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

@Minniemountain that is great news. I agree its funny what we think is good news for us lot now! It has definitely made me enjoy things I took for granted before. I walked into my little town on Friday and had a cup of coffee outside and just sat and enjoyed it! The same yesterday with a friend but I had a sneaky vino! I think I'm going to embrace carpe diem as much as I can.
@noodles44 yes that's right if the tumour has shrunk (they did say they that because of the type the chemo sometimes doesn't work as well) I'll have another 4 sessions after this one. I think I'll be pleased to know either way. I like to be organised!
Have a lovely Sunday lacies.

Ranout I'm glad the chemo isn't too harsh on you and you're still managing to enjoy going for coffee. If you struggle with headscarves you can buy ones with elastic that are already tied so you just pull them on

Noodles is it worth trying to have your meals at different times to stop the dire rear
when you need to do the school run?

You take it easy TQ. I've just got back from Tesco and thought I was going to pass out I felt so weak. I had to sit in the car for half an hour before driving home. I think I'm ok until I try to do anything, even going upstairs for something I need to sit on the bed for a bit before coming back down

purple try not to do too much, you have literally only just had the chemo. Can you do an online order for food next time to avoid feeling so dreadful after hauling yourself around the shop? You are good at telling others to rest up & you need to follow your own advice (annoying as it is that a trip to Tesco's can wipe you out so much too)
Sorry, not lecturing & I know I am fortunate in that my Mum & Dad have popped out for food etc so I haven't had to do anything.

It is my evening meal that is the offending meal 1st thing. Yest I woke up at 5am and it affected me for a few hours, today it started at 8am. I think I will just get up earlier & take an Imodium to save embarrassment! It isn't that bad as fairly infrequent, it just will be Sod's law I will need to go when midway between the 2 schools!

Sorry to all as I am not usually whingey about ailments as am hardly ever ill, I just seem to have a variety of side effects & cannot believe how grotty so many more minor things can make you feel when hit with them at once. Sorry though as am sure everyone is having their own issues & side effects to deal with & nobody wants to hear the continued saga of my bottom! I am annoying myself by going on about it, although it is good to get solutions/tips to deal with some of the side effects on here too.

noodles whinging about cancer/side effects is literally what this thread is for! I'm sorry it's causing so much stress though. Definitely keep up the Imodium. There are various foods that can help too - stick to stodgy white carbs, anything with gelatine in, bananas I think are meant to help...

purple take it easy for the rest of the day. I'm very impressed you made it to Tesco. I also need a sit down after going upstairs. It's a bit depressing isn't it! Definitely try and arrange online delivery for next time if you can - no point wasting your very precious energy on anything that can be done by someone else :)

TQ I hope you have a lovely, lazy day ready for a busy week

chase I'm glad your skin is recovering from the radiotherapy and that the Tamoxifen isn't too horrendous - will you be on that for five or ten years?!

Minnie that's very good news, in Cancerland anyway!

ranout it's lovely to get out and feel normal isn't it :)

I never bothered with head scarves. Thinking I might need to get my beanies out again though. My hair is looking pitifully thin!

Thanks for the tips Leslie I have eaten really plain food, but will have a banana on toast for tea & keep everything crossed for the morning!

Any tips for nosebleeds too please? Stopping them or doing something to avoid them? After posting I bent over to pick something up & another one started & I have only just managed to get it under control after about 40 mins. The kids are upset as it looks like I have murdered someone in the bathroom now. My youngest said "Mummy I have had enough of this blood now, can you stop it please?" Which made me chuckle whilst attempting to not drip blood on anything important. Tissues stuffed up my nose were fairly ineffective as it was really heavy & no idea where it came from or why really. I may give chemo ward a call 2mo & see if they have any advice.

On the subject of beanies, I love mine. I haven't attempted a headscarf & don't think I will as too much material for me. I too have some great woolly hats for over my beanies when the weather gets colder which I am looking forward to wearing.

purple I meant to put in a unicorn card from my daughter with the sweets & totally forgot, so sorry for that. She loves unicorns too & wants to be a unicorn when she grows up and keeps announcing who she will let ride her when she is older. I keep trying to get her to word it differently as it sounds so dodgy, but she is meaning as she will be a unicorn obvs. Have told her now only fairies ride unicorns so she cannot offer lifts to all her boyfriends.... Hopefully that will put a stop to her suddenly saying "I will let Jake ride me when I am older" and other such phrases!!

noodles hopefully that phase will end quickly before anyone is too appalled!

No tips for the nosebleeds I'm afraid. It's probably because the chemo has lowered your platelets. Do phone them as it sounds like yours are quite extreme. But I don't think there's much to be done really (apart from a blood transfusion if it gets serious). They might adjust your dose if it keeps happening. I had them quite badly at first and then they calmed down. I guess my body got used to it. My oncologist just shrugged!

I normally do an online shop but stupidly thought it's just a slow walk round Tesco and I need to get myself out of the house. Not my brightest idea. I thought with it being nearly a week since chemo that I was over the worst

Noodles your DD sounds absolutely adorable. They do come out with some funny stuff at that age I miss mine being all cute wanting to be a grass cutter when he grew up

Sorry just reading/typing this quickly...

Sorry re PIP @Pandoraslastchance - I get it (a decent rate) but I know that awarding of it is inconsistent and arbitrary. A friend of mine got a lower rate than me despite having a much worse diagnosis. However, she did the forms herself and presented herself as a 'coper'

There seems to be a worryingly inconsistent approach coming from Macmillan too - they told me I would get nothing but then I was helped by a particularly tenacious support worker via the school who helped with the forms. I got awarded PIP and I'm nowhere near incurable.

I think I'm going to raise this with Macmillan as it's a big deal. I used to be a big earner back in the day but the small sum I get paid each month feels like a fortune because it covers a lot of essentials and without it we would be slightly fucked.

@ranoutofquinoaandprosecco re cold capping - I did one session then gave up as it made chemo sessions too long (childcare was tricky). There is an overall success rate but then apparently a lot can hinge on how a practitioner has been trained to fit the cap (I know of someone in the industry and have had some useful info). Looking back, I still feel a bit ambivalent about it because the loss of brows/lashes/nose hair were a nuisance too and coldcapping wasn't going to help that!

Thanks @EagleRay I would rather a coldcap for nostrils and eyebrows and eyelashes! Interestingly it's not falling out today, yesterday must have been shedding day. I think give it another go this time but also try and get in with the hairdresser for in a couple of weeks and if there's anything left go super short and if there isn't get them to shave it off. I'd ask my DH as he shaves his head but I don't think he'll be comfortable doing it. My picc line makes him feel funny!! On the flip side he is getting good with the cooking if I tell him what I fancy!
Hope you've all had as good a weekend as possible everyone.

How do I look at Direct messages?!

If you're on the website, go to the top and click My Mumsnet, then Inbox.

She is great and comes out with corkers on a daily basis purple I could write a book filled with the things she comes out with.
My elder daughter is very very sweet, not as much mischief, but really loving and writes fabulous letters to the fairies in her room!

Thanks for the advice Lesley I will call the chemo ward 2mo to update them. Looking online, I think I did everything wrong to stop it, should have pinched my nose for 10 mins apparently - so that probably didn't help. Also ibuprofen is not good to take & I have had some today, so prob best to stick to paracetamol if I can as a pain relief.

ranout my hairdresser used to provide a wig service for nhs & told me a lot of people have massive bald patches from ill fitting cold caps, although the nurses on the ward say the cold caps are much better these days than they were when she did that. Apparently the success rate is around 50% with cold cap. It used to be around 30% apparently. This is all anecdotal info from nurses on my first chemo ward...
I went for a close crop before chemo and it was really noticable as soon as it started thinning. I did that to put less weight on the hair follicles & also thought if it falls out, I won't be as upset seeing short hair fall out. I do wonder if I did the right thing as it looked horrid when it thinned, although I may have found it harder to shave it off had it still been shoulder length. My friend did it with some clippers she had borrowed. I was glad to do that at home rather than in a hair salon in all honesty as I did expect to cry. I actually spent the 24 hours before shaving it in tears as it looked do awful & then was nearly relieved when my head was shaved instead.

Hi @noodles44 kids are fab! My DS (4) likes my wig but only when it's on back to front and my DD (7) likes my headscarf!
I think I'll coldcap this time as I'm not sure if I'll have 4 more sessions or none after this one but ask my hairdressers if I've still got hair in a couple of weeks to take it really short anyway. Mine was below my shoulders 4 weeks ago then I had it chopped to a long pixie mainly so it wouldn't be too much of a difference for the kids. I'm too tight to order more than one beanie at the moment until I know if I'll need them for definite. Can you tell I'm from Yorkshire!

LeslieI am on tamoxifen for 5 years. Hooe your new mattress is comfy

Typically my hair is just starting to grow back but I'm guessing it'll all be gone again by the end of next week which is not a bad thing as I look like a chicken that hasn't been plucked properly at the minute as it's growing back patchy

I have some headscarves that I don't use if anybody would like them. I promise I don't have nits

It sounds like they'd be very cold nits if you did have them purple frustrating that it's falling out again though

chase that's good :) yes, it seems to be. And it has a 100 day free trial so I can always send it back if I change my mind not sure what they do with them then!

noodles yes you're meant to pinch just below the hard boney bit. I always get bored and stop I forgot to say that one thing I've found that helps a bit is blowing my nose with a cotton handkerchief rather than tissues. I used to get a very dry, sore nose and also the nosebleeds. Tissues are more drying than the handkerchief. Though it makes me feel like an old lady

ranout that seems like a sensible plan :)

Goodnight lacies. I hope you all sleep well.

Hello ladies!

I’m a total newbie to Mumsnet, 42, and I have just found a lump in my breast around the lymph node area.

I posted a question on another thread and someone directed me here. Great to see something dedicated to this subject with many supportive and kind women and so glad to know I’m not alone because I’m panicking!

The question I had was whether a private breast scan result be shared with my GP or pending health insurance provider?

Some back story...

My partner was just about to sign us on to his heath insurance plan at work when I found a lump in my breast. He requested the paperwork on Friday to fill out and send on Monday. I found the lump on Saturday. The timing is just really bad.

The application could take about a week to process but I will be away for work for two weeks from next week and quite honestly, I want to know now if it's something sinister so I can cancel my trip and deal with it. I could get a scan done and get results on the same day.

So my question is: If I have a scan done privately, will this in any way be shared with my GP and/or would the insurance be able to find out that I had the scan?

I’m not opposed to NHS treatment but I would like the option to go private should I need longer treatment and feel more comfortable with the idea of private.

I should add that my thinking is....

Should I get a private scan and the results are not good, then I could cancel my trip, wait for the health insurance to be approved (probably about a week) and then arrange a check up through the insurance to (re)start the process through them.

I just really want the piece of mind this week because I will be a bag of nerves for 2 weeks while I’m away not knowing and I do want to be able to choice private insurance if I am not happy with the NHS.

The private clinic can offer same day scan as well as biopsy.

Hello Heidi no idea about private insurance unfortunately but hopefully someone will be along soon with advise. I had a breast lump and was seen by the NHS who do the mammogram/ultrasound/biopsy all at the same appointment

9 out of 10 lumps are totally harmless, try to keep that in mind

Good morning

Sorry I don't know anything about private insurance either heidi. But as purple says there's a very good chance that it's harmless, so hopefully all of the worry will be for nothing :)

You could phone the private clinic you were planning to visit and ask who they share the information with.

Personally I'd probably be tempted to get that paperwork submitted ASAP and then start tests after that, but I don't know if there's a period you have to wait before you can start using the insurance? And I'm not suggesting that's a particularly healthy approach to take either :)

purple how are you feeling today?

Has anyone got appointments etc this week? Sorry, I've dropped the ball a bit

noodles I hope you survived the school run

I have done some retail therapy. If I'm going to be mooching around at home I might as well do it in sparkly slippers

I think I have yet ANOTHER water infection but can't get into the doctors today as they're busy. On the plus side I don't have to get changed out of my pyjamas today.

Ooh I love a nice pair of slippers, all I seem to buy lately are pyjamas and slippers as that's what I spent most of my time in. I'm currently wearing sparkly unicorn slippers

I think TQ has her scan on Thursday. Not sure about anyone else with appointments. I'm sure there is but I have a memory like a sieve at the minute. I'll blame chemo brain

Ouch. Don't they prioritise you because you've got cancer? My surgery are brilliant and always manage to squeeze me in. It might be worth phoning the chemo unit otherwise because you don't want it to get worse and delay chemo or end up in hospital

I'm still in my pyjamas too. I will get up and dressed sooooon... mostly because I also ordered some new shoes so I want to try those on

@purpleunicorns I agree with @WhatWouldLeslieKnopeDo phone the unit they should fit you in.

Ladies I'm loving the slipper shopping. I picked up some animal slipper socks for the chemo lounge tomorrow. I am not wearing my shoes all day, might as well start a new trend!

@heidimumsy I don't know about the insurance but I know that my DH sorted ours out after diagnosis and I'm covered for anything but my cancer until 5 years have passed. As @WhatWouldLeslieKnopeDo said I suppose you either get the paperwork in quickly and don't mention it if you feel you can.

Again as others have said most lumps aren't dodgy so fingers crossed you've got a non dodgy one.

Thanks for all the helpful advise ladies!

Does anyone know how long would it take to be seen by a specialist on the NHS vs Private Insurance - would you still need to go to your GP for a referral first anyway?

Heidi if they suspect cancer you will be seen within 2 weeks on the NHS (I'm assuming you're in England, it may be different if you're in Scotland) it's unlikely you'll be seen sooner than that. Not sure about going private, I've had a quick google and lots of people are being seen within the week but others are having to wait 2 weeks anyway

Ranout it's a shame they don't have chemo beds rather than chairs on chemo day. I would totally turn up in my pyjamas

Leslie I'm not sure if they prioritise cancer patients. I don't want to be THAT person who rings up and demands to be seen as I do have cancer. Luckily it's not too bad at the minute just a bit uncomfortable, I'll make more of an issue tomorrow if they don't give me an appointment
Have you found out your scan results or what treatment you'll be trying next?

Namechange how are you doing?

And in the next enthralling story of my super exciting life I have managed to go up and downstairs without needing a lie down! It's definitely the small things that make me grateful now