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

[WhatWouldLeslieKnopeDo]

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

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

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

Hi!

Dropping in to introduce myself at the start of a lovely new thread.

I have leukaemia (CML) diagnosed out of the blue nearly 10 months ago, and am currently stable on treatment.

I haven’t been posting much as I didn’t need to be seen over the summer, and do I was ‘forgetting’ that I’m ill.

I’m also supporting my DMum who was recently referred under the 2week rule (GI symptoms and oedema). She has had first consultant appt and has scan this week. At least I was able to tell her what she can expect at the scan!

plannedshock l had a ‘neck to knees’ CT scan in the fortnight after leukaemia diagnosis, and was recalled for liver MRI a few days later (very worrying, that bit), but it turned out to be a benign cyst which is now shrinking (still having surveillance scans though) as are both liver and spleen themselves. Which is a good thing, as leukaemia can cause enlargement so it’s being interpreted as another sign the drug is working well right now

Another question,
Has anyone EVER been given hot toast for breakfast in hospital?

Hello. Back from a very damp camping weekend just outside Usk in Wales. Came back late last night cos the weather was bad and the forecast didn't look good either. Good time tho and DD had a great time. We had 12 kids there altogether.

In May I had a routine mammogram and then I was diagnosed with dcis part of which had developed into stage 1 cancer (grade 2). Had a lumpectomy and sentinel lymph node biopsy and now half way through 20 sessions of radiotherapy. Also taking tamoxifen. That's my story so far.

No I don't think they do hot toast Planned not in my hospital anyway

Glad you had a lovely birthday TQ you definitely deserve it

It's absolutely pouring down here, hope everyone's managing to enjoy the coolness

Hot toast?! No. It has to be stone cold and damp from being kept under a little paper towel on the trolley. I am quite partial to cold toast though. Then you get a nice layer of butter rather than it all disappearing into the toast. Only in hospital though. I have warm toast at home, obviously. I hope you get some sort of progress today planned :) I actually had my CT scan before I'd been told I had cancer. Colonoscopy on Saturday and CT on Tuesday. In hindsight that probably should've been a big clue

chase glad you managed to enjoy yourselves despite the rain!

TQ 59?! Surely not. I'm glad you're having a good celebratory weekend. And glad you approve of the title sorry Maisie is going back today. It sounds like she's had a lovely time with you.

Oscha it probably feels bigger/more noticeable now you know it's there. Try to resist poking it as there's nothing you can do until your appointment anyway glad you've had a good holiday

Dulce can't say I've ever been tempted by sushi, but I do love a cheese and onion sandwich.

I got my tomato one yesterday but it didn't really agree with me. They only had gluten free bread ones left, which was very fibrous. Next time I won't be so lazy and I'll just make myself a sandwich at home

Waving to everyone, especially all those waiting for appointments/results/to crack on with treatment

I feel like I'm here all the time at the moment sorry!!
Just had consultant come and tell me I won't be having ct today, it's in for the 20th and the reason I'm here is because they wanted to get me in on emergency this weekend. Not going to happen.
So now they are hoping for Monday. I don't feel that hopeful.
I just want to see my children so bad. I'm in hospital with no distractions just my head. It's screwing with my head big time. I'm constantly thinking I'm going to die and it's spread everywhere.
Today is a really bad day and it's only 10:30

@plannedshock that all sounds horrid I really hope they give you some answers soon.

Hospital is so grim. Can your children not visit you? That must be difficult.

I'd be asking why you need to stay in hospital to wait for an emergency scan, to be honest. It doesn't sound like they're treating you in any way? You would probably be much better off at home.

Fingers crossed you can get your scan on Monday instead.

I can hand on heart say that I've never given hot toast to my patients (it's part of the nursing code ie washing your hands,learning medication and ensuring the toast is just the right degree of rubberyness) the plastic domes really help seal in the moisture of the toast.

I got my biopsy taken 19th july, diagnosis 2nd August. Initially I wasn't going to be seeing anyone until the 15th August(with no further tests etc) but I've raised hell and dropped some emails on high to the relevant people within the nhs trust which threatened law suits and chatting to the national news papers and quoting nhs guidelines and NICE recommendations. (I've been saying I've had a lump since Jan but it's not been investigated correctly so it's clear someone somewhere along the line has fucked up royally and they are now appeasing me)

I've had
-oncology appointment 8th august
-breast and spine mri on the 9th August (I outright refused the mammogram as I'm only 32 and my boob is far too tender to even wear a bra)
-Ct abdo and pelvis with contrast,bone scan,echo and ultrasound with lymph nodes biopsy on the 10th August
-portacath being fitted on 14th August with a chat in the chemo department beforehand(don't know why as they have already been through the regieme they are planning on doing)

There's a bit of my mind going 'um they think it's spread so they are doing every ASAP'

I'm in pain. I've been living on a diet of anti-inflammatorys since March but it's not making a difference know. Im maxed out on paracetamol and naproxen most days now yet I could still cry with the sharp stabbing pain and the burning!

Planned-that's awful. Is there a restaurant on site that you could go and have a meal with your kids?

If you don't mind me asking-are they actually giving you any treatment over the weekend? Or is it just tot wait for the ct scan?

Plastic domes? That's proper fancy! None of those at my hospital.

I nearly cried when I woke up in recovery after a minor procedure a while back and they'd stopped doing post-op toast I was given a highly disappointing cheese and pickle sandwich instead. I just picked out the cheese because pickle and brown bread didn't seem like a good idea for my delicate digestive system.

If you aren't having any treatment and you are generally well enough you could ask for home leave,this can vary from a few hours to over night. Just to get you out of hospital for a while. It will improve your mental health so much.

Planned if they don't get you in today will they let you go home and come back on the 20th? There's really no point of you being there if you won't get your scan until then. I know it's scary but a week or so won't make any difference to how the cancer is. It's pretty slow growing so try not to panic

And don't worry about posting loads, you come and rant away on here as much as you want. That's what we're here for

Pandora ask them about pain relief, there's no point suffering when you don't need to. It might be worth asking about slow release morphine. I know morphine sounds scary but it's just a more effective pain killer. Me and Leslie both take it and it's one tablet on a morning and one on a night and it really helps. I don't have any side effects from it

planned it sounds like you are having such a difficult time . Can any family / your kids / friends visit you? Anyone who you can have a good chat with? If not, do the hospital offer anyone? I know nothing about how things work, but surely this is what volunteers / charities / Macmillan Nurses are for??

Is there anyone who could bring anything in for you which might help take the edge off your anxiety? I'm really not usually one for relaxation cds / river music etc but have found them help me while I'm waiting for results... I'm trying anything which has any kind of calming effect and which I can still have some control over.

I don't think people mind if you are on here a lot. I haven't even been diagnosed yet, but have found this board so helpful

And as bad as the toast is there's nothing better than waking up from a general anaesthetic and getting tea and toast. It tastes amazing when you haven't eaten for hours

Ah found a picture of the domes. Just imagine the mountain of cold yet sweaty toast you can produce with these. Plus normally balanced on top of the tea trolley to ensure there is a constant supply of condensation.

Yes to relaxation CDs and anything like that. I use the Headspace app for mindfulness. I think it still has a ten day free programme. On a previous thread people were using another one called Calm, I think, but I've not tried that. I also listen to classical music or to Deepak Chopra - I think most of what he says is total bollocks (sorry to any fans) but his voice is very soothing. Podcasts, audiobooks, frivolous magazines, silly AIBU threads... anything to distract you really.

And yes to asking for better pain relief if needed pandora. Actually my hospital does have some domes. They just use them upside down as toast bowls covered with paper towel not that I'm complaining. I love the catering people.

I can claim hot toast! Mid May I went in to the day surgery unit for lumpectomy on an 18mm tumour, plus lymph node biopsy. Suffered anaphylactic shock whilst in surgery and woke up in intensive care is another hospital entirely! By 6 am I was desperate for food (and clearly no longer at the brink of death) and was offered fresh, hot, tea and toast. Nothing like it when you've been nil by mouth for 36 hours!

Ps just finished my 20 sessions of radiotherapy, skin is in tatters so I'm looking forward to getting back on my feet by September. My mum died of breast cancer at the exact same age I am now, so it's been a bit of an emotional journey. Not quite plucked up the courage to start taking my Tamoxifen; thought I'd get the Radio side effects out of the way first...

we have a traitor in our midst!

In all seriousness, that seems like quite an ordeal to go through just to get hot toast

Sorry I cross-posted with my silly comment I'm really sorry about your mum. That must be really difficult. And I hope your skin heals up quickly now you've finished the radiotherapy

Knicker so sorry about your mum this disease is an absolute bastard but treatment has come a long way since then
Have you tried MooGoo for your sore skin? Luckily my skin was fine when I was having radiotherapy but it's supposed to be really good

Hi lacies! Love the new thread title Leslie.

I found lumps in my neck, was referred on the two-week plan, & was diagnosed with stage 3a non-Hodgkins lymphoma in March. I have two children - both school age - who help my emotional health, whilst simultaneously exhausting me.

I've had four rounds of chemo so far. Started with rituximab and Bendamustine, was allergic to the Bendamustine, so am now on RCVP.

My hair has thinned, but I'm not bald. My cancer is incurable, but not terminal.

My next chemo is on Thursday. I'm trying to enjoy the next four days of reasonable health.

Sore of you seem to be having a particularly rough time atm. for you.

Happy birthday TQ

at iVampire, my blood-diseased buddy

Knickerbocker: who were you sleeping with to get hot toast I call urban myth.
They are keeping me in only for this scan, it's the only reason I'm here.
I feel like rock and hard place, I don't want to go home as I don't want to wait until the 20th if I'm here I can chase it up but it's soul destroying being here.
I don't understand how every doctor I speak to has said how terrible it is that it took so long (I actually look really ill now- I'm 5ft 8" and weigh 7 1/2st) and how I've been let down, then does nothing?!?!
A nurse said I should speaks to pals?!