CANCER SUPPORT THREAD 66 for those with cancer or awaiting cancer test results. Rant, rave, laugh, cry, joke, scream - whatever gets you through the day.

[TwitterQueen1]

Welcome to the new thread, and the club that nobody wants to join. Our previous thread is here

Anyone with any type of cancer is welcome. And we will hold your hand if you're waiting to find out whether or not you have cancer at all.

If you have a loved one with cancer you can get support on a different thread here

For old and new posters it's very helpful if you (re)introduce yourself in your first post with a summary of your diagnosis (chemo brain is a real thing and my memory isn't what it used to be!).

Minnie Glad your treatment is done! Hope you're doing something to celebrate!!

Fuzzy best of luck for your surgery, I'm not surprised you're scared. Handholding from here xxxx

If anyone wants recommendations for hair halos, I can vouch for the ones from the headscarves by Ciara website. I just received one in the post this morning and it's brilliant. Will send a pic if anyone wants one. (It's hair stitched into a hairband, so you still wear a hat with it, but it's not hot and itchy like a wig)

Fuzzy I don't t blame you for being scared but the thought of things always turns out to be worse than the reality of it. I think there's a couple of people on here who have had a mastectomy so hopefully they'll be along to reassure you

Hope you've got a bit of energy back Leslie. I've been thinking of you while I'm stuck in hospital but luckily I'm going home today. 8 days was more than enough for me The stents in my right kidney is blocked but as my kidney function is still ok it's not urgent and I'll get an outpatient appointment to get it changed.
I'm right at the end ward of the hospital so we don't our prescriptions until last which means I'll probably be here until 7:00pm

purple. Great to hear you are going home. At last!

Fuzzy. I know as the time gets nearer I will start to be nervous about the mastectomy. I think at the beginning of treatment I just shoved it to the back of my mind but now the surgeon is talking provisional dates it’s becoming more real. Like you I’ve had major surgery in the past which was traumatic in terms of time spent in hospital and other things. I know the mastectomy will be done as day surgery so not quite as much to cope with in terms of hospitalisation. Hoping all goes well tomorrow xx

Fuzzy good luck for tomorrow

Purple so glad you are home, it's so draining isn't it?

Minnie glad to say hi and bye

I'm home too with boxes of blood thinning injections. My lumpectomy/clearance is due early Feb but this can take 3-4 months so I'm wondering if it will be delayed. I'll know more at my next consultation on Monday ahead of the booked chemo next week. I hope they let me stick to the timetable as Christmas falls in my 'good week' as it stands. I've been fantasising about fillet of beef and crunchy goose fat roasties while picking forlornly at my hospital jacket spud!

I'm a bit worried getting clobbered with all the same side effects and ending up in hospital again on the next round, so I've packed a bag. My logic is that it won't happen if I'm prepared.

Fuzzy good luck tomorrow. The radioactive stuff helps them identify the lymph nodes to take - hope that wasn't too traumatic. I'm on day 10 post mastectomy and although I've been a bit up and down recovery wise, I have generally felt no worse than when I had s lumpectomy in May. Do you work? Make sure they give you a sign off note for 2 weeks at least - and allow yourself time to potter and recover. They should give you a softie (stuffed boob) to take home from hospital, and then a proper silicone one in 6-8 weeks. Thinking of you xxx

Thanks for the good wishes! I’m distracting myself by changing my mind every 5 minutes about what to pack in my hospital bag, while cooking dinner!

Glad you’re going home purple 👍🏻

Astuz are you still on the pain killers? They can really wreak havoc with your insides. Sounds miserable though and disrupted sleep when you're trying to recover is pants! I had a haematoma drained yesterday, not painful in itself but I felt absolutely battered afterwards so treated myself to 2 of my post op co codamol to ensure a restful and pain free nights sleep - instead I was awake from 3.30 am with bizarre indigestion type pain and discomfort, and cold sweats.

Are you on the morning list fuzzy?

Yes I have to be there at 7:30 🤨😂 and I’m the world’s worst morning person...!

Good luck Fuzzy

Symphony I had/have clots too. I give myself a sticker after my injection! :)

purple I hope you are comfortable at home. Annoying about your stent but good it's not urgent :) hopefully they'll sort it out pronto.

I'm still so weak. Hard to explain. Can't even walk to bathroom and back without throwing up/feeling faint/needing inhaler. It's ridiculous. Please, please ask if you're eligible for the pneumonia jab and get it if so. It is scary how much it has ravaged my body in just a couple of weeks.

Waving to everyone and sending love :)

Ah that joyous nil by mouth

Good luck today Fuzzy will be thinking of you. I am getting nervous about my op (which isn't until Dec and is only a lumpectomy and node clearance as a a day patient) so totally understand how you are feeling.
I am also feeling a bit weird about having had my last chemo. I am not elated as I thought I might be, more gutted that despite side effects it is my medicine which is stopping my cancer growing, so I am feeling a bit sad to be stopping it. Everyone is saying how brilliant it is that I have completed that stage in my treatment, but I just feel really flat. Added that I am bricking it about the op too (no idea why as when it was explained it all seemed straightforward and there is no aspect that I am particularly scared of) it really messes with your head all this treatment doesn't it?

Glad you were set to go home last night purple I hope the blocked stent is sorted ASAP as an outpatient (although you are probably happy to not be going back that quickly if it is not deemed as urgent)

leslie Sorry you are feeling so weak, I think I read once how long a fairly short hospital stay can set people back as you are not using the muscles you normally use. Be kind to yourself and rest up as much as possible on your lovely mattress. I hope you regain your strength quickly and feel back to normal ASAP. Do you still have the oxygen machine there? Does that help if so to have a good slug of it before any activity? It sounds very debilitating

Glad you are out of hospital too symphony I have had the injections every chemo for my wbc's. Try not to worry too much about the next round, they may increase the days you have these for to combat the drop in the white blood cells. My first docetaxel def had the most/constant side effects.

TQ good luck today for the potential trial. I hope they have something suitable and that your stomach ache is not getting any worse.

For everyone with a sore mouth, I had one on the first docetaxel, my tongue felt like it was about 2x its usual size and was very painful for a couple of days. Fizzy water helped as my usual mouthwash was painful as was bonjela. I was prescribed benzydamine mouthwash and nystatin suspension for the next round, but it has never been like it since, so I haven't needed to use them.

Does anyone have herceptin injections? I have had 4 lots through my picc line alongside docetaxel already, I now have another 14 herceptin Injections into my thigh to go (on a 3 weekly basis) I am due to have my first injection next week. Has anyone who has had these had any side effects at all? My mum is threatening to come up just incase, but am fairly sure no side effects are anticipated. If you google side effects of herceptin though, some of them are similar to docetaxel. All that I have had is assumed to be the docetaxel as it is less common to react to herceptin. I don't really want mum to come up unless she has to, her and my dad will be back for when I have the op (& are staying until after Christmas as I am not to lift etc or drive for at least 2 weeks) so I just wondered anecdotally if anyone had had any reaction to the injections.

I hope everyone is as well as possible. I am just sleeping lots trying to get rid of my sore throat/ swollen glands still and seem to be developing more spots than I had when I was a spotty teen! Looking & feeling mightily attractive right now! More irritating than anything serious (sorry to sound moany when so many of you are in and out of hospital with real medical issues)

Have a good day everyone x

I use Corsodyl mouthwash for sore mouth.

Nystatin drops are for oral thrush, which is often the cause of soreness. I quite like the taste and using the squeezy dropper

noodles yes I'm still on the oxygen machine. I have nasal prongs and it's on one litre so not much more than normal. Oddly sometimes I find it makes me feel worse I hope you get plenty of sleep and feel better soon

Leslie that sounds absolutely rotten, I hope you feel stronger very soon.

noodles I had a sore mouth at first with Docetaxal but it's gone now. It was the sides of my tongue that were sore, like I'd bitten them. I've only had one round though. I'm having the same surgery as you, but as an inpatient.

I met someone in the Day unit who was much further on than me and was having Herceptin. She didn't get any side effects and was back at work, so fingers crossed that it's symptom free.

Morning ladies, sorry am getting my ass kicked with joint pain and feeling weirdy numb? Is that a thing??

I have meetings yesterday & today and has absolutely NO clarity so had to get people to double check everything. I ended up going to bed in tears last night as so frustrated by it all.

It's all a little complicated because am self employed but don't have business debts other than to me & DH. Ironically if I had a business loan or over draft they could step in to help but as am the only 'creditor' I don't count.

Am terrified I'm about to loose the business I've worked so hard for and let down 16 employees

Noodles

Just a quick message on the Herceptin. One of my chemo nurses told me that the Herceptin is not like chemo and she kind of made it sound like there would be almost no side effects. I hope so because I have to have 18 cycles of it. I am hoping that all the side effects I am having at the moment are due to the docetaxel.

Hello everyone. Leslie that sounds bloody awful. I will definitely ask re pneumonia jab.

Feeling very sorry for myself here as lungs are not feeling right, so I don’t think the chemo is controlling that like it was a month or two ago, plus way too much pressure at work, and am missing my family. My mum has been away for 6 weeks and now she’s back can’t see me. I don’t know if she is avoiding me intentionally because it’s too hard for her or just has too much on but I feel very lonely! She has offered to come up for my next set of results but that’s a month away at least. I think it’s worse because I don’t live with a partner so other than work spend soooo much time on my own.

Moan moan moan!

Just popping in to wish good luck to Fuzzy and TQ

Symphony my last chemo was due on Christmas Eve but they're happy to change it so you can enjoy Christmas if you let them know

Oh Leslie I felt exactly like that after my first chemo and it really knocks you for six. I honestly thought it was the beginning of the end and I'd never feel any better but I did and you will too

Noodles will you have another scan before your op to see how well the chemo has worked?

Keepcalm could you delegate any of the jobs you need to do to one of your employees of your DH to give yourself a break?

Namechange does your mum know how much you need her? People just assume that we're managing and don't realise we need a bit of support at times. Can you ring your oncologist if your lungs don't feel right? They may give you another scan to put your mind at rest

Hi, dropping in to the new thread. Quick recap (I know I'm way behind the rest of you on this!) - dx breast cancer Nov 16, triple positive, grade 3, stage 3, had mx and anc Jan 17, chemo, herceptin, hormone treatment, rads. Oophorectomy Aug 18. I've just started a year of extended treatment with neratinib, a new drug that aims to prevent recurrence. It's weird to be back on treatment, although the drug is daily tablets, I'll be having blood tests and reviews every 4 weeks. Really brings it all back sitting in that waiting room. I also had my annual check up last week, got sent away when I went round for my mammogram as they were so busy, so I've got that this Friday. I've had a cough and pain in my side for weeks, consultant not too concerned but has said to go back if it's not cleared up next month.

Leslie, glad you're back home but oh dear, it all sounds very shitty. I hope you're as ok as you can be.

Noodles, I found herceptin to be absolutely fine, SEs were dire rear at manageable levels, weak nails and bruising around the injection site.

Good luck @FuzzyWhiteLegs hope your in recovery now and feeling as ok as you can. One more step done.

I'm on here for a moan. I know I should be pleased with what I've got but this Docetaxel has knocked me for 6, I'm not sure if it's that or the cell stimulating injections. Loads of tummy issues, knackered and aches all over and this is just over a week in. I'm hoping as today was the last injection day things will pick up? Anyone else had the injections with Docetaxel?

Hi ranout

I’m on Docetaxel and have the injections. I find that the week after chemo I’m pretty much at home all the time feeling not very well. The injections definitely have something to do with it. My last one today of this cycle too and have started to feel a bit better again now. I’m off my prescribed painkillers until the next cycle. I have the same side effects as you.
Xx

Thanks for all the good wishes! It looks like the trial is on. They haven't got any paperwork yet as the trial has only just got approval. I'll be in one of 3 groups:
Paclitaxel – weekly intravenously
Olaparib – taken orally, twice daily
Olaparib and cediranib – taken orally, twice daily and once daily respectively

Obviously I don't want to be in the 1st group as I've already had weekly taxol and 18 lots of that didn't do a whole lot. But if I am, the upside is when that stops working I would be put onto Olaparib, which is not generally available. I'll keep you posted.

Two lovely posters on my OC thread have been very kind and very helpful, sending me info, helping with parking etc. Thank you xx

Leslie sorry you're feeling so weak, it must be so frustrating. Rest and more rest. Are you managing to do any kitting / crocheting?

Purple how are you doing?

NameChange I'm on my own too.

KeepCalm The brain fog is so debilitating isn't it? It drains your confidence. Can you bring someone on to double-check what you're doing?

I called into Maggies Centre and the benefits advisor rang the PIP people for me and asked why I'd been refused. Basically they just cocked up. Someone will ring me within the next 48 hours.

Good to hear your update @TwitterQueen1 . Fingers crossed it's option 2 or 3 for you.
@Mrstraveller thanks for responding, I think because I flew through the previous 3 this time is horrid. The oncologist did mention maybe less injections next time? That was a fly by conversation on Monday, I'll see her properly next week. I just hope it's shrinking the bugger after all this.

Sorry NameChange I meant to add that that it's hard sometimes isn't it? I'm pretty solitary so tend to cope better on my own a lot of the time but sometimes I could do with a shoulder to lean on, but not my DDs'.

Good luck for the trial TQ!

It seems lots of us are having bad days. I have spent the day in hospital because I kept fainting. I'm home now, they couldn't figure out a reason. I'm okay as long as I don't move much. I've never felt as ill in my life. This is cancer and chemo I guess.

Unmumsnetty hugs to anyone who needs them