Meet the Other Phone. Only the apps you allow.

Meet the Other Phone.
Only the apps you allow.

Buy now

Please or to access all these features

General health

Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional.

We're not that old but we're losing our hair... Do you still need us, now we're sixty four?! - CANCER SUPPORT THREAD 64

999 replies

WhatWouldLeslieKnopeDo · 11/08/2018 13:43

Me again. Even attempted a vaguely witty title. Hopefully not in poor taste Blush

If you have cancer, or you're waiting for test results to see if you do, then please pull up a chair and introduce yourself!

Some of us have been here for ages and others are just going through the testing process now, so there's bound to be someone who understands what you are going through.

Whether you are a newbie or an oldie it can be helpful to post a quick recap of your diagnosis/treatment to date just so that other posters can keep track without having to search previous threads :)

If you have a relative who have cancer then there is a thread just for you in the Life limiting illness topic, with lots of others who are sadly in a similar boat and able to support each other. Other threads in that topic might also be of interest. We wish you and your loved one all the best Flowers

Below are some links that might be useful. But feel free to ask any questions at all. Nothing is off limits here.

Cancer patients are eligible for a medical exemption card for prescription charges - there is some information on the NHS Business Authority website or you should be able to get the form from your pharmacy or GP surgery

You can find information about the individual chemo drugs or regimes on the Macmillan website here

See if there is a Look Good, Feel Better workshop near you - they are especially useful for advice on disguising missing eyebrows and eyelashes

Ellie's Friends
Something to look forward to
Cancer Research UK
CRUK science blog - this is interesting and very useful for getting the facts behind any big cancer headlines
Breast cancer care
Shine cancer support (for people in their 20s, 30s or 40s with cancer)
NHS What do cancer stages and grades mean?
Macmillan staging and grading (this is in the breast cancer section but applicable to many other cancers too)
CRUK stages of cancer
CRUK cancer grading
Don't forget the kids

OP posts:
Thread gallery
22
addlebrained · 18/09/2018 08:26

Sorry to hear you’re not well Leslie - I also have a slight cold but nothing that makes me anything other than whingy really Grin - hope you feel better soon

Good luck today purple

noodles that’s so funny I just found a sewing machine in our boxes stores things and remember buying it (small machine, on sale) but have never actually used it Blush - am absolutely mortified at the money I have wasted over the years and feel I must immediately sew something to remedy this but don’t have time

Pandoraslastchance · 18/09/2018 10:11

I'll be honest I didn't look my best last night as my port is bruised from where they kept attempting to get blood and access and the port scars were visible plus I'm giving Casper a run for his money on his skin colour. But I just felt so uncomfortable and I literally ran out when the meeting was over. I'll stick to my other group next week as they talked to me(even though it was my first week there) and showed me round etc and were really hospitable but they were more of an older group.

noodles my youngest is 4 in December and likes nothing more than stripping off naked. We call her Ferrari as that can be her stripper name Grin it's a nightmare when you are against the clock and as soon as you get a t-shirt on her then her knickers are on the floor.

I'm laying on the bathroom floor as I simply cannot run up and down the stairs anymore. I've got my duvet and pillows and phone charger. Feeling a bit mean as my oh came up for a wee earlier but found me asleep for the first time since midnight so went and peed in the garden instead of waking me. Must be true love Blush

Lesley fentanyl patches should really help with the pain. It's one less thing to think about.

Namechangeforthiscancershit · 18/09/2018 14:14

Feeling a bit mean as my oh came up for a wee earlier but found me asleep for the first time since midnight so went and peed in the garden instead of waking me. Must be true love blush

Awwwww he’s a keeper!

purpleunicorns · 18/09/2018 14:25

I have images in my head of the cleaner coming through the front door and you legging it out of the back door TQ Grin Any word on your scan results yet?

Pandora 8lb is fantastic Shock seriously well done! And your OH sounds absolutely lovely bless him. It really does help having someone around to look after you

Glad to enjoyed your weekend Noodles you definitely deserve it, hopefully your bag of drugs will help and you won't feel as bad after your next chemo

Leslie you are anything but a wimp. The slightest cough or sneeze has me feeling rubbish too. You enjoy your new mattress and order more shoes until you're feeling a bit better Grin

I had the stents put it about 11:00 and feel much better already although that might just be all the painkillers they've stuffed me with

WhatWouldLeslieKnopeDo · 18/09/2018 14:50

purple I'm glad they've done it, and that you're feeling better. Enjoy the painkillers! Flowers

addle I hope your cold clears up quickly :)

Pandora I hope you've managed to get some rest and are feeling a bit stronger. Lying on the bathroom floor doesn't sound good at all Flowers

I'm spluttering away, but fine otherwise. Glad I've got knitting and telly to distract me :)

OP posts:
TwitterQueen1 · 18/09/2018 15:58

Hi Purple my consultant appt is Monday so I will get the results then and presumably a plan for next steps.. I didn't quite leg it Grin. I had the usual 10 minutes of chat and then waved my youngest off to her 2nd year at uni.
Glad you've got the stents in OK. Leslie I hope you've got Lemsips to hand - I swear by them for any cold!

Very windy here last night - my bedroom door kept creaking and woke me up a couple of times. One of the branches on my Robinia tree broke and since it overhangs the neighbour we (middle DD & I) cut it down, along with a couple of others and DD has put them in the car. A trip to the dump is required tomorrow!

Pandora great news re the weight! It's an encouraging start.

Bake Off tonight!

Tahitiitsamagicalplace · 18/09/2018 18:34

Hi,
Hope you don't mind me posting. I've been reading this thread over the past week or so. I haven't been diagnosed with anything yet, but I had a biopsy today on lymph nodes and then I STUPIDLY googled (why??!!!!) and basically I have really hard, swollen and abnormal supraclavicular lymph nodes on the left side and anything that came up on Google for that was cancer.
I've already had a CT scan and blood tests and a camera down my throat but I don't know the results.
I won't lie, I'm terrified, and I just want to know. I don't quite know what to do with myself until I get the results.

Anyway, reading this thread has been helpful because today when I was scared while getting the biopsy (needle phobia - I'm a giant wuss basically!) I thought about you all who just show up and get tough medical shit done and don't cry about it. Maybe you do of course, but that's the impression I get from reading this thread.
Anyway, hi Smile

WhatWouldLeslieKnopeDo · 18/09/2018 19:04

TQ good job DD was there to help! :) enjoy Bake Off Cake

Tahiti welcome, but sorry that you're here Flowers do you know when you will get the results of the tests? Hopefully there is an innocent explanation for your symptoms.

OP posts:
Namechangeforthiscancershit · 18/09/2018 19:41

Maybe you do of course, but that's the impression I get from reading this thread

Oh lovely, we all cry sometimes!

I am not bothered by needles personally but my mum is really phobic so I am really aware of how difficult it is. Are you really honest with the hospital about the needle thing? They can help. Don’t think you’re making a fuss though. I can have 80 blood tests and it’s less traumatic than my mum having 1. So be a bit kinder to yourself.

Google will tell you that you have cancer all the time. Honestly it is very much all roads lead to cancer. That’s not real life. Focus on getting through the tests and don’t race ahead to any conclusions.

In my pre cancer days I had a week where I had nose bleeds and I put my symptoms into NHS symptom checker which told me I had a type of leukaemia only occurring in children or I had overused cocaine. I was a 25 year old who had never gone near drugs. So after that the only people I listen to are healthcare professionals and Dr Google can do one!

Lots of Flowers for you because waiting to hear what’s going on is bloody awful.

iVampire · 18/09/2018 20:11

Hi everyone!

This thread has been so busy, and I’ve caught up with a fair amount of it.

I continue stable on treatment, and only need to be seen at 3-monthly intervals. Fingers crossed it stays that way! But one weird moment was when I realised after my last appointment that I was walking out of the hospital with approx £3k worth of drugs about my person.

The excellent news however is that the investigations on my DMum have come back fine! Nothing in bones or liver, nothing sinister in GI tract. She has some diverticulosis, and that will be managed by her GP.

So all fairly calm and ‘normal’ here

PS: everything comes up as ‘leukaemia’ at the moment, it’s blood cancer awareness month!

TwitterQueen1 · 18/09/2018 21:35

Tahiti Do not for a single moment believe that we are all absolutely Ok with the tests and stuff. Honestly, beforehand, we're all just like you for the first time!

I will say though, that I was amazed at how all the hospital staff deal with the fear and the thought of pain. Note I say thought. I had a pleural effusion and was shit scared at having to have the fluid drained from my lung cavity, plus the numerous biopsies on my abdo. I was so scared but the most painful bit was the local anaesthetic, which was just a scratch. I did cry after the lung stuff but it was through relief.

I've had drainage tubes inserted into my abdo several times. The last time I just walked back to the ward because I really didn't need a wheelchair.

I hate needles - but I just don't look. I had a total meltdown one day on the chemo ward because of the incessant cannulas. You are not alone. It's OK to be scared and to cry. We are all with you on that!

purpleunicorns · 18/09/2018 22:25

I'll have to catch up with Bake Off when I get home, as much as I like it I'm not paying £9.99 to watch it in hospital Grin

Tahiti we have ALL felt exactly like you do now at some point so you are not a wuss in the slightest! Hopefully you won't be here for long but for now pull up a chair Smile and well done for having the biopsy, I'm still a complete wuss when it comes to needles but luckily I haven't needed a biopsy yet

Tahitiitsamagicalplace · 18/09/2018 23:09

You're all lovely, thank you.

Leslieknope I am not sure when I'll get the results. They will phone me. They said some will take less than a week and some will take a bit longer than a week but I should know by next Tuesday what it's looking like.

Twitter I don't look either. Spent a lot of time talking to doctors with my eyes shut lately! And all the doctors, nurses and staff have been so friendly, caring and sympathetic. Amazing people.

Name I am laying off Google now. I was doing so well avoiding it for days, but the temptation got too much.

Thanks again. Hope everyone has a good night X

AimlesslyPurposeful · 19/09/2018 00:21

Tahiti - I just want to echo what others have said that everything from a painful stubbed toe to earache will have Google telling you it’s cancer! I wouldn’t be at all surprised if everyone working at Google has shares in anti-anxiety medication.

Wishing you the very best of luck for next Tuesday x

Purple - Sorry to read you’re still in hospital. Hopefully you’ve got visitors bringing you lots of cake in! Cake

Pandora - Your weight loss is fantastic. Please don’t let looks from others bother you. Making you feel uncomfortable says far more about the person staring than the one being stared at. Sod them - You lost 8lbs! Grin

Nervous of scrolling up in case I lose what I’ve written but whoever it was that bought a sewing machine in a sale and it’s still in the box - Snap! I bought some pretty fabric and tried to make my friends DD a book bag. It didn’t go well as books generally aren’t a wonky triangular shape. Straight back in the box! Would now like to try and make my dogs some bandanas so might have another go when I’m feeling brave.

The crochet bunny is fabulous! Looks like something you’d spot in the baby section of The White Company.

noodles44 · 19/09/2018 06:38

Addled I have had my sewing machine for around 3 years. I got to the stage of booking lessons to use it (am a total novice) around work shifts & when the kids were not at mine, but my ex stopped having the kids so it got put off (& off)... I have some gorgeous material to make curtains with (not at all ambitious) so will look into sewing lessons again when able. Now I live back in the area by the school, childcare will be way easier to organise if needed.

purple glad the stents op went well and you are feeling better for it. When do you get to go home? Given the speed they sent you out before (& the speed you returned to hospital) are they being a bit more watchful of you before they send you on your way this time?!

Lesley I hope your cold has cleared up. I like a hot Ribena & slather myself in Vicks if coldy. I am finding my lack of nose hair a right pain, any liquid in my nose just drips out (sorry tmi) which probably would have stayed put before. Am just carrying tissues, but after my previous nosebleeds I have a mild panic at the drips! Fortunately no more of those tho so far Grin

pandora the bed on the bathroom floor sounds not that comfy, although well done for managing some zzz's there! Your hubby def sounds like a keeper for not disturbing you! I hope you made it to a bed & slept again later. We used to describe dressing my youngest as a baby/toddler as trying to dress a bag of frogs she squirmed so much. My eldest never did this and always held out the appropriate arm, leg etc but dressing the youngest was more like a challenge on the generation game from day one!

Both of mine got upset yesterday. They were tired which didn't help. The eldest doesn't want me to have an op and doesn't want me to have any more nasty medicine that makes me poorly. The youngest said she was cross with me for having to lose my hair and she wanted it to grow back now as she didn't really like it. She has asked me to wear the wig always for school runs which I do, but I am usually bald at home or on dog walks etc. The school have been brilliant for my eldest as have assigned her a mentor teacher who sees her once a week regarding any worries and to talk if she needs. Although I am pleased it seems that she is talking to me about it and not bottling it up. I think I talked them around ok.

TQ I love watching Bake off. I have been watching old series of it when unable to sleep on Netflix as didn't get into it until it had been on for a while. I enjoy cooking/recipe perusing when I get some downtime, although I am not good at cakes. I do a mean spicy corn bread as an alternative from the river cottage cookbook which is delicious with soup.

Did you hear back yet on your revised PIP yet TQ? I hope it is not delayed too much longer. I have critical illness cover which took me a while to complete as I just felt sick every time I read the form. My sister in law went through it with me on the bank holiday weekend and I got it sent off right away and the consultants part was handed in too the next day. Not sure how long I will be waiting for to hear. I insured a sum and depending on how critical they deem me, depends on what percentage of that sum I get paid. The initial call taker said it would probably be around 10% for a lumpectomy, so will wait and see. It feels a lot more than a lumpectomy with 7 rounds of chemo, plus radiation etc afterwards & I don't know yet that they will def just remove the lump & not the breast either. Am sure that will be my worst case scenario payment wise so not panicking yet, I am still being paid my usual wage from work thankfully.

tahiti I do not have needle anxiety, but have a PICC line fitted to avoid constant injections. I cannot bear to watch it be cleaned as it makes me cringe. There have been tears from me too, you are not alone. Hopefully the tests will come back with good news and you will not be here too long. My Uncle recently had a biopsy on a patch on his throat which all the doctors thought pointed to cancer, but it wasn't, so try not to worry whilst you wait. Easier said than done I know.

Well I thought it was Wednesday yesterday and took my 1st dose of steroids (7:30am) before realising my error. I was wide awake last night until late and woke up at 5am today (grr) annoyed as had an unnecessarily disturbed night & will also have to tell them at chemo and get an extra dose probably!

I hope everyone has a good day. Mum arrives later, so I will spend most of my day cleaning and tidying so she doesn't end up doing any of it if I leave it. I need to do a proper clean in some rooms as opposed to the quick tickle round I have been doing when my nausea was constant.

Glitterball
WhatWouldLeslieKnopeDo · 19/09/2018 09:54

noodle Flowers that sounds really tough. Well done for handling it so well. Good luck with the cleaning, but don't overdo it! :) even in your "good" week you're still recovering. I like hot Ribena too. Though I've given up on it after they changed the recipe Angry

iVampire yay for stability Star long may that continue

Waving to everyone

I've just been to the GP as I have a skin infection in my belly button Hmm oh the weird joys of chemo. I've got a week of flucloxacillin tablets, and that's what I had for my chest infection last time, so at least hopefully they'll keep any chest issues at bay as well... :)

OP posts:
WhatWouldLeslieKnopeDo · 19/09/2018 19:27

Me and my gross belly button have cleared the thread Blush

I hope everyone has had a good day

OP posts:
ranoutofquinoaandprosecco · 19/09/2018 19:49

Your belly button hasn't grossed me out that much! @WhatWouldLeslieKnopeDo hope it's getting better.
Hello to everyone, I've managed a couple of hours work today which was fab! Nice to have some normality, House is like a tip but never mind!
Hope everyone has a good evening, I've just made a cup of mint tea and am off to my pit! Grin

purpleunicorns · 19/09/2018 20:00

Woo I'm home again. Hoping I can stay out of hospital longer than a few days this time, although all the nurses were so lovely and the lady opposite me in the ward only lives a few streets away from me. Small world!
I spent the last 5 hours waiting for the pharmacist to sort my prescription out Hmm

Aw Noodles it's so tough with kids isn't it? But it's good they have support at school if they need it

Hope your belly button clears up soon Leslie

TwitterQueen1 · 19/09/2018 20:21

An infected belly button is a new one on me Leslie Grin Grin. It's all these 'little' things, like a permanently drippy nose and manky toes that really piss me off massively! As if chemo and radio and cancer isn't enough...

Purple glad to hear you're home again.

Noodles no news on PIP yet. I thought they were going to send me the forms again so I could fill them in 'correctly' but there's no sign of them. I'll ring tomorrow. After all the ESA and UC interviews and messages and fuss they told me how much they would award me except that they're not going to because my ill-health pension is too high. I thought this from the beginning but no-one was able to help and they just told me to go through the process.

AimlesslyPurposeful · 19/09/2018 20:39

Purple - So pleased to read you’re home! It’s lovely getting into your own bed isn’t it!

RanOut - It’s good to read you enjoyed getting back to work. You’re right, it’s the normality that’s nice.

Leslie - Your belly button news didn’t phase me either. Just sorry for you that it’s infected. I bet it itches like a bugger! Actually, I’m probably a bit envious if anything as my belly button was removed as my cancer was growing inside it. I now have no belly button which looks most odd. Having had one for 44 years you tend to notice the lack of one every time you look in the mirror. Also, I sometimes feel like I have an itchy belly button, I go to scratch it and it’s not there! Confused

WhatWouldLeslieKnopeDo · 19/09/2018 20:53

Aimlessly and I'm jealous of you Grin I wish they'd taken mine out. My scar is inside it, which I think is why it got infected as it's all a bit of a mess in there!

Glad I didn't freak anyone out with my mankiness.

ranout well done on getting to work Star

purple yay for being home. I hope you sleep well in your own bed Flowers

TQ yes, exactly that! A belly button full of pus feels like an indignity too far Angry this benefits situation is just such a mess and a waste of your time and energy Angry I hope you get your PIP soon

OP posts:
Namechangeforthiscancershit · 19/09/2018 21:22

Sorry is it bad that the belly button thing made me laugh? I’m sure it’s really uncomfortable but SO random! I think my belly button has moved a bit post liver resection (my torso is a jigsaw!) and I can’t feel it which still freaks me out.

Dulcedelecherocks · 19/09/2018 21:26

Quick one on the belly button. The bottom of my scar left me with a hole so it looks like I have two. It's also very weird and my daughter is forever asking me why I have two bellies Grin

WhatWouldLeslieKnopeDo · 19/09/2018 21:49

We're quite a bunch of weirdos really, aren't we?! Grin

OP posts: