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Original poster

CANCER SUPPORT THREAD 65 - for anyone with cancer or waiting for cancer tests (pets welcome!)

987 replies

WhatWouldLeslieKnopeDo · 28/09/2018 07:19

Good morning everyone,

Welcome to the new thread, and the club that nobody wants to join. Our previous thread is here.

Anyone with any type of cancer is welcome. And we will hold your hand if you're waiting to find out whether or not you have cancer at all.

If you've got a loved one with cancer then you can get support here.

Please feel free to reintroduce yourself so we don't all have to remember from the previous thread!

OP posts:
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31
basher77 · 21/10/2018 12:59

hi, sorry fir barging in.... im at a loss. After a smear in March was told i needed a lletz treatment due to abnormal cells, then had another treatment as cells still there. Results back still pre cancerous but unclear margins recommend hysterectomy (leaving ovaries) had my op 3 weeks ago.

Now have been told they found cancer which is very unusual (yay me) i need a pet ct scan and now another op to remove lymph nodes. Confused
After leaving the hospital i forgot to ask questions andhave forgot most of what she said. I feel silly now.

Namechangeforthiscancershit · 21/10/2018 13:01

basher sorry you’re here. You’re not being silly. No one takes it all in when they dump this on you. When is your next appointment?

basher77 · 21/10/2018 13:08

I dont have one! waiting for a date for my scan. She gave me a card with a name of a macmillan nurse would she know about my case??

purpleunicorns · 21/10/2018 13:08

Hi Basher, I have cervical cancer so if you have any questions I can try to answer them. Do you know when your scan is?

basher77 · 21/10/2018 13:15

thank you. No she put me on the system hopefully the end of this week next week. She said it was highly unusual for it not to be found during my 2 Lletz and obviously would have had lymph node removed at the time of my hysterectomy but now they have to go back in which is less than ideal! Would the macmillan nurse know about my case?

TwitterQueen1 · 21/10/2018 13:29

Hi Basher
No, AFAIK the macmillan nurse will not know about your case, though it's worth ringing anyway as I'm sure they will have some useful information for you.

I would ring your dr tomorrow though it's unlikely they will know anything just yet (things move slowly in the NHS). Do you have a number for whoever told you about the cancer? or for that particular department? If so, I would ring them and ask to speak to someone (again, unlikely to get anywhere on a Sunday I'm afraid).

basher77 · 21/10/2018 13:37

Thank you, i will ring tomorrow to go over what she said and ask my ???. My mind just went blank at the time.

KeepCalm · 21/10/2018 14:23

Hello @basher77 it's a lot all at once. Am new to all this too but the ladies on here have brilliant advice and practical offerings to help us middle through.

Having someone with me to help take it all in has been paramount to my understanding of what's going on. Things go in one ear and straight out the other when it's anything to do with MY health/wellbeing!!

basher77 · 21/10/2018 15:58

yeah keep calm thats what happens, i will phone tomorrow and speak with someone. Its sucks eh?? Thanks again im sure i will be back with more ??? once i speak with someone ....

ranoutofquinoaandprosecco · 21/10/2018 18:17

Evening everyone. Hello @basher77 sorry you're here. I take a notebook to my meetings as I often go alone, I write down any questions I think of before I go and then try and remember to ask them and write down the answers so I can look back at them if needs be.
We're holidaying at home this half term! Plenty to do where I live and I feel as if I want to be away from cozy bed too long!
Thanks for whoever updated on Docetaxel that's what I start a week on Tuesday.
Hope everyone has had a good weekend Smile

noodles44 · 21/10/2018 20:09

Hi everyone,

How did it go ladymaryc?
Sorry you find yourself here basher hopefully you will find out all the info you need soon, don't beat yourself up though as it is ALOT to take in at once & definitely takes a while to get your head around everything.

Has anyone had any eye problems at all? My eyes yesterday & today are feeling really irritated and are quite red. My right eye was sort of glued together this am. I'm not sure if this is a side effect or if it is because my eye lashes are falling out (I still have 2/3rds) and stuff is going in my eyes, or if it is something totally unrelated. Bloody annoying though as very scratchy and I feel shattered now as my eyes are so heavy. I do have a bit of a sore throat too, so am maybe getting a bit of a cold bug.

purple if your heart cushion is still going spare, I will send you the cash to post it to me please. No worries if not, I may dust my sewing machine off & see if I can manage one of those before my op... Just need to learn to thread it 1st!

ranout sounds a good plan, not sure if my memory is playing up, but I think it was you that said about your youngest & chicken pox. Have you avoided the chicken pox alright if so?

keepcalm kindle books and mini break shopping sounds the ideal way to spend a bad weather day. It has been absolutely glorious by me without a cloud in the sky (south east) I hope you booked somewhere nice.

I hope everyone has had as good a weekend as possible.

KeepCalm · 21/10/2018 20:56

@noodles44 not red or irritated but slightly blurry. Which is an answer of feck all use to you sorry!

I went out for a wheech in my pals new car (in my jammies because am a lazy arse)

I now have funny coloured pee. And aching joints. No sickness thankfully.

Getting more interesting by the minute this chemo nonsense.

noodles44 · 21/10/2018 21:08

You can take over the counter pain relief for the aches keepcalm (if you are able to usually) I had some paracetamol to take initially & co codamol for if it got worse. The chemo nurses said to ring them if I was too uncomfortable as they had stronger stuff they could prescribe.
If your aches are very uncomfortable, it may be worth giving them a call 2mo for advice.

purpleunicorns · 21/10/2018 21:46

Noodles my eyes are itchy and irritated too, my eyesight is definitely getting worse but I'm not sure if that has anything to do with chemo. I think I'm overdue an eye test so I'll try to get booked in sometime soon. I use vaseline on my eyelids which stops them being so dry.
PM your address and I'll post the cushion, call it payment for the sweets you sent me 😁

Basher they'll be more than happy to talk to you if you ring them tomorrow, have a notebook handy to write down what they say. I don't think anything sinks in when you're in shock

Original poster
WhatWouldLeslieKnopeDo · 21/10/2018 22:10

Evening all

We are heading home tomorrow so I will catch up properly then! I'm too impatient to type much on my phone screen Blush

LadyMaryC thinking of you and hoping today went as well as possible Flowers

purple and KeepCalm blurriness and deterioration in eyesight can be due to the steroids rather than the chemo itself. Mine are blurry for a few days each chemo cycle. I've also become very slightly short sighted. It's not enough to really need glasses, but I got some for the blurry days and they help.

noodles I also get dry and scratchy eyes from the chemo itself. I've tried a whole range of eye drops and sprays. The best I've found is Viscotears Liquid Gel. The oncologist recommended artificial tears. It's a thick gel and it really soothes them. I also use one of those eye sprays you can apply to closed eyes when I'm out and about. And on really bad days I sometimes use an eye bath!

That's enough of me wittering about eyes.

I hope everyone sleeps well.

OP posts:
Original poster
WhatWouldLeslieKnopeDo · 21/10/2018 22:12

The spray is called Murine Refresh and Soothe eye mist.

OP posts:
Mrstraveller · 22/10/2018 02:37

I have dry eyes anyway and my optician recommended viscotears. You can get it from any chemist but I’ve usually had to ask for it. I never see it on the counter with all the optrex type stuff. As Leslie says it’s a thick gel so your eyes go blurry for a while but ‘‘tis very soothing.

I’ve also noticed that my long range vision has deteriorated.

With pain I went through 3 cycles with just paracetamol but for me it wasn’t enough. For this cycle I’ve tried over the counter co cocodamol which has taken the edge off the joint pain more than the paracetamol but I’m going to speak to the GP about getting something stronger for the next cycle. The worst of the joint pain only seems to last about 3 days for me so I just need something stronger for that period.

KeepCalm · 22/10/2018 06:16

@Mrstraveller I normally use neurogenic plus for my pain management (I have arthritic hips) but was told I can't take it the day before chemo/day of and day after. Otherwise it was ok to use. That might be an option for you?

Paracetamol is like chewing smarties for me 

Original poster
WhatWouldLeslieKnopeDo · 22/10/2018 08:53

If any of you can use NSAIDs then I've found Voltarol gel really good for bone and joint aches. I can't use it anymore so I use Tiger Balm instead. It's herbal so it's not as good as proper drugs, but the tingliness seems to help distract a bit from the pain.

OP posts:
Mrstraveller · 22/10/2018 09:01

Ha ha. Yes I get what you mean with the paracetamol. I think generally they like you to stick with the painkillers that don’t constipate you as most medics are obsessed with bowel movements!

LizzieSiddal · 22/10/2018 11:44

Hi everyone, sorry for barging in and I'm not sure this is the right thread, but I wondered if anyone knew about getting a recall after a mammogram?

I only had the mammogram on Wednesday and got the letter on Saturday, to go for 'further tests'. I'm trying not to worry but I am, the speed at which I have go this letter is scaring me. My appt is 2 weeks today.
I phoned the hospital this morning and a lovely nurse phoned me back and said she couldn't really say much, other than they needed "further information" and would need to have another mammogram.

Does anyone have any experience of this? TIA.

noodles44 · 22/10/2018 11:46

Thanks for the tips re eye stuff. I will pop to the chemists soon & see if I can get some. I had read on the EMC website about the less common side effects of docetaxel and conjunctivitis is mentioned too. Will see how I go as they are quite crusty first thing, but just a quick wipe of them seems to do the trick for quite a while, so if it was that, it isn't very bad, just annoying more than anything.

Thanks purple are you sure thou as a cushion is a much bigger parcel than a bag of sweets! Will pm you.

I hope everyone is ok & feeling as well as possible.

noodles44 · 22/10/2018 11:57

I have no experience of a recall lizzie as mine showed up on the first one!

Try not to worry too much as if they need you back, it could be for many reasons, some breast tissue can be very dense, so they cannot always see what they are looking at clearly.

If they recalled you, it would probably automatically trigger an appointment and letter for you. Because cancer is a possibility you would need to be seen within their 2 week window. I worried about the speed I got some letters and was assured once in the system it generates these within the recommended time frames. The waiting is the worst part though as you over think everything and worry. I found keeping busy was a good distraction I between biopsies and my consultant appt to find out if it was cancer or not.

Hopefully it will be nothing, but here for a virtual hand hold if needed Flowers

Thymeout · 22/10/2018 12:00

Lizzie I had this. My original routine mammogram was in a converted WW2 ambulance on an analogue machine. I think there's a 2 week target for call-backs. Had second mammogram on state of the art digital machine. Consultant could see immediately that all was well, but did u/s to make sure. Fingers crossed for you.

LizzieSiddal · 22/10/2018 12:05

Thank you noodles and hope you sort your eyes are feeling less sore soon.Flowers

I'm trying to keep busy but work from home and keep getting distracted by Dr Google. I must stop googling!