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

Flippy what a miserable woman. When I had my surgery last year I had a bad reaction a few days later. I started throwing up/retching about 11am and didn't stop until around 3am the next morning. Obviously it was hugely annoying for the others on the ward but there wasn't anything I could do and the medics were pumping me full of every drug they could think of and nothimg worked. I felt really guilty for disturbing everyone. The woman next to me would shout at me every time I retched a private room became free and obviously she thought she was going to get it. The look on her face when they wheeled me past her bed into my lovely private room was a sight to behold! and a much better solution all round as then I wasn't disturbing anyone. I have had the boots too. Thankfully not at the same time as the retching! They barely make a noise compared to other equipment you could've had. It's mind boggling. Even if she didn't know the exact reason you needed the boots, they're obviously medical equipment, which nobody provides just for fun. Did she really expect them to endanger your health for her "comfort"? I hope you're recovering well from the oophrectomy

noodles is it Emend? Three capsules. Epirubicin is one of the chemo drugs - the bright red one. Anyway, I hope it helps your nausea and that the new drug doesn't have nasty side effects I get the saline taste from a cannula too. It's a bit bizarre. Luckily no need to decide about an op as it's not an option for me anyway :)

Fuzzy I'm glad your PICC line went OK and has already made itself useful :) definitely try and do fun things when you can. It gives you a bit of a boost to help cope with the rubbish days. I try to force myself as it's all downhill from here really so I need to squeeze as much fun out of my time now as possible. When I had chemo before (when it was stage 3) it was just six months so I didn't really do much a lot of the time. I felt a lot more unwell though, and I had the luxury of going back to "normal" afterwards.

purple TV in your room is a great idea :) I'm mattress shopping at the moment as I spend so much time in bed I might as well be comfortable! Anything we can do to make the bad days more bearable I reckon

TQ it's definitely worth asking your consultant if they think there would be any better options available privately

TwittleBee good luck with the bowel prep. It's gross, but you can do it :)

I'm sure I've missed some people but my iPad is being a pain again so I'll leave it there. I'm waving to everyone.

I didn't really sleep in the night so I've been catching up this morning. Just having some chocolate milk then I'd better get up!

Leslie before forking our for a new mattress have a look at the memory foam mattress toppers. I got a 4 inch thick king size one from amazon for about £60 and it's the best money I've ever spent

Good morning lacies. I've not been on much this week I don't know where the time goes!
@WhatWouldLeslieKnopeDo hope your feeling ok and I can't believe how much you remember about us all!
@FlippyNeck it always amazes me how rude people can be in hospital. I'm a bit believer in karma so let's hope the whingeing woman has a something come and bite her on her bottom!
@noodles44 how your feeling? I hope the side effects aren't too bad.
@purpleunicorns tv sounds like a great idea I managed to talk my DH into amazon prime last night as I want to watch Marvellous Mrs Maisel!
@TwittleBee good luck with your procedure.
@plannedshock thinking of you.
@Pandoraslastchance how are you doing?
If I've missed anyone, sorry! I do read all the posts though.

I'm feeling pretty good and a bit of a fraud been to Tesco's, snarled at the kids and DH and contemplating whether or not a glass of wine this evening would be in order! Apart from pretty bad constipation I've managed very well with my first round of chemo and long may that last.

Thanks for asking Noodles I'm now on more antibiotics for an abscess. The amount I've taken I'll be very surprised if they actually still work and I'm not super resistant to them by now Glad you're not feeling as nauseous this time

ranout long may it last indeed enjoy the wine if you decide to go for it! I'm feeling much better thanks :)

purple thanks but I've tried one and just couldn't get on with it. I find memory foam a bit overwhelming. I've found a nice mattress that I think will suit me. I just want to try it one more time before I buy it even comes with a free fancy pillow!

I'm hungry. Hmph. Fluid diet is getting boring! One more day. I'm allowed soup now, I think. But it's not as much fun without a nice bit of bread to mop it up

Oh no purple sorry about the abscess! will that affect your chemo? I hope not

Oh I hope it doesn't stop my chemo. They didn't say it would and I'm hoping the antibiotics will be working by Monday.

My DH talked me into getting feather pillows which are lovely until you get woken up at 2:00 in the morning with a feather stuck in your eye

Oh no! We have some feather cushions and they're always moulting. So annoying and prickly. Sorry I didn't mean to worry you! I'm sure it'll be fine by Monday

I went to try out the mattress I'd chosen and it's very comfortable. Rushed home to order it as they had a much better deal on the website and no members of staff to be found in the shop but it's now out of stock. I only checked this morning. Hmph. I'm in quite a bad mood about it now

So it's coming up 3 hours since I started taking Klean-prep and I still haven't been to the loo! My belly bloody hurts and I look like I'm about to pop with all this fluid in me now haha. Bit worried as feel really horrid with it all.

purple haha about the feather pillows, I bloody love them and feather anything but the prickles of feathers are such a down side!

Bloody typical and frustrating leslie ! Hopefully you'll find another good one soon?

Oh no Leslie is it a brand of mattress? We could help you look online if it is. If not could you reserve one for when it comes back in stock?

That sounds awful Twittle, maybe try a hot bath and see if that gets things moving? Not sure if it's the same but Movicol normally takes 4-6 hours to start working

purple it claims it should take 1-2 hours on the leaflet but after 3 hours to give the hospital a call. So gave them a ring and they said not to worry as can take 12 hours!

Thanks purple that's very kind. It's a Simba one so it's available elsewhere online. But they had a really good deal on John Lewis with extra free things and I was being a cheapskate I'm just being grumpy because I had it all perfectly planned!

TwittleBee I'm sure it'll get working soon. As purple suggests a warm bath might help. Also massaging your abdomen in a circular motion from lower left up and across then down to lower right. I hope you're more comfortable soon

Hi everyone,

Day 2 of new chemo. Docetaxel today and no allergic reaction (whoop whoop!!)
You are right Lesley it is emend - aprepitent. The other was the E part of my 1st EC chemo drug! Your medical knowledge is impressive!
I hope the mattress comes back in stock again soon.

Good luck tonight with the bowel prep and 2mo at the procedure twittle

ranout I was talking to the senior nurse on the chemo unit about fasting as have seen a program recommending the 5:2 fast for health reasons & also when I am on tamoxifen after surgery my side effects could be slower metabolism with a bigger appetite. I asked if it was something She would recommend I start during chemo as have seen a program on I player recommending doing this. She said to keep eating during chemo as it pushed everything through your system quicker if you eatin her opinion, otherwise the chemo sits in your system and you may get a build up of side effects (not that you sound to be overly suffering with any just yet & long may that last!) she is great and has been senior on the chemo ward for ages, so has a lot of experience of people fasting or not for chemo.

pandora how are you doing? Have you had your 2nd chemo yet? Is your daughter still enjoying playing at nurse? I hope you are ok.

I seem to have dispensed with the nausea, only to get an attack of the dire rear just after I finished chemo today. I met a lovely lady to chat to in the chair next to me today who had been on exactly the same drugs as me, has had her op & is doing the radiotherapy now whilst still having her herceptin infusions 3weekly. It was good to chat and get a few tips etc. A welcome change from the man who talked loudly about the texture of liver pate when I was feeling sick yesterday & sang to some of the music on the radio too!

Not as annoying as your neighbour on the ward flippy though. I felt guilty for getting irritated when he got me a cup of tea, so not all bad!

Have a good evening

noodles ugh! Liver pâté man sounds disgusting. What is wrong with people?! I hate that they serve tuna sandwiches and bananas at chemo. They smell so strongly when people are feeling sick! I would ban all strongly smelling foods (and discussion of anything gross). I have Emend too :) sorry to hear about the dire rear. Has that improved? I'm glad today's chemo went better than yesterday's.

That's interesting about the fasting. They always say to drink lots to flush the chemo through.

I've given in and ordered the mattress at full price :) it seems worth it for a comfortable night's sleep!

Good evening ladies

Hi @noodles44 that's interesting the the fasting, I'll only do it if I feel well enough. I'd did drink and drink and drink again! Hope your dire rear has done one.

@WhatWouldLeslieKnopeDo would John Lewis product match for you and order it in? I understand how frustrating to get your mind set on something and then it's not available.

Have a lovely evening lacies

Sorry for all my whinging about a bloody mattress of all things it was John Lewis but they only did the special offer online. But I've bought it directly from Simba and paid the full price and in a week I will be sleeping on my little piece of heaven! they do a 100 day free trial which is pretty handy.

ranout how are you feeling at the moment?

TwittleBee I expect you're feeling a bit grim now, but I hope you manage to get some sleep. Good luck for tomorrow. I'll be thinking of you

Night night lacies

Gosh, moan away Leslie ! We're all human and we're aloud to moan about the little stuff as well as the bigger things...

I feel rubbish and might go back to bed. Awful dire rear in the middle of the night.

OMG ALLOWED not aloud. I told you I was rough.....

@WhatWouldLeslieKnopeDo apart from constipation the last few days which has now resulted in an explosion I'm fine. Think I'll be staying at home today.
@TwitterQueen1 I feel for you dire rear is rank

for you TQ back to bed sounds like a good plan. I didn't sleep much so I slept in this morning. We brave, strong cancer warriors need our sleep

ranout I'm glad the side effects haven't been too bad though that doesn't sound fun at all. Rest up I hope you're being waited on hand and foot!

Good luck TwittleBee, thinking of you planned and waving to all the other lacies

How are you feeling Twittle?

Hope your mattress turns up soon Leslie. Feel free to whinge away, I've lost my favourite purple hat so I too am whinging a lot today. Although I've just ordered another 3 from Anna Bandana to make up for it

Hope your fire rear has eased up TQ and your feeling a bit better today

DIRE rear not fire rear. Unless it is really really bad

Thank you purple and leslie . Feeling like shit. Colonoscopy had to be abdoned because i was in so much pain despite them giving me everything they could. Consultant came to give be a report after the horrid ordeal and said there was distorting of the colon and it was narrower than it should be. He's sending me for a CT of there and on my lungs too as he isn't happy with my bloods and weight and how the colonoscopy went. I'm still in agony now, been sick a few times due to it. Feel so pathetic.

How is everyone else feeling today?

Sorry to ask, but is it also normal for intense shoulder pain radiating into arm and neck after a colonoscopy?

Aw Twittle did they say how long you'll have to wait for your CT scan? I don't THINK shoulder pain is normal so I'd give them a ring in the morning if it's still bothering you. Try a hot water bottle on it if you have one, it should hopefully ease the pain a bit.
And you're definitely not pathetic! Be kind to yourself