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

When I went to get my results they said it had spread too far to be cured. I stupidly assumed it was just around my cervix so didn't bother asking anymore questions

I'll have the queasy drops if that's ok, I'm willing to try anything! I'll PM you my address and send you the postage money over

I'm really fancying a chilli right now wonders is I can get a same day delivery from Asda

The thing about being awake most of the night is that I get to pass the time away sleeping during the day
Hope you manage to get some rest once your DD is at school

so didn't bother asking anymore questions

It doesn’t really seem like something you should have to ask to be honest!

Queasy drops are great, give them a go for sure. Can you have cold drinks? I can’t which drives me mad when my mouth is gross, but I have lots of room temperature water sat around and make up lime cordial, elderflower etc. Until the dog knocks them over and I have to wait ages and start again!

Ok re address, don't worry about postage, am just glad they can potentially be of use somewhere.

Argh room temperature drinks. I can't bear room temperature water now! Too many icky memories. The no cold stuff really sucks

purple what a nasty shock I hope you're getting a chance to rest today. And thanks for the PIP info. I think he agreed for them to do the DS1500 so I'll wait and see what Macmillan say and go from there.

noodles I hope DD's tummy bone has healed up :) oddly I don't find the spicy things hurt my mouth. The only thing is that they make my nose run like crazy. But if I eat chocolate when I have a mouth ulcer - utter agony

I had a medication review with the GP and she was great. She's going to consult with the palliative specialist to make sure I'm on the right dosages and then see me again next week. I'm going to try a regular dose of diazepam as the pain seems to be spasmodic (is that the right word?)

To be honest it sounds like we could all do with an afternoon nap so I'll get the blankets out :) snuggle up everyone

Luckily I can have cold drinks as tea and coffee are making me feel sick 🤢 I can't bear room temperature water after the amount I had to drink for my radiotherapy

Glad you're getting sorted Leslie. I'm snuggled up in my woolly hugs blanket eating pineapple. I don't think I've ever eaten so much fruit since I started chemo

I'm appalled at those of you having problems with your PIP applications. It was very straightforward when DP applied, again with Macmillan help. Maggie's can also help with benefits applications etc. Get the application in asap, even if you don't have all the info, or start the process by phone, as that's when you'll get the benefit from. Once you've got it, you can also apply for a blue badge and motability scheme. And if you like going to the cinema, you can also apply for a CEA card so you can get a free ticket for someone going with you. TQ, I thought that was a 'fast track' for cancer patients applying for PIP - wtf, a health consultant. Grrrr.

FFS Purple, that's an awful way to find out. I think that lots of docs don't tell you about other stuff going on, I found out a few things from my own reports when I asked for them. Meh.Hope you're nicely snuggled up and the pineapple is helping.

Leslie, I'm sure you know this already, but you could request a referral to the pain team at your hospital or hospice directly - although it does sound like you've got a good GP there. The pain team at the hospice were the greatest help to DP and that was well before he needed hospice care. They were definitely the experts and it was very useful to be able to tell his (crappy) GP what he should prescribe!

Hope everyone has made the most of their blankets and afternoon naps.

Thanks Flippy :) I'm already under their care, sort of, but it's much easier to see the GP. They're very good at admitting when they're not sure about something and asking the specialists, but I'll definitely ask to speak to someone directly if/when needed. I'm sorry your DH's GP was rubbish. I've been so lucky. This wasn't "my" GP, just the one who happened to be on duty when my pain flared up the other day, but she's taken full responsibility for it all. Honestly I start to tear up whenever I think about them all and how good they've been to me, and I'm not usually a soft person

How are you doing? I hope you're still taking things easy ish

purple I hope the pineapple and blanket snuggles helped :)

Waving to everyone. I've managed without any pain relief for nearly twelve hours so I'm taking that as a sign I've turned a corner. I hate Oramorph. It's so fucking sticky!

My DS1500 seems to be taking a long time too. My benefits advisor assured me he sent it off, I saw him more than 4 weeks ago. He’s going to chase it next week because the PIP people say they have not received it. Hopefully it will get sorted. I did apply for and get a blue badge without needing to go for an assessment so that has helped. I will also apply for a Freedom Pass once my PIP is sorted out.

That's good news about the blue badge Mysillydog. That was my main motivation for wanting the PIP as my local council is very reluctant to give blue badges otherwise. I hope that it is making life a bit easier? And I hope they get your DS1500 sorted quickly

I'm settling down for my first night on my new mattress. I've convinced myself that it'll cure all my ills goodnight lacies. Sleep well.

Hope you enjoyed your mattress Leslie and you got a lovely night sleep

Flippy I think it was partly my fault for not asking for more details. When they say there's nothing else they can do I guess where it had spread to seems less important. Fingers crossed the palliative chemo keeps me going for a while.

No more steroids left now so hopefully this will be the last day I'm up at 4:30

How are you doing Pandora?

Thinking of you Planned hope you managed to get sorted with the Royal Marsden

Waves to everyone else 👋 and plenty of and for those that need them

Good morning lacies. I've been reading all your updates this week but haven't checked in as I was trying to make the most of feeling normal!
@purpleunicorns did you manage to get back to sleep?
@WhatWouldLeslieKnopeDo how's the new mattress, would you recommend it?
@plannedshock hope you've got lots of lovely people around you and some sort of plan in place.
@noodles44 how you doing? Also wanted to pick your brain. I think you mentioned you cold capped twice then stopped. Was that because your hair came out anyway? I cold capped for my first one and today I've started moulting in one place! Next lot of chemo is Tuesday so I suppose I need to make the decision whether it's worth the length of time it adds if my hairs going to go anyway! I'm not too fussed if it does go.
@Pandoraslastchance how's the remainder of your week been? Have your family stepped in to help your Grandad?
@Mysillydog I hope your benefits are sorted soon it amazes me in this day and age that things aren't received any faster! How did they send the form - pigeon post or snail mail?!

I managed a couple more hours, hopefully tonight will be better. How are you doing Ranout? Glad you're feeling normal, I think I'm starting to get there. This round of chemo seems to be slightly easier than the last time, I've still felt awful but not so awful that I've considered stopping it

Hey all. I'm really run down. I had my pip form filled in yesterday by a Macmillan advisor but she doesn't think I will score enough points to get pip, even at the lowest levels as ive only had this diagnosis since end of July which isn't three months yet and the side effects from chemo apparently don't count. So the fact that I'm almost bed bound due to being tired and I have to get taxi to and from hospital twice a week at the moment for appointments/chemo etc count for nothing as I can feed myself and know when to use the toilet and I don't use aids to cook with (I'm not able to cook as if I stand for that long I go dizzy and my kitchen is too small for a table and chair to prep food plus my attention span is tiny)

My family still haven't stepped up at all with my grandad.

I've shaved my head and I'm learning how to tie and wear head scarves. I've got some wigs coming in a week or two.

Just hoping I'm well enough for my chemo this Thursday.

Sorry to hear that pandora. Unfortunately I think it's quite unusual to get PIP unless you've got an incurable diagnosis. But I hope they can sort something out as you're clearly struggling

purple I hope you sleep better tonight

My new mattress seems alright. It smelt really weird when it arrived. But thankfully that seems to be wearing off. I didn't sleep much last night but I think that's the steroids.

I'm spending the day in bed as my lungs are really struggling - just getting up the stairs is a major effort today!

ranout glad you've had a bit of normality before the next onslaught

Sending love to everyone

I hope the new mattress was as good as you hoped it would be last night Leslie (& you are still asleep it is so luxurious!)

Glad this lot seems slightly better purple I have had awful bone, joint & muscle pain with occasional nausea and daily dire rear. Not sure whether I preferred the constant nausea or not to this, a tough toss up!
I have been managing it with co-codamol, paracetamol & ibuprofen and now I am not doing the self injections the flu feelings are easing & am much better than I was in the week. My Mum & Dad are still here, so I have been able to go back to bed. They go home tomorrow, am just hoping the dire rear episodes do not clash with school run times next week if I am still having them. It feels nice to be on a 3 weekly cycle now instead of fortnightly as next week I should keep improving & feel OK for 2 weeks now...

ranout glad you have felt normal this week, are you on 3 weekly cycles for chemo? I cold capped twice. My EC chemo was fortnightly, so I hadn't lost any hair by the 2nd chemo. Mine went really thin at the front after the 2nd chemo and looked dreadful, so my friend shaved my head for me. It makes the chemo process much quicker now. Plus the herceptin & docetaxel I am now on is a much longer infusion than the EC, so I dread to think how long I would have been at the chemo unit if I was still cold capping. I don't miss it & am nearly bald now.
The worst is loss of nose hair though, oh my goodness am dreading getting a cold, I only have to cry or have a vague sniffle & liquid shoots out of my nose as there is nothing slowing it down any more. Something I hadn't considered, so worth stocking up on handy andies incase you have similar.

Pandora The dizziness sounds very debilitating. I hope someone else steps up to help with your Grandad and you can get the rest you need. Fingers crossed you can have chemo this week.

Waves & hello to all the lacies, I hope everyone is having as good a day as possible

Cross post Leslie I hope you get better sleep now the steroids are wearing off. That new mattress smell is annoying as it does seem to take 24hrs to properly air them. I hope your lungs calm down soon as that cannot be very pleasant

Hi all

@purpleunicorns hope you have a better nights sleep tonight and the chemo symptoms are easing. I'm good in myself, had a nice walk into my little town, bought a scarf to tie around my head (will practice tomorrow) and had a cheeky glass of wine with a friend. I've sent DH and the kids to his parents for their night so I can have a bit of a rest!
@Pandoraslastchance I'm so sorry your family haven't stepped up for you. I also hope that you've managed to take it a bit easier on yourself. I'm not au fait with PIP but it seems like a bit of a nightmare, fingers crossed they get you sorted soon. How did it feel shaving your head? My scalp is achy now so I think I'll see how I feel before chemo on Tuesday and it may be time to get rid of it. I have a wig I like but think l'll be more comfortably in a beanie so I've just ordered one.
@WhatWouldLeslieKnopeDo how are your lungs? I'm learning as I go along about everyone. I hope they are clearer? And that tor mattress lives up to its expectations!
@noodles44 I hope your bone and muscle pain is easing as it sounds really horrid. I also have my fingers and both legs crossed for your school run next week. Yes I'm three weekly with my chemo. I'll have my second lot on Tuesday then another mri and they will decide whether the tumour has shrunk enough to continue with another four or discuss surgery. I'm in their hands and don't mind either way. My DH decided in his wisdom that it will be fine for him to go in to work on Thursday (chemo Tuesday!) and I need to collect my DS at 11am from school! I also hope I'm not puking or have dire rear!! I get what you mean about nasal hair. I think most of mine has gone and I wander around with a tissue attached to me and then lather sudacrem on my nose on a night!
Hope everyone has as good a nights sleep as they can I'm off to lather my nose on sudacrem!

Good morning

ranout my lungs are OK. They're just quite full of tumours and I also have asthma now, so any tiny bug or change in weather etc sets off symptoms. Annoying, but such is life. I hope your hair hangs in. The scalp pain is horrid

noodles I hope you feel much better this week the nose hair thing is so annoying!

Happy Sunday everyone

Happy Sunday to everyone too.
I found out that I'm stage 1

Pandora are there any other benefits you can claim? I'm surprised they won't let you claim PIP when that's based on what you can do. Obviously people who have never had chemo have said no to you
I gave up with headscarves after a couple of days and just wear beanies now. I can't wait for the cold weather so I can wear my woolly ones

Noodles I think I would much rather have pain than the constant nausea. If anything hurts I can take painkillers but nothing seems to shift the general grottiness. Thanks for the sweets btw. I love the banana ones.

Minnie although all cancer is obviously bad, stage 1 is so treatable! Fingers crossed you won't need to be here for long once it starts

purple it's amazing what counts as good news now. I've got my radiotherapy planning date and I've started tamoxifen.

That's great news Minnie. I was stage 1 BC. Just finished my radiotherapy I had 20 sessions. I did get some fatigue and my skin went a bit pink but the hospital gave me some cream so it didn't get too sore.

I finished 2 weeks ago and the pink Ness has died down now. Tamoxifen has been OK for me- my pms is a bit worse but that could be down to stress too.

Just popped in to wish everyone a restful and relaxing Sunday and hope this week's appointments and treatments go OK

Morning,

That is great news minnie - well about as good as it gets under the circumstances

Glad they arrived ok Purple & that you like them. I hope they help with the funny taste. I took a leaf out of your book and have tried fruit juice with fizzy water. My mouth has been so sore & sensitive I thought it would be too acidic, but it was ok and nice to have a change of beverage, very refreshing!

It is the dire rear I am concerned about with regard to school runs. I have 2 schools to do - junior & infants - it only takes about half an hour, but is more or less at the time my tum has a funny turn each morning so far, so could be fun 2mo! That said, my Mum & Dad are considering delaying their departure until 2mo due to my tum!
I had a nosebleed this am when I bent over to clip the harness onto my dog. Again, with no nose hair, it looked like a murder had been committed! Luckily it stopped as quickly as it started.

Good luck Tuesday ranout if it has shrunk considerably, are they likely to continue chemo to shrink it more? My node & tumour have wire markers in them as they think chemo should shrink them so much the tumour & node will not be visible to the surgeon, so need the markers to show exactly where they were. This means my op will hopefully not be as big too.

Have a good Sunday everyone

Minnie that's very good news! Happy Sunday to you.
Leslie hope those lungs are behaving themselves today.
Purple I didn't bother with headscarves either - much too fiddly! Beanies are great.
Busy week ahead so need to pace myself. Overdid it yesterday so today is definitely a lazy day.