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.

Mum2, happy birthday:) hope you get to enjoy your special day.
Mrs, I totally understand your state of mind and am so sorry you are are going to have to endure the waiting and all that comes with it untill they can give you answers. I am struggling with a lot of demons too. Let us hope our anxiety and worries are not confirmed. Sending you my heartfelt wishes for reassurance.
Leslie, hope your SEs are not tough on you this time round.
Sleepy, have you tried taking chamomile tea? It helped me somewhat with my sleep trouble.
tutti, I could not look at my wound to be honest:) i do know it was a proper surgical wound as i hd full clearance and they did cut some nerves too in the process.
Waving to the rest of you.

Hi Royal. I didn't want to look either but the nurse yesterday was a bit gung ho about the whole thing.
I know it's full clearance and I knew about the nerve cutting, but it's massive, has a really high "seam" and looks like it's been stitched with wool. It's also right along the top of the boob and not just underarm.

I've had the best care from the NHS this morning. I called my surgery at 8 for an appt, when I explained what for they gave me one at 8.30. It was a different GP to normal but very kind. He sent me straight to the hospital for X-ray which was over by about 9.15. Results on Monday, hopefully.

The positive thing is that he suspects osteoarthritis , that will do nicely although it's very painful. Fingers crossed for just getting old.

Sleepy, I'm very sorry to hear you have lost your appetite and I really hope the new blood helps.

Tutti, fresh wounds do look very gruesome and I can understand your alarm. I had a lumpectomy and SNB so two scars but probably smaller than yours. The only reassurance I can give is that they fade, two year on mine are silvery lines and in parts invisible but they looked horrific at first. Good luck with the AS results.

Royal, thanks for your kind words. Post treatment, even two years on, is still very scary but I had been feeling much calmer recently.

Mum, happy birthday, I know exactly how you feel. New Year's Eve was difficult for the same reason.

I can't scroll back so I know I've missed people, sorry.

Leslie, chewing wishing you both well too

Mrs, that is very reassuring news. Hopefully it will be nothing but wear and tear. Funny how we hail ageing!

Mrs Rhod I'm glad you got seen so soon and have everything crossed for your results

Tutti I agree that it will fade a lot, mine is under my arm and I don't really notice it much these days

mrsrhod glad that you could get an appointment so soon. Fingers crossed for osteoarthritis. Only in Cancer Land eh

mum I hope you've had a lovely birthday. And I hope you have many, many more

Sleepy I hope the transfusion helps and that your appetite improves maybe you need medical marijuana I was meant to drink those drinks for a week before my first surgery. I couldn't stand any of the flavours so I refused sorry you couldn't manage your favourite meal. That rather sucks. I hope the weight loss slows down. There was a thread on here a while back, I replied to it, about low appetite. Some of the advice might be helpful?

Tutti not the same surgery, but my wound look awful at first. It has healed quite nicely now though. I hope yours will too

Happy birthday mum hope you had a good day
mrsrhod I am glad that you have been seen so quickly and hope you get a good result on Monday
Tutti hope the AS results were as hoped. GCSE results next week for ds so that will be very stressful.
Leslie how was your chemo?
Mine went smoothly and so did the MRI afterwards. I was relaxing with tea and cake by late afternoon
Question for those that have been on holiday abroad. Did you have any problems with the airline if you advised them of your cancer treatment? I have been invited on a long weekend in Spain which one said should be ok but that I had to inform the airline. I know I can't be insured for it.

I'm such a twit. I meant to mention that in my post. It all went fine thank you chewing I finished before 5pm and wasn't even the last to leave. So that was nice. I have quite bad nausea this time so I'm hoping that'll be gone by morning.

Have you tried to get insurance? There are quite a few that cover cancer now. Lots of people use insurancewith.

I went on holiday shortly after my secondaries diagnosis. I didn't specifically inform my airline of the cancer, but I emailed them about some things I needed to take in my hand luggage because of the cancer. They didn't actually acknowledge it at all, just said it was fine to take the items. I hope they don't have any issues. Perhaps email them before you book flights?

Also good news that chemo and MRI went well. Do you know when you'll get the results?

Hi Leslie. I have insurance through my bank account so I suppose I can give them a ring to see what's covered. Didn't want to pay fortunes just for a few days. I have already booked the flights so will give the airline a call after I next speak to the oncologist again. This should be the week after next when I should also get the biopsy and MRI results but haven't had appointment letter yet - another thing to chase up tomorrow. It was the onco that said it should be ok but it will depend on how I am after this lot of chemo I think.
On the subject of results. When I last saw the onc he asked what results I had been given following my scans but it was none - I always wait until I see him or the breast consultant to ask for them. Should I be calling someone to get these?

I hope your nausea stops soon. I had a bit of nausea for the first couple of days last time but it wasn't too bad luckily. I am at your suggestion of 'medicinal marijuana'.

Morning All .
Glad/Hope the chemo went well Chewing and Leslie.
The AS weren't as expected Chewing and it's been a bit of a confidence shaker. She got 4 B's and was predicted 4 A's. As she's applying for medicine, she had a bit of a meltdown
Chewing,I have insurance through Lloyds, but when I caught viral pneumonia 4 years ago, and declared it, they still covered the family, but wanted over a £100 to cover the pneumonia. I didn't pay it, as we were going to Europe and just relied on my EHic card. Went to Mallorca just after the cancer diagnosis on the same basis.
MrsHod, this is when the NHS is at its best. Hoping that it is osteo arthritis.I
The problem with the underarm scar isn't how it looks ( although it's a bit of a doozy); it's the fact that it's raised like a cord and the two bits of skin that are joined up, form quite a high ridge. As soon as the dressings were off, it's rubbing a lot, even against the super soft breast surgery bra. Think I'l have to mention it, if it's no better when I see the surgeon.
mum I am so sorry. I read back my posts this morning and I didn't wish you a Happy Birthday. I was so busy wittering on about Cinnamon, and I was sure I had [embarrassed]. Hope you had a lovely day

Morning lacies.
Tutti 4 B's is very good so your dd should be proud. There is another year to go so hope she's not too disheartened. I am really worried about the GCSE results next week and dreading any massive meltdown. Ds feels that he will get what he needs but we'll see.
Thanks for the advice about insurance. My oncologist said that I would be covered by EHIC and didn't seem too concerned. I am only going for a short break so fingers crossed it will be fine. I haven't had any really nasty side effects so far so hopefully that will continue.

Hi tutti, my scar was catching on things initially, particularly under my arm. I mentioned it to the BC nurse who kind of dismissed it. Fortunately after a very few weeks the swelling went down and I had no more trouble. I hadn't had surgery before so didn't know what to expect, is this the first surgery for you? But if you're uncomfortable definitely mention it.

Chewing, I have never informed the airline about cancer, it hadn't crossed my mind even though I travelled days after my rads two years ago. We did pay to take out full insurance to cover the cancer though and have done since. I'd just rather know I'm covered and have declared everything.

chewing, the EHic definitely covers for you for Europe and there's no point paying out for expensive insurance, when the money would be better spent on cocktails lovely souvenirs.
The GCSE results have got to be a worry, at least ours were only AS's and don't really matter. Everything crossed that it goes well and you get what you need and a bit extra.
MrsHodge. I've got bad osteo arthritis (Grade 3/4) as a result of the viral pneumonia; . I had quite a big operation last year on knee and hip so quite used to big scars I suppose.
This one looks like I've sewn it up myself with a mirror .... and I can't sew to save my life. I don't see the surgeon till a week today, and hopefully it is just swelling and will stop rubbing so much.

Tutti don't be daft it's fine, thanks for the birthday wishes I had a lovely day. Sorry your daughters results weren't as she hoped though 4Bs is still good ! What's the plan now ?

She's still going for medicine, and is dropping Physics, so she'll just be doing Biology, Chemistry and Maths next term.
After I'd talked her down off the ledge, she admitted that she'd only been working at between 65 - 75% and she knows she has to work harder next year.
It was difficult for them to get motivated this year. Some schools didn't even bother doing the ASs this year, but in a way, it's been a good wake up call for her.

Mine is the same age and only did AS maths as she is dropping that now, the others were just internal exams she's doing A levels in psychology biology and chemistry next year and is thinking of doing biochemistry at uni.

mum they'll have biology and chemistry in common as well. I applied for Chem/Bio Chem, but ended up doing chem only (and ended up working in finance

I'm worried about how my diagnosis is already affecting her

Tutti, my daughter did her A levels last summer and is now at university. I was diagnosed just before the AS levels but managed to keep it secret. However by A level time she obviously knew and I worried about it affecting her. When she went into the upper sixth I told the school and they were brilliant, occasionally she got upset at school. They also said they would inform the exam board and her chosen university of the situation, apparently this is quite accepted. I don't know if they did either of these things in the end because I didn't push for it. However, if your daughter is working below her usual standard through worry I would definitely let her school know.

Should have said, there's actually an official scale for this as loads of students have disruption for various reasons. So imagine maybe 5% extra for death, illness, major disruption in the family. It's not all 5%, it's a scale depending on the problem.

Thanks mrsHodges. I'm going to ask the school (her favourite teacher) to keep an eye on her. That's really worth knowing about the scale thing. It hasn't affected her academic performance yet, as she took these exams before the diagnosis.
At the moment she has to get her UCAS in by 5th September for medicine, and is adamant that she's now not going to her first choice (Newcastle), as she doesn't want to be that far away from me.. I don't want her changing her life choices on the basis of this shitty disease (excuse language)

On a happier note, I was a gymn member up till the surgery (suspended my membership now), but I've just had a lovely bouquet and card delivered from my friends from one of my swim exercise classes.

And apologies whilst I'm at it. Reading back, I can hardly construct a sentence and am writing in a very peculiar/clumsy way at the moment. I'm filing this in the slightly stewed brain section. Yesterday I put the dirty plates in the laundry cupboard instead of the dishwasher, and twice I added 7 + 6 and got 11 !!!!!

My scar is on my stomach so doesn't rub, but it was quite a big ridge to start with. It has flattened and widened a bit. Now just a thick rubbery line. They were umming and ahhing about referring me to a dermatologist as it is a keloid scar, but thankfully it stopped by itself. It's worth mentioning to your surgeon if it's still rubbing, in case there's anything they can do.

Sorry about AS results disappointment.

Only thing with EHIC is that it doesn't cover repatriation I don't think. I know it's unlikely to be needed, but I couldn't bear the thought of being injured or unwell abroad and having my family spend a fortune trying to get me home or staying with me.

Definitely worth checking your existing insurance, I think they're meant to cover things diagnosed after the policy starts but who knows, they seem to be quite good at wiggling out of things

I feel much better today after a good sleep. I had heartburn so couldn't lie down for hours. Thank goodness for Rennies and Mumsnet! But then I slept in until almost 11 :)

Sorry I haven't put anyone's names as I've got in a bit of a muddle about who said what by the time I scroll up and then back down I hope everyone has a good day!

Thanks Leslie. It's got a week to get better so I'll just keep my fingers crossed. Unless they haven't got clear margins I don't want to think about further surgery at this time.
Didn't know that about EHic. I'll have to think about that further down the line.
Good for you for sleeping in, hope the heartburn is easing off.

Oh no, sorry, I wasn't suggesting further surgery. I was imagining they might be able to recommend something to stop it rubbing, though in hindsight I'm not really sure what could you tape some gauze or something loosely over the bit that rubs?

There's a list of what's covered and not covered by EHIC here if you scroll down a bit. It doesn't cover mountain rescues and that sort of thing either.

On insurance generally, in case it's helpful to anyone. I managed to get insurance after my secondaries diagnosis. The specialist people, insurancewith, wouldn't cover me because I had a diagnosis and treatment plan, but hadn't started chemo. Even though it was my oncologist's idea that I go on holiday. But I managed to get insurance though "it's so easy" and it wasn't as hideously expensive as I feared. I'm sure there are others too. But most people recommend insurancewith and it seems to be only in that very specific situation that they won't insure people :)