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

The patient information leaflet doesn't mention food. Just to take whole with water and don't crush/chew. But I dont know why they recommend with food so I don't know what the risks of not doing it would be.

Thanks @WhatWouldLeslieKnopeDo they are Dexamethasone I've had one at 7 and I'll try one at 12 noon.

I hope you get some sleep in the car.

@ranoutofquinoaandprosecco I don't think I took mine with any food and didn't have any ill effects.

Regarding the poor sleep, I think it was round 4 before I twigged it was the steroids keeping me up all night 😂

When do you plan to start eating again? I had chemo on Thursday mornings and Friday lunchtime was my first meal, usually at a restaurant, then would crash into bed for the weekend (perfectly timed as DP works away and I'm at home small children)

Hi @EagleRay I had chemo yesterday afternoon probably finished around 3.30/4pm but then I managed to brave the cold cap so I left just after 6. I was going to wait for my evening meal.
Did you just order anything or ease yourself in gently?!
Thanks for all the info it's very useful.

Well done on braving the cold cap! I did it for the first session but decided not to continue as it was too hard to juggle childcare (at the time I had a disabled 4yo just starting school and a 2yo at nursery)

I tried to ease myself back into eating with simple, healthy food, mostly vegan, at least for the first meal.

Today you'll probably find that you feel reasonably ok then tomorrow you may feel the effects more. Make a note of how you feel each day and you will start to see a pattern which is useful for organising work, childcare or anything else you need to have covered for future cycles! Having chemo on Thursdays was critical for me as it meant my partner didn't need to take too much time off work (he was using his A/L to care for me)

Thanks @EagleRay my busiest day with the kids is a Tuesday so my DH will need to work from home then and then we'll call in a lot of favours till the weekend! Thanks for all the tips.

Fingers crossed the cold cap works Ranout, I used to take my steroids at 7am and then 11am which seemed to help get some sleep on a night **

Leslie the stoma nurses were lovely although my supposedly dissolvable stitches are not dissolving so she's coming out next week to pull them out. She's signed me up with Fittleworth so I should get a delivery on Friday

That's brilliant Pepper (the weight loss, not the hair loss obviously )

Ugh no idea why that was in bold. I have just woken up to be fair

Sorry if I’ve missed it but how did you get on yesterday at clinic @BravoOscarOscarBravo ?

I’m at breast clinic tomorrow morning but despite my dreams nightmares I’m feeling positive and I’m sure I’ll pop by tomorrow evening to wave goodbye to everyone 😊

Apologies for my absence, I’m not terribly good at keeping up with things like this 😳 and I’ve not been coping terribly well so avoiding the issue and distracting myself.

It’s D-day. Consult appointment this afternoon for full diagnosis and treatment plan, 5 gruelling week’s since the initial tumour was found.
I am cacking my pants.

Good luck today Penapple and TS

Thanks Chase , I’m tomorrow though. Today is pj stuffing face day 😁 (I’ll throw clothes back on for the school run though)

ts 5 weeks?? Is that normal? You must have been climbing the walls. Best of luck today.

@tsonlyme I know it's really hard but I found it easier once I had a plan then it's one day at a time in this house. Let us know what they say.

Good luck Tsonly. I know how scary it is but you'll honestly feel much better once you know what's happening. Come back and let us know what treatment you're having as one of us is likely to have had to same thing so there will be plenty of advice on here if you want it

Waiting for diagnosis or for treatment to start is hard. I didn't cope very well with waiting
It's not long now and as Leslie wisely said, a day makes no difference to the outcome.

Good luck for tomorrow Penapple

Noodles did you manage to get to your Look Good Feel Better appointment?

Good luck tomorrow Pen. Hopefully we'll be waving you off

Leslie yeah I've been reasonably lucky I guess that I haven't had to push for investigations of this, been reading some horrible stories of young people spending years fighting for colonoscopies. I think it's how the professionals are talking about it all that is freaking me out so much, feels very OTT. I've got mine booked in for the 1st Sep so least there isn't long to wait at all, not sure if I'll be okay just to get the bus home after the sedation? Hope you managed to get some sleep okay in the car on way home today btw!

tsonlyme blimey that's a long wait for you. Hope it went as well as it can for you this afternoon with a clear and good progressing plan of action.

PenApple good luck for tomorrow!!

Hi,

I have been mainly lying around feeling rubbish since I last posted, I have been hit with nausea since yesterday plus swollen glands, headache, dire rear & just feeling generally crap. I made it to the look good feel better course yesterday purple but felt decidedly dicky. I got loads of great products, plus was grateful for the tips regarding drawing on eyebrows as have never done that before! I was the youngest there by a fair bit, but was nice to talk to a few ladies on the same treatment, but further along.

I made it to the local hospital today for my PICC dressing change & came over quite peculiar whilst it was redone. I seem to have a weird phobia to look at it when it is being cleaned, I am fine with it usually, but I thought I was going to be sick when the nurse was cleaning it today, the same happened the last twice too. Not sure if it is my general queasiness or the PICC line.

No plans for 2mo, so looking forward to a to day with the kids as they are also whacked from their busy schedule. I think I booked them in for too much stuff for when I pre-empted feeling ropey as they were bushed tonight!

tsonly I hope your appointment went well today.

Good luck for 2mo penapple

I hope you slept on the way home from holiday Lesley and feel less bleurgh

TQ I can't believe they were reluctant to set up a private room for you given the subject. Is it worth writing to them to highlight how they made you feel? The trouble is, it is such an emotional time & actually saying something is hard. I am rubbish at getting my point across if emotional, especially if I am worried I might end up crying and getting upset, also it is who you would be upset on too as I can imagine the security guys would not have been overly sympathetic and you would have felt more uncomfortable. Well done for getting it sorted at last though.

How are you feeling today ranout and pandora?
I hope your next radiotherapy has less hanging around chase It must feel good to be nearly done with the treatment though, my radiotherapy feels a very long way off as I still have 3 months of chemo and then an op before mine. I am just focussing on the fact that after my next chemo I will be over the halfway mark (4 of 7)

I hope everyone has a good nights sleep

Hi Noodles, sorry to read you are feeling rubbish. I had the district nurses attached to my local drs surgery come to my house once a week to flush and change dressing on my picc line. They also took my bloods pre chemo etc. Not sure if this is an option for you, but it was very useful on the days I felt too ill to leave the house.

@noodles44 sorry you've been feeling so rough - have you taken advice from your oncology dept? And how is your temperature? Are you monitoring it? Sorry if I sound overcautious but one thing I quickly learned about chemo was that the only thing that really matters is that if you feel unwell (especially a week or so after chemo when your neutrophils bottom out) you get medical attention ASAP

And I don't blame you for feeling odd around medical procedures! The sight of red liquid made me feel extremely nauseous for a long time after treatment finished!

Sorry you’re feeling so crap Noodle 😟

Best of luck today Pen

My diagnosis is: thymoma in my shoulder (a what now?) which will be dealt with surgery later as it isn’t an immediate threat, and what they thought was a bowel tumour is actually stomach cancer, chemo starts next week and I won’t be losing my hair that was a surprise.

And you’re quite right I do feel better psychologically even though the prognosis isn’t great. At least we can try and it wasn’t my worst case scenario with the consultant.

Morning,

Yes, have been keeping an eye on my temperature eagle It has been normal. The side effects seem to hit me a few days after chemo & has followed the same pattern each round. I am having chemo fortnightly so not having much time of feeling normal. I have mentioned at my consultant appt & they are tweaking the nausea meds each time, it has been slightly worse each time once I have finished the stronger sickness meds that they have given me for the 1st few days. Last Thurs was my last EC, the next one is herceptin & docetaxel, so am hoping the side effects are not as bad with that, plus the cycle goes to 3 weekly, so I should get more normal time too fingers crossed.

I will look into that option cats thanks. My parents have been staying for the week over chemo so have helped with lifts etc. My next chemo & all associated bloods & PICC line stuff is all being done at the main hospital (because there is an a&e there as I could have a reaction to both drugs) so I need to allow at least an hour to get there. I have been doing the last lot at the more local hospital about 20 mins away, so it is going to be more of a mission to get everything done for the next few months.

Thanks tsonly glad your diagnosis is not as bad as it could have been and you have a treatment plan in place. Hopefully it will all move quickly now after waiting around for so long.

Good morning

PenApple all the very best for today

noodles I hope you feel better soon. You sound like me. I had permanent nausea throughout my first lot of chemo. Thankfully the regime I'm on now only causes nausea for a few days as I don't think I could've done two plus years of feeling like that! I'm glad you made it to LGFB though and that the advice was useful are you actually being sick or just feeling queasy? I have some excellent fold up buckets that I keep in the car because I do throw up quite frequently I also have some special sick bags that I bought online. They have some sort of gel in them, I think it's like the filling of disposable nappies. I keep them in various strategic locations. I've never actually had to use one so I can't comment on how well they work, but I can send you a link if they might be useful. I hope you all have a relaxing day today :)

tsonlyme is the thymoma benign? I'm glad you've finally got a diagnosis. Do you know what chemo drugs you'll be having? I didn't lose my hair with my first chemo either (I had oxaliplatin and capecitabine).

Twittle yes it's so often dismissed. I was incredibly lucky because I only really had one major symptom (randomly passed a big blob of blood and mucus) but I saw a trainee GP and she referred me immediately. I dread to think how long it might've been before I was diagnosed otherwise. I'd had some bleeding six months earlier and seen a different GP who told me it was piles I didn't think to question it at the time. I'm glad you don't have too long to wait. I know you weren't keen on the colonoscopy, but it's not too bad. You'll need someone to accompany you and you might be quite dopey from the sedation, so I'm not sure how feasible it would be to get the bus. You probably shouldn't get the bus on the way there as you won't want to be standing around waiting after taking the bowel prep! Is there anyone who can give you a lift or can you stretch to a taxi?

ranout how are you feeling? I hope the steroids didn't interfere with your sleep

Bravo thinking of you and hoping you're OK

purple I had to have my stitches snipped off too. Some of them fell out of their own accord. Thankfully there's no feeling so it doesn't hurt :) that's very quick. It usually takes about two weeks so you have to place your order quite early until you've managed to stockpile a bit when you're all healed up you can request samples of different brands if you want. Some are much better designed than others!

Quite a busy day today as we are going away again tomorrow, plus two different friends have asked if they can pop round and visit me :)

I hope everyone has as good a day as possible

Sorry purple that sounded really bossy I didn't know much about it when I started so I was trying to be helpful not bossy, I promise