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.

I think the struggle at the end is the thought of getting back to normal life when you have changed. Cancer treatment is full on and takes a long time, but it's a bit like a comfort blanket to cling on to.

I have never worn my wig, but I have just booked my hairdresser to cut it, so maybe then I will start to like it more.

Minty I'm having rads at St Thomas' so I think trees on the ceiling must be a common theme. There's a trend to moving radiotherapy out of basements though, so when the services move to the new cancer centre at Guy's it will be in an area above ground with natural light.

Oh chewing I remember that one.... not fun but hopefully you're sorted now ;).

mysilly I think you're right about the thought of going back to normal life. You spend all this time living under the care of the hospital and then you're not. People, no matter how supportive, will expect/assume you will pick up from before and that's hard.

interesting about moving rads above ground. The unit at Sutton is essentially built into a hill and the waiting area has huge roof lanterns so it's kind of like being in the reception area of a big hotel, only difference is the facilities!

Hi everyone, I feel like I've lost track of the thread as haven't checked in for a while but welcome to all the new people and hello to the oldies. Lots of you seem to be going through chemo right now- I'm thinking of you all!

I've finished all my treatment now and just started on the tamoxifen 2 weeks ago- no side effects so far, keeping my fingers and toes crossed xxxx I've also just ditched the wig, it feels very breezy without it and I feel a bit exposed but no-one seems to have given me a second glance while out and about so I guess I don't look too odd.

Morning !

Fresta yeah to finishing treatment and binning the wig !

chewing I had the extreme opposite of that side effect, equally unpleasant.

Had my scan results , no evidence of active disease. So another appointment in 3 months but no scan till the following 3 month appointment. After checking the pins and needles weren't stopping me do buttons up etc he wasn't too concerned . When I mentioned the 3-5 month peak post chemo he told me it was ok to be odd . Had a telling off for stressing over something my gp had said and I should have rung him .
Finally after 15 months he said I can stop with the tinziparin injections, this I'm very happy about !

Hope everyone has a great day .

Hope today is kind to everyone; especially you chewing. Still waiting for call back from breast care nurses at the hospital; been 9 days now and have left 3 messages. Also private clinic still haven't got back to me after 7 days. On a mini break with the kiddies and it's awful; breast pink and so painful and hair follicles on pink area very visible. Hard not to think the worst and not sure where to turn now.

Just popping in to send love and strength to all .I had oesphageal cancer a couple of years ago but am holding my own now . Think I had first year in shock ,second in denial and now I'm having to adjust to fact that my body is not what it was . though that could just be ageing

Hand holding for anyone waiting for results or suffering with side effects - constipation is much underated for the level of discomfort and loss of dignity it causes .

Afternoon all.
I have a lot of reading to do to catch up on the thread. Thinking of all those going through chemo at the moment.

Just wondering how you are Sleepy?

Enjoying the nicer weather but it seems to have brought back the menopausal symptoms! I have been having acupuncture which seemed to really help the night waking and hot flushes but the last couple of days have seen a bit of a relapse. We had just moved to monthly appointments after having weekly, then fortnightly. Really hope I don't have to go back to weekly as it gets expensive! For me it really does seem to help. How long before your appointment Mrs?

Love to all.

Hi speedy, sorry to hear you're suffering again. I tried the haven last year to get acupuncture to help with hot flushes and sleeplessness. Unfortunately the therapist and I were not at all on the same wavelength and she had me in tears, having to justify why I wanted help. Very very strange experience but I'm pleased it worked for you.

I'm seeing my GP on Thursday to discuss the hysterectomy, the need for it, where I should have it, who should perform it. I'm going to use our BUPA this time I think, assuming they will cover it. It's been recommended by two consultants so I'm hoping they will.

Fresta, I hope the tamoxifen continues to give you no trouble. Hello to everyone else.

Send DD passed her driving test yesterday, I'm just now recovering from the hike in my insurance premiums now she can go solo.

That should be second DD.

Good luck with the appointment on Thursday Mrs. Hope you get your questions answered clearly.
Well done to your DD, although I imagine insurance can be eye-watering!

Evening all. Been feeling very tired today and been dozing on and off. Going for bone scan tomorrow so that will make me get up at a reasonable time Nice to see good news for Fresta and Stila and sending good wishes to everyone else.

Nice to hear from you ginger

Mrs Rhod well done to your dd, mine passed her theory last week though I imagine the practical is going to be more challenging for her !

Chewing good idea to rest if you need to, hope the scan goes ok tomorrow

Sleepy if you are reading I hope you are ok

Love to everyone else

Evening all,
chewing hope you feel a bit brighter soon and all the best for the scan tomorrow. I took movicol from the day of chemo each cycle to deal with the constipation, No fun at all.
mishmash sorry you're still suffering but hope you can enjoy some of your holiday.
fresta I was thinking of you the other day as you are about a month ahead of me. I've started the tamoxifen (sorry if TMI, but is increased discharge a thing that persists or just a settling down thing does anyone know??) I imagine I shall feel a bit lost once all the treatment is over as you say dinster everyone seems so happy the end is in sight.... as if it will be completely "over" and packed up in a box marked "Done".
mrs best wishes for a successful and constructive drs appointment, it's a big decision but as you say, all those questions need answering before you commit to anything
stila excellent news on a NED result
speedy I have my first acupuncture session on Thursday and have high hopes for some relief from the night waking and hot flushes, they have been miserable since chemo started and I suspect tamoxifen isn't helping (nor will the plan to "whip out my ovaries"!)
wiltingtulip how was your chemo? I think it was today?? Hope it all went to plan and you are home safe and as well as you can be.
minty good to take back some control, counselling and massage seem good antidotes to the stress of waiting.
helly you've really been through the wars, hope the paclitaxel is kinder to you.
I got the answer to my question about the booster rads - there was much tooing and froing on Friday at the rads department, the consultant himself appeared, much muttering and I was called in to see him. He was completely mortified that I he hadn't booked me for boosters. He actually looked quite shocked that he'd missed it, and was most apologetic as it's standard protocol for the under 50's at my trust. The radiographers were all "oooh, how did you pick that up?, well done you!"
I'm reassured that the consultant has clearly been through my file in detail again now and as he said - I'll have had everything they can throw at me.
On brighter news today I seem to have the very beginnings of eyebrow fuzz (yay!) and the first signs of darker hairs growing through the shocking white mallon streak chemo/cold cap has left me with. DH just smiled and nodded, but honestly, they are there and I'm not imagining them!
Waves to everyone else, leslie mum sleepy ginger royal et al
And relax......

Hi lacies. I slept right through last night which really made a difference as I have felt fine all day. Had the scan and when it was looked at it was decided I needed a further 3d scan of the base of my spine. Hope they haven't found anything there
Hope you've all had a good day.

Hi everyone
Chewing I really hope your scan results are favourable and that they get the test and results out to you quickly. I'm glad you got some sleep and the chemo isn't making you feel too bad.

I have had a long day at the hospital. Rads at lunchtime and an echo this afternoon. My last echo result was borderline and so this one was repeated after 4 weeks. The good news is that my ejection fraction hasn't deteriorated, and in fact it is a little better than a month ago at 53%. This is a low normal result, and so I can carry on taking herceptin and I go back for another check in 4 months, which is routine follow up.

Yaz I hope you got some reassurance from the breast clinic. I know you were concerned that they would not do any imaging, so I hope they did an ultrasound and your mind has been set at rest.

Pepper I'm glad you have sorted out your boosters. I also have fuzz growing on my head and eyebrows. Just a shame it's mostly grey.

Hi all, have been given my diagnosis of a breast cancer today and going in for a lumpectomy on Tuesday. They think I found lump early and it hasn't gone to lymph nodes. I am bricking it, lost a very close friend last year, and was with her when she died. I have two very small kids, 3 and 5 and am raising them alone, their Dad sees them about 3 times a year. I just need some positivity that I have a chance of getting my kids to teenage hood at least. Thanks.

Hello all :)

Fresta yay for end of treatment! I hope the Tamoxifen is kind to you

Stila fantastic news about your scan

mishmash sorry you're still struggling with this. I hope you can get some answers soon have you spoken to a GP at all? They ought to be able to chase this up. Whatever's going on, it's not normal to be in this much pain and they ought to be trying to sort it for you.

Speedy I hope the hot flushes calm down soon

mrsrhod well done to DD. I hope the GP can help with your questions. It's a big decision and it sounds like you don't need to rush so it's definitely worth talking it all through until you are satisfied :)

pepper good you've got answers about the boosters, and good news about the hair growth too

ginger lovely to see you the adjustment process is frustrating

chewing sorry you need a further scan. I hope they arrange that for you quickly so you can finally have some answers

Mysillydog good news about your echo results and Herceptin. I hope your hospital visit was shorter today.

Sorry if I've missed anyone. I'm alright, just the usual chemo stuff. I'm pretty sure the enlarged lymph nodes on my collar bone/neck are shrinking though :) fingers crossed!

Love to all

Hi motherlondon sorry I cross-posted with you. Welcome to the thread, but I'm sorry you've had to join us

I have bowel cancer so can't be of much help. But lots of the others have been where you are now. That all sounds like good news so far. Well, good news in cancer land anyway!

Hi mother, you're understandably in shock. I had a lumpectomy two years ago and I had three lymph nodes removed which were all clear. The operation takes about a month to recover from, no heavy lifting or driving, the usual stuff after surgery. Because it was caught early and was small and it was a simple type I didn't need chemotherapy and just went on to have 15 sessions of radiotherapy. I now take a tablet, tamoxifen, everyday and life is back to normal pretty much. Mentally there will always be the fear of it coming back but that does subside somewhat.

It sounds like everything is looking positive for you and you have every chance of reaching an old age and seeing your children and grandchildren grow up. Obviously the lump needs to be analysed to see exactly what type it is but don't panic just yet. Sorry this is a bit rushed, I'm off to the dr myself shortly but if you have any questions I'll be back later.

Thank you both. Mrsrhodgilbert, that's exactly what I need to hear right now, sorry you had to go through it to be able to tell that tale.
Lying here (in Aus) with two kids asleep beside me, trying to stay calm.

Welcome motherlondon. I'm very sorry to hear about your friend. And with two small children on your own, well, it's a lot, isn't it. Do you have people who can help out post surgery and for moral support? I hope so - and everyone here will be wishing you well and cheering you on.

I can offer reassurance on the lumpectomy front. Mine was day surgery and I felt much better after two weeks, and better again after four, albeit a bit stiff and multicoloured! Plus it helps to know the lump is out out out. Do keep up with the stretches they recommend, they really help, and some nice soft underthings. The best advice I had was that one should eat an elephant one bite at a time - just try to get through each bit of the process and not think about the whole of the treatment all together.

Anyway, you may well not have wanted advice - in which case, apologies! And have a virtual handhold for Tuesday instead.

Hello all lacies! Please forgive not checking in properly and thank you for the cheering up. Wishing minimal SEs and easy afternoons to all.

Welcome mother though sorry you have to be here. I'm glad they think they have caught it early and it's great they are doing the lumpectomy so soon,I had to wait a month for mine which was hard. The actual op is fine, I was out of hospital that day and you can barely see the scar now. I did have chemo due to my age and the fact that it was in my sentinel node but even that was hard but doable.
Taking 1 day at a time is excellent advice
I'm sorry about your friend that must make you worry more

I'm back from seeing the GP about the hysterectomy. Her opinion was that it seems a rather drastic thing to do on the basis that I've had three massive bleeds on the tamoxifen over two years. I'm tending to agree with her. Although they have been dramatic I don't think surgery is called for just yet. The issue is that each time they have to scan me and do a hysteroscopy to check for endometrial cancer. But although not great I'd rather have several more hysteroscopies than major surgery with all the problems that could bring. So I'm going to do nothing until I see the gynaecologist in October, unless it happens again. Apparently I could even remain in tamoxifen for the whole five years or even switch back to it if the anastrazole didn't suit me.

Mother, I hope you've been a little reassured, I'm sorry about your friend. The thing with breast cancer is that's it's not just one disease, there are many different types. Some are easier to treat than others but even the difficult ones are having lots of funding thrown at them and are getting much better drugs. Things may be done differently in Australia but I presume the parameters for the various treatments will be similar. You'll need a bit of help after surgery with such little ones, I hope you can call in a few favours or gave family around.

Welcome mother, it sounds like you have caught things early and I hope that you get through the op fairly trouble free. I had a lumpectomy last Jan and one lymph node removed. I was only in hospital for the day and was very surprised at how little pain I was in afterwards. my lymph node scar in my armpit was the most sore, but my breast only really bothered me when I went from lying or sitting to standing (when I think gravity pulled everything down!) or when I walking. I was back at work full time 2 weeks later (although that was as much to do with my crappy boss and sick leave as it was to how I was feeling).

chewing, sorry to hear they weren't happy with the scan. I hope they get back to you with the results quickly and it's not bad news.

mrs, how did your appt go with the gp today? hope you were able to get the answers you needed.

I finally met my plastic surgeon today and made my decision regarding reconstruction. I'm going for the DIEP flap recon and am booked in for surgery on 10th Aug. I'm going to make tomorrow my last day at work so that I can use next week to get organised. I feel relieved to have made a decision even though surgery of any kind is the last thing I want. Now my brain is starting to think about the cancer side of things.... If only it would switch off for 5 mins!

waves to everyone, hope you're okay

Just X posted with your Mrs. will take a proper look at your reply now