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

Leslie I have no idea actually if the thymoma is benign, it didn’t occur to me to ask! Crikey I’m a plonker. The consultant seemed relatively dismissive of it in favour of discussing the stomach thing so maybe? Ill ask the oncologist next week. I suppose I’m quite lucky in that both cancers are rare so the oncology team are likely to be all over me just because I’m interesting 😁

Nope, no idea which drugs yet but despite keeping my hair apparently I’m going to feel grim. Bleurgh.

tsonlyme it's hardly surprising you didn't ask given how much you had to take in! If they're treating it with surgery and don't think it's urgent then hopefully it is benign. The Macmillan website says that most are. I have an unusual condition too. A few times when I went to A&E I'd get random doctors appearing and saying "oh so you're Leslie Knope. It's nice to put a face to the name" they'd used me as a teaching case or something. I guess that's how celebrities feel

I did say to my partner as we walked away from the hospital ‘well I feel quite special now’ and burst out laughing. Humour in everything, I really have no boundaries

Not at all bossy Leslie, all information is very much appreciated! I didn't realise there was no feeling so I was expecting it to hurt when they pull the stitches out
I ordered some black stoma bags, they're quite cool. Well as cool as stoma bags can get
Hope you enjoy your holiday

Thanks ladies, sat waiting to be seen now. Heart a bit racey but I really think everything is fine 😊

Thank you Leslie I didn't really consider the bowel prep might still be an issue! Thought I would finish needing the loo the day prior. I'll grab a taxi with DH (he unfortunately doesn't drive!). Probably being bit naive thinking I could catch a bus, drop off DS to friend's and then walk to the hospital from hers. Desperately trying to think what else this could be, chucked up this morning though and struggling sitting in the office with the stomach cramping, really do feel like shit.
Very busy day for you then! Guessing you've got to fit in fresh lot of packing ready for the holiday #2 plus getting chance for friends to pop by? Off anywhere nice?

tsonlyme small silver lining to keeping the hair I guess and dont they say you need humour to help you through it all?

PenApple fingers crossed for you!

Hey All,I'm upright for the longest in days and I'm feeling bright.

Someone asked earlier about taking medication with food. The reason most meds are taken with food is to stop the stomach acid destroying the drugs or to prevent the drugs from destroying the stomach lining so all to do with the absorption rates etc.

Tonight is my last self injection(to boost bone marrow production) dd5 is bloody fascinated and randomly gets the thermometer out to make sure I'm ok.

Working so hard to be positive at home.

Loving the dark humour ladies. I'd like to say that I've taken everything in but I haven't! I have read all your posts though.
Hope everyone's appointments and results go well today.
I feel a bit of a fraud apart from feeling tired so far fingers crossed I feel ok. Have snarled at the DH palmed the kids out and put some washing on, long may this last.
One little thing if anyone else has noticed this or it may just be me a strange chemically smell about me especially in my armpits. It may just be me and peusdo?!
I'll keep reading and welcome the humour.
Ps the taking the steroids before 11.30 seemed to make a difference last night.

Hey all; just checking in from a few days away in London... I seem to be either sick as a dog with the chemo, or feeling fine and like ‘cancer? What cancer?’ - doesn’t seem like there is much middle ground... maybe for the best

ranout I get the sense that I smell weird too, although my partner assured me I don’t... I have found that my sense of smell is super acute especially during eeek one and two after the chemo (I’m on a three week cycle)... I get strong aversions to things like traffic smells, and (weirdly) toast made with brown bread ( again 😂)

My next round of chemo is delayed by a couple of days because I’m having a PICC inserted... so I get a couple of bonus days of feeling ok. I’m half way through my chemo too Noodles... I am struggling to deal with how I feel about this tho - on the one hand glad to be on the home stretch of this ‘bit’... on the other anxious about the mastectomy that comes at the end of it, and whatever is going to follow that.... I think I’m coping by ignoring it when I feel well, and mainly sleeping when I don’t 😏

Anyway, love to all - thinking of everybody on the thread - I read almost every day but I’m not very good at posting!

Aw Pandora how lovely to have your own personal little nurse! :) are you having any side effects from the injections? I'm glad you're feeling better today.

Twittle that's definitely too ambitious a plan, I think! I don't think you'll want to be walking any distance at all. Could DH take DS on the bus to the friend's house earlier in the day, or could you drop him off by taxi on the way? Sorry to be negative! You might be completely empty by then but the timings vary person to person so I wouldn't risk it myself.

purple ooh very fancy. Mine are grey ish. But they work well, which is the main thing. The skin around the stoma still has feelings, though I've found some bits are a bit numb, but the stoma itself doesn't. So it might pinch a tiny bit on the actual skin but it shouldn't really hurt. Hopefully they'll start to dissolve anyway before the nurse comes back :)

Pen thinking of you

tsonlyme if you can laugh then do! I make jokes about it all the time, but I've accidentally made some people cry

ranout you're not a fraud. Hopefully you will escape the worst side effects! I find my sweat and wee smell kind of chemically after my chemo. It's not a particularly offensive smell, but it now makes me feel sick because I associate it with feeling ill from chemo.

Fuzzy good luck with the PICC line - when's that being done? And enjoy your bonus days :)

Friend 1 has been to visit, which was lovely. Friend 2 is coming after lunch. Today will mostly be spent frantically unpacking, washing and repacking!

Well I bid you all farewell!! The last lot of breast feeding has caused some glandular tissue to thicken so it feels like solid masses. Nothing on ultra sound at all so no more tests to be done. Relieved is an understatement.

Thanks to you all for the hand holding & wishing you all the very best for the future

That's wonderful news PenApple

Get yourself out of here Pen and don't come back! . so pleased for you.

Leslie I hope you're feeling better today? Gosh you are gadding around aren't you? I hope you have a fab time wherever you're going.

I'm being lazy today. Bad night's sleep - woke at 3am with a dire rear..

Waving to everyone else...

Aw Pandora your DD sounds adorable hope you've got plenty of other support around you, I take my hat off to anyone who has to deal with chemo while having young children to look after

Fabulous news Pen! Now bugger off and don't come back

After a bit of nagging I have an appointment with my consultant next Wednesday. Fingers crossed I can get back to the chemo soon

Sorry to hear that TQ I hope you feel better soon

I'm going to a festival for the weekend :)

Good news purple :) I had to wait six weeks after my op to resume chemo. Hopefully you can get started again ASAP.

leslie yeah I'll suggest the taxi option or I'll ask my mum, just do not want to worry her so wasn't planning on telling her. Hop the packing goes easy enough, hopefully you have tumble dryer to get the clothes dry quick enough!

Pen that is amazing to read! Wishing you all the best

Bless you TQ hope you get plenty of rest! Have a good snuggle day on the sofa

FX for you purple that you can get back on chemo asap

Have a fab time at the festival Lesley my nausea has been similar to your first chemo, fairly constant for parts & then gradually less until I have a couple of OK days before being back to chemo again. I haven't been sick (yet!!) i am not quite as bad today, but am quaffing chocolate milk for the acid. Plus I keep having hot flushes & sweating all over my head. Chemo is so bloody glamorous!

I am having a sofa day too TQ my Mum & Dad left this am & my ex has taken the kids out for lunch. So far these holidays he has taken them swimming for a couple of hours and come for tea once, so this is a turn up for the books. The house feels very quiet.

Good news pen

purple that will be a result if you can get back onto chemo quickly. Fingers crossed.

fuzzy I am similar in that I don't really know how I feel & am just looking at each stage as it comes. I haven't thought about the op yet, I literally read up on the EC as I started that chemo and will read about the next drugs just before my next one, it is too much to take in. Plus I can ignore the next stage easier if I just focus on what is happening now!

ranout I hope you continue to avoid too many side effects. I have avoided the sore mouth & my stomach could be a lot worse than it is. Annoyingly I have had to shave my legs & armpits... Less annoyingly my eyebrows & eyelashes are still going strong. Have you had any headaches after cold capping? You had a really long day at hospital, my appts with cold cap took a half day with EC and the last one was just over an hour without the cold cap.

twittle Definitely get a lift or taxi. I bet your Mum would also rather know you are going for tests too. I nearly didn't tell my parents before the breast clinic as they went on holiday the day before and I didn't want them worrying whilst on holiday. As it was I ended up telling them and then they were away whilst I waited for the biopsy results. I did downplay what was said until they were home, but I am glad I told them before I had a diagnosis.

Glad you are up & bright today pandora

That is why I haven't said anything to her yet noodles - she is currently on holiday at Disney with my kid sister. She gets back Saturday so I'll tell her Sunday when I see and see if she can take us to the hospital. Glad you are having a nice sofa day, even if the house feels to quiet!

Btw, with the colonoscopy will I be awake? They said I'll be sedated but looking up the stuff online it appears that actually they keep you awake? I am so confused haha.

Brilliant news Penapple

You'll be awake but dopey Twittle :)

Thanks leslie makes sense!

Good news pen!

Leslie the PICC goes in on the 30th, I’m a bit nervous but I loathe the cannula in the hand, and my veins have been very hard and sore with the chemo so I’m hoping it will be better. Hope you enjoy the festival; I’m thinking I may have a couple of days in Edinburgh with DD and my partner with my ‘bonus days’...

Noodles I have been having hot flushes too! Not sure what it’s all about but my thermostat is definitely haywire right now...

to everyone tonight

I'm having hot flushes as well but that's due to the implant that they have me to hopefully save my ovaries,zoladex,I think it's called.

I have given in and got my gp to add prochlorperizine to try to stop this dizziness.

Also been told that if I want reconstruction surgery then I need to lose a lot of weight and have my bmi at 30. I'm currently at bmi 49. how am I supposed to lose weight when I cannot go out due to tiredness/dizziness and im not allowed to work. The lovely breast nurse has got me a 12 week slimming world referral but I'm not going to lose that much weight in 12 weeks.

Unfortunately I eat when stressed and surprisingly my stress levels are ever so slightly elevated. Small pity post.