New year, new thread - cancer support thread 68 - join us if you have cancer, or are waiting for cancer-related tests

[WhatWouldLeslieKnopeDo]

Hello everyone,

Welcome to the new thread. Our previous one is here.

Anyone with any cancer is welcome, or anyone waiting for tests because they might have cancer. If you're new, just jump in wherever. Don't feel you need to catch up with previous posts. We talk a lot! Ask any questions you need to. Someone will hopefully have an answer. And feel free to post photos of cute pets too.

Whether you're new or not, it's helpful to post a little introduction on the new thread to save people trying to remember everyone's different diagnosis and treatment.

Leslie. Wish I lived near you so you could er “lend” me some of your oramorph stuff This swelling under my arm is giving me a lot of pain. I saw the BCN today but perhaps didn’t stress enough how painful it is. Have Oncologist tomorrow which I think will be about radiotherapy😏

weebarra. I actually had the “you look so well” comment this very day. I think I actually look drawn and haggard due to the pain.

We’ve had a reasonable amount of snow here (north west). I’m a bit nervous it will freeze overnight and make it difficult to get to the hospital. Have to be there for 09.30 am.

Haha! So you actually do knit in your sleep... wonderful

It’s such a good point about the emotions not just going away... I need to remember that, and probably partake in a bit of self care - thank you

leslie that is an impressive number of posts for someone who’s had such a tough day. Glad it’s easing off. I haven’t had many visitors, but I don’t think that’s a bad thing. I’m so full of wind, and it’s such a relief when some comes out, that I’m very happy to lie here and parp in peace!

@Toofaroutallmylife if you can lie on your left hand side that helps with trapped wind, that and some peppermint. Happy parping

Today I had the nurse at my surgery saying "wow you've had bowel cancer and treatment and you haven't lost your hair? You're so lucky!"

Erm. Yeah. I've had cancer but I'm lucky. Ok then. I know she meant well but ffs.

I also had an old man at the hospital who noticed I was only paying £1 for my visit and he said "oh that's nice, what do you have to do to pay just a pound?" And I said "all you need to do is have cancer and they will give you the discounted rate." The look on his face was priceless. Evil I know but I need to find my fun somewhere😂

Thanks keepcalm - unfortunately lying on my side isn’t an option at the moment, but peppermint tea has been a huge help

Dulce. What a knob and great reply. I hate people who notice and comment on stuff like this. Feeling hard done by because someone else can park more cheaply than him. Grrrrr.

@Toofaroutallmylife I miss my left side lying just now too

@Dulcedelecherocks nice comeback 🙌🏻

Just wanted to say good morning to leslie and I hope you have a more comfortable day and manage to eat some cheese!

toofar how are you doing, the post op wind is no fun is it?

weebara lovely to hear from you too, so much time has gone by since you were here as a new mum. I’m thinking about cancer a lot at the moment, a very good friend is due a massive operation for bowel cancer and I’m really worried for him and his lovely wife. It’s coming up to 5 years since my diagnosis and my final mammogram will be in April so I’m imagining aches and pains all over. I don’t know if your head ever really gets over this.

Hello to everyone else, I know I’m not a regular any more but I keep drifting back...

Puffle that's great news! So happy for you

Babay good luck with your appointment but hopefully it's nothing to worry about. Let us know how you get on

Leslie the nephrostomies are quite uncomfortable if I move to fast or try to sleep on them in certain ways but I'm slowly getting used to them. It bloody hurts getting the bags changed by the nurses though as they end up pulling the tubes that are attached to my kidneys
The unicorn isn't too difficult to make but I wouldn't buy it for a beginner as the wool is quite tough with it being recycled and the wooden hook means it doesn't slide the wool off smoothly like it would with a plastic hook and normal wool, you also need to buy stuffing for it, I've got plenty spare so that's not a problem.

My lovely Macmillan nurse has just been and increased my painkillers and prescribed me steroids. He's also arranging a scan for my hip/leg as he's not convinced it's sciatica. I was awake in tears most of the night as it was so painful

purple so sorry you’re in so much pain I’m glad your Macmillan nurse is on the case.

Hello to everyone. Hope those with snow are tucked up in the warm at home.

purple. Sorry to hear you had such a horrible night. Must have been awful. I hope the increased painkillers work for you.

I was supposed to see the Oncologist this morning about Radiotherapy but she couldn't make it in due to snow. I got there and I saw a BCN (a different one from yesterday) who talked me through the radiotherapy and I signed the consent form. I mentioned how much pain I am in with the cricket ball lump under my arm. She had a look and said there is a bit of a fluid there and drained off 20ml. So hopefully that will help a bit. She said the surgeon had to go "quite high up" to get to all my lymph nodes.

First appointment for radiotherapy should be in about 3 weeks time

xx

Purple can you ask the nurses to be more gentle? That sounds awful.
Leslie how are the adhesions today?

I finally got my CA125 results - not what I wanted - up to 679 from 570 and 480 the time before that (the norm is anything up to 35 with a wide margin). I know it's early days and this marker is notoriously unreliable but I'm disappointed nevertheless. I'll have to wait for the next scan mid/end Feb to get a more accurate update.

@TwitterQueen1 here you go, sorry it took so long and for shoddy pics! I absolutely love it!

Thinking of you both @WhatWouldLeslieKnopeDo & @purpleunicorns

Keepcalm that is beautiful

oh that's lovely KeepCalm! what beautiful colours. tx.

Beautiful. So bright and colourful.

So beautiful!!

Beautiful!!

TQ. Sorry your results are disappointing. I hope Feb update is better.

Xx

@TwitterQueen1 am really sorry but I don't know what 'markers' are etc Nobody has ever explained them to me and I'm a great one for burying my head in the sand  Whatever they are an sorry that it's disappointing news and another wait involved 

@WhatWouldLeslieKnopeDo and @purpleunicorns I hope you've both had an easier night

Love to all else as well.

Having just had three days of adulting and doing 'things' am pathetically gubbed and looking forward to a day of nothing.

I'm waiting till DH out walking the pups so I can ring GP about a sore throat. It's nothing but I don't want it to be something but he has an interview today and I don't want him worrying..... it's a tangled web this cancer shit weaves isn't it!

Having a self-pity party this morning. I’ve told DP I’m scheduled for a colonoscopy, thinking sharing would make it easier, but it’s actually made it harder! I keep thinking, what are we going to do? What about the baby, the mortgage, the house? We have no family in the vicinity. Plus am ashamed because I know all your ladies’ lives have been turned upside down, but I don’t see you kicking and wailing

Don't let this surface equanimity fool you babayagga. Inside, we're all kicking and screaming with the rage.. and shit scared too. So you carry on - we'll hold your hand.

KeepCalm 'gubbed' is a new word for me. It's very apt isn't it. Sorry you feel so bad. The markers are levels of specific proteins in the blood. The trouble with ovarian cancer is that usually you can't feel any tumours and it's often symptom-free, especially when it's very nebulous as mine is - no big single tumour, just a large network. And I have no pain. So the only way the doctors can see what's happening is by CT scan and you can't have too many of those. So bloods are the only gauge of what's happening inside and because my levels are very high and rising it means the cancer is not retreating.

Here endeth the lesson