Cancer support 67. Waiting for tests, just diagnosed or needing a handhold through treatment

[purpleunicorns]

Welcome to the 67th cancer support thread, the previous one can be found here.

If you're looking for advice, have any questions or just need some support while you're waiting for test results or treatment to start then pull up a seat and make yourself comfortable. You can rant, cry or scream if you need to but we do have some laughs along the way

No questions are silly so please don't feel embarrassed about anything you want to post. The chances are at least one of us has been there at some point!

There's a whole variety of people with different cancers at different stages and nobody goes unanswered, the people on here are amazing (even if I do say so myself ) and they have been a massive support to me over the last year.

If you have a friend or family member with cancer then there's a support thread for you here with lots of practical advice to help you support your loved ones

At the beginning of each thread we give a brief summary of who we are and what we have to save us trailing back through old threads

Here's mine: Im 35 and was diagnosed last October with cervical cancer, despite chemo and radiotherapy I found out in June that it had spread and I'm now having palliative chemo to keep me stable. A scan a few weeks ago showed that there was no new growth after 4 lots of chemo. 2 more chemos to go for me so I'm hoping it stays that way

Evening,

Well that was a busy day (I did the ham and we got around to making the flapjacks - thanks Leslie for the flapjack recipe. They are unctious, gooey and delicious. Santa has been left one instead of a mince pie tonight!)

I also had to buy Quality street after the earlier chat as had the urge to eat strawberry & orange creams! (The kids pinched them and now it is green triangles, caramels and coconut ones left I think...)

Glad you have a chance of getting out of hospital 2mo purple I hope it is possible for you.

Yay for having a new plan keepcalm

flyingarcher also in drone land, am not driving yet after my op (2mo is the earliest they said) but yes to meeting in the NY. I have my parents staying and brother & sil over from 28th for a while too.

huffy sorry you find yourself here, I also gave Breast cancer and had a PICC line for my chemo. I am glad I had it on balance as my veins are still OK as a result. It did take a bit of getting used to, but was fine. The PICC care was done at the local hospital when I wasn't having chemo and they were pretty flexible.

ranout my eldest woke up after I had filled the stockings, I convinced her it was really late (it was 9:30pm but I was tired so did it earlier as they were both snoring) and to go back to sleep (which she did!) phew!

TQ I have never got on with cooking/using tofu for some reason. I do like it if i am in Wagamama's though... I have a vegan cookbook called Bosh that is really good and I have a few dishes I make out of it. A cheesecake does sound more enticing than a tofu-cake
I still have the 2 lumpy rash things on my face. Today's nurse thinks it looks like an allergic reaction, so have put aqueous calamine lotion on them and taken an anti histamine. Everyone seems to think if it was shingles, it would have spread/got worse by now. It is sore, but hoping it will go away soon with the anti histamines... Am hoping the drain will be able to go tomorrow too as there was still too much fluid today for it to be removed, so one of the sash nurses will be out to me again in the morning.

I hope everyone has a good night and feels as well as possible for tomorrow. Merry Christmas

Merry Christmas everyone!

Merry Xmas all
Mrs T - I also go into denial at times. I have had4 rounds of 3 weekly chemo (AC) and side effects have not been too bad so I’ve managed a bit of head in the sand. I’ve also not shared my diagnosis too widely and my wig is very like my normal hair was so I’ve kind of managed to hide it. Not sure that’s a good thing or not! I am moving onto 12x weekly taxol with herceptin and perjeta this week so I imagine it’ll be harder to stay in denial.
Has anyone here had a mastectomy with DIEP-flap reconstruction (tummy fat one)? I’m leaning towards this but interested to hear from anyone who’s had it.
I have had a port fitted rather than PICC and apart from the initial insertion and one week when it was sore while healing it’s been great. Easy for nurses to use and you can do everything with it. I’ll be having herceptin for a year though so probably made sense for me!

Happy Christmas everyone. Hope you all have enjoyable day. My husband said something about it being a strange Christmas this year and I said can we not over-analyse it? I just want to take it as it comes and enjoy what I can. Stepson arrived last night so it was lovely to see him and my mum is dropping by for a coffee in the morning before she goes to my sister’s for lunch. I usually cook my stepson breakfast on Christmas Day morning (smoked salmon and scrambled eggs) so I hope he will still want me to do that as it’s a little tradition & now he is all independent I don’t get to do much for him!

Keep Calm. Good that you know what the next step is now. I will be having a mastectomy too in Jan.

Simm. I think reconstruction is delayed here but I have pretty much decided against it. One of the District Nurses was saying how amazing my consultant’s cosmetic work is so I will look into it but at the moment I am thinking I won’t have it done. I will be having Herceptin for ages but now my chemo’s finished I’m told it will be an injection in the thigh every 3 weeks.

noodles. Hope rash just turns out to be a rash and not shingles. I think following chemo I get some strange bruising and rashes in various places that eventually go. Just wanted to ask you about the not driving thing? This hasn’t been mentioned to me yet.

I’m having a mastectomy and Just wondering how I will get to my radiotherapy appointments if I can’t drive for months. Everything else I can probably manage.

Xx

Merry Christmas all!

Simmi1, I had a total mastectomy and reconstruction with DIEP flap two years ago. I'm very happy with it, not least because I had a big tummy (under 8 stone but always a bit of a belly I could never get rid of), which is now nice and flat, and my new boob is just like the old one!

Some things to note:

• extensive operation (I was under for 11 hours)
• recovery was tough as it's like being the lady sawn in half at the magic show; 5 days in hospital walking doubled over at first as the skin and incision needed time to stretch and allow me to walk upright with my back straight finally; 2 months on leave from work recovering with gentle stretching and exercise
• pain pretty bad the first few days mainly due to the large tummy incision, but manageable
• they kept me in a very warm hospital room after the operation to help keep the newly stitched together, tiny blood vessels between my tummy fat and chest wall from constricting and shutting off blood supply to the fatty tissue
• has to be in a corset for weeks, drove me mad with sweaty itchy feeling!
• massive long scar bisecting my middle at the front (from hip to hip), but I use Kelocote to keep the scar relatively thin
• lost my bellybutton but they made me a new one, surprisingly authentic looking
• no feeling in the circle of transplanted tummy skin on my reconstructed breast where the nipple used to be; also no feeling on either side of the incision/scar on my tummy (the size of the area of numbness appears to be diminishing 2 years on); doesn't bother me so much, just feels weird

Despite all the above I don't regret having the DIEP flap done at all. My new breast feels like (is) real flesh, warm and can withstand the rough and tumble of life with DS. Unlike having implants, there's no point where they need to be replaced. I'm not precious about a lot of scars; I don't wear a lot of midriff baring clothes anyway. Perhaps for me mentally it helped to wake up from the surgery and still have a 'boob' so didn't feel its loss so much if that makes sense.

This month, 2 years after the DIEP, I had revision surgery to shape the reconstructed breast a bit better. TBH it was perfectly fine after the initial op, and in a bra no one could tell anything different (the reconstructed one was ever so slightly larger and more 'full' on the side and top). Now it's great after some liposuction of fat to create a more natural teardrop shape to match the real breast on the other side. Also some of the scar on the breast looked like a sunken ridge with swelling on either side (again only a subtle effect), so they re-cut it to smooth everything out. I hope I explained that in a way that makes sense.

Next year I will probably have the nipple done. The surgeon advised waiting for a while for everything to settle, so that when they do create the nipple it's in a good position aligned with the real one.

If you have any more questions let me know!

javabean. That’s all really useful info. Thanks.

Yes really helpful javabean - thank you so much!

Sneaking on quickly as unbelievably, I have woken up earlier than the kids!

mrsT the no driving is for a fortnight as a minimum. The BC nurse said to me don't drive until you have the movement to look over your shoulder easily (as you would if pulling out & checking for traffic at a junction or coming up behind you) and also when you feel able to perform an emergency stop. I feel I could drive now if I wanted. My main issue now is that as my drain is still in, I am (still) wearing a tubi grip type corset thing to keep pressure on the site so it drains. It manages to roll down from the top (my good boob pops out frequently!) and the twice I have been a passenger in a car, it has not been that supportive, so I have had to hold my sore boob as you feel every lump and bump on the road... I am looking forward to the drain coming out so I can wear one of my shock absorber sports bras (& have a proper shower!!)

Thanks for the reassurance regarding this lumpy thing on my face. I didn't actually have anything like this during chemo (& my last one was 2nd Nov) so thought I had avoided that sort of reaction. I guess the chemo stays in the system for a while. I am just glad it is looking less likely to be shingles now!

Just going to nip downstairs to make a sneaky cuppa before everyone wakes up now..... Merry Christmas lacies x

Merry Christmas to all of you- I'm really sorry not to post more often; it's because I want to mostly not think about it. But I wish you all the happiest and healthiest Christmas you could possibly have xxx

@BitOfFun great to 'see' you, have been sending you virtual positive thought hoping you're doing okay

Merry Christmas to you All. Am very glad to have found you, thank you

Merry Christmas to the loveliest people on MN (if not the World!). Thank you for keeping me halfway sane. I hope everyone has the wonderful day they deserve today

Just popping on to say Merry Christmas to you all... I'm thinking of you.
I'm awake and thoroughly over excited about Christmas... astonishingly my boys (12 and eight) are asleep....!! Sooo boring...!!

Merry Christmas everyone! I hope you all have a good day 🎄

Merry Christmas everyone. Hope you all have a lovely day.

Merry Christmas 🎄 all you wonderful people in my phone! Hope everyone has a great day with as much chatter/cheese/chocolate as you can take

Mrs I was off the road for 2 weeks with both my lumpectomy and mastectomy so you'll be fine by the time you need radio (6-8 weeks post op?) I found the mastectomy more comfortable with driving post op as there's no wobbly boob jigging the wound around!

We're off to SILs for lunch so lucky me no cooking... just need to find an outfit that goes with my gorgeous Mint Velvet shoes Santa brought me....

Thanks KBG. Yes oncologist has said that radio will be about 6 weeks after op. Hope you have a lovely day. I really like Mint Velvet stuff. Their shoes/boots are lovely.

Happy Christmas lacies! thinking of everyone today x

Merry Christmas lacies, hope your all having a lovely day.
My DS was awake at 4am!! He was snarled at and went back to sleep till 6, much more reasonable!
Had a lovely day so far just the 4 of us. I've had champagne, too much Christmas dinner and my DS is asking for pudding! I also managed to cook it all, and enjoyed it!
Thanks to you all for making this much easier journey I feel honoured to be part of the team!

Happy Christmas everyone. I think we’ve managed to have a day without the kids realising the shadows on the horizon- they’ve had a lovely day.
My main worry has been my mum whose dementia seems to have escalated. She now doesn’t seem to remember where she lives, but insists I should get her back there.
She’s trying to alienate my sister which just leaves me to support her - I can’t bear to think what will happen if I’m not around. I’m sorry I just want a little cry! X

Toofarout. It’s fine to have a little cry. It’s very difficult dealing with the waiting and also your mum’s dementia.

My Christmas Day has not been great. I’m still feeling the side effects of chemo so have that horrible metallic taste in my mouth, lack of appetite and achy joints so couldnt really enjoy the food. My husband and I have been a little bit irritable with each other today.

I’ve come to bed as hardly slept last night and I’m just going to read and browse a few sales.

Xx

Gentle hugs to Toofar and Mrstraveller

ranout I'm glad you've enjoyed your day

purple did you manage to escape from hospital?!

I've had a few wobbly moments, but overall a lovely day. I took a sleeping tablet last night and actually slept. That was my best Christmas present, to be honest!

Does anyone take melatonin? I'm wondering about trying that if my sleep problems continue (will check with oncologist first, obviously). The zopiclone is great, but I don't want to rely on it and end up needing a higher dose etc.

Toofar that sounds really tough, you cry as much as you need to

Hope you a bit better tomorrow MrsT and get loads of bargains in the sales

Glad you had a nice day Leslie. They let me out of hospital at 3pm today to spend some time with my family but I have to go back in on Thursday as my kidneys aren't quite right still. They've taken me off morphine and put me on oxycodone which is absolutely useless so I can hardly move without being in loads of pain.

I've never heard of melatonin, I take 3.5 zopiclone which gets me to sleep but doesn't keep me asleep so I end up taking another one during the night when I wake up. I really need to see about changing my sleeping tablets too as they aren't working for me

purple. Sorry to hear you are in pain - that’s shit. Hope they can put you back on the morphine or give you something that works. I had zopiclone when I was first diagnosed but like you it started off great but then I started only getting about 3 hours sleep a night so seemed a bit pointless. I live with a strange sleep pattern now but then most of the time I’m not in pain. I think if you are in physical pain or discomfort you do need something that will knock you out at night!

I’ve put a few things in my basket from the sales. Will review again this morning. They’ll probably be out of stock now!

Leslie. Glad you enjoyed your sleep. I’ve never tried Melatonin. Is that the stuff you can buy over the counter in the States but we can’t get it here?

Morning lacies
Just a quick one @WhatWouldLeslieKnopeDo my niece has been prescribed with melatonin she was born blind so they think it's hard for her to differentiate between night and day, anyway it sends her off for a few hours but she does wake early mornings.