Cancer Support thread 86 - Stay Positive

[LemonDrizzle10]

New thread as other one nearly full.

@SierraSapphire well if it's been sent out by error they're going to get a piece of my mind! After the stress of waiting for my gram results I thought I didn't have to fear the post for another year!

I've just had a thought. I stopped HRT when I was diagnosed but have carried on taking a pea sized blob of Testogel each day. It's been on my repeat script from my GP and I have yearly blood tests to check my T levels. They're always high but my surgery hasn't been concerned because I have no side effects, only benefits. But after my last T test the nurse practitioner contacted me to say she was concerned it was high, although admitted it was actually lower than in previous tests. She wanted me to reduce the dose but I declined saying I was happy as I was. I cited all the research and the reading I'd done about the benefits of T in breast cancer survivors. She was a bit snotty about it actually and said she was going to escalate it, and I now have a phone appt with a GP next week ffs! I wonder now if this bloody jobsworth has also contacted the breast clinic?

Bookist I was told I would get yearly mammos for 5 years and I would also get 3 yearly invites to the regular routine mammos in the mobile units and they said to ignore those. Might be that. Seems a bit daft they can't coordinate lists.

Thank you @Silkierabbit. I did have a letter inviting me to a mobile mammogram unit a few weeks ago, and I just ignored it because I'm already having yearly grams at the breast clinic. This mysterious appt is definitely at the breast clinic with my consultant.

@Bookist it couldn’t be anything to do with bone density could it? Have you had a DEXA scan while you have been on tamoxifen? Just wondering if that might generate an appointment three years on.

@SierraSapphire I have a very dear 83 year old friend who frequently embarrasses me with unwanted hair compliments so I allow her one random hair comment each time I see her then she has to button it. Last time I saw her after my mini trim she said nothing about my hair at all. I’m wondering if she was so appalled she couldn’t think of anything to say 😂

Hi everyone,

I can't sleep due to worry and rage. I was informed recently that my heart muscle has been affected by herceptin as such i will need medication to help with blood flow to the heart. Has anyone had this and is it reversible? Does this translate to heart failure?

I am angry because cancer just keeps taking and taking people say enjoy the now but it's just impossible as I am am worried all the time. I can't have a relaxed sleep and I don't want to see the gp about it as I just cannot handle any more medication. I have only just come off two weeks antibiotics for a chest infection which really knocked me for six.

@,chocolateismyfavorite I am so sorry to hear your update. Thinking of you and sending virtual hugs.

I am sorry if I sound selfish about my own worries I am just so angry.

That's what we're here for @Makemineadecafplease - if you can't be selfish when you've had cancer, when can you be? Sorry to hear about the herceptin issues. I know what you mean about not wanting more medication, I sometimes think should I get something for hot flushes and anxiety, but I don't want to overload my body with more stuff.

@TopOfTheCliff have just spoken to the clinic and the appt is just the 12 month follow up after my last surgery. Christ, why couldn't they just have mentioned that in the letter? Instead there were several paragraphs telling me all about the hospital's commitment to COVID safety. And a further page citing stuff about their mission statement. I'm very relieved but also really pissed off 🤬🤬🤬🤬🤬🤬

I’m so sorry to hear that @Makemineadecafplease Moaning definitely allowed. It’s the gift that keeps ‘giving’. Sending positive thoughts and solidarity.

On reflection I realise the lady at the funeral was just trying to be nice. I was more tolerant before I had cancer.

Random question. I’m in the East Mids and had a message this morning to say the north London uni trust had connected to my Patients Know Best record. I am mystified about this. Anyone else had this? Am sure it’s just an admin thing but I have an oncology appointment later and for some reason it’s made me feel panicked.

Thank you Dotty and Sierra. I may be the next to use the rage room.

Thats a relief Bookist, but yes I do agree with you, there was no need to cause all that anxiety.

@dotty2 perhaps the patients know best connection is for research purposes?

Hi all. I'm on Paclitaxel and carboplatindir groin lymph node cancer. Had my first treatment last Friday. I have had some bleeding from my vagina - don't think it's from urine. No clots, nothing major more it's on the toilet paper when I 'blot'. I did have similar once before I started treatment. Any thoughts?

Can you ring your cancer nurse specialist for advice? Is that the primary in the groin?

@Timeforchangeithink i had that once after endometrial cancer and hysterectomy. Vaginal atrophy. Lovely. I got some Yes moisturiser from the GP after she checked it out.

@dotty2 i had something similar, turned out the dr had moved and hadn’t updated their log in details. Most of the time I think this sort of thing is probably innocuous but of course we’re all hard wired to go straight to sinister

I’ve had an itchy eye all night and woke up with like a lump of fat or cyst looking thing on my eyelid. It doesn’t hurt but it’s annoying. No appointments at the gp has anyone had this?

@EachandEveryone @SierraSapphire thank you, I'm waiting on them phoning back. I do actually atrophy due to radiotherapy in 2017 so that might be a shout. Will come back to update x

@EachandEveryone I had rectal cancer in 2017 and 2022 so am assuming this is secondary - not up on these terms yet!

@EachandEveryone I had a small white cyst sitting on my inner eyelid just by the tearduct for ages, just appeared overnight. I hated having it, I was convinced people were noticing it when they looked at me so I got the GP to remove it - he pierced it with something - nothing there at all now. He really didn't want to do it but I made him :) Funnily enough at that same appt he took great interest in a mole I had had on my face for over 25 years, despite me telling him how long I had had it and it had never changed appearance he decided (and told me) it was a basel cell carcinoma so he referred me. As suspected the dermatology team refused the referral. Fancy telling someone they have cancer on their face! I originally tried to get a nurse appt to get rid of the cyst on my eyelid but she said the Dr had to do it, probably cos of where it was I expect. Hope you can persuade your Dr to rid you of yours :)

@Scandimandy it is very common to have skin cancer on your face, although obviously not for 20 years unchanged. My DH has at least five small basal cell carcinomas that need removing but his head is firmly in the sand.

Hi everyone. I have read all of your posts and finally plucked up the courage to post myself. I have very recently been diagnosed with anal cancer and apparently I’m a complex case as I already have Crohn’s. I was kind of expecting a cancer diagnosis at some point but I am only 32 with two small kids so it’s earlier than I would have hoped (if that makes sense…)

They aren’t sure of staging yet because the scans are showing areas which the consultant is unsure whether it’s cancer or Crohn’s inflammation. So I think I will be playing a long waiting game with more biopsies before anything happens! I am very worried about side effects from radiotherapy as I already have significant scarring in my bowel from the Crohn’s and don’t think I can cope with more so a stoma is looking likely for me as well as chemoradiotherapy.

All in all it’s a shower of shit and I am already sick of people telling me I am brave and will get through it when I think privately they’re glad it’s not them!

Sorry for a very negative first post. I am just so angry that this diagnosis has happened to all of us.

I've been angry all day at how anxious my mystery appointment letter made me. I've decided to politely complain in writing and urge the breast clinic to include a brief explanation in their letters. But who should I address it to? Should it be PALS?

@Brunonononooo welcome to the friendly thread nobody wants to join. You can have an introductory hour in the Rage Room as a priority to smash up virtual crockery and small electrical devices with a big hammer. Full protective gear provided. Rage is totally normal and gets us through a lot of truly awful situations where the alternative is crumpling sobbing on the floor. Post away, we understand.

@Bookist I guess to effect change you would best approach either your consultant or their secretary who sends out the letters. I would start with a politely worded letter explaining how the appointment made you feel and suggesting a simple change that would avoid causing alarm to patients. If that fails then PALS is backup.

I’ve had a long day out at my favourite aunt’s funeral. She was 92 and died in her armchair at home peacefully. It was a good day. Tomorrow is my DDs UK wedding celebration so another fun day and the forecast is great. I’m trying to ignore chemo side effects.
Sending strength to all
Top

@Brunonononooo i’m so sorry that is truly rubbish and you must absolutely make use of the Rage Room. I feel a bit of a fraud here because my chemo has shrunk my tumour to basically nothing so I am aware how lucky I am but this thread has been a huge source of comfort and advice to me and I hope it will be to you too - nobody really gets it who isn’t going through it.
oh and we all get how bloody irritating the ‘brave’ thing is - it’s not like we have any choice