Cancer Support #70. Please post on this thread, not #69, If you have cancer or are undergoing tests for cancer. Rant, rave, scream, cry – whatever helps. Supportive lurkers for Leslie welcome on #69.

[TwitterQueen1]

Thread #69 is filling up with messages of support for one of our own who is very seriously ill. Leslie told me a few weeks ago that she didn’t want any such messages to get in the way of those who need support through their cancer treatment so we are starting a new thread just for those who do have cancer or who are having tests. Could we respectfully ask lurkers and supportive posters to confine their comments to thread #69? Thank you.

We normally start with a brief introduction to our cancers – I’ll kick off. Ovarian cancer dx March 2017. Now on third-line treatment with a trial providing targeted and chemo drugs taken orally.

Hi Flippyflapper - I’m glad you decided to post. This uncertain time is horrible, but it helps if you have something to distract you, so a holiday might be just what you need. It’s also worth saying that, having been on these threads for a few months now, there have been plenty of people absolutely convinced they have cancer who turn out to have something else entirely. So one day at a time x

Born - it’s so good to hear from you! Glad you had a good outcome but it’s not surprising it’s all messing with your head. I hope the counselling helps.

Flyingarcher - sorry you’ve got this uncertainty with everything else going on. Crossing fingers it’s a routine follow-up for you

My liver ALT levels have gone up again so the oncologist is going to put me on steroids and pause the immunotherapy then try again once the ALT levels have calmed down. Grrrr! It’s so hard not to let my brain gallop on to the worst conclusions, but I’m trying!

Thank you @Toofaroutallmylife. Hope your uncertainty is bearable. It just makes one feel...mentally itchy is the nearest I can get to. Blasted liver levels. Fingers crossed that they decrease.

Just popping on to say hi to flippy flapper as i am also in the colon cancer club. Diagnosed last year at age 39 after a+e admission with abdominal pain. I had had anemia (had been referred on to gynaecologist for that) and a bit of bleeding which gp put down to piles but no other real symptoms. Mine was stage 3 at diagnosis and my surgeon thinks i had had it for at least two years. My gp was very shocked as i was too young. Great you've been referred on for colonoscopy. It is far more likely to be something other than cancer so fingers crossed you are only here for a short stay. You might find this interesting - Deborah James aka 'bowel babe' talking about her experience www.bbc.co.uk/programmes/m00057mc.

Hope your liver starts behaving toofar.

Hello all. I had a "high-risk anaesthesia" appointment yesterday, which was quite daunting, with percentage risks for this, that and the other. Realistically I know (as the nice consultant anaesthetist pointed out) that nothing is risk-free, but actually I don't want to know I have even 5% chance of dying during or after surgery!
Anyway, before I disappear for a bit, I wanted to say:
purpleunicorns hope the sodding fistula sods right off, and that your legs buck up a bit and you can get around with mobility aids;
TQ good luck with whatever they can do for brain metastases. And I hope your DDs are coming through exams well and will be able to give you lots of love and support;
flippyflapper so sorry you are having this anxious time; hope eventually the news is good;
Toofarout I don't understand the complexities of your liver issues but obviously it's worrying, so crossing my fingers it can be sorted out;
Flyingarcher hope the mammogram did not show anything too sinister; I'll be looking out for an update;
SnowsInWater eek, losing toenails does sound horrid. Keep those socks on and let's hope that, as another poster said, it's a very temporary issue.
And warm wishes to everyone else here.
This time tomorrow I'll be in hospital . . so I'm going to enjoy today as much as I can, it's my DP's birthday and we're planning to go to the Chelsea Physic Garden.

Best of luck tomorrow Bloodybridget and I hope you have a lovely day today with your DH xx

Bloodybridget. All best wishes for tomorrow.

Taytotots, thank you trying to get an appointment with my doctor is a nightmare another doctor said i would be reffered but ive been put under another doctor now so I really don't no.
How are you doing? I hope well.

Bloody I hope all goes well for you today

I have just received a letter with an appointment for gastrology in a clinic at a doctors for 28th June. So not only is it ages away im doubting I have been sent t9 right department. I have called doctors again to find out and yet again I can't speak to any doctors.

Sorry to moan, I'm really concerned and from what I've read up I should be sent for a colonoscpy

Flippy. The very last thing you need is confusion and uncertainty. It is bad enough waiting to find out without having to worry about whether the appointment is right. Not being ablke to soeak to someone who can clarify adds insult to injury. Hope you manage to get some answers

Good luck Bridget.

Hi lovely people. I hope you're all hanging in there. If you're in your 20s, 30s or 40s, Shine Cancer Support is running a survey to understand your experiences. We ran it for the first time 7 years ago and it helped shape our services. We are re-running to now to see if experiences have changed (hopefully for the better?!) but also so we can make a good case for what is important to younger adults. If you have 10 mins, we'd love it if you considered filling it out. We've got 3 x £25 Amazon gift cards to be won as a thank you! The link to the survey is here: shinecancersupport.typeform.com/to/ctPbT9

Also, if you haven't checked out Shine's work, please do. We'd love to get to know you better - we're nice people who have all had cancer and we run some great events, meet ups and Facebook groups. Feel free to message me if you'd like any specific info. Our website is shinecancersupport.org xx

Flippy - my elderly mother was found to be severely anaemic and they suspected she was losing blood from somewhere. (Mum was in early. stages of dementia. Not a reliable witness. Don't recall a stool sample.) She was referred first to Gastro for an endoscopy and then to Colo-Rectal for a colonoscopy. Could that be what they're doing with you? A lot of your symptoms seem to be gastric.

Both clear. They decided it was dietary and she was given supplements.

Thymeout- thank you for taking time to post that. I think you could be right, hopefully will get some awnswers then along old 4 weeks or so to wait.

Welcome to all the newbies and apologies to everyone else as I seem to have completely lost track of the thread with so many new posts
I'm currently in hospital with a DVT which is surprisingly painful, my leg is swollen from my thigh to my foot and I can't even wriggle my toes. Has anyone else had one? How long does it last for? I'm currently on injections to break the clots down and the doctor said it'll take a good few days to see any improvement

Flippy 4 weeks is a long time to wait with the fear and anxiety if it all! I would try to contact the doctor and find out about the colonoscopy. Good luck.

Shine - I have completed the survey.

purple. So sorry to hear about the dvt. This disease never stops does it. Always some new nasty surprise.

Oh purple that’s rotten - sounds like your banged up for the weekend

Speaking of which @tahitiitsawonderfulplace - how are you these days? (hope you don’t mind me being nosy)

Love to everyone here, especially TwitterQueen.

I've got a CT-PET scan first thing tomorrow, the first since my diagnosis, to see if my treatment is working. My boob is looking pretty dreadful at the moment, so I'm not terribly optimistic really. I've got a nice weekend planned visiting a friend for her 40th birthday party, so hopefully that will keep my mind off it.

bit of fun good luck with your scan. Glad you have something nice to look forward to afterwards.
Purple oh no! Hope the drugs work soon. I did have a dvt in my arm when i was on chemo but i think arm ones behave a bit differently. I think they told me about a week too for drugs to work.
Flippy that's weird. How cone you are not on the two week wait pathway. I would query if you manage to get hold of any gp. Is there a secretary number on the referral letter? If so give them a call for more info. I'm pretty good now thanks. Surgery and four months of chemo last year and all good so far. Touch wood! Review next week......

Taytotots- so glad your feeling good, i hope it continues for you.

I did ask when i called for the app as i had to make it, letter gave me details, apparently that's the earliest and no fast track noted. Its starnge as the clinic im going to is the same place you gp tp get babies weighed and midwife app.

I hope everyone that have appointmets they go well

Sorry to barge in on your thread, I'm not sure I'm eligible but I'm frightened and I don't want to worry DH because he's a real worrier.

I have had a pain in my left breast for 2.5 weeks now, it started off as a mild discomfort when taking my bra off and then has just got worse, I have a feeling as if I'm leaking milk but there's nothing coming out the nipple and I haven't breast fed for 2.5 years!
I finally went to the GP today who was lovely, she did an examination of both breasts and said the right is very glandular and there's ' a lot going on in there' so she can't be sure of what she is and isn't feeling and also she said she can feel a definable lump in the right breast as well (news to me, no pain or anything and I'd missed it while checking myself)

So I'm off to the breast clinic she's requested an appointment within 3 weeks.

Normally I'd be ok, but I'm right at the wall of being so stressed and overworked that I'm on the cusp of a breakdown I am going on holiday on Monday, it's meant to be a last ditch attempt to stop me ripping over the edge but now this is hanging over it.

I have huge breasts so checking is hard but I've always tried to notice changes in them.
I'm really scared - I've been so unwell and run down lately, I'm not sure I can cope.

Hi,
Namechanged for this.
I have found out today that it is almost certain that I have cervical and endometrial cancer. I am 59.
Biopsies of cervical and endometrial tissues have been taken, and I am now waiting for CT and MRI scans.
I'm finding it so difficult to take in, it feels like I'm acting in a play.
My partner is really supporive, but I can't stop thinking about the worst case scenario.
I haven't cried. I'm just numb.

Bugger. 2 newbies.
Bumble I don't have bc but I believe the figures are something like 9 out of 10 lumps will NOT be cancer and of those that are, at least another 9 out of 10 will lead to a successful outcome. You are in the best possible hands and will be OK if and when you need a plan. A few weeks won't make any difference to a successful outcome.

redspook that is indeed shit. You'll need to wait for the MDT outcomes, which take 2-3 weeks (Medical Decision Team), but there WILL be a plan and there WILL be treatment. There are lots of options out there.

I feel privileged to receive a response from you TQ, your support shines through this thread.
I have a very strong feeling that the cancer is advanced, and really hope that there's something they can do. The hospital is 2 hours away (North East), but I'm glad to be there rather than our local hospital which doesn't have a good reputation. The staff were amazing today.
We are not telling anyone including our two young adult sons) until we know what the future holds.
I hope that everyone awaiting tests gets better news.

I'm not posting much right now but just wanted to chip in - I'm just a 59 year old mum - and we're all in a shit situation, but thank you. You think things can't get any worse then you find out it's spread to the brain... I was dx at 57 with OC at stage 3c/4 and treatment (in the body) was proving successful. I'm not saying anything to the DDs until I get a plan in place.