The Lacies are back for cancer support thread 56 - all welcome!

[WhatWouldLeslieKnopeDo]

Hello again, and welcome to our 56th thread. Some of us have been here ages and others have just joined. I hope you've all made it safely over to the new thread.

An extra special welcome to anyone who is lurking and feeling a bit shy. We are all quite friendly and we definitely don't bite, so please do say hello if you'd like to.

All are welcome here. We started off as a breast cancer support thread many years back, but all cancer types are welcome and at any point in the "journey", even if you haven't yet been diagnosed. We have all had different experiences but there's almost certainly someone here who will understand how you are feeling.

Our previous thread is here.

I have started the new thread a little early, and I will explain why in a moment.

Yes much as I love the sun when you haven't got a pool and cocktails on hand it's quite nice that it's a bit cooler today

Tulip welcome though sorry you have to be here. Ask us anything and someone will have been through similar and be able to help

Chewing hope the chemo goes smoothly and Leslie glad you have another one ticked off

Mrs Rhod I'm going away next week, really looking forward to it. A week in Miami and a cruise. Since cancer we have been really pushing the boat out with holidays just in case you know. I will think of Lily on my holidays as she loved hers

Thanks guys, I'll stop imagining Xmas as my end goal! Potentially Boxing Day

I'll be having chemo every 3 weeks, then radiation every day. Then tablets for 5-10 years. Hopefully that's a stock standard treatment! When she asked me if I had any questions I said "yes, heaps but can't think of any".

It's feeling a bit real now, I can't imagine next week I'll know what you're talking about.whatwouldleslie no pump?? I still feel sore from the mastectomy. I have aches in muscles I didn't know existed and I must stretch my chest in my sleep because I wake up feeling beaten! But, I still don't feel sick so feel weird when everyone asks me how I'm going!

I really appreciate being able to hear your stories and responses. It's kind of normalising.

Mum, have a fantastic time, I'm sure there will be plenty of pools and cocktails.

Tulip, what you're having sounds like standard treatment, but there are usually a few hiccups along the way so don't get too set on Christmas being the end of it. Maybe New Year! The weird thing is its normal not to feel ill until treatment hits. Lots of people here can answer any questions you have, fire away.

chewing I hope you're home with your feet up now and not having any side effects :)

Stila it could be peripheral neuropathy. Might be worth mentioning to your team as there might be something they can do to help.

mrsrhod bloody cancer indeed. It's definitely worth taking some time to talk it through and make sure you are completely happy with your decision.

Not me with the seaside views sadly! I had a view of the car park. The chemo unit is only about 100 metres across the car park from the maternity unit where I came into the world. I find the symmetry of it oddly comforting :)

WiltingTulip I have metastatic bowel cancer so I'm on a completely different regime. I don't think any breast cancer chemo regimes use a pump so don't worry :) one of my drugs takes 46 hours to deliver so I am allowed to bring a small pump home rather than staying in. But they left that drug out this time in case it was causing throat issues (thankfully it's the less important one!) so I don't have to worry about the tube becoming entangled in anything.

I feel a bit grotty today. I suspect a combination of chemo and the heat. It was cooler this morning, but now quite muggy again. I'd love a pool and lounger. I might stuff myself into mum's suitcase

Have a great holiday mum
Leslie hope you feel better soon
I am indeed putting my feet up and will soon be in bed I think. I found it quite relaxing today really and spent around 4 hours there. Have several tablets to remember to take in the next 3 days and will place a large bowl by my bed in case I feel sick. When this happens I normally stay where I am and don't run to the loo

Goodnight chewing I hope your bowl isn't needed :)

I have been dutifully carrying my sick bucket around for weeks. With my previous chemo I was incredibly sick. At least this time my oncologist was expecting it so has given me extra anti sickness even though this chemo doesn't usually cause it. So far I've got away with just some nausea.

It's reassuring to have a bucket nearby though, just in case.

If you are sick, keep a record of when and how often etc. and which anti sickness medications helped. Then you can ask for more if they weren't effective enough :) prevention is easier than cure though so don't be afraid to take all the tablets they've provided if you need to.

Evening lacies
Welcome to all the newbies, there do seem to be a lot of us here at the moment. I can only MN on my laptop and have been outdoors while the weather has been so lovely and I'm now woefully behind with everyone's news! So, happy holidays to anyone off on a break, hope the waiting is ok for everyone waiting for appointments and results, and may the chemo be kind to you chewing, tulipand leslie
I'm halfway through rads now, had a review yesterday and she asked why I wasn't having any booster sessions I didn't know, so she's checking why they haven't been requested. I was happy with the 15 sessions but now the nurse has suggested I'd normally be a candidate for boosters I'm thrown a bit. My skin is rosy red and a bit sore already so hope to keep that under control. How are your rads going mysilly?
stila I haven't had pins and needles except during the night - my feet and legs will suddenly feel "dead" and then do pins and needles? Though a month after chemo I still have a very attractive eye tic that will not shift and intermittent tinnitus which I hope will lessen gradually.
Waves to everyone else - sorry that's a bit rubbish on the personal front.

Hi everyone
I have done 3 rads and have 20 left. It's not too bad, the machine isn't too noisy so I am not upset by it. I do always have an urge to scratch my nose or head when I have been positioned. My skin feels a little tight but isn't sore. At the moment they are checking my pacemaker daily after each treatment but they might reduce this to weekly. I have a bit of a cold today, but the hardest thing about rads so far is commuting for 2 hours a day in the heat.

I hope everyone's chemo is going well. My chemo unit had a fantastic view across the London skyline but you couldn't really see it when sitting in a chair. Mostly you just saw sky because the windows were too high. My rads is in a basement, but there's a picture on the ceiling to look at, I think it's trees, I can't remember so couldn't have been paying attention.

I agree silly, the urge to scratch was unbearable on the rads machines. I sometimes had to be repositioned. The commuting is a pain though, it must be almost impossible for some people.

Chewing, hope you've had plenty of sleep and don't feel too bad today.

Morning lovely lacies.
Sorry not to have been around much. I'm struggling a bit with post treatment blues - much more anxious now than during chemo etc. Not concentrating too well at work and fed up of being tired still. But I feel guilty about it so trying to keep head down and get on. Or maybe I'll just blame it on the tamoxifen!

Welcome to Tulip and hope you're not having any chemo related grottiness. Hope today's gentle for you too,chewing.

Maybe it'll be a bit less muggy today Leslie, bothersome weather is the last thing you need right now. Hope that bucket stays empty!

I had rad boosters, pepper, and although it meant another week of zapping, it was quite nice to think of the site getting an extra blast. Maybe worth asking about?

mrsrhod I hope the gp can help you come to a decision you're comfortable with - not that there's anything comfy about it, of course.

royal and mum your holidays both sound fabulous. Have wonderful times. Dd and I will be in Hants next week with family - not a cruise but if the sun comes out and there are cream teas on the cards, I'll be happy. Going to try to stop thinking so much, do more kitchen dancing and stop obsessively looking for new lumps.

Sending very best wishes to all here, cooling drinks to those who need to flush out chemo yukkiness, handholds to the waiting and worried, and scones and jam to anyone who fancies.

Morning all
Dinster I hope things get a bit easier for you soon . Can't give any advice though as I have a long way to go before treatment finishes. I love cream teas so will happily join you with that
Silly the commute in the heat is not nice but it's feeling a bit cooler here today so hopefully it's the same dahn sowf

I didn't sleep brilliantly and have been awake since about 5. Felt a little bit nauseous but have now started taking the various tablets so hopefully these will help. I am waiting for a chemo nurse to call me back about a meds query as their instructions to me differ from what the printed label says Have a good day everybody.

Hi,

Dinster , hope things get better for you I've had a few days where I've felt down but I know mine comes from having that feeling of the word incurable sat on my shoulder .

chewing hope you've had the answer to your queries by now , and you get through the next few days with the most minimum aches and pains that chemo throws at you

leslie I have mentioned it and it's been noted but not much concern. However in the last 3 months since I was at an oncology meeting it's got worse , or should I say much more noticeable. So it will definitely be getting another mention next week. I have Googled (I know but it was nhs) and it says it usually peaks 3-5 months after chemo . . . I'm 10 months on now.
pepper Yes that's when mine are at their strongest , is at night and I also get that dead leg feeling. Hope the tic and tinnitus fade away.

silly I find the min you know you have to be still you always get an itch , in every situation. Glad you are coping with it , but the commute can't be nice in the heat. I found once you have done more days than you have left , it flies by.

There were some people having rads who lived about 70miles away when I was having mine. The hospital used what was once Dr's accommodation to put them up. One of them was telling me that because they were on site they took any appointment Tue , Wed and Thurs but their Friday appointment was always first thing so they could go home and then latest on Monday so not to rush back.

Mrsrhod it was my hospital where the oncology wards look out to sea , unfortunately the day unit has less spectacular car park views, but sometimes you get to see the man with the hawk chasing the pesky seagulls away

now the weather has cooled, I've finally braved turning my laptop on - it chucks out so much heat I couldn't bear the thought of adding to the temperature! There's a lot been going on, this place looks like its been really busy the last few days.

chewing I hope you're still doing OK and not facing any pesky delayed SEs. If the sickness does become too bad, when you're next in ask for Emend (if they havent given it to you already). Its about the best anti-sickness drug they do but is pretty expensive so not routinely given out.

mysilly you're not being treated at the Marsden in Sutton are you? Your description sounds familiar - underground and trees on the ceiling! The commute sounds rubbish though so I hope you enjoy the break over the weekend.

stila I've been left with peripheral neuropathy in my fingers after Taxol. Its more annoying than anything but as a knock on my fingers swell up easily when I get hot and they've been quite painful over the last few days. It's 18 months now since I finished chemo and unfortunately they're no better. I live in hope...

tulip welcome aboard. I echo everyone else, whilst its great to have a goal in mind, plans often get derailed so try and keep an open mind if you can. Good luck with it all

yaz my two trips to the breast clinic were pretty much identical - a visit to see the consultant first who took notes and examined me. Then I had the standard 4 mammo images (2 of each breast). After waiting a while I then had more detailed images taken of the area of concern, followed by an ultrasound and then biopsy. Whilst I was waiting other women were told they could go after their mammos, some stayed on for an ultrasound and were then told they could leave so in the end it was pretty much just me left! I then went back to see the consultant who gave a brief idea as to what they suspected and then I went back to the hospital a few days later to get the biopsy results

leslie sounds like no pump is a good thing then? Hope you're doing OK

mrs glad you had a good holiday. Not long to wait until the next appointment which I guess is good. chemo brought on early menopause for me which I admit was/is not fun but I guess I just had to accept it as par for the course. Bringing it on as a result of a preventative measure rather than a cure though does put a different spin on it

mum hope you have a lovely holiday. I'm struggling once again with seeing all my friends heading off to the sun whilst we're having to throw all our plans on the back burner. My poor DD is going to have another boring school holiday :(

pepper not everyone has boosters as far as I know. It all seems to be down to the tumour type/size/grade etc and to some extent the woman's age. i was told at my hospital that women under 50 usually get offered them

dinster sorry to hear you're suffering post treatment blues :(

As for me, I've taken back some control whilst waiting for next Thurs. I got a cancellation at The Haven so now have a counselling session and a shiatsu massage booked over the next couple of weeks. I also met a lady who had DIEP reconstruction 5 years ago who showed me her scars and I'm talking all things implants with someone else! I've also got a night out organised with some of my best friends next Fri so I've got something to look forward.

I'd better stop this epic post, the room is getting hotter by the minute! Hope I havent missed anyone out and hope you're all able to enjoy the weekend

minty lovely to hear from you! I hope you haven't melted under your laptop I'm glad that you've got some treatments booked in and getting advice from others about the surgery. And a night out to look forward to.

No pump is a mixed blessing I suppose, but mostly good. I should have it again next time, so just a one off break. It's not that bad, just a bit of extra palaver, but I rather melodramatically refer to it as my albatross

Stila sorry I must've completely blanked out that you're not still having chemo at the mo the man with the hawk sounds an exciting distraction!

chewing I hope someone got back to you about the medicine. Are you feeling any better? Are you on steroids? (Usually dexamethasone I think.) they can disrupt your sleep. I was awake until 1.30 am last night then suddenly couldn't keep my eyes open.

dinster sorry to hear you are struggling. It seems to be quite common after treatment when you are suddenly adrift without the reassurance of all the appointments also people often expect you to immediately go back to normal, when something life changing has happened. (Thank you for the scone and jam - clotted cream too?) Your holiday sounds relaxing. And enjoy your dancing. When I was waiting for my PET scan results I would get in the shower every day and dance to Elvis. Nothing feels quite so bad when you're dancing :)

pepper I hope you get an answer soon about the boosters!

Mysillydog fingers crossed your pacemaker can be checked weekly soon. Though good they are keeping a close eye on you :) I do not envy you your commute!

I am now, finally, the proud owner of a wig. I'm very happy with it as it really matches my hair colour, but is a longer and more voluminous style than I'd be able to achieve with my real hair it'll take a bit of getting used to though. I'm hoping my last straggly bits of hair will hang on until the heatwave passes!

Waving to everyone and wishing you a very happy weekend

Minty 18 months ?
But like you say it's more annoying than anything . It's only recently moved into my fingers/hands but it's been creeping up from my toes since about beginning of October. When I looked it up both the paclitaxel and the carboplatin that I had , are on the list of chemo drugs that can cause it . I hope it eases off for you soon . . . .keep those fingers cool !

Leslie I was just about to sit down one morning and it swooped by the window . I was like ' did anyone see the size of that bird ?' The receptionist calmly pointed at the man with the gauntlet following behind .
Glad that you've got some great 'new hair' .

Good evening ladies I am crap at keeping up here but welcome to all that have recently joined, hope chemo is being kind with managable/minimal side effects for those underway at present. Apologies for not mentioning everyone (brain is a bit battered and have been through quite a few pages;) )
Royal great news about results enjoy your holiday
leslie glad your chemo wasn't delayed again
pepperrabbit good news your onto rads, my oncologist said he was recommending 5 boosts to tumour bed and if I remember we had a similar diagnosis?
I am a bit gutted as the last 2 docetaxol resulted in a week in hospital with neutropenic sepsis so was changed to weekly Paclitaxol x 3 fir the last but so should have finished Wednesday but 2 more to go. Asked today if everthing went ok this time whether the 2 remaining doses could be combined next week but told no :(. Feel better than after docetaxol but aches and pains started today and I can't blame the injections this time as don't have them. Think I've just dipped into a low mardy mood, have had enough now and feel tight on the kids now they've broken up as not a very exciting parent at the moment. Cyber hugs to all xxx

That should read lacies (don't presume everyone is female, predictive text! ).

Just woken from a short nap and not feeling too bad. Meds query is sorted and I am taking dexamethasone Leslie which I was told would disturb my sleep. Glad you have a wig sorted. I am going to try a few on as the ones on the shop website don't look too bad. I may go for a slightly different colour and length to normal just to have a change

Nice to see you again minty
helly hope you feel a bit better soon. My ds has been home for a while already since finishing exams and I feel a bit bad that I won't be able to do too much over the holidays now. Have promised to make it up to him and have a holiday as soon as I can and he's being quite understanding.

How are you today chewing? I hope the nausea is back under control and I hope you sleep better tonight :)

Stila I really want our hospital to get one now! They could use it on the smokers who block the entrance right next to the huge no smoking signs

helly sorry about the neutropoenia and the delays. It just be disheartening hopefully you'll soon be up to doing more fun stuff.

It's been quiet today so hopefully that means everyone is enjoying the weekend.

Hiya Leslie
I woke up feeling slightly nauseous but it wasn't too bad luckily. Didn't sleep too great but the heat isn't really helping in that regard. Can I ask how much wigs cost approximately? I have the £100 voucher to use but just wondered how much extra you need to put towards it, if anything. Guessing long wigs are a bit pricier but I will probably go short which is what I have usually.

Good that the nausea isn't too bad. Heat definitely doesn't help. I feel a bit mean as I know everyone is enjoying the sunshine, but I am hoping for just a few degrees cooler :)

I didn't have a voucher, I just bought it from a non-NHS approved wig consiultant. So I can't really help much, sorry. It was £260 including the wig, having it steamed/trimmed and all the accessories. It is synthetic. The lady price matches with the Internet which I was surprised by. We were expecting to pay the extra for the personalised service! I don't know quite how the voucher schemes work. It all seems rather complicated.

Sorry that was completely unhelpful hopefully others on here have had the vouchers.

chewing hope your doing ok and se managable? Have to say wish my 10 year olds were as understanding as your ds lol! I had a wig voucher for £150 (it seems to vary so much by centre) and mine cost around £215 which included cutting so not to bad. The price varied by style and make mine is longer than my own hair was but not long, long.
leslie thanks think I've just hit a low spot which is daft as I am nearly at the end now.
Hope everyone is ok and had been doing wonderful things over the weekend so not posting:). We have an exciting time at the max fax clinic to have the wires replaced in ds brace which is always traumatic! Xxx

I wasn't offered a wig voucher, strange how it varies. I do think it's worth paying for one you are happy with it makes so much difference to your confidence being out and about.
Helly that does sound like a traumatic dentist visit !
Love to all X

helly I think lots of people do struggle near the end. It's a long slog! Especially when the end date is delayed. It's not daft at all good luck with the brace adjustments

Afternoon lacies. I had the start another side effect this morning (constipation). It was not pleasant but I got through it and that is all I shall say on the matter
Hope you are all having a good day. It is feeling a fair bit cooler here which is good.