Crack open the wine... it's CANCER SUPPORT THREAD 61!

[WhatWouldLeslieKnopeDo]

Some of us have been here a while and others have only just joined. If you're lurking, feel free to say hello. We are quite friendly really.

You are welcome to join us, whatever sort of cancer you have, or if you're waiting for tests to find out whether you have cancer or not (we hope not!)

Our previous thread is here. Do check it out if you're new as there's lots of useful information in the first few posts.

Best wishes to everyone who finds themselves here

Hi everyone. Hope you're all having an OK weekend. I'm waiting for an appointment after a referral for heavy bleeding and a sore type thing on my cervix. I'm very anxious and up and down. I'm bleeding again and have some pain. Feeling permanently sick with nerves. Any more tips on how to control it. Can't do this for another 10 days!

Hi furryface (great name).

No experience, but I'm here for a hand-hold, and to join you in the dread-club.

Personally, I've recently downloaded the Calm app, and paid the subscription. It is genuinely a god-send. It helps to keep me on the level, and to get to sleep.

for you.

Thanks Miles. I'm being a massive wimp and can't stop crying at the moment. It comes and goes. Dread is the word. Will you know more on Friday or need to wait for results? Let's hold hands! I will look up that app. Sounds good. Take care everyone.

Hi everyone...
Haven’t posted for some time.

Diagnosed with 1b grade 3 leiomyosarcoma (uLMS) post hysterectomy last June. No further treatment necessary at the time. CT scan every three months.

I’m allergic to CT contrast dye so images not as clear as they could be, however Dr was happy with my scan in October.

Have been having some abdominal pain on and off since just after Christmas and apparently Dr isn’t completely happy with the CT I had last week, so having MRI asap.

I’m really struggling atm. I know I have a 70% chance of recurrence and they’re obviously checking something different that’s on my latest CT compared to previous one.

... one of the worst things for me is telling people and almost apologising for upsetting them?!

People tell me to think positive/it could be worse/ you’ll be fine/ etc...

Feeling really panicked atm, sorry for rambling

Hi Furryface, I know you can't help but panic but just remind yourself that there's absolutely nothing else you can do now until your appointment. You've taken the first step by going to the doctors. There's a good chance that it's nothing to worry about but if it is mine was cervical and it's treatable. The waiting around is the worst bit

Greyboot I know exactly what you mean about telling people, that was the worst part for me. I worry about people worrying about me if that makes sense fingers crossed for your MRI, and in the meantime feel free to ramble away if it helps you

Hi Greyboot but sorry to hear your latest worry. Do you have a date for the MRI yet? I hope they can get you some answers quickly.

People can be really unhelpful when you tell them. And I understand the apologising. I felt almost embarrassed telling people mine was back

No need to be positive here if you don't feel like it

Furry I hope you find the app helpful. I use Headspace as I got a free subscription from Trekstock

Which reminds me, anyone here in your 20s or 30s, look up Trekstock as they offer various forms of support and also send a few little treats when you first join :)

helly phew about the mammogram :) I hope the elbow pain wears off soon

wine lovely to see you again and sorry to hear about all the surgeries! fingers crossed for this year

Twitter I hope DD is feeling better today and fingers crossed for the tests

Waving to everyone else. I hope you've had a good weekend. Sending hand squeezes for all who are waiting for results

It is weird isn't it, feeling bad about delivering bad news, when you're the one the bad is happening to.

Hello :) new here but think I'll be a regular I got sign posted here because I had another thread and posted

'So on Thursday I sprouted a second face underneath my face! It's on the left hand side of my face under my jaw about the size of a golf ball.

So I went to the GP on Friday and they prodded around and asked a few questions and said it might be a fatty lump (!) But because I fit certain criteria I've been put on the oncology pathway. I tick ✅

-random fevers (38.8 every night)

• night sweats
• itchiness at night
• breathlessness'

Im 26 and I know it's probably not going to be great but I just need to find some support!

Forgot to add The gp rang yesterday (they work weekends here- poor bastards) and I have a fine needle biopsy tomorrow morning rushed through. Which is a bit shit :(

mumpelstiltskin I'm glad you found us :) welcome. I'm the same age. I've not had a biopsy but a few others on here have so hopefully someone can reassure you a bit/answer any questions you have. Things do move quite quickly once you've been referred under the two week rule. We were discussing it at the end of the last thread actually. It's reassuring but also makes it all feel very serious. Anyway, hopefully it will turn out to be a fatty lump rather than anything sinister

Actually I'm not the same age because I just had my birthday. It takes me a whole year to get used to my new age

@WhatWouldLeslieKnopeDo thank you! My DH Is a GP and he now knows. He thinks it's likely lymphoma, but he's not an oncologist he a bit too blunt :/

mump I'm glad he knows. Hopefully it will help to have his support :) good luck tomorrow

I hope everyone sleeps well tonight

Good luck for tomorrow mumpelstiltskin, hoping your DH is wrong and if not they've caught it early. Glad he's home with you now.

Leslie Happy belated birthday, I didn't realise you were so young, sorry you've had to go through so much at such a young age.

Twitter I hope your daughter gets better soon. Have they tested her thyroid? I'm sure she's in the best possible place at least.

I'm just waiting for a cystoscopy on 23rd and a hysteroscopy and biopsy to be arranged but trying not to think too much about that as can only do not thinking or crazy panic. Off to Torquay with the kids on Wednesday, discovered they also do micropigs there which is what DD is obsessed with and micropig races as well as the penguins on the beach for DS, forecasting rain but who cares! Hope everyone else is as well as they can be and good luck with any treatment / test results / not panicing.

Welcome to all the new posters and hello to everyone else.

Thank you for remembering my lumps and bumps Leslie I think you are amazing at keeping up with everyone.

I was diagnosed with Stage 3b Neuroendocrine Cancer in June 2016, thankfully low grade. I had an extended right hemicolectomy and part of my small bowel resected in September 2016. My scans since then have been NED which is great however with the nature of Neuroendocrine Cancer as it had spread to my lymph nodes I will never be classed as cancer free. At my last consultation the oncologist said the disease is somewhere just microscopic so we can't see it!

I had the MRI scan of my shin lump and had a call Friday to say the orthopaedic consultant wants to see me Friday to give me the results... I'm eagerly awaiting them and playing the results guessing game in my head.

On my last scans my Thyroid nodule has doubled in size so I'm seeing a thyroid specialist next week to find out what's what.

Currently laid up on the sofa with extreme bowel pain that's hit me out of the blue and been constant for nearly 48 hours now!

I hope all you are feeling as well as you can and those awaiting results are holding out ok. Sending best wishes to you all.

Hello everyone. I'm just de-lurking to send warmest wishes and hugs. I rarely post but read the threads regularly. Brief history - I was diagnosed July 2016 with 10cm DCIS and 2 areas of micro-invasion. I had a mastectomy with an immediate Lat Dorsi reconstruction. I'm now on Tamoxifen. and for you all. You are all very much in my thoughts xx

Hi everyone. I hope that all of you with kids are managing to enjoy half term, and the rest of you aren't planning to go anywhere touristy!

We had a lovely Southbank day today. It really lifted my spirits, although I got a bit wobbly a couple of times.

Furry, I don't imagine I'll get my results on Friday. All I know is that I have an appointment with the haematologist in six weeks, but I imagine that will be brought forward, depending what they find.

I'm off to meditate now.

Happy Monday!

Hello everyone, thanks for new thread Leslie

I have just had right Hemicolectomy for ? neuroendocrine tumour. Waiting for results still. Had surgery on 30th Jan so taking things easy at the moment.

@likeazebra - have you been told to avoid mushrooms , nuts and corn for the rest of your life since your operation?

Hello everyone newbie here, I’m delurking for a handhold as DH has testicular cancer. He has just had his operation and we are waiting to find out what happens next. How do you explain all this to small children? Wishing you all well.

Hope your biopsy went ok Mumple.

@TheHobbyKing sorry to hear about your husband, hand hold from here. I told my three (15, 12 and 9) straight away as I didn't want them picking up snippets of conversations, putting two and two together and coming out with an even worse scenario.

@ggirl I was put on a low fibre diet (which would mean excluding the foods you mention) after surgery to allow the join in the bowel to heal properly and to lessen diarrhoea as my bowel got used to it's new length. I stayed on that until after my post op check ups and have since slowly introduced foods back. I think I am still supposed to avoid nuts and seeds to prevent an obstruction however have started to eat small amounts of them recently. How are you feeling?

@likeazebra I have been put on low fibre diet for 6 weeks until post op check but have also been told to avoid mushrooms,whole nuts and corn for life.
There were 5 colorectal consultant surgeons on the ward and 4 out of 5 of them advised this . Mine said that there is inconclusive evidence to support it but he errs on the side of caution.

I'm feeling much better thanks , op had to be converted to open unfortunately as I apparently bled a lot . Not sure how long I will have to wait for the results ..have been told 10 days , which has passed now and then told 3 weeks so that's next week sometime ...horrid waiting game.

@ggirl the waiting is stressful hopefully they won't keep you waiting much longer. I do agree in a way about the foods as I don't digest those foods at all (sorry in TMI) they pass through whole.

I can't remember, are you under a NET specialist? If not I would recommend being transferred to one as soon as you get a positive result for Neuroendocrine.

@likeazebra thanks, if it's NET I will definitely ask .

Hand hold for everyone waiting for results. TheHobbyKing sorry to hear about your husband. My kids were 10 when I was diagnosed; we waited until I had a confirmed diagnosis and a treatment plan, and gave them the facts. Macmillan give really good advice on talking to your kids and we also used a book called The Big C which was helpful. We told their best friends' parents and school too, so everyone was on the same page. Good luck - it's hard to do, but a relief when nothing's a secret.

Waving to norajane it's lovely when lurkers delurk :)

Penguins it sounds like it's going to be a fantastic trip!

likeazebra good luck for your appointments on Friday and next week. Sorry to hear about the bowel pain. Is it adhesions? Have you got painkillers?

ggirl I was told to avoid those too. Also celery and desiccated coconut. I hate both of those so was happy to cut them out. But I do eat mushrooms, nuts and sweetcorn sometimes. I just make sure I cut them up and chew them very carefully, especially mushrooms as they are very difficult to properly chew! Every leaflet and HCP seems to have a slightly different list of "must avoid" foods.

nicky how are you feeling so far this cycle? Thanks for your advice re ports and CT. I had my CT today and used my port. It was so much easier :)

TheHobbyKing sorry to hear about your husband. I hope that he is recovering well from the surgery. I linked to this article on the previous thread. I don't know if it's any good as I don't have children myself. Good luck :) there's also a thread in the Life-limiting illnesses topic for people supporting a partner/loved one with cancer, which you might find useful. Sadly there's quite a few posters in a similar situation

Miles I'm glad you had a good day :)

It was really sunny here, though freezing cold. Now I am starting to feel all summery! I hope everyone got some sunshine