Cancer Support Thread 96: It’s nearly Christmas - get the sprouts on.

[LemonDrizzle10]

New thread - old one nearly full!

I also find HRT threads triggering for slightly different reasons. I am to young to have been on HRT but often when I find myself searching for ways to deal with menopause (induced by cancer treatment) I find myself on those threads and it upsets me when I see people implying you’ll be very poorly without it because it makes me scared for my long term health with an early menopause.

Similar to your experience with HRT I took the combined pill from ages 15-32 and then mini pill from 32 until I got breast cancer at 35. In hindsight I shouldn’t have been on it because there is a lot of family history with breast cancer. I can’t remember if GP even asked me when I first went on it but if they had I would have said there wasn’t that much history in the family, the “history” developed from when I was 16-21 when two relatives got it. But I was never asked after that. Maybe I would have got cancer anyway but I am angry when I look back. I knew that the pill raised risk of breast cancer but I thought it was minuscule and didn’t matter. I also somehow didn’t link that with my family history and just didn’t think that risk was significant.

@aodirjjd I try to avoid them but sometimes they’re in active and too obvious. I took the pill for a few years too. I’ll never know if the hrt tipped the balance but I suspect it did as I was on the wrong drug for safety, for too many years and no one counselled me about it at the gp’s. I have no family history of cancer, let alone bc, and am sad that I didn’t know that most bc is hormone related rather than linked to a family history. There needs to be much better messaging in general and a better review protocol, but I’ve said that before.

Today has been a better day energy-wise and I’ve had two reasonable walks and also completed some short online training to start to gear me up for working again. Positives.

I was on HRT for 8 years with very few reviews. Unknown to me feeding my cancer. Asked by my surgeon at clinic and then by oncologist at first appointment if I had used HRT they noted it but made no comment. I wonder if privately there are alot of consultants that worry about its use but the pendulum has gone too far the other way. I stay away from loads of things nowadays...menopause threads, cancer days etc. Finished radio this week and still feel fragile with lots of triggers. Imagine I will be like this for a bit.

Hello, I've been lurking on here since I first posted and have found this thread very informative (more informative than breast care nurses & surgeon!)
I may be being utterly unreasonable (I do tend to be) but one feature of my experience so far (am starting adjuvant chemo next week) is the huge amount of time wasting by the NHS. One example is that I had a 1st oncology appt last week when I asked for a treatment schedule now type and duration of treatment decided, but they couldn't provide this. I asked if it could be emailed once decided (or I could phone.) Again, no. There was an immutable requirement that I attended for an "assessment" which turned out to be an explanation of the concept of a waiting room and adjacent treatment rooms (already familiar to me as I attend the haematology dept in the same location) after which I was given a list of predetermined appointments.
The nurse was staggered when I explained I couldn't attend the picc line appt I'd been allocated (already got an appointment at a different hospital 50 miles away that afternoon for a different condition) and a huge fuss was made about changing it.
There appears to be an assumption (regardless of how often I confirm I have fully understood everything and have no questions) that everyone is going to become a gibbering wreck and requires multiple explanations in person.
I am a frequent flyer in the NHS and can't get over how inefficient this system seems when compared with the various other specialisms where they seem to crack on with much less fuss and fewer resources.

@SuboptimalSitu My chemo ward were actually very good but i did find the radiotherapy department echoed your experience. I seemed to need 3 seperate appointments to discuss RT and practice breath holds. Most bizarre..it felt so high risk by the end of all these meetings..I couldn't fathom it...kept thinking ..when do we just crack on!!

Welcome @SuboptimalSitu and sorry to see you here.
It is part of the very special torture of going through cancer treatment that the staff allocate appointments that take no account of your needs, however loudly and clearly you spell them out! They will send you to two different hospitals at the same time, or book a scan for the one day you said you couldn’t manage because it was your mother’s funeral. Best to expect it but to develop the Mumsnet Cancer Thread bloody mindedness “Sorry that doesn’t work for me you’ll have to find another time!” What can they do? Discharge you? Of course not.
One of the best moments for me, after treatment over three years for two different cancers, was the day I walked out with no follow up appointment in oncology ever again! I still smile at the sheer unalloyed joy that surprised me.
Good luck with the PICC line, and with starting chemotherapy. Just take it day by day and it will pass.

Hello, can I join please? Just had a whirl wind few days after being diagnosed with leukaemia.

@hennipenni Sorry that you need to find your way here. Someone will be along shortly who has experience of your ‘brand’ of cancer. Everyone has their own particular situation, version, their own response.

A cancer diagnosis is rubbish. Full stop.

This is a supportive space, where you can say or ask anything

Wishing you well

"Failed" my blood test again 🙄, so no chemo for me on Monday and another week to wait, and my finish date slipping further away. Again I feel absolutely fine, it's just that my neutrophil count is way too low which is so frustrating.

My lumpy arm from the blood clots is still lumpy and still painful which is also annoying and now I have my Picc line in - my poor old right arm is really taking a battering at the moment. It took 3 goes to find a good enough vein for the line which was pretty painful but hopefully at least that's done life will be easier.

I'm sorry that you find yourselves here @SuboptimalSitu and @hennipenni , you'll find lots of useful info and some very kind people. The NHS seems to vary so much, I have had a very streamlined experience even though my oncologist and surgeon operate from a different hospital trust in a different county with appointments and all treatment except emergency stuff in my local hospital. My GP has also been excellent at keeping up with the prescriptions and instructions fired at them from elsewhere (except for a small quibble about paying for a long term prescription which is now thankfully sorted!). DH & I count ourselves lucky in this at least.

Hello to @SuboptimalSitu and @hennipenni I’m sorry you find yourselves here but it’s a good supportive group. I have been lucky with my team who have worked to set and change appointments to help to fit in with what I need. There do seem to be so many “extra” appointments but I’m pleased I’m not left in limbo or not having worrying things checked out.

@frostyfingers that is pants, mate. Just when you don’t need it, extra hurdles. I hope you and your dh are both rumbling on ok in the face of things.

At least the line is in now and hopefully there will be no further damage on subsequent chemos.

Thank you all for your warm welcome. I’m still taking it all in.
i was only diagnosed 4 days ago and have been receiving great care, whilst they test and make sure they have the correct chemotherapy regime.
I have Acute lymphoblastic leukaemia (ALL)
The plan was to start the chemo next week when all the relevant testing and preparation was completed, unfortunately my white blood cells have not responded properly to the steroid therapy so it’s being bought forward to tomorrow.
I’m not looking forwards to it but I know I need to get on with it, I’m missing my family (only the same two visitors are allowed for the duration of this stay which is 4-5 weeks), I’m also really missing my dogs- one of whom has got cancer himself and is on palliative care, we’re trying to sort out if I’m able to see him in the morning but I know the infection risks are high. I miss my boy and feel awful that I probably won’t be there for his last moments

So sorry to hear this, @hennipenni You’ve had things come at you so fast. A day at a time (or a few minutes at a time).
I hope something can be worked out with your lovely dog. What kind is he? Mine is an elderly retriever, now 13. He’s been given strict instructions not to do anything daft as I go through this.

@hehennipenni As others have said..sorry you find yourself here but keep talking and let us know how you're getting on. Sounds like your team are on top of moving things forward which is really good. Hope you got to see you doggo! I have a dopey golden retriever. He loves a cuddle which works both ways!

Hope you are okay @frostyfingers and the PICC is settling. Mine bled once quite badly in the first 10 days and I had to get it checked over and re dressed...then I forgot it was there. Very glad I did it as kept seeing folks sent away from chemo ward when they couldn't get a vein for canula. Hope things are okay with DH too.

I didn’t like my picc line because it was a permanent reminder I was a chemo patient but it was worth it. I had no issues with it either so fingers crossed for you.

Yes, I have a PICC line too - no issues with it, except that I am really looking forward to being able to have a proper bath without worrying out the sleeve and keeping it out etc

Sorry you find yourselves here @SuboptimalSitu and @hennipenni but it's a very supportive, kind thread

My lumpectomy is done, I'm back in my room, and had a lovely late lunch of grilled chicken and vegetables and copious amounts of tea! Just feel a bit sore (am aware I am full of painkillers at the moment) but otherwise I'm okay. Just chilling on Mumsnet and reading my kindle 🙂

That's sounds really hard @hennipenni, I hope the time flies for you. I'm fine today, just a bit frustrated really. The PICC line isn't in the best place for me but there were no options, is low down on the inside of my arm, and only just above the elbow so it's taking a bit of getting used to, and I agree so much with you @aodirjjd - the permanent reminder of cancer was the reason I wasn't keen but needs must and all that!

Glad the lumpectomy is done @BatshitCrazyWoman , that's another massive step along the way - just keep taking the painkillers, and be kind to yourself over the next few days, it took me a while longer to recover than I'd anticipated.

Sorry for the late update, I’ve only just remembered to switch the hospital wi-fi off so I can post!

I decided not to see my doggo as the risks would be too high for me catching an infection, but I’m getting lots of photos and updates from my DD and my DH is following my instructions for him to the letter.
I can’t remember who was asking but he’s nearly 13 years old, a cocker spaniel and has bowel cancer.

My first round of chemo has been done today, I just feel very tired, however the large doses of steroids are stopping me sleeping, I may have to ask for something to help as I appear to be running on 3 hours sleep a day at the moment.

Picc line hopefully going in on Monday/Tuesday, which I’ll be relieved about as the veins in my arms are now starting to become difficult to bleed.

Well done @hennipenni how many rounds will you need?
I had a PICC line with my first course of chemo. It was fine except when I went rowing and it bled round the tubing! I didn’t know you weren’t meant to do stuff like that. The second course of chemotherapy I had a portacath which was more robust and you can swim and go to the gym with them.

@TopOfTheCliff I have 3/4 more rounds as an inpatient (one a week) including 2 extra doses into my spinal fluid, then I can go home if my white blood cells are responding properly.
i then have 3/4 months as an outpatient attending almost daily with some in patient stays. I then go on chemo tablets for 2-3 years.

My brother has agreed to be a stem cell donor for me if needed, so the transplant team are getting that ball rolling.

Im so glad that I’ve now got a diagnosis, although quick as it was I now know the reasons why I felt that I was just becoming unfit and ‘getting old’ - I was a very active and fit 56 year old until Christmas- I thought I’d eaten too many mince pies!

Glad to hear from you @hennipenni and so sorry that you’re in this position. Well done your brother. A good friend of ours had a stem cell transplant for a brain tumour, which was successful. I have another friend who had a stem cell transplant a couple of months ago at the Marsden and was exceptionally well cared for through her treatment.

Thanks for updating about your lovely doggo. He sounds very well cared for. We FaceTime our dog when we are away and he reacts well to our voices.

@hennipenni one done then!! I had no idea about having to stay in hospital for your type of cancer / chemo. Keep us informed how you're doing..I hope it's a nice environment Does this mean you are in your own room?
You can emerge straight into better weather with any luck. I've forgotten what blue sky's look like!

@hennipenni so sorry you’re here- but ye club nobody wants to join. Sending good thoughts and kindness.

I’ve had a strange week. Tamoxifen has given me a 24/7 headache and mild lightheadedness. The breast care nurses didn’t seem to be particularly sympathetic “did you read the leaflet” “yes, for headaches it says speak to your health care team” “oh right”. They did say I could stop taking it if it got too bad. Not sure how much worse it can get, 2 weeks of a constant migraine is pretty bad so I’ve stopped taking it. But I have also calmed down & have an oncology appointment next week so will discuss with them then.

I share others frustration with the nhs - I love and hate it at the same time. It’s saved my life but also I get annoyed about the lack of information over my care and medication. If I don’t know it exists, how do I know to ask the question?

sorry, ranting now!

I also found out via Facebook that a lady I met on the chemo ward back last year has died. So very fucking angry at this shitty disease we have.

She was lovely and lived life to the full. Today’s lesson is to get living. Sending love and hope to you all.

That's very sad, @Littlecaf