Roll up, roll up and join the lacies for CANCER SUPPORT THREAD 59 - anyone with cancer is welcome (and those awaiting test results)

[WhatWouldLeslieKnopeDo]

Hello everyone,

This is the cancer support thread, which has been running for many years under different names. Most posters have breast cancer, but various other cancers are represented too! Whatever cancer you have, feel free to join us. We also welcome those who are awaiting test results to find out whether or not they have cancer. We know how difficult the waiting can be and we are happy to hold your hand. Hopefully you won't need to join us permanently

Feel free to ask any questions. There will usually be someone who knows the answer or will know where you can find it.

Whatever you do, stay away from Google!

You can post anything you like here. We don't mind swearing or complaining or angry ranting. We aren't brave or inspirational and you don't need to be either. Nobody signed up for this, but we support each other as best we can

The previous thread is here

Leslie am having fun seeing you avoiding small children and pregnant women.

Did you carry a bell and ring it shouting 'unclean! unclean!', running down the high street in a sackcloth?

And at the same time, wearing a high vis radiation jacket?

What excuses did you come up with? "No sorry, I'm radioactive. .I can't possible open the door to take delivery of this parcel."

"I'm radioactive. If I were you I'd run away....."

Oh dear, brain is alternate reality mode, helped by red wine....

Haha thankfully I didn’t meet any children or pregnant women during my radioactive 24 hours. There’s even a special loo in the PET scan department only for radioactive patients. It had a big yellow warning sign on the panel behind the loo warning maintenance people not to open it without protection

They keep the radioactive injection in a special metal syringe which is stored in a lead case. They wheel that in and then take the syringe out. I needed a plaster and the man had to apply it using long handled tongs

Lead syringe. It looks like something out of Star Wars!

Oh bugger I hope no one on here is scared of needles if so please tell me and I’ll report that and have it deleted!

TheFarSide I hope I haven’t scared you... PET scans are very similar to CT, apart from the radioactive injection. You have to sit as still as possible for about half an hour afterwards so take a good book or something :)

You have to laugh or cry really, don't you?

Indeed. Hospitals seem to provide plenty of laughter opportunities. Years back, between colonoscopy and cancer diagnosis, I was sent for a blood test. My dad came with me. We were waiting opposite a door for the vasectomy clinic. Then a nurse came along with a trolley of various supplies. Including a huge pair of scissors

PS I was at “your” hospital at the weekend to visit to the museum. It was interesting and well worth a visit if you’re not squeamish. Though it’s only open two afternoons a month!

Gosh! I didn't even know we had a hospital museum, and my experiences stretch back 22 years with newborn DC with club foot, another with clicky hip, ex DH blood cancer, my cancer, stepdad cancer, mum all kinds of everything... Lots of rural life stuff though!

Tbh, not sure I want to spend any more time there on a voluntary basis...

I can see why! are they all OK now?

OMFG ... RADIOACTIVE ??? So, that would be a good time to go and kiss all my old enemies?

Part of me is tearful and terrified, but there is definitely a part that is also fascinated by and interested in what is to come.

On the plus side, I get to keep my fanjo. In my head I had sacrificed it in order to live. With a bit of luck, I can keep both it and my life.

Just got off the phone to my 87 year old dad. It breaks my heart to hear him sounding so worried, but we had a long chat and I told him to phone me anytime day or night if he's feeling scared (he doesn't live nearby).

DH has taken on a strong and bossy persona ie "EAT THIS, I DON'T CARE IF YOU'RE NOT HUNGRY". Not like him at all, but it really helps that he and others around me are not letting me sink into despair.

to all

Oops sorry! Yes it’s a radioactive glucose. Cancerous cells use more so then they glow on the scan. That’s why you have to sit still beforehand, so that your muscles don’t take up lots of glucose and interfere.

It’s quite cool really, though it would be better if we didn’t need it.

I’m sorry about your dad. It’s tough knowing you’re causing loved ones to worry, even though it’s obviously not deliberate

I’m glad your DH is taking care of you :) I think it helps people to cope if they feel they can do something to help

Just popping in to say hi to chewing . I do hope you're being well looked after and the radiatherapy brings a bit of relief, although it's a bit crap immediately after for a day or 2 I think? Shout loudly about help and support, also pain relief etc if you need it. Hugs and

Sending strength and positivity to all the Lacies x

Thank you 1234 :) and echoing your sentiments to chewing

I hope everyone is having a good Friday!

Had my face to face with the consultant yesterday just to summarise all results so far. As ever, more bad news I hadn't been aware of - an aortic lymph node is involved, in addition to pelvic lymph nodes. I also saw The Tumour scan pics: it's bigger than I thought, 6cm x 3cm. Apparently I am highly symptomatic: pain in my vulva, groin, buttock and leg are all attributable to the tumour, not to mention UTI symptoms.

Yesterday evening I had further frightening experiences: I had a period-like bleed, then sat chatting on the phone for 3 hours to a friend while bursting for a pee; when I then went and sat on the loo, I couldn't pass urine. I ended up ringing 111, who rang my gynae team and said I could go in to A&E if necessary, which was actually the last thing I wanted to do. Gradually, after several visits to the loo, I managed to get all the urine out but only by actually standing up and straddling the toilet bowl. I've been to get antibiotics today, and have collected a load of pain killers plus some antidepressants prescribed by the consultant to help me through the next few weeks.

I've really had some amazing, kind support from the NHS, but I'm feeling so down at the moment. Please tell me I'll feel better at some point - I mean mentally.

Oh TheFarSide what a lot to take in! I’m sorry it wasn’t more cheering news. Was the consultant able to give any indication of what their treatment plan is or when it will begin? You will feel better mentally. When I start to feel down I remind myself that all thoughts and feelings are fleeting. My thoughts and feelings are not me, and I am not them. I suppose it’s the age old MN mantra: this too shall pass. Every other feeling you have ever felt has passed, so this is no different. But I know it’s a lot simpler to rationalise when you’re not sinking into despair.

I’m glad the consultant is taking your mental health seriously. I hope the antidepressants get to work quickly. In the meantime, be as gentle as possible with yourself. You are in shock and you are also dealing with some very unpleasant physical symptoms. I hope the antibiotics help with the urine issues, and I know it’s grim heading to A&E especially at the weekend, but please do seek further help if you need to

I meant to say, it sounds very trite but try and distract yourself as much as possible. Nice treats or even just a really boring but absorbing project. Anything to try and stop your mind getting trapped in a cycle of panic.

Me again. I find mindfulness helpful, but I know it’s not to everyone’s taste. I use Headspace and they do a free trial I believe.

Thank you again Leslie. Everything you are saying makes perfect sense. I have always been prone to spiralling into black moods, even before this. But then I get myself out of them, and life goes on.

I am interested in the concept of mindfulness, although right now being aware of my body means focusing on the constant trickle of discharge from my vagina . Tomorrow I'm hoping to go to my first Quaker meeting: I'm just looking for ways of coping mentally. I'm actually agnostic but am feeling the absence of spirituality in my life.

If I could get my sense of humour back, that would help.

Thank you for your encouraging words. I am aware your own situation is no picnic.

Far so sorry to hear your news. I have not tried mindfulness myself yet, but am considering it.

Do you have support at home? I hope you're not on your own dealing with this. It's such a scary journey - it becomes less so when you know what's going to happen with treatment.

I looked into Quakerism (is that the correct term?) a while back. I’m an agnostic/atheist though was raised a Catholic. I’ve also often felt a lack of spirituality, though oddly my cancer has helped with that! I hope that you find what you are looking for at tomorrow’s meeting. And I hope your sense of humour returns soon. Mine has got me through some dark moments, and I’m sure yours will too :)

Twitter I would definitely recommend it :)

TwitterQ I have a lovely supportive DH, and my friends have really stepped up - I feel loved and cared for. I have a wonderful easy life (I retired early) and no financial worries. I don't have any children to worry about either. I have achieved most of my main life goals, and have often said if I had to die tomorrow I would accept it and have no regrets.

Ha!

That was before I was diagnosed with cancer.

How flippant I was! I've suddenly discovered I badly want to go on living. I CERTAINLY want to be around long enough to see Donald Trump deposed!

Far - there's always something to fight for!

Hello all, it's been a while since I posted. I've been trying to get on with life but I do read at least once a week. I've hit a bit of a blip, I don't think anyone else has experienced this but it's worth asking.

I was on tamoxifen for three years post surgery and this year at the age of 53 I was told I must be post menopausal and switched to anastrazole. Ive been on this for nearly four months and I can honestly say it's been dreadful. I'm in such pain every day, joints and muscles in my legs and feet plus a range of other side effects. However, I
Last Sunday I started to bleed which was completely out of the blue and if I'm post menopausal shouldn't happen.

I spoke to the GP on Monday morning who has arranged a pelvic scan, the first thought being there must be something untoward happening in my uterus. The more I think about how I've felt in the last week the more I think I've had a period. I think the tamoxifen shut down my ovaries but now they've woken up again. Effectively this means that for nearly four months I've been on the wrong medication and I'm no longer being properly protected. Obviously I have to wait for the scan to prove this but then what? Has anyone else experienced this?

If they suggest a return to tamoxifen I think I'll be quite happy although it probably will mean going through all the initial side effects again. I'm very confused and very worried.

There are lots of new names here now. It's a great place and I hope you're getting some comfort from it. Leslie, as ever you are doing a grand job, I hope you're still feeling better. Love to all.

mrsrhod I’m sorry you have this new worry. I can’t advise at all, but I am glad your GP is taking it seriously. Do you have an appointment for the scan? I have my fingers firmly crossed for you and hopefully someone with more useful experience will be along soon

I have no knowledge of this mrshod but in my experience unexplained postmenopausal bleeding is investigated very quickly - I note you think you might not be menopausal, but it sounds like they are treating it as a priority anyway, so hopefully you'll get quick answers and will be able to put your mind at rest.