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 missed a week when I was neutrophenic. Cried my eyes out because it felt like everything was going wrong but the nurses were pretty matter of fact about it being really normal to push the odd session back.

Purple - Can totally sympathise re tiredness. Good idea to ask for your B12 to be checked! Are you taking iron?
A woman sitting next to me at the hospital today told a nurse she had run 15K last week. I had to stop myself from applauding this complete stranger and telling her how awesome she is! I was in awe. I couldn’t run the length of 15 KitKats never mind 15K!
Like you, I don’t mind the delay. I looked at the calendar a week or so ago to mark in the chemo dates at three week intervals. I would have been due to have chemo on the 20th of December which I wasn’t very pleased about. Now it’ll be after Christmas which is much better really.

RanOut - Your husband not saying no to a dog sounds promising! Is it having a puppy that puts him off? If so there are lots of older dogs in rescue that are already housetrained and probably a lot calmer than a young pup. My friend adopted a lovely Chihuahua/Yorkie/terrier cross (Hope I remembered the breeds right) and she’s been no trouble at all. Her owner had died. Very sad. But she has a lovely home now and she’s a brilliant little dog.

INeedABiscuit - Your cat is beautiful. I bet her purring is very soothing. Hope all went well at your appointment today.

Tahiti - Sorry I got my days mixed up and wished you good luck for today. Good luck tomorrow

Leslie - How are you today? Are you still seeing results with the breathing exercises? How’s your knitting going?

Hello to everyone else Hope this nice bright weather is keeping everyone cheered up. x

Yes I'm taking 3 iron tablets a day. The constipation isn't much fun, although it's much better than having dire rear when I have a stoma Note to self: put a new bag on as soon as I've taken the old one off instead of faffing about brushing my teeth

Tahiti thank you for reading. Keeping everything crossed for you.

Purple try not to worry about chemo delays, I've learned that in the scheme of things they don't make any difference.

Aimlessly had my op in the Churchill. It was awful. The nurses were unpleasant and unsympathetic in both the recovery room and afterwards. The epidural stopped on about day 3 at 2am and they didn't give me any other pain relief. When the consultants did their rounds they made a fuss about it and the nurses gave me so much other stuff that I was sick. I was told it was my fault my pain wasn't managed well and I should have asked for something earlier... . And this was all under private treatment as the NHS wouldn't / couldn't give me a date within my chemo-free window. So much stress I cannot even begin to express it.

I am knackered today (unsurprisingly). I went to Westonbirt Arboretum, which was amazing. We had a free guided walk by a 75+ something volunteer who had to cut it short after 1.5 hours as we had exceeded our time! Everyone was fascinated and 200% engaged.
I had to sit out the afternoon walk with my friends and sit in the sun, such hardship!

My 59 year old self had reached my limits at the end of the 1.5 hours... I was/am unashamedly jealous of the volunteer for her good health. And I keep seeing all those fucking ads about obesity driving cancer rates. I was active, fit and slim all my life until I hit 48, when middle-age spread hit with a vengeance, yet apparently it's completely my fault I've got cancer. . So how come so many 'thin' people I know have cancer and so many 'fat' people don't?

You can tell I'm in a bad mood!

Oh no I feel bad now for saying I really like the Churchill! I’ve only experienced the Day Treatment Unit and upper GI so far but everyone has been so lovely.

Why did you have to go private to have surgery at a time that was safe? That is nuts!

Oh and I HATE those ads. Especially as the bloody cancer treatment has made me PUT on weight which makes me feel like problem are judging me even more

I tried to add to the cute animal photos but the only one I can find of DCat is brown fluffy cat on brown fluffy blanket.

The Westonbirt Arboretum sounds amazing TQ.

Goodness TQ that sounds horrendous!

My epidural dislodged during the night too but the nurses were fantastic and kept calling and calling until an anaesthetist came to see me. Unfortunately they couldn’t put another in but I had a fentanyl pump and I think they upped the dosage if I remember rightly. I was in a bit of a state really so can’t remember but they did everything they could to help. That was at Basingstoke. There are only two places in the UK that deal with appendix cancer. Basingstoke and Christie’s in Manchester.

Have you talked to the Churchill’s PALS department about your treatment that night? They way they deal with dislodged epidurals really needs reviewing and the bedside manner of the nurses to a patient in a lot of pain needs to change too. I am so sorry to hear that you were treated like that. It’s disgraceful.

Purple - I do think you’re brave brushing your teeth without a bag on! That’s living life on the edge you wild woman you!
My stoma (The angry little foreskin as I call it) seems to go into overdrive once the bag is off so I only ever take it off in the shower, give it a good wash then quickly dry the area around it with a dry flannel and put another bag on immediately. How long have you had your stoma? I can’t remember if you said it’s permanent or if you’ll have it reversed?

Agree with you about the iron. I take it too and like that it stops things getting too watery. Also, being so black makes it look less poop like. It wouldn’t bother me now but in the early days I hated the sight of what came out but found when it turned black I didn’t mind as much. Silly really.

TQ the thing about stats is that they work on a population level... and of course we are all individuals! I totally get why people end up feeling mad or guilty tho (I have been busy blaming myself for my breast cancer because I used to drink too much - may be the case/maybe not, but I’m trying not to dwell on it...) God knows we have enough sticks to beat ourselves with....

Loving the furry friends pics - here’s mine; greyhound; she looks pretty normal here but in reality is a proper daft bugger, it’s a good job too or she might be in with a chance of catching the squirrels she loves to chase 😂

Dexamethasone - I’ve been taking mine at 8 and 2 but now I know a 4 hour gap is good, I might be ok with a chance at a better nights sleep!

Sorry this is a patchy post - I’m crap at scrolling back and checking on names and chat... I’m on day 6 here of chemo cycle, and glad to be perking up a little finally... I had a couple of days this cycle when I was seriously down - feeling so pessimistic, and, well, that kind of sad/doom feeling iykwim. I’m not sure how much of it is ‘me’ and how much is ‘chemo’... it scares me to feel so down tbh. Glad I have the Breast Cancer Care workshop this weekend so I can talk to others in the same boat face to face

Love to all this evening; glad some are out enjoying some sunshine!

@FuzzyWhiteLegs your canine is adorable. Also interesting what you say about wondering if you drank too much. I definitely went over the guidelines but ate well, exercised am a size 12 so not overweight. I think it's best not to dwell and just enjoy each day at a time now. I had a drive today in the sun apart of my work and for once I just enjoyed it, didn't care how long it took!
I also know what you mean about the horrid moods. I had one one Sunday, I wanted to be out and about but knew I would knacker myself so stayed in and was sad. Wish I'd given myself a kick up the booty as my 7 year old would say!

Aimless I think I've had it about 5 weeks now, hence being silly and not putting a bag straight on. Lesson learnt! I think it'll probably end up being a permanent one, I don't really mind as it doesn't bother me too much @ angry little foreskin. The nurses named mine Boris

Haha - maybe a kick up the booty is exactly what I need ranout! ‘Enjoy (or deal with) one day at a time’ is a damn good motto (yes I used to drink a lot too much - I have a lot to thank the Dry threads here for!!)

Apologies Namechange and Aimlessly! I got your comments mixed up . My epidural wasn't dislodged it just came to an end. I had it after my hysterectomy & delbulking and it was only supposed to be in for 3 or 4 days (can't remember now).

I made huge complaint to PALS about no-one answering the phone, the lack of appointment etc and got the usual crap back - they just repeated my complaint back to me and did fuck all about it. Privately, my consultant said it had gone to the highest level and changes would be made but it was of no use to me at that point. And who do you believe? PALS were utterly useless and treated me like an imbecile.

Anyway,... more pet pictures required!

Good evening all

Fuzzy I'm glad you're on the up after chemo I used to feel really down too in my first few chemo cycles. I'd just lie in bed waiting for time to pass as I couldn't even summon up the energy to watch telly or anything. After the first couple of times I knew to expect it and that it would pass, which helped a bit. It was always the same days of the cycle. If you're finding it too much to cope with though you could speak to your GP about medication and/or counselling.

Aimlessly great that you won't have chemo just before Christmas. Yes, the breathing exercises still seem to be helping, thank you. And my knitting is progressing well - about twenty rows to go and then a border. It increases by four stitches every other row so then it takes longer, but I'm sure I'll be finished soon ish :) do you knit too? Sorry, you probably said, but I don't have the best memory these days!

And that reminds me... ranout what did you make in your crochet class? And do you think you'll continue with crochet?

TQ the arboretum sounds amazing. I hope you've got your feet up and a glass of wine in hand this evening :)

Tahiti all the very best for tomorrow

I generally ignore all the stuff about what causes cancer. If it helps at all, I know exactly what caused my cancer. I have a genetic condition called FAP. I had a 100% chance of developing cancer unless I'd had preventative surgery, which I didn't as the FAP was diagnosed at the same time as my cancer. (I'm the first in my family to have the mutation, thank goodness.) But knowing what caused the cancer hasn't really made any difference, except that I can just shrug and roll my eyes whenever I see anything blamey. For most people it's just random bad luck.

Waving to everyone

Thanks Leslie - I think I was expecting the down days this cycle, as I’ve had some crazy strops the last few cycles on those days too (days 4 and 5)... you’d think it would be something they would warn about in the massive long list of SEs wouldn’t you!!

Fuzzy day 4 and 5 are always the worst days of my chemo cycle. I can barely get out of bed I feel so rubbish but I tend to pick up a bit on day 6

Dear all , thank you for being so kind and caring as follow up to my posts [ flowers] 💐 🌹 🌷 💐

I’ve had the meeting with the consultant and very lucky that all good ,no spread . Radiotherapy only and Lanzarole for 5 years. Just nervous about side effects as I’m already feeling horribly nauseous and headachey with vertigo and bad hot spells and not on anything yet !
she wants me to start the lanzarole immediately

Thank you for being such a support and sending best wishes to everyone who hasn’t had such good results or news - prognosis thinking of you lots .... 💐

Ineedabiscuit that's brilliant news! As far as cancer news can be anyway I've had radiotherapy and I had no side effects at all from it other than being tired from having to drive to the hospital every day. Have they said when you'll start the radiotherapy? There's a cream called MooGoo which is really good just incase it does affect your skin

Delighted for you.

No competitive cancer here! I think we’re all pretty happy to hear good news for anyone in our little crew.

I also had no radiotherapy side effects. was the easiest bit for sure. So I wouldn’t worry about that necessarily, just see how you go.

Yay Ineedabiscuit! Sending you lots of biscuits.

Good news Ineedabiscuit hopefully the side effects will be minimal.

Fuzzy I hope you feel better today. Day 5 and 6 are usually my worst days.

Hi everyone,

Sorry I haven't been posting, I feel like I have slept solidly for the last few days! Loving all the pet pics, I think I have included mine (but will try again if it doesn't upload correctly) My dog definitely hung around me a lot when I was diagnosed, he is not a lap dog usually, but was around that time & hardly left my side. He is a scruffy bitsa (bitsa dachshund, border terrier & Jack Russell I think!) the cat bosses him around though...

Great news Ineedabiscuit

I have a top tip if anyone is doing those injections for boosting white blood cells after chemo. I found that on certain days my muscles went quite spasmy and odd and was told it was these injections clashing with the chemo (& to take pain relief if needed) the nurse who did my last chemo asked what time of day I do the injection (it was 1st thing in the am so I remembered) she suggested doing them before bed, so I was asleep through the most of the effects. It seems to have worked this round, not sure if the time I injected is why, but if it helps anyone else too I thought I would mention it.

I hope everyone is ok, I have read so many posts I cannot remember who wrote what, apologies as although my return button seems to be working again, my iPad still loses my posts if I try to scroll too far back.

ranout was it today you were back at hospital? Good luck if so.

purple I am sure that sort of stoma mishap only happens once before you change your routine with it! Can you eat lots of plums as a natural remedy to the constipation caused by the iron tablets?

I hope everyone has a good day. I have slept all morning and am starting to feel a bit more like me.

Ooh yes good luck/hope it went well ranout

Sleep is often the best way to deal with side effects I find, noodles. It's great that the injections haven't been so problematic this time round :)

I’m feeling much brighter in myself today thanks leslie and purple - just fatigued, but that’s par for the course I guess!

Yay! To good news ineed

Noodles I think we are on similar chemo cycles, so good to hear you’re feeling better too...

Good afternoon everyone.

Top tip noodles, I'm going to need it.

So MRI scan showed a very small reduction in the tumour, however when the consultant had a feel she could definitely feel a change and said she thought my nipple had also popped out which is a good thing!?! I told her I was anxious about the effects of Docetaxel and she was great went out the room twice to speak to another consultant! We've agreed 1 one round of EC then 1 of Docetaxel, MRI then 2 more Docetaxel. If we did surgery now it would definitely be a mastectomy followed by chemo post op and I think I'd rather try all the chemo now!
Glad all those that had had chemo recently are coming out the other end.
Loving the furry photos I'll try and get my felines to oblige later on!