soup and yoghurts. I'd kill for a cheeseburger
I'll get the PET results on the 13th or 14th. They don't tell me there and then. Scanxiety is the worst. Going to have to keep myself super busy for those few days.

Purple sorry you're still in hospital. I'm keeping everything crossed for you that things improve over the next four weeks and you can get on that trial!

Leslie sorry about your shoulder. I hope your nurse can suggest something to help.

Toofar carry a cushion, just incase! Who cares what people think. Screw them! (I'm a bit grumpy and tired can you tell lol)

Toofar I used a cushion for a while due to nerve pain from my bowel surgery. Nobody ever said anything. I'm sure nobody would make the "fanny cancer" connection - if I thought anything at all, I'd imagine you had coccyx damage or something. And as Tahiti says, screw what anyone else thinks. You deserve to be comfortable I hope you had a nice chat with MrTooFar when he finally reached you and I hope all the running up and down didn't exhaust you too much!

Tahiti that sounds utterly hideous. You poor thing. I hope the pain eases soon

purple does that mean you would definitely be on the trial if you're fit enough in four weeks or would that just be to start the application process? I'm sorry it's all taking so long, and that you keep getting sick. You must be so fed up of it all I hope they can get to the bottom of it all soon.

I've read all the books, but I'm still scared to be honest. Obviously I'm a mega wimp

Mysillydog my shoulder is much better today, thank you. I completely forgot to ask the nurse, as I got distracted with other stuff. Thankfully I haven't had anywhere near the trouble you've had with your troublesome shoulder. I'm glad you're still on the three weekly treadmill. Long may that continue

Waving to everyone.

I happened to cough up some phlegm while my nurse was here so she asked if I was feeling bubbly. I immediately knew what she meant, though I've been describing it as gurgly. It's a strange sensation in my throat/chest when I breathe, from mucus. Anyway, she has given me an injection of Buscopan to dry out my "secretions" and hopefully tomorrow they will have the authorisation so that they can put it in the driver. I felt better shortly after the injection and I've barely coughed anything up today. I wish I'd known sooner as that's been one of the most irritating symptoms for me for weeks! So if anyone is in a similar position in future, ask about Buscopan. The downside is dry eyes/nose/mouth etc. but they're quite easily dealt with :)

Quickly popping in to say hi to everyone, and send special thoughts to Leslie, Purple, Toofar and Tahiti, and of course thoughts for everyone on this thread!

I have been mainly having my naughty boob implant sorted out - I had surgery two weeks ago today, and it was a lot more painful than I expected, and also made me really sick for a week... not the ‘little op’ I had been hoping for! So I’m still off work - for another couple of weeks, but I’m on the mend again now... mainly trying to deal with the headspace aspect which as you lovelies on this thread know better than anyone is the most challenging part of this thing 😏

Love to all... hope everyone is doing as ok as they can be this evening...

Oh! I nearly forgot - the article/pdf that Leslie mentioned was indeed the first chapter of Kathryn Mannix’s book www.amazon.co.uk/dp/B074DPNGWH/ref=dp-kindle-redirect?_encoding=UTF8&btkr=1&tag=mumsnetforum-21

If I can find the extract again I’ll post it back up, because I also found it surprisingly helpful, and reassuring...

Also on the topic of books - I have joined the ‘green roasting tin’ club thanks to you all here - and it looks fab!! I have earmarked lots of recipes to try, and they are just what I need - healthy, tasty but really easy and can cook themselves while I do something else!! So thanks also lovely lacies for that ❤️

Book extract here www.dyingmatters.org/sites/default/files/files/Hospice%20UK%20extract%20-%20Patterns.pdf

I think my oncologist is just putting off telling me there's nothing else he can do. He made a really big deal of how fit I need to be and said even then there's only a small chance of getting on the trial. My heart rate is constantly high because of the cancer so I won't get on it

Leslie you are anything but a wimp! You've handled it all amazingly and you have no idea how much it's helped with you being so honest and open about it all

I didn't know buscopan could be used for that, I thought it was only for bowel problems. See? You teach us things we never would have known

Tahiti and Leslie - you’re absolutely right, I shouldn’t care what people think. I have always been very bad at that, but maybe now is my time to learn?!

Tahiti I’m sorry you’re having such a rough time- it sounds horrid. I’m not surprised you’re grumpy!

Purple sorry you’re still in hospital. Do oncologists think that sort of advice is helpful?! You do have to wonder how their minds work, don’t you?

Leslie - it’s good to know your nurses are working hard on keeping you comfortable- hopefully the injection will keep you feeling better

Toofar I spent the first few years after my original diagnosis really suffering with all sorts of bowel issues because of embarrassment/worrying what others think. That's my only real regret - all the time I wasted. People are generally too wrapped up in their own lives to even notice what anyone else is doing (and worrying about what others are thinking about them!). And there's no point being in pain out of embarrassment

purple I'm glad it has helped. I don't want to worry anyone. But I had little idea of what to expect, from the more practical side (eg medications). So hopefully it means others might feel more prepared. Generally I am not scared, but I do have moments of utter panic, usually when I have a big "attack" of breathlessness. I knew Buscopan had that effect, but I thought it was only for when people were unconscious as all the descriptions of death seem to suggest the mucus is only in the very end stages. But I guess perhaps I'm more prone to that because of my lung issues. Also I think it's more prolonged in younger people, whilst most of the books are aimed at a more average age.

Thank you, Fuzzy :) also welcome to the club! I think my absolute favourite is the panzanella (we left out the artichokes though), closely followed by the leek and puy lentil gratin. I don't think there are any that I definitely wouldn't have again. I hope you find lots that you enjoy. Sorry to hear about your op recovery. I hope you are on the way up now

Hello to everyone.

I’ve just had my first radiotherapy session. Just met someone I used to work with. His wife is here being treated for ovarian cancer. We haven’t seen each other for years. We used to sit opposite each other in an office, saw each other every day for about 18 months and next time we meet years later is in the corridor of a big city cancer hospital. Felt strange.

They put some music on whilst I was in the Radiotherapy suite and the first song was that one, I think by Bon Jovi, which goes on about being “in the danger zone”. I think I might ask for no music tomorrow!

Purple sorry to hear you're still spiking and in hospital. As to 'living the best life you can'... hmmm maybe that gives you a licence to smuggle in some fizz and chocolate?

Leslie I hope you're less 'bubbly' today.

Aren't the cervical cancer screening figures depressing today? The lowest levels for 20 years...

Hello! Sorry to be awol DH and I nipped off for the weekend and I've been playing catch up ever since.

First radiotherapy & the nurse yesterday.
Second today and a CT scan this evening.

@Mrstraveller hope you're doing okay. My music was good actually! And lovely staff

Totally agree TQ .

Yes the staff were really nice they were calling out measurements to each other and I felt like I was with an all female crew on the starship enterprise. Felt very safe.

That's good Mrstraveller :) I always feel like I'm in some sort of space ship when I have a CT scan. A strange coincidence with your colleague! At least it wasn't someone you hated though as you might see them quite often!

KeepCalm when will you get your CT results? I'll have my fingers crossed for you.

Waving to everyone. Happy Pancake Day!

@Mrstraveller quite agree. I've had a different team each day but both a cheery lot without being patronising and when you hear them adjust for just a smidge of a difference it's quite reassuring that maybe this hasn't spread EVERYWHERE and just needs blasted!

@TwitterQueen1 completely agree. I've just signed the forms to get middle kid her vaccine at school, she had the good sense not to moan about it!

@WhatWouldLeslieKnopeDo morning! Am not sure re scan results  It was ordered by my oncologist but I'm not seeing her till 13th May. Part of me thinks no news is good news .......

@purpleunicorns hoping you've had an easier night

Morning everyone else. It is thoroughly chucking it down here. I'm having to take DH into work this morning and having taken more senna last night and just weighing up if it's more embarrassing to shit oneself infront of him or the rads team at 9.20?!?

“keep calm* I think the Herceptin gives me dire rear so I’ve been taken the tablets I was given for that problem whilst on chemo (can’t remember what they are called) before I go to the hospital.

I’ve been having early morning appointments but they change tomorrow to afternoon/evening which I had originally asked for. I’m torn between getting it over with first thing and allowing time for a lie-in and I think lie-in won as I’ve heard you get more tired as it progresses. I’m 2 down, 13 to go.

Xx

Keepcalm I hope you've managed not to shit yourself infront of either your DH or your rads team

MrsT I asked for afternoon appointments before realising it meant I was stuck in rush hour traffic every night which meant it took me an hour to get home. I wish I'd asked for lunch time appointments

The doctors been to talk about my scan results and why I'm getting stomach pain. The cancer is in the lymph nodes and the mass in my pelvis is much bigger than it was on the last scan. I'm getting my pain medication increased but there's nothing else they can do. Guess I'll have to tell my family now

Bugger purple I'm really to hear that hopefully now that they know what is causing the pain they will finally get that properly under control. I hope that the infection is improving and that they have a plan to get you home to your family as soon as possible

Does your palliative team have a psychologist or anyone like that? They might be able to help with talking to your family and/or arranging extra support for them if they need it.

It's such a shit situation.

KeepCalm hopefully you'll hear from someone before May!

Mrstraveller enjoy your lie ins :)

So sorry to hear that Purple. As Leslie says, I hope they can manage the pain and get you home.

purple so sorry to hear that . I hope you can access a psychology team who may be able to help you at the moment.

Cancer is just so shit and I hate it

Thanks everyone. I've told my brother, just waiting for my mam to get home from work and my son to get back from his apprenticeship before telling them.
I'm really worried about how bad the pain is going to get, it's hurting now despite fentanyl, ibuprofen, paracetamol and oxycodone. I know they're going to increase the pain relief but they can only increases it so much and then what? Oh man I really thought I was ok with this whole dying thing but I didn't think about how painful it was going to be I hate the thought of people I love seeing me in pain
And the nurses keep coming round and being lovely and making me cry

Delurking to send much love and best wishes to purple. Bloody, bloody cancer. I am so sorry you are going thru this.... you are being so selfless and brave. You are amazing....