CANCER SUPPORT THREAD 65 - for anyone with cancer or waiting for cancer tests (pets welcome!)

[WhatWouldLeslieKnopeDo]

Good morning everyone,

Welcome to the new thread, and the club that nobody wants to join. Our previous thread is here.

Anyone with any type of cancer is welcome. And we will hold your hand if you're waiting to find out whether or not you have cancer at all.

If you've got a loved one with cancer then you can get support here.

Please feel free to reintroduce yourself so we don't all have to remember from the previous thread!

astuz you’re in the worst bit right now- knowing it’s there but not knowing what the plan is. And yes it’s bloody surreal. Cancer happens to other people.

and hand hold. When is the MRI scheduled for?

Astuz this is definitely the worst bit. I think I went through every "grief stage" at least a dozen times in a week after I first found out. If I can offer any advice, it would be to stay away from googling things!

I found out my actual diagnosis today. Hodgkin's lymphoma. I really wasn't expecting to find out today. My GP told me to go see him if I got certain symptoms (night sweats, breathlessness etc) so I went today as I've been having them the past week. He had the results of the surgery in front of him and he told me. I felt a bit emotional, which is weird cos I knew it was cancer, but it was weird to hear it be confirmed. It's all very real now. I think my head is in a good place though - I feel okay

My next hospital appointment is next Friday. Gp said I'll need a MRI scan and maybe other tests to see how far it's spread and the typical next treatment is chemo.

Keepcalm hope it's a very mundane reason that is making the chemo be rescheduled!

Hello to all the other lacies!

Keepcalm I won't say try not to worry as that's daft really - we're all not just worried, we're shit scared. However, you mention genetic test results being due back so I would guess that these tests would indicate a different chemo drug might be more effective than the one you're on now. I know that some treatments will vary dependent on genes so it could be as simple as switching drugs.

Onc nurse rang but I missed the call. Message said something about a meeting in Oxford so I'm guessing there may be a suitable trial. Hopefully I'll know more tomorrow.

Hi to everyone,

Lesley the dog walk worked, plus have been out for a parents evening tonight too. I have managed to say that I am grateful for all they are doing & if I need help I will most definitely ask, but if I am doing something, it is because I want to & to let me get on with it. I said it as nicely as possible & it has cleared the air as I was just getting tetchy despite my best efforts not to be!

The complimentary therapies sound great, I am sure after the six there would be no issue for you to continue if you feel them beneficial and am certain no one would say you were taking advantage.

Keepcalm sorry your schedule has changed and it is making you panic. Hopefully the change of plans will be down to an admin oversight rather than anything worrying. Good luck tomorrow.

Astuz sorry you find yourself here, I also have breast cancer (diagnosed in June) the waiting is the worst bit as your imagination can run away with you. Hopefully your MRI will come through quickly and you can find out a bit more about your diagnosis and then get a plan in place ASAP for treatment. I got a cancellation CT so didn't end up waiting too long for the results, so fingers crossed you have a similar result.

purple not sure if you have seen these, but in the Body Shop they do wooden massage ball type hand roller things (sorry for the rubbish description) am wondering if one of those would help with the numbness? Or having a hot water bottle or one of those warm wheat bags on the area. Good that the consultant found it amusing rather than a worry though

tahiti sorry you are feeling emotional after getting the diagnosis. I guess now you know for sure what you are dealing with, it is good you will have a treatment plan in place ASAP too. Are the symptoms you went to the GP with signs of Hodgkin's lymphoma? I hope they are not bothering you too much and will reduce once on treatment.

mrstraveller Have you found anything to replace the grapefruit drink?
I have also had ice cold fizzy water with lime squeezed in which is very refreshing. Also, since my first chemo I have been unable to drink coffee (I was a complete coffee face prior) but have been drinking tea. I cannot bear milky hot drinks though and have switched to oat milk which i am finding much nicer. I had a lot of nausea on my first type of chemo and have been funny with hot drinks ever since...

pandora glad you are feeling well enough to get out & go into town today. Long may that last

That sounds promising TQ

I wasn't going to post as I don't think I should be here either but I've been to see the consultant this evening and I have a tumour at the base of my tongue apparently. He's transferring me to a specialist consultant who I get to meet at 9.00am tomorrow - he called him in the appointment. Im very pragmatic and together but I think I'm in shock. I never for one minute thought this would ever be me. Bugger bugger bugger.

It takes a while to sink in Gin and Astuz. Initially I was pretty blase... and it took weeks for me to properly understand.

Just take it one step at a time and try to just digest bit by bit. No use trying to look too far ahead or to assume or to panic.

Monday for the MRI, then later in the week to hear the results

I know you're right. I've not been in the least bit worried. I feel perfectly well. Can't believe I've ignored a lump in my neck for so long - if I'm ill my neck comes up. I had a very bad tooth ache 18 months ago and my neck came up but didn't go down but I've ignored it. Now worrying I've left it to long but then I feel like I know the point it tripped over into the big C and that was mid August. Still, I can do nothing about it and what will be will be. As you say, one day at a time and maybe it will be treatable/curable.

Oh, I've found my people, ones that aren't all doom and gloom - I dipped my toe in the proper cancer board and swiftly backed the fuck out of there!

I've got colon cancer, probably stage 4 but despite being diagnosed back in July I haven't actually seen an official diagnosis. I'm a 33 year old mum of two girls (3 and 1) and this started back in May when I realised I hadn't had a proper poo for a few weeks. Fast forward to July when my poo problems turned out to be a tumour in my colon - not the best way to come round from my first anesthetic, especially when alone - and oh yay, I have a colostomy bag now. Then ended up back in hospital the following month due to a block and the most horrendous pain I've ever felt - it topped childbirth for sure! I'm on my 4th round of chemo and waiting to hear about a clinical trial, because apparently getting this at such a young age with no family history isn't interesting enough, apparently a biopsy showed the type I have is rare and angry too.

This time last year I had two cats, both is which died from different cancers within 6 months of each other (and at the age of 14). My dark humour is telling people I'm the cat that's going to survive (cat is part of my name, makes more sense when you know that).

And now I'll go back to page 3 and continue reading, hoping I haven't freaked anyone out with over share.

No such thing as oversharing on here stationary. Sad to see another new name on here but you're not alone . It's seems to be happening way too often just lately. Cats have at least 9 lives....

I have ovarian cancer so not much use to anyone on here right now, but others will be along very soon.

After a pretty rollercoaster three or four weeks, during which things have got worse (the breast cancer turned out to have spread to my bones and is Stage 4, so not curable), I feel I've finally had some positive news.

It's going to be treated with targeted radiotherapy to my spine, so I'll get some relief from the hideous pain in my back, and on top of that they have started me on 4-weekly injections plus tables to shut down the oestrogen feeding the cancer. Chuck in some heavyweight bone-strengtheners, and they think they can keep this bastard away for the foreseeable.

No chemo planned after all, and no mastectomy- result!

They've described it to me as more like living with a chronic illness than dying of cancer.

So I'm feeling pretty positive now.

Oh, and I'm planning to get married in March or so, once I've got the worst of the treatment over, so that's happy too!

So many new people tonight! Sorry you all need to be here but this is a great place for support (and photos of pets 😁)

Stationary I had a stoma fitted a couple of months ago, there's a few others on here with them too

Bitoffun that's brilliant news, well as far as stage 4 cancer can get! Fingers crossed you get no side effects from the radiotherapy. That was the easiest part for me. Have they given you slow release morphine? I take it and it definitely helps me

I've got oramorph, and I'm not letting go of it any time soon

Morning all, hope all goes well today keepcalm - fingers crossed for you

Gin and astuz* - welcome and I totally get how you’re feeling. I found out about my bc about a month ago now and I’m still in shock/denial. No history of cancer in my family, I’m 42, lead a healthy life, 2 small children, noticed my right nipple went a bit wonky but didn’t expect it to actually be anything as there was no lump - except it was something - and just like that your life turns upside down. It’s shit it really is but I think as others have said you have to just take one day at a time and hopefully things will be ok

Hello new people! Welcome.

stationaryace I had my stage 4 colon cancer (actual rectum but we seem to be lumped together!) at 33 last year. I keep being told how rare that is but I meet people in their early 30s and late 20s with this way more often than I expected. I’ve had ups and downs but actually a pretty good year all things considered and life has very much carried on trundling on. We do worry and support here but very little by way of doom and gloom. We’re all about fitting life around the cancer here on this thread, along with some properly bizarre chats about the weirder side effects and (if that’s not enough, crocheted knickers). Welcome aboard!

bitoffun that is really great. The chronic illness thing is very much what I’m aiming for. Also am totally delighted for you about the wedding. How exciting! 🎉👰🏻 Millions of congratulations.

Love to all

@BitOfFun that's great news! I love planning weddings too (part of my work) so let me know if I can help 

@TwitterQueen1 I was told last meeting I have very high chance of ovarian cancer too so will let you know later if am joining you on that one (results of scan possibly today) or if I'm remaining in the BC camp for now.

@GinisLife welcome, you have indeed found your people and this is a safe place 

@astuz the waiting is the worst part. Try to keep busy. I renovated our whole work place whilst waiting then stupidly buggered off on a prebooked holiday where I spent the whole time dwelling I now just want to get on with it and know what's going on.

I never was known for my patience 

Morning @Simmi1 hoping you're not hotting up too much down there. My friend in WA is complaining that she's melting already!

@stationaryace hello, welcome and  I've only been on this thread for a few wks too but the gang here are fabulous for ones sanity 

Thank you for all your kind comments.

The waiting IS the worst. My most terrifying thought at the moment is the results of the MRI -I've gone into my last 3 appointments assuming my little nipple lump is nothing, so now I've gone the opposite extreme and am expecting the absolute worst. i.e. they're just going to find cancer all over the place, not just my little lump.

Nothing came up on the mammogram last week, which I took to mean I didn't have cancer, but yesterday the consultant said that my type of cancer doesn't show up on mammograms, but it will show up on the MRI. I'm really dwelling on that comment - I feel like he's expecting to find more.

I don't know what to do about time off work either. I'm off this week anyway. The nurse was all set to sign me off for the whole of next week, but I wanted time to think, so I said I'd just self-certify if I needed to take time off.

Morning keepcalm I’m in VIC not WA so not quite so hot here. Today was about 18 and cloudy but tomorrow looking like 27 and sunny 😎

astuz - mine also doesn’t show on a mammogram but that doesn’t mean it’s spread! My tumour is quite large and has spread to a couple of local lymph nodes but not anywhere else. Apparently 19 out of 20 diagnosis are local at first diagnosis so please try not to panic - I know it’s not easy. Fingers crossed for you

Congrats on wedding BitofFun - very exciting

Thank you Simmi1

TQ I'm keeping absolutely everything crossed that they've managed to get you on a trial. Sending you as much positive energy as I can possibly muster that they ring you back soon and get your treatment started. If anyone deserves a bit of good news it's you 

Back from my appointment. I saw my mri and it's massive. It's the whole breast tissue (and my boob is a h so very big) no real changes from the first mri before chemo.

stationary I am also bowel cancer. I can't believe they haven't made it clear what stage you are and you are already at your 4th cycle of chemo! Which chemo are you having? Also, your tumour sounds intriguing (if that's the right word ) - is it adenocarcinoma or something more exotic?!

TQ you are of great use to us!! - you know we don't discriminate against different cancers hope you are feeling ok. Are you still in York? I'm very close by!