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

I’m ridiculously relieved about this veins thing! I keep asking people to touch them and see if they feel hard to them. It’s a really fast way to make people think that you’re losing it. I will stop now!

Oh pandora that really appeals to my sick sense of humour! I can imagine the split second you realised what you’d said and then the relief...

name and Leslie - I wondered after the first cycle whether a picc line would be a good idea as my arm was so sore for so long afterwards but the heat pad helped for cycles 2-4. Can’t stop fiddling about with the blue/green hard lumps on my left hand now though so I probably seem a bit weird too!

namechange that does make you sound a little err eccentric! But you're not imagining it. They harden up and then the needles just bounce off instead of sliding neatly in.

Sorry I didn't mean to worry you addle. Mine have gradually improved over the five years, but they have never gone back to normal. That's very common with any chemo though, not just th oxaliplatin. It's just worth warning the phlebotomist when you go for a blood test and stay warm, do fist squeezes etc. while you wait to try and get them nice and plump :) I hope the lumps go away soon. I didn't get those.

Leslie I’ll totally take eccentric!

It's good you responded so well to it. Hopefully they'll subdue these latest little fuckers realised I sounded like I was congratulating myself for responding to chemo last time like it was getting a swimming badge or something! It’s just hard to get my head around not being allowed more of the drugs which worked last time. But I have lots of faith in my lovely team and they will figure out what I can have I’m sure.

I slept properly for the first time since this incurable bombshell and I feel like a whole different person. I hope it’s something in the air and lots of good nights sleep for everyone. Let’s see if I’m less of a cow in the office today as a result

Good morning lacies

Well, frankly Namechange it would be nice to get badges! I didn't think you meant anything odd by it :)

It makes such a difference to have a medical team you can trust. My oncologist can be quite gruff but I have absolute confidence in him and his team.

I'm glad you slept well. Hopefully your colleagues will be too

I've been awake most of the night. Steroids! I might try and do something vaguely productive today...

Hey all.
Unfortunately my daughter's nursery is too small to do 30 hours for anybody. I at least get all day Mon,Tues and half of wed child free and tbh the youngest is the easiest of my three as she is pretty chilled out plus this nursery are attached to the school that she will.go to in September and it's so practical with drop offs for the middle child. The nursery manager (who knows me well as I nursed her mum a couple of years ago and went above and beyond to sort a number of issues out for them) has said that if we are running late for what ever reason then she'll hold onto youngest for us no questions asked which is lovely.

Mymar, regarding painkillers try ibuprofen and if that doesn't make a difference ask to try naproxen which is a stronger anti-inflammatory (make sure you get some omperazole protect your stomach from damage)
Watch out with gabapentin as it makes a loyof people very drowsy and it can take a while to build up to the correct dosage to make a difference to your symptoms.

I love vienetta and it used to be the best part of the kfc takeaway bundles.

Purple-fuckign hell you don't do things by half.

My chemo went ok. They are still having problems accessing my port. 6 times I was stabbed yesterday. It's a small port that's deeply situated and it's just awkward. I'm not getting nausea with the chemo just dizziness for 3 or 4 days and a dry mouth so I'm drinking gallons of flavoured squash which means lots of peeing so I'm doing plenty of stairs but I'm still not quite up to slimming and certainly not running like someone on this thread.

Atm I'm snuggled up in my fleece blanket with my youngest on the sofabed(we sleep downstairs as we only have a 2 bed house and aren't entitled to a 3 bed)

Right off to plastics in a little while to see exactly how much weight they want me to lose before I can have reconstruction and what the options are for me.

Love to all and sorry if I've forgotten anyone .

Good luck with your appointment pandora

Sorry all the childcare stuff goes right over my head as I don't have children, but I'll chip in if I ever think of something that might be helpful :)

Sorry your port is being a pain. Mine is small and wobbly (a stitch has come out of one corner), but they usually manage to access it first time. It just sometimes refuses to bleed hopefully once it has settled in and the nurses have got used to its foibles it will be more useful! Do you have EMLA cream to numb it if it's getting sore from the repeated stabbings?

Hello again

Just had another read through recent messages to try to get myself up to speed with you all.

There’s lots of humour here despite the subject matter. It’s lovely. Have noticed that all the way through this cancer crap though. Have had some brilliant laughs with Nurses and Drs. It does help.

Goodness Leslie, 21 is young to be diagnosed with bowel cancer. Can I ask how long you’ve had it now?

NameChanged - Yes it does sound like we’re in the same place time wise re the incurable news. How are you? I’m ok and have only had a bit of a cry twice. Once telling my Aunt and the other telling a life long friend. I think I’m more frustrated than anything as it feels like being in limbo. Due to this being a rare cancer no one can tell me what treatments help or how things will go.

Re limbo - It’s silly things really like looking at a new coat a couple of days ago. I like the pink Holly Willoughby coat for M&S at around £50.00 but thought it wouldn’t be terribly warm. Found another pink one l liked on the LK Bennett website but it’s £350.00. Do I want to spend that much if I’ve only got one Winter left? Does anyone else feel like this?

I struggle with the emla cream as I allergic to the tegaderm dressing that goes over the top but the stabbings aren't that bad.

Plastics appointment was good. I'm have g mastectomy with delayed reconstruction as the risks of slow wound healing and risks of infection are too much given my weight. So I will see him again in January after mastectomy. He is planning to do a reconstruction using my own skin and then once I've got my body weight down to 14stone which is bmi 32 be will do a tummy tuck and use the excess of my stomach skin to build me a better boob and then a year later he will do a.bilateral reconstruction to increase the books size and equal them out.

Talk about motivation to lose weight!!!! Plus it gives me longer to lose the weight. So chemo-mastectomy-chemo-radiation-first boob rebuild-second boob rebuild with tummy tuck-boob readjustment.

One thing at a time. Slow and steady. Just as long as I'm around to moan about not being able to go back to work and moan about not having a boob for the short term.

Aimless I do that too, although I'm trying to stop buying stuff as I'm trying to clear the house as much as I can to save people having loads to do when I'm gone. If you can afford the expensive coat then go for it

Good luck for today Pandora let us know how you get on

Does anyone else feel like this?

Oh absolutely but for stupid things! I have only cried once since the news but I nearly lost it when I realised that I had bought 3 years worth of dishwasher tablets (it was a mega deal) and who knows how many I’ll use. Such a strange feeling. I know that in reality no one knows whether they’ll get to the end of 3 years worth of dishwasher tablets, but we’ve got a lot more cause to think about it.

Oh and I’d definitely buy the coat. But I’d probably buy both because I also love Holly W!

NameChanged - Your post made me realise re-newing my CostCo card would be a false economy.

Purple - Yes, I know what you mean about what you leave behind and what others will have to sort through. I’ve got three sons and I can imagine them opening drawers and boxes and saying “Christ, there’s even more make up in here!”

I've gone a bit the opposite way really. I keep thinking there's not much point saving my money now so I might as well treat myself to nice things. I had a bit of an online shopping spree the other day so I'm not sure my postman is best pleased

If you can afford the fancy coat then definitely go for it. I've found I feel the cold a lot more so you want something good and snuggly :) now is this time to spoil yourself a bit.

I went through a phase when I first found out I was incurable when I was obsessed with the use by dates on packaging, wondering if I'd outlast a can of soup

Aimlessly it's coming up for six years since I was diagnosed, but it was treated successfully at first as it was only stage III. Then I had a recurrence just over two years ago now. So I've sort of had it for nearly six years, but some of that time it was just lurking and biding its time. Sneaky little fucker.

I can't remember exactly how old you are but if you're under 50, which I think you said you are (sorry, my iPad hates scrolling back once I've started typing!) you could join the Shine Cancer support group. It's huge so there's almost certainly someone with the same cancer somewhere in there :)

pandora I'm glad you've got a manageable plan for it all. Slow and steady is definitely the way to go!

purple how are you feeling today?

I've been round the supermarket this morning, now taking a little rest!

Ooh Shine looks amazing and there is a network in my city. Has anyone gone to any of their events?

Thank you Leslie. I’m 44. Off to look at the Shine website now.

I'm definitely better than yesterday and slowly getting my appetite back which is helping my energy levels. Although I've got to brace myself going for a wee, it's stings like hell after having a catheter in 😩

Pandora I bet you feel much better having a plan and knowing exactly what's going to happen, plus a tummy tuck is an extra bonus!

Glad you managed to get out of the house Leslie and I LOVE your latest chemo shoes. I've just bought some sketchers, comfiest things ever but I won't be winning any fashion awards with them

I've been to several Shine events. Even met a lacie at one :) there isn't a network near enough for me to attend regularly, sadly. Otherwise I definitely would. I love Shine. If you join the FB group you'll probably be able to identify me if you want to be FB friends!

purple comfort cannot be underestimated. Enjoy your new shoes :) ouch to the post-catheter weeing. I hope it improves soon. Might cystitis sachets help with the stinging?

I didn't know cystitis sachets were a thing I'll definitely get some in if I can find any

They're a bit icky to drink, but they make your wee less acidic. You can get them in Boots or anywhere like that. I always have a packet in my medicine drawer now just in case!

Has anyone read ‘Anti-Cancer’ by David Servan-Schreiber? I have found this easy to read (good for my chemo brain lack of concentration!) and also inspiring - he talks about people diagnosed with incurable cancers and given months to live, but who researched reasons why some people live longer - and then they go on to live for eg 20 years and don’t even die of cancer (Stephen Jay Gould, the scientist, is one example) - not sure if anyone else would find this as fascinating as I have! It outlines the things we need to do to prevent the cancer cells from thriving, and backs it up with science too!

Blimey, it has been busy on here!

I read the thread last night but was tired & ended up going to bed as had been to the supermarket yesterday & done a few more normal things. Same today, have been to the office for a catch up (1st time since diagnosed) and one girl thought my wig was my hair which was dyed as she never saw my crop, so that has made me feel more confident about wearing it. Did a walk at the coast with my friend & our dogs, so am shattered again tonight. Kids are at a local kids disco, so am making the most of a bit of quiet time until they come home! My friend has taken them.

Sorry to read of all the people who are lifers on the thread. Bloody cancer. So many of you are so young too.

I got a book called "take breast cancer off the menu" yesterday and it recommends not just certain foods, but food combinations to make your body a hostile terrain for tumours to spread/grow. It looks quite interesting, but I haven't read that much yet. Mix berries for optimum results as that is better than eating just one type at once is one tip.

Glad to see you are picking up purple have you tried drinking cranberry juice too? That is supposed to be good for uti' S& all things bladder related.

pandora that sounds good to have a plan (& a wee bit more time regarding weight loss) I think I am due to end up with one boob a size smaller than the other after my op if it goes according to the current plan. I did wonder if I could request a nip & tuck to move some flesh up to my boob! I had a c-sect with my eldest and have a little shelf like muffin top above the scar that I cannot get rid of for love nor money!

Lesley I am with you on spending. I have bought a few comfort essentials (a sofa for the end of my kitchen and a footstool so I could be more horizontal in the lounge) they weren't that expensive for what the were, but my attitude has been sod it, I have cancer... That said, I need to not spend too much now, so am not doing any bigger splurges for a while. aimlessly I would buy the expensive coat, go for it. I too seem to be feeling the cold at the moment, so anything that makes you feel better is worth it in my opinion. My brother & his wife bought me a lovely cashmere blend scarf/wrap when they visited, it is huge but I love wearing it when cuddled on the couch, will wear it outside too in winter, but for now it is prob a bit OTT for outside!

ranout how are you feeling today? When will they scan you to see if the chemo is working for you? I hope you have escaped feeling too dreadful. What is the chemo drug you are currently on?

I cannot remember who said about food & my iPad is also not happy about scrolling (& I lose what I have written) but custard tarts were recommended to my Dad when he had cancer as a good way of getting calories in if not feeling like eating much. I have had custard when my mouth has been sore too.

Off to check out the shine website now. Waves & hello to all, sorry to who I have missed off...

Hi everyone just a quick one today. I'm feeling very fortunate after reading everyone's posts but a bit down. I know I shouldn't be. I think realisation has hit, but I know I'm treatable and will sort myself out.
Chemo touch wood again has been fine. Apart from tiredness no side affects. I did fast again, not sure if it helped but it hasn't hindered me either.
Had my hair cut really short on Wednesday as even after cold capping it's shedding quite a lot.
@noodles44 I don't know why but I got myself into a bit of a state after this last chemo since it went ok and was then worrying that the next 4 (if that's the route I go down will be awful) so I didn't look at what chemo I've had! I've made myself look this morning and I've had EC and Docetaxel and I assume that will stay the same for the other 4 sessions. I'll check on Monday when I have my line cleaned.
@noodles44 I'll have a scan the week after next to see how the tumour is behaving the oncologist did think it felt softer when I saw her last week so fingers crossed.
I'm going to try some normality next week and see about a bit of work. I think I need to have my mind on other things and I like spending money! So I'll have a chat with one of my clowns about a few hours then I've got the look good feel great session on Tuesday and an exercise class for cancer patients on Thursday to try!
Sorry for the rant lacies.
Hope you all have as good a weekend as you can and to all if you wondering whether to splash the cash - if it's going to make you happy just do it xx

addle yes, I read that a while back. I've also just finished and am in the process of reviewing (eek!) the follow-up Anticancer Living by Lorenzo Cohen and Alison Jeffries. I felt with both books that they did tend to exaggerate the benefits and I'm not keen on anecdotal data, but it's a very interesting area and there are obviously lots of things we can do to try and improve our outcomes. Anticancer living gives a sort of six step plan to follow. Actually most of it is beneficial for general health rather than just cancer. I briefly tried tai chi after reading the book as it seems to be the wonder cure but I absolutely hated it! I already do some of the stuff they recommend so that made me feel a bit better

noodles I'm glad you've got some bits and bobs to make you more comfortable. The cashmere wrap sounds heavenly.

ranout it's OK to have a wobble. There's always going to be someone with worse news than you. But it doesn't mean what you're going through isn't tough! Well done on ticking off another chemo. I hope the side effects remain minimal. It's good you've got some nice things lined up. Is it a Macmillan exercise class? I went to one and found it really helpful. And LGFB is great fun.

planned sending my good wishes if you're still lurking

I actually slept most of the night despite the steroids so I'm feeling much better this morning :) I hope everyone has a nice Saturday

Ranout we all have a wobble now and then and we dust ourselves off and get on with it the LGFB class is brilliant! You'll get some really good advice on doing your makeup when/if your eyebrows and eyelashes fall out

Glad you had a decent nights sleep Leslie, it really does make a difference.

I've been drinking gallons of water which seems to be helping a bit

I know I shouldn't be ran don’t be nuts. For everyone who posts here there are a host of people with a “better” diagnosis and a host of people with a “worse” one. Everyone will have times of feeling really down or angry about their own diagnosis and treatment. I for one fully support your right to be really quite fed up with this because it’s bloody tough regardless of your stage/type/treatment/news etc. So please have a guilt-free wobble.