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

988 replies

WhatWouldLeslieKnopeDo · 16/05/2017 00:50

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 Flowers

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 Star

The previous thread is here

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TwitterQueen1 · 09/10/2017 15:33

Hello all - and especially fellow OC patient Nicky

I have 3 DCs and although they're older (18, 20, 22) the thought of leaving them fills me utter horror. I provide the family home - their father has had a minimal involvement in their lives for years and years and has never provided any financial support, so I do worry about what would happen to them. They're very close though, so I hope they would stay together.

When I finish cycle 6 (in three weeks' time!) I will go onto Bevacizumab alone for a year [gulp]. tbh I'm glad - I'm getting a whole year of chemo which has surely got to pulverise that OC into dust...

PlayOnWurtz · 10/10/2017 08:25

Hi all I've been directed over here from chat. I went to my gp yesterday after having bloody discharge from one breast. On examination by my gp she wasn't overly concerned but did feel an area of hardened tissue - I have previòusly had mastitis and it could be scar tissue from that - so she's referred me to the breast clinic and asked for swabs I'll be dropping the swab in this morning.

Well the breast clinic rang this morning and I'm in for Monday afternoon. I'm utterly nervous to say the least and surprised at the speed they've got me in at, in fact the speed they've done this at is making me more nervous!!!

Wishing you all well

WhatWouldLeslieKnopeDo · 10/10/2017 08:49

Good morning everyone

Flowers to those having to have difficult conversations with children, and the worries about their future. I can only imagne how painful it must be.

Headofthehive I hope you find it helpful

Twitter is that a year from when you switch to just bevacizumab or a year from when you started chemo? Either way I’m glad they’re giving it a good thrashing!

Welcome PlayOnWurtz. I’m sorry you’ve got this worry. Try not to read anything into the timing of the appointment. Most (all?) breast clinic referrals are done under the two week rule. It’s not because they think it’s cancer, but because it could be cancer. It’s better to refer everyone quickly to rule it out than to have the small number who do have cancer slip through the cracks. Fingers very firmly crossed for you on Monday Flowers I’ve got bowel cancer so not much use here, but I’m sure one of the others can advise on what to expect at the clinic :)

royal how are you getting on?

Wombat good luck with your tests today Flowers

mrsrhod have you managed to sort out your appointments? Not that it’s your job! Hmm

TheFarSide have you ad any improvement in your symptoms? I hope the nurse was able to help. Do you know when you’ll be starting treatment?

eatyourveg I hope you are recovering well Flowers do you have an appointment yet for your results?

All fine here. I went to the gym yesterday. I haven’t been able to go for a while as my chest has been iffy from my cold, which seems to be finally clearing up... bloods today and hopefully chemo on Thursday!

I’m thinking of chewing and her family, and sending love to anyone who needs it Flowers

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eatyourveg · 10/10/2017 09:46

Hi Leslie am now week 2 post op and went out yesterday for a walk around the block. Not much peace and quiet at home ds1 is here with post grad freshers flue, ds2 (asd) has mh difficulties and various people from his crisis team were here for much of yesterday, thankfully ds3 is 300 miles away but seems to be happy (despite Wales getting knocked out of the world cup last night)and settled into uni. dh went back to work yesterday but has decided it is easier if he works from home for the rest of the week.

The histology report took 18 days to get written up last time so as they have taken a lot more out this time I am not expecting to hear anything for another week. I will give them a ring next week as last time they took 6 weeks to call me in to tell me my ovaries were dodgy. I had wrongly assumed then that no news was good news. This time I have done my homework, know the possible outcomes and what to ask and will be ready for whatever comes.

Sending out Flowers Brew Wine Biscuit Cake to everyone on the thread and to all those lurking for today's world mental health day. Whilst none of us can change each other's histology, mn is great in being somewhere to draw strength from when the road gets bumpy and somewhere where you know there will always be someone out there to hold hands with. :)

WhatWouldLeslieKnopeDo · 10/10/2017 11:42

eatyourveg well done on getting out of the house. I hope that has given you a little boost :) but sorry about everything else. Is DS2 OK? I hope DS1 recovers from Freshers flu quickly, and doesn’t pass it on to the rest of you! I didn’t even know the World Cup was happening Blush but sorry about Wales!

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fluffywhitekittens · 10/10/2017 14:01

Totally agree about the support and hand holding here x

Wombat22 · 10/10/2017 19:29

Hello everyone.
Thanks Leslie The tests went ok today. They obviously didn't tell me anything. I'm having PET CT tomorrow morning.

I hope things are ok for you Play Thanks

WhatWouldLeslieKnopeDo · 10/10/2017 21:08

Wombat I’m glad the tests went OK. What did you have to do?

Medical folk have excellent poker faces. I wonder if that’s part of the interview process Grin

Good luck for tomorrow’s scan Flowers

Waving to all

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WhatWouldLeslieKnopeDo · 11/10/2017 11:31

I saw this Readly two month free trial in the MSE newsletter and thought it might be of interest. It’s an app where you can download magazines. I’m looking forward to trying it out at chemo tomorrow :)

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nickyplustwo · 11/10/2017 12:35

It's a rainy day here, so I thought I'd send some Flowers to everyone to bring some colour to the day - especially for everyone awaiting results. Waiting is hard ..! x

mrsrhodgilbert · 11/10/2017 13:51

Rainy day here too now, dh has just gone for a run. I could drive after him and collect him or I could stay in the warm ....

I have finally managed to get an appt next Wednesday for a hysteroscopy 4.5 weeks after first asking and missing the two week referral by a mile. That was shockingly bad admin and the first time I've experienced it really. I hope the result come through quickly.

royalmama · 11/10/2017 16:34

About time mrs! I hope as you say they don't keep you waiting for the results.
Leslie, thanks for asking. I'm keeping myself occupied until my biopsy.
Waving to everyone else and thinking very much of chewing

TwitterQueen1 · 11/10/2017 17:34

Back from Day 1 cycle 6. They nearly sent me home again as neuts low. I thought 1.1 was OK but they're not happy. I had the chemo anyway but then got a phone call late this pm to say I need to go back and have injections for 3 days... such a pain as the traffic is so bad. However, hopefully it will make me feel better.

Mrs stay in the warm
Also thinking of Chewing

WhatWouldLeslieKnopeDo · 11/10/2017 19:11

Rainy here too! Just waiting for my pre chemo takeaway pizza to arrive...

nicky Flowers for you too. How are you today?

mrsrhod I’m glad you’ve finally got an appointment, but sorry it’s taken so long, and so much effort on your part!

royal I’m glad you’re keeping busy. Is it this week? Sorry I’ve lost track of days Blush the other day I woke up and I couldn’t work out what day it was at all. It really freaked me out Confused

Twitter I’m glad chemo went ahead in the end. That’s a pain about the injections. Could they not give you them to do at home?

chewing is never far from my mind either Flowers

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TwitterQueen1 · 11/10/2017 19:34

leslie yes, I could do them at home myself, except I couldn't.... I am one of THOSE people who simply cannot even attempt it.

I had my ears pierced at 18 (many, many moons ago), and had to give up after 8 weeks. I just couldn't put the earring into my ear, through the hole, without fainting. This is why I find cannulas / lines distressing.

It's not a pain thing. My ears were perfectly fine. You can't really say that cannulas are painful - it really is just a 'small scratch'. It's just something in my head that triggers major wobbles and faintiness. My DDs gave me a lovely seascape painting for my birthday in August and I put myself in the picture when I have the cannula. I'm fine once it's in and working. Please someone tell me I'm not alone in being a total wuss about this! Blush Sad

I am getting better/ harder/ more used to it

FlippyNeck · 12/10/2017 11:13

Hello, I always lurk and keep up, but I haven’t had much to add. I’m so sorry to hear about Chewing, and to hear about the woes of the other lacies too. Such a lot to cope with for so many.

Leslie, as ever a gold star and a massive gentle hug for keeping this thread going.

MrsRhod and Royal, fuckity fuck, I don’t know what to say, apart from I hope you get good results from your tests and quickly. NHS admin is a law unto itself.

As an aside, I have suffered with horrendous bleeding for over a year, I had a rubbish gynae for a while who misdiagnosed me, it’s taken ages to get a proper diagnosis – fibroids – and a referral for embolisation. The last, slightly better, gynae I saw only offered me a hysterectomy, until I pushed (again) for an alternative. I am not up for any more major surgery unless absolutely necessary, so hopefully the embolisation will be successful.

TheFarSide, Wombat, Nicky and any other new lacies – hello. I’m sorry you’re joining, but you're in good company.

I was feeling somewhat celebratory yesterday, I’ve had my first normal blood results since January. I still have to keep taking iron, vit D, calcium, etc, but that was some good news. For a while it looked like Herceptin was causing heart problems, but everything is fine there. I had a bone scan and chest x-ray recently too, and nothing detected on either of them.

I veer between wild optimism and hopeless despair about recurrence. I’ve been taking part in a Maggie’s Where Now course, which has been good, and I’ve signed up for a mindfulness programme. I don’t suppose the Fear will ever go. I’m coming up to my first annual mammogram and check up, exactly a year after I was diagnosed. It’s not a nice feeling. But I feel good at the moment, I’ve got some real treats to look forward to, and I’m completely in love with my recently acquired cat!

Twitter, would you be able to have a port or a line? Apologies if you’ve already considered and dismissed it, but I was so glad I had a PICC during chemo.

Love and hugs and Flowers to everyone.

WhatWouldLeslieKnopeDo · 12/10/2017 18:12

Oh yes Twitter sorry I’d been so focused on the inconvenience of having to travel there I’d completely forgotten how squeamish you are! Blush I hope today’s injection went OK and doesn’t make you feel unwell Flowers

Flippy that’s good news about your test results Star I’m sorry about the worry though. Hopefully the course will help a bit. I have some friends who are still highly anxious many years on from diagnosis and others who seem to get back to “normal” quite quickly. I guess it depends on all sorts of factors. It’s especially understandable for you to be fearful Flowers I’m glad your cat is cheering you up. How is DS?

Chemo today so feeling a bit icky!

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Wombat22 · 12/10/2017 18:30

Hello all
Leslie The tests were breathing related. I had to sit in a glass cube and doing some blowing into a mouth piece. Fast, then slow, inhale quick, blow out quick. Pretty average really. Then I had to do a walk shuttle test. It was a little embarrassing as it was done in a main corridor. Walk between 2 cones 20 yards apart and reach the end before a bleep went off. It got faster every so often. I do not have trouble with walking and I am a naturally fast walker. It started so slowly that I was taking 'fairy steps' to stop myself walking quickly. 12 minutes! Grin

Twitter I could not inject myself. I am needle phobic which is really a nuisance because I have tricky veins. Nobody has ever managed to get blood from my left arm and my right isn't much better. Apparently, my veins are not bouncy and they have to use 'baby needles'. My arm is a bit of a mess after 4 attempts to get a canula in before the scan yesterday. Grim.

Wombat22 · 12/10/2017 18:39

Leslie I hope the chemo effect subsides quickly Thanks

WhatWouldLeslieKnopeDo · 12/10/2017 19:13

I’m glad you passed the bleep test with flying colours Grin annoying about the cannula though. I have the same with every scan. My veins are really hard now and the needle just bounces off. Thankfully I have a port they use for blood tests and chemo.

Thank you. I’m already feeling a bit better :)

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WhatWouldLeslieKnopeDo · 12/10/2017 19:21

I hit a bit of a wall today. Even the chemo unit staff don’t seem to understand cancer. It even says on my notes that it’s palliative treatment. But I’m always getting comments about how I’ll be better soon, it takes time etc etc. On the one hand I don't really care. I know they mean well, and I’ve accepted my situation as best I can. But on the other it annoys me because if the chemo nurses can’t even understand then what hope do we have?! Confused

I was a bit blunt with a HCA the other day. She asked me if I had children and I said no. Then asked me if I wanted them. To which the answer is yes so much that it hurts. But I just shrugged and pretended I didn’t really like children. She kept asking questions, meant nicely, but eventually I had to tell her it was incurable and then she felt really bad. I wish there was some sort of code on their list of patients. Though tbh unless I was absolutely certain of someone’s prognosis I’d be very very careful about what I said. It seems like topics such as having children would be best avoided given that some cancers and/or treatments make that impossible!

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WhatWouldLeslieKnopeDo · 12/10/2017 19:24

I hope that wasn’t insensitive. I’d love children. But I’m also very grateful I don’t have them as it would make this so much harder. So I’m not complaining about that. It’s more the inappropriate comments/questions.

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Wombat22 · 12/10/2017 19:29

You weren't being insensitive, but it sounds like the nurse was.Thanks
I wouldn't dream of asking any person who didn't have children if they wanted them. It seems such an intrusive question, especially when the person is having treatment for cancer. Very inappropriate imo.

WhatWouldLeslieKnopeDo · 12/10/2017 20:07

She’s really nice and obviously meant well/was just making conversation. But it seems such a silly thing to ask anyone let alone cancer patients as you say. It’d be safer to stick to weather/news/telly that sort of thing. I might mention it to the Macmillan lady. I usually just laugh it off, but if someone was newly diagnosed it could be really upsetting. I wouldn’t mind so much but it seems to be nearly every member of staff Confused

There was a worse nurse when I had my surgery a few months. She did the standard pregnancy test and said wouldn’t it be great if it was positive Confused I just laughed nervously then she started on about why didn’t I want children and how maybe in a few years time I would change my mind Hmm

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TwitterQueen1 · 12/10/2017 20:26

Leslie I'm sorry you had such insensitive treatment. That is really bad. And all the inane comments about getting better soon... Angry on your behalf. I had the stupid comments when I was first diagnosed but there is no excuse in your case. Don't the nurses know you by now? All the nurses at RBH know me - they know my hands shake so much they can only fill cups half full and I can't pour squash myself.

Good question about whether the Bevacizumab is counted from Cycle 1 or from next month. I don't know - 36 weeks or 54. I'll ask.

Wombat I completely sympathise. I think you have it much worse than me so have some Flowers. I get it. I don't mind injections so much because they don't last very long and I just don't look.Today's jab was fine and I'm sure I feel better already but no-one has contacted me about tomorrow or Saturday so I'm just hoping the district nurse will turn up at some time.

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