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

Purple sounds lovely. And very sensible about trying not to worry him for as long as you can. Mums eh?

Ladies, I have absolutely no words for what you’re all going through. I’ve ended up here through TQ’s post about BTFS (I added my own letter to that as I’ve always hated it for similar reasons.)
FWIW I will keep you all in my thoughts and prayers and I will try never to moan about mundane shit ever again. I will try to appreciate my loved ones who are healthy. This thread has truly humbled me and I’m ashamed of myself for some of the crap that I’ve moaned about of late all my life
apologies for jumping on your thread but I followed a link then I couldn’t ignore what I read.
Please accept my kindest thoughts and love to you all. I cannot begin to imagine what you all go through, and your families. I truly hope that this doesn’t sound trite in any way. If it does, please accept my apologies for intruding and delete/report.

Hi Lacies! Sorry for the radio silence - just on hols now (staycation!) so finally a moment of peace to write!

I agree Twitter - I find ‘brave’ so patronising even though I know it’s not meant that way! And the BTS thing is really odd and cringy.

planned good to hear from you. Have been thinking about you lots and hope you can feel all our thoughts in some way! Glad to hear you have good support as that can be hard to come by.

Typically as I have come on here on my iPhone, I now cannot remember who else I was going to mention as I have the memory of a small shrub at the moment but for anyone who is or has had holidays I hope you managed to relax and enjoy!

Will try and write more later! Enjoy the last week of summer holidays Lacies!

purple the box sounds beautiful. I hope you’re feeling better!

Leslie how are you feeling?

noodles I had a vomiting reaction to my second cycle of the same chemo (as the first time!) but not allergic reaction. They are like a well oiled machine though and were so good at treating me quickly. If you tell them that’s what you’re worried about they will show you what they will do if there are any problems and that might help to make you feel calmer?

Icouldbehappy very kind thoughts - not trite at all. Thank you. And I like your letter addition!

Icouldbehappy that's lovely and not trite in the slightest. Don't worry about complaining about mundane stuff, I still do that now and again but DO appreciate good health. It can all change so quickly

Hi everyone, just popping back to see how you lovelies are doing and to check back in.

Purple that box sounds so lovely but cannot imagine how hard that must have been to put together Hope the infection, if it was that in the end, is clearing up?

Addle Hope you are having a lovely Staycation, where abouts you enjoying? We are trying to decide where to consider for next year (usually we end up in Devon)

Knicker same here about the lacies. Hope work is actually okay for you and good luck with the biopsy results!

Hope everyone had a good bank holiday weekend despite the weather not being amazing?

Managed to drag myself into work today despite a pretty crappy couple of nights for sleep and just generally feel so crap. Got a busy next couple of days at work so didnt really have a choice. Just trying to not think too much about the upcoming colonoscopy on Saturday.

Lacies was originally a typo (we have royalmama to thank for it!) but it just sort of stuck :)

noodles I hope you're feeling better today. Which drugs is it? One of mine is quite notorious for causing reactions. I have an atropine injection beforehand and they're always cautious about any side effects during the infusion.

TwittleBee I hope work is providing some distraction

purple are you feeling better today?

I'm waving to everyone. I threw up earlier so I'm feeling a bit grim. It's my adhesions yet again.

I don't think it is an infection, I know I've only been taking the tablets for 2 days but I feel even worse. No energy, feeling sick and I just can't get comfortable despite trying to go back to bed for a bit. I'm seeing my consultant tomorrow and I'm really hoping he starts my chemo really soon

Aw Leslie adhesions must be awful do anti sickness tablets not help?

Good luck on Saturday Twittle. I love your username btw

Did they do a urine dip test? Some antibiotics can make you feel quite grim so hopefully it's that. But it's good you're seeing your consultant so you can discuss it properly

The antisickness tablets generally help, but I find if I don't take them at the right moment they actually make me throw up. To be honest I sometimes find it's better to just throw up and have it over with otherwise I spend the whole day with nausea.

oh bless you purple, as Leslie said though antibiotics can make you feel super horrid - I know I've often felt worse before getting better because of how nauseous and bloated they can make you feel. Hopefully your consultant can shed some light on it for you (and haha thank you for liking my username!)

Thank you Leslie . Bleurgh about you feeling sick, hopefully it wont stick around long for you?

The did a dip test and other than having blood in it he wasn't convinced it was an infection. I'm been sleeping most of the day and fell slightly better. He only gave me 3 days worth of antibiotics so I'm hoping it's them making me feel rubbish although I'm normally fine on antibiotics

Knicker as far as I know its lacies as someone did put that as a typo and it stuck. That was before my time here though

Hi everyone,

purple, addled & Lesley Thanks for the advice around what the effects are. I had a consultant appt today (& met my oncologist consultant for the 1st time as have had her assistant or locus registrar all the other time Since) she was lovely. Really approachable and I was able to ask a few questions about side effects etc. Apparently the nausea should be a lot less, but the main side effect will be joint, muscle and bone pain. Plus probable dire rear as am having a combo of 2 drugs together, which normally causes this when having both. I am having herceptin and docetaxel. I was sent to the chemo ward for bloods as my appt at my local hospital was too late for them to sign me up for chemo as they must do that 48hrs before. So I met a really nice nurse there. I have to stay on the ward for observation after they give me the drug for at least 4&1/2 hrs. I am doing the drugs over 2 days so if I have a reaction, they know which drug I am reacting to. My consultant told me one person in 1000 has an extreme reaction, so I am a lot less worried now. Especially as It was nice to chat with the nurse and going to a new chemo ward also feels more comfortable.

I hope everyone has had a good day. I went to the seaside with my brother & his wife & my kids. I am not feeling sick today, so we went to my favourite Italian and the kids had a scoot on the prom. I am even having a glass of red right now too (which is going down a bit too well) as haven't had any in a long time. It has been lovely to have a normalise kind of day.

purple your box sounds lovely. I am sure it was very heartbreaking to work out what to put in there. I bet you keep adding to it as little things occur to you. I hope your consultant appt gives you good news with regard to restarting chemo and that you start to feel better soon too with this potential infection you are being treated for.

Lesley your adhesions sound really troublesome. I hope you are feeling better since being sick. Sometimes being sick clears the nausea.

twittle I hope you manage to get some decent sleep soon. Everything seems better when you have managed some decent sleep.

Waves & hello to everyone

That should have read locum registrar not locus (predictive text fail!)

Hello everyone,
My drug combination was the same as yours noodle and I also suffered very badly with nausea from day 1 of fec cycle. The side effects from the docetaxel and herceptin didn’t really kick in until day 3/4. The nurse administering the herceptin will keep a close eye on you and I think I was there in total for 6 hours. You are not allowed to leave the chemo ward in that time apart from loo breaks. Like purple, I didn’t have an allergic reaction or have witnessed one. Good luck for Thursday.

Thanks cats I did meet a lady at the look good feel better course who said she had a reaction to both, not sure how severe as we were not able to chat much due to the makeup demo's & I was struggling with nausea a wee bit throughout the course too. I will probably see her 2mo as she will be at the chemo unit in the afternoon.

noodles I'm glad you've had some reassurance :) there's quite often people having their second day when I'm in for chemo as breast cancer chemo is usually the day before bowel at my hospital.

purple I hope your appointment went well

Unfortunately my adhesions are still being troublesome. Bane of my life. Though they are worth it really. Before the surgery I had issues every day and often couldn't leave the house for weeks on end! :)

The district nurses came out in the night and again this morning to give me an antisickness and morphine injection. I've had to postpone my oncologist appointment and tomorrow's chemo. So I still don't have my scan results from July. Hopefully if there was anything horrendous they'd have contacted me...

Aw Leslie I wish there was some miracle cure for your adhesions. I've had a google and the only option seems to be more surgery but surely that could cause more adhesions

I've seen my consultant and he said I was fine to go ahead with chemo and that I should get an appointment through in 2/3 weeks. I had a phone call on the way home and they've managed to get me in at 10:00 this Monday coming.
I'm so pleased although I'm sure I'll be on here at the end of next week complaining about how ill I feel

urgh for you leslie - so rubbish about being in that much pain and really rubbish with how purple is saying about no real option too for the adhesions! Is it something that comes and goes in pain or is this it now for pain?

well good luck with it purple !! Glad it is happening so soon now and hopefully you wont feel too rubbish from it?

Thanks Twittle. I've had one lot of it a few weeks before I had my stoma fitted and I've honestly never felt so poorly in my life but it's the only thing that will hopefully help me live a bit longer. It's crazy looking forward to having bags of poison pumped into your body but needs must and thankfully it's once every 3 weeks so I should have a bit of time feeling ok

hello all.
Leslie I hope you get better very soon. I'm so sorry you're in pain and hope the meds help.
Wishing everyone having chemo all the best. my advice: care for yourself..don't push yourself..you'll have time and effort to do more once you're done. ..I watched LOADS of stand up comedy on my iPad during chemo..it really really helped my state of mind.

Really hope this lot won't be as bad as the previous lot for you then purple ! Is a strange feeling I bet, wishing to get poisoned 🙈 but yeah so many FX that it does help prolong your life for you and maybe you'll get a decent week inbetween of feeling good?

Thank you all. I'm feeling much better :) it's always a bit up and down but hopefully I'm over the very worst of it. I'll just keep myself dosed up on Oramorph for a few days and stick to the fluid only diet again.

Twittle it comes and goes thankfully. How are you feeling today?

purple yes, surgery is the only real treatment option and it's rather a gamble! It might make it better but the new adhesions might be even worse. I think they only consider it if they're causing really serious issues.

I am glad you're able to resume chemo next week. I was thinking it's very soon, but actually the first time round I started chemo exactly three weeks after my second surgery. Hopefully the next cycle will be a bit more bearable - are they adjusting the dose or anything? Presumably some of the horribleness last time was from the fistula rather than the chemo itself?

FuzzyWhiteLegs good luck with your PICC line tomorrow. It should make blood tests and chemo much easier

I hope everyone's having a good evening :)

Could I ask for some advice for a friend? She's 35.

She has a small breast lump which is painful, pain under and down her arm (lymph nodes?), raised white cell count and a yellow discharge from her nipple. She has has a scan and a mammogram and has been told they will keep an eye on it - she will go back in a month. She is terrified. We are not under the NHS. I would have expected a biopsy by now but the dr is saying the lump is too small. The wait and see advice seems a bit off. Any advice? Should she be pushing for more tests?

for all you lovely lacey lasses.

@Twotabbycats good morning this may sound strange but pain in the lump is a really good thing. I have breast cancer and from what I gather it's the non painful lumps which are the ones to watch out for. Can your friend get a second opinion?