Cancer support thread 63 for a handhold or advice and anything in between

[purpleunicorns]

Continuation of the lovely Leslie's thread here as it was nearly full

If you're worried about symptoms, waiting for test results or just need a safe place to vent then pull up a seat, we're a friendly bunch and we don't bite too much

There's quite a variety of cancers on this thread so hopefully one of us will have some advice and hopefully you don't need to stay for long.

I'll start with my story:
Diagnosed with stage 2b cervical cancer in October 2017, 25 lots of radiotherapy, 4 internal radiotherapy and 5 lots of chemo. Was told last week that it's spread and is incurable, palliative chemo starts on 16th July

Morning 🙂

I had a good day yesterday, loads of energy so made the most of it and got a few things done but of course I overdid it. By 5pm I had the weirdest head fog and conked out on the sofa for an hour. Every new symptom makes me panic, it’s horrible. Of course having napped I then couldn’t sleep when I went to bed and the anxiety exploded, ended up taking a diazepam to slow my brain down which worked a treat but I don’t want to get into the habit of that.

I know you’ve all said this is the worst bit (waiting for definitive diagnosis & treatment plan) but by god it’s awful. I keep dissolving in tears with no warning and other times I’m laughing at daft messages from my friends, and im trying to hide the lows from my kids (19 & 21) which is proving tricky.

Did some home admin with my energy which really isn’t my strong point at the best of times so feel quite proud of myself for that!

News is getting around the family and I’m fielding calls & messages which is hard work but it’s better they know.

Leslie I’m glad you’re feeling a bit better.

tsonlyme I am on my own and the part I have found to be hardest was letting people know (as telling seems to make me cry a little bit, but once someone knows I can talk about it much more straightforwardly) I ended up doing a very apologetic what's app message to most close friends and school Mum's, after I had told the kids incase they mentioned anything as I didn't feel strong enough to tell everyone face to face. My ex told his side (apart from his sister who got missed as she had been on holiday, but I was quite awkward when I bumped into her in a supermarket when I nipped in for avocado & rich tea finger biscuits which were the only things making me feel less sick!)

I get a lot of msgs which is lovely, but I cannot be on my phone constantly as it gets wearing replying, so I tend to do it at points where the kids are occupied and I am free to dedicate a bit of time unless it is an urgent one.d

The real benefit to people knowing is you can get people to help. Lifts to hospital etc etc, I guess if your children are 19 & 20 they are completely capable anyway regarding day to day stuff (mine are 4&7 so organised help for me has been essential) I don't think it is necessarily a bad thing if you are upset in front of them from time to time though. It is a crap time with a frightening diagnosis. They are young adults whom it find it odd if you just keep going as usual. Maybe ask advice from others TQ has uni aged children so is much more in tune with that age group than me.

Soon you will have a plan in place and will be getting treatment which does calm you down. as it is tough waiting for it to begin. You will probably find you will be busy with every scan/ test known to man over the next week or two. Well done on doing the house admin, not my strong point & not good when suffering with nausea to do it!

*who may not whom it

Thanks noodles

Just read about the eyelash loss thing, mascara is one of the very few make up items I wear - how am I supposed to make myself look respectable without it?!! Haha, small beans 😂

How quickly does hair go during chemo?

@noodles44 I've started telling school mums and the first thing they offer is help so once I know what I'm doing treatment wise a rota will be produced. Mine are also 4 and 7. My 7 year old has had a lot of questions which we've tried to answer honestly.
I got a call from hospital yesterday and I have an appointment on Wednesday to talk about my chemo starting then my scans on the 16th. I'm hoping we can squeeze in a few days before chemo starts somewhere with the kids. If not there will be a few expensive days out.
Hope everyone is feeling as well as they can today.
Thanks for everyone who commented on work. I think I'll just play it by ear as long as I can.

tsonly not all chemo makes you lose your hair, plus if it does, it goes at different rates. I was told for the type I am on it would be 2/3 weeks. I have cold capped and still have my eyebrows etc. I would check with your oncologist first before you buy anything. My Dad had bladder cancer 5 years ago and his hair slightly thinned, but was not noticeable and he kept eyebrows & eyelashes. Fingers crossed your treatment doesn't make you lose your hair. The further along I am, the less bothered I am about losing it though.

ranout I did the same and we went to Peppa Pig world. Not sure if you are in the south, but it is definitely worth a visit with the ages of your children. Mine loved it. We also went to Druscillas near Eastbourne just before I found my lump on an inset day which was good. My friends have taken the girls to Chessington when I had appointments one day too, so hopefully the kids won't look back on this time later in life as a really hideous experience.

I felt so sick last time, but this time I feel hardly any queasiness (yet)
Just working out when I can take my many tablets is giving me brain ache though! I hope I continue like this, my parents are taking my girls to theirs in the West Country for 9 days from next week. I may join them for a bit if I feel up to it, or I may lie on the sofa watching Suits & 24. Not sure yet, but the next 2 weeks don't feel half as daunting given I feel nearly normal this morning. I don't have as much of a headache either, so am beginning to think I had caffeine withdrawal symptoms on top of the nausea & cold cap too. Eek! Not that I fancy a coffee still, have gone right off them.

Yes I had been told that not all chemo makes you lose your hair but I’m going to assume for now that I will as I have two different cancers which will require different chemos and the lymphoma one is definitely IV. Then if it turns out I don’t lose it, it will be a massive bonus

Hope you all have a relatively good day today

Noodles it might be worth getting some sleeping tablets just for the days you have steroids. I've got Zopiclone on prescription for the nights I can't sleep.

I'm not too bad, still waiting for an appointment for my operation but my consultants away this week. I can't have any more chemo until I've recovered from the op so I'm a bit in limbo at the minute.

Tsonly I was the same, crying one minute then being fine the next. It really is an emotional rollercoaster isn't it? You'll feel a bit better mentally once treatment starts.
I hated telling my family and friends, I found that the hardest part. I hate people worrying about me

My hair started falling out about 11 days after treatment and as soon as it started I shaved it all off. My eyebrows and eyelashes haven't started falling out yet

Just leaping in (as far as one can leap after chemo) to wave, send , give commiserations & welcomes to newbies, and to let iVampire know that your half-marathon has actually given me lots of hope that my body will recover, and that there is life for me after this process. Not annoying - keep posting!

La'ers.

How are you faring Miles?

noodles I'm glad you're not feeling as grim this cycle

purple how frustrating to still be in limbo. Is your pain under control? I hope so.

For all the new lacies worrying about hair loss etc (and even if not) check out Look Good Feel Better. They hold workshops throughout the UK for women undergoing cancer treatment. They teach you how to apply make up to cover up various chemo side effects, e.g. eyeliner can help when your eyelashes fall out. You get a whole bag of freebies and it's a lovely treat in the midst of all the medical horribleness :)

Thanks for all the sympathy. I'm feeling much better today. I've spoken to my wonderful GP who has arranged a repeat prescription of Oramorph and I'm going to have a review next week. I'll ask about the patches, thanks purple :)

Hello tsonly and ranout. I'm sorry neither of you got good news on Tuesday.
I've been given a lumpectomy date of 16th August at last.
The pre-treatment stage feels like being Ill (big I) but not ill (small i).

ranout have a look at caravan parks near the sea if you do have a few days. They tend to be good for short stays.

Im pretty lucky my pain isn't too bad, it's mainly in my hip at the minute but they've increased my morphine to 30 on a morning and 30 on a night which seems to be working and I haven't needed the oramorph for a while. Leslie they might be able increase your slow release morphine to help with the adhesions,I think the limit is 200 a day so if you're still only on 10 twice a day it might be worth asking about. If not those patches are supposed to be really good

Good to hear from your Miles! How are you doing?

If anyone's looking for caravan holiday type cancer charity's caravans into google, there's lots of charities who let you use a caravan for free if you have cancer and they're all over the country

Hi Leslie, I'm not too bad, thanks: although chemo seems to have sent me into full-blown menopause, and sweat is currently running off me in rivulets - yeuchh.

Saw the nurse today, & she suggested I see the GP for HRT cream.

Mentally & emotionally I'm ok, though, and not in pain, so all alright here.

I've spent some time catching up with you all today, and am sorry to hear everything you've been going through.

I'm going to try and pop by every day to say hello for a while. Sometimes I want to stay away and not think about it, but I do like seeing ow you're all getting along.

Hi purple

Minnie I'm glad you've got a date booked :) and that's an excellent point about Ill vs. ill (iPad autocorrect really didn't like typing that!). To be honest I still feel that way a lot of the time even now you imagine how someone with cancer would feel, but actually I don't really feel particularly different. And certainly not like there's something properly seriously wrong with me.

purple I'm glad you're not in too much pain. Wow that's a lot! I didn't realise you could take so much. I'm on 20mg twice a day so I could definitely increase that. But they're not entirely sure if I should be on slow release because having a stoma affects how you digest them, so I'm probably not getting the dose spread out evenly.

As well as free holidays there's quite a few other charities that do freebies for cancer patients. Some are for specific cancer types or age ranges. I got free theatre tickets from Ellie's Friends a couple of months ago, which was such a lovely treat and there's also Something to look forward to. Something to look forward to also provide help for people in "cancer poverty" who need practical stuff that just shouldn't be a thing!

If you're under 40 the Willow Foundation do "special days". It's a bit like those Make a Wish charities, but for adults. Lots of people seem to go to Center Parcs.

It feels weird getting free stuff just because we happen to have cancer. But it's very kind of people to donate it and it really does make a difference :)

Miles it's an awful time of year to have started the night sweats! You poor thing when my aunt went through the menopause she got a special pillow called a Chillow. I'm quite tempted to get one myself in this weather. I hope the HRT cream will help. I'm glad you're doing alright apart from that. It's nice to hear from you but I can understand wanting to ignore all the canceriness when you can so don't feel you have to post unless you want to :)

Hi all, I hope you don’t mind if I hop on here. I’ve been referred to the breast clinic with a lump, and the appt will be on the 14th. GP said it would probably be an ultrasound followed by fine needle aspiration, and that I should get the results that day. I know that the fna will be nothing at all compared to the stuff some of you will have gone through, so I apologise for being a wuss and completely self centred-is it as agonising as it sounds? The idea of a needle right through to the centre of my GG cup breast is seriously freaking me out. (Among other things that are also freaking me out but about which I’m trying not to think.)

Hi Oscha of course we don't mind :) anyone who is having tests is welcome, though we are always especially happy to wave goodbye to those who get good news. Sorry I've got bowel cancer so I'm not much use to you, but I'll keep you company until someone with experience comes along. You're not a wuss or self-centred. It doesn't sound much fun at all!

Hi @Oscha I had biopsy's from my breast two weeks ago and it was fine. They numb the area first and make sure it's taken effect. I didn't feel anything. I'm sure a fine needle will be even easier.

Hi Oscha, there's a few ladies with breast cancer who I'm sure will be along soon with some advice. With regards to the needle aspiration I'm not sure if they numb it first but just incase they don't you can buy a numbing cream called emla cream that you put on an hour before you have the aspiration, I haven't tried it myself but others have said it's really effective

You're not a wuss at all! Or self centred although you're definitely allowed to be right now. Have you told anyone about this in real life?

Ah cross post with Ranout, they do numb it first so you'll be fine

Phew, thank you so much! I’ve told my husband and a couple of friends, mainly because if it’s bad news, I don’t want to have to break the news out of the blue, while very emotional, if that makes sense?! I’d rather be able to say ‘so I had that appt I told you about...’ probably a bit nonsensical really but it makes sense in my head.

My mother has bowel cancer and my grandfather has bladder cancer, so if this is in fact breast cancer, I will start thinking the family is cursed.

That makes sense Oscha :) and sorry about your mum and your grandad. Cancer is becoming so common, sadly. About half of us will get it at some point. Though thankfully the treatments are always improving

Hi Oscha.
The needle biopsy was a bit sore when he decided to take a second sample. The first was fine as I had a local.
I can only go on turn around times for my hospital but it took a week for them to process my biopsy.