Cancer Support Thread #81 Newbies welcome

[TopOfTheCliff]

This is a kind and friendly place for those with cancer or those worried they have cancer (or who used to have cancer) to hang out.
Please introduce yourselves and chat away. No issues are too big or small here.
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@needabitof Have you had any more news yet? Hope the ct was clear.

I'm trying to boost my mood prior to tomorrow's chemo and just saw a meme about being bald that made me laugh - you know that any hair in your food isn't yours. I would also add that the hoover doesn't get so clogged and showers are about ten minutes shorter, and no need to spend time styling it.

I also spent a happy half hour searching for a Christmas themed headscarf for the coming season.

Hope the chemo goes as well as it can Sewing

I am just watching 90 day fiance on Discovery to distract myself.

I looked at the headscarves and hats the other day, I am not sure yet if I will have chemo or not as I am her2 negative but they said maybe - I would be half tempted to get some teddy bear fleece from dunelm and just make myself a headscarf, it would probably look like I had become a sheep but would be soft.

@silkieschickens The only thing I would say is beware buying things that might make your head hot. Chemo can play havoc with your body temperature - my headwraps come on and off all the time to try and regulate my temp. Another reason why I don't wear my wig very often.

But hopefully you'll not need chemo and head coverings won't be necessary for you ❤️

@SewingBees I cooked something for DH a few weeks ago and he found a long hair in it. Not sure how because it wasn’t either of ours! I did ask him if he’d got a girlfriend he hadn’t told me about before.
Hopefully the reduced dose will help you, it did make a big difference for me and meant I managed all 4 rounds instead of giving up early.

My hair is uncontrollable now, it’s coming back curly and just sticks out everywhere. I also have loads of hats and a wig that I never wore. I just embraced the bald look and stared down anyone that looked for too long.

@Silkieschickens I think there are long delays for people having delayed reconstruction so if possible, it is better to have it all done at the same time. I had a lumpectomy and full axial node clearance with a reconstruction done and the other side reduced to match at the same time. My tumour was very big (15cm), and all of my lymph nodes along with a lot of other tissue had cancer in them which is why I had chemo before I am having more surgery because there wasn’t a clear margin on the tumour. I had drains and pico dressings for a week and then had to go to the wound clinic run by my surgeon’s first assistant for removal and dressing changes. Then back a week later for dressings removed then another week later for results.

I spoke to the patient safety woman that is investigating my complaint from my extravasation. Her report is nearly ready, she is just waiting for some records to try to resolve a discrepancy but it’s a crucial point in my medical negligence claim so hopefully she will do a thorough job.
My chest is very sore though still and it has stopped improving. One edge is rock hard and keeps contracting which makes it more painful. I just want to be able to sleep on my side again.

Hello, just wondering if anyone is around and about for some advice? I’m going to the breast clinic tomorrow - I found a lump a few weeks ago..when I went to the gp she found a lot more (both sides)….Trying to keep myself calm…. Earlier this year I developed some gastro issues, they were concerned about weight loss and gave me both an mri and a ct (pretty much from neck to thighs)…neither found anything…is it not likely that these would have picked up tumours if they were there back then? So concerned as to how long the lumps have been there - I like to think I check regularly but I’ve been so preoccupied with the gastro….😬

Thanks Sewing and MrsPnut and sorry you need more surgery Mrs Pnut.

Blinking Maybe ask your doctor if the last MRI included the breast. I just had a breast mri with contrast and mri is definitely a method used to see, but I was lying on my front and had dye injected for last part so different to my head and spine mri where I was on my back. Definitely get it checked and hopefully will be all clear.

Thanks @Silkieschickens - I was on my back…though was injected with dye (in addition to drinking a foul liquid that gave me an upset stomach - not what you want in an mri scanner😫!!) ….just praying it’s multiple cysts as opposed to anything else🤞.

@Blinkingbatshit I just had an abdominal CT with contrast for reconstruction mapping and it picked up my (known) L3 sclerotic lesion, even though that wasn't the reason for the scan. I get full spine MRIs twice a year and they don't pick up the existing breast tumor (which you wouldn't expect them to) so it really depends on what they were looking at/for, how the MRI was set up, etc. CT with contrast, though, if there was something worth seeing and within the scan field I imagine it would have had a better chance of being caught.

That being said, smaller amounts of cancer (sub 5mm I think) don't usually pick up enough tracer to be seen so could very well be something was growing in the breast then and wasn't large/active enough at the time but may be now (although that seems hard to believe that level of growth from undetectable to by touch). Bilateral BC is also very rare, but best be reassured!

Ladies who have had DIEP flap reconstruction - what did you use for the firm control pants requirement? As in brand/style name? Ive got the spanx higher power panties which feel like Im putting on a swimsuit and are high enough and supportive enough in the stomach, but can't tell if they are firm enough support. Finding these garments is driving me round the bend - there is limited stock everywhere and online and I am a larger size to begin with so its not like I can just pop out and find what I need instantly.

Ahh, the ct didn’t use tracer (I’m allergic)😔. Barely slept, truly terrified.

@Blinkingbatshit welcome to the thread nobody wants to be on. May your stay be brief!
Firstly you know the statistics are on your side. Most referrals to breast clinic are for benign conditions. It’s highly likely your lumps are hormonal and haven’t been there very long.
While you wait you need to keep busy and distract yourself. Tidy out some cupboards. Buy and wrap the Christmas presents. Cut the hedges Run 10 miles.. You get the picture, don’t give yourself time to think. Then download an app like Calm or Headspace and use it at 2am. If you can’t sleep ask your GP for some short term help, or buy some sedative antihistamine like drowsy Piriton, chlorphenamine, which isn’t addictive.
You will feel much better once you know what is going on. In the unlikely event it is bad news don’t panic. We have your back here.

My lovely DD is setting up a beginners running programme in Torbay for current or past cancer patients. If anybody is interested DM me.

I got hold of my favourite BCN and she has referred me to a doctor specialising in drug side effects and told me I can STOP the horrid anastrozole. I’m the one in three that gets awful joint pains. Also she told me as usual to do less to let the arm pain settle. Maybe I will take my own advice and get on with Christmas. Also my scans won’t be till next year now. Feeling more settled now I’ve talked to her.

@MrsPnut are you having surgery soon? I hadn’t realised. That’s tough with Christmas coming up. Last year was a complete wash out for me with my leg in plaster and the operation on Dec 21st. This year will be fun if we can avoid Covid which is still rampaging in Devon.

Regards to all
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Hope this isn’t a taste of tings to come. Tearfully arrived at ward for breast surgery after waving DDs goodbye, only to told I shouldn’t have been told 7.30 am and to come back at 11.00. Luckily I live within walking distance, but was a bit of an anti climax, and I am getting hungry and thirsty but still am nil by mouth!
Hey ho, will set off again in about 3/4s of an hour…

@Podgedodge That’s awful, I’d make a complaint afterwards when you feel a bit stronger via PALS.

@TopOfTheCliff Surgery is next Wednesday and is just a small one this time so hopefully recovered for Christmas. I’m hoping that the light I can see at the end of the tunnel is not a train coming towards me!

@Podgedodge

Hope this isn’t a taste of tings to come. Tearfully arrived at ward for breast surgery after waving DDs goodbye, only to told I shouldn’t have been told 7.30 am and to come back at 11.00. Luckily I live within walking distance, but was a bit of an anti climax, and I am getting hungry and thirsty but still am nil by mouth! Hey ho, will set off again in about 3/4s of an hour…

I had something like that. Was told to arrive by 11 for nuclear medicine appt and then surgery in the afternoon slot at 12:30. Waited all day and op was cancelled at 5pm. Told to come in next morning instead for the first surgery slot of the morning. Polite fight with receptionist who said I wasn’t on the list. Eventually got op at 3:30 in the afternoon midway through all the other patients who had come in for their afternoon ops for wisdom teeth, broken arms etc.

So sorry to hear that Podge hope you are now there and going ok.

Hope surgery goes well for you on Wednesday and you are recovered for Christmas MrsPNut

My next appointment after ct scan tonight is likely to be 3rd December so would not be surprised if I get surgery for Christmas though would rather get it operated on than delayed and the cat will be happy with 2 Christmas meals. After the mastecomy I read you need to sleep on a recliner, is that true, happy to by things but not sure what I should be getting, sorry for the 10 million questions. Hopefully the doctor will stay more than 5 minutes next time so can ask things though nurse stayed and she may know more about recovery.

Thank you so very much for your kindness @TopOfTheCliff Xx

Hi everyone I’m hoping it’s ok to join this thread? I’m waiting for mammogram and ultrasound and as I’ve had breast cancer twice before I’m feeling very scared that it’s come back again
I’m 56 first diagnosed in 2002
I’ve had various surgeries radio and lots of chemo over the past almost twenty years I guess I’m feeling thoroughly fed up that I’ll probably have to go through more
Dreading telling my youngest who’s twelve
Plus my beloved mum has just been told she’s got widespread cancer too
It’s a lot
Anyway I’ve read this thread and found it very helpful so thank you
Sending good vibes to you all

Hi I just found I needed an armchair arrangement of pillows postmastectomy and that enabled me to sleep fairly comfortably . Although not on my side which is what I prefer but it did help. Hope this helps a bit

Ive got both a wedge pillow (buy from Amazon) and a pillow with arms thing (also Amazon, though TK Maxx may have some as well). DP has been banished to the second bedroom for a few weeks so I can set up my space and have everything easily to hand.

Been running around trying to sort out what I thought I needed in recovery garments based on a generic hospital pamphlet I was handed at pre-op assessment, only to finally talk to one of the nurses to find out my PS in particular doesn't require control pants and a set of sports bras I already had would be more than fine. Guess Ill just return these other 6 bras and four sets of control pants then! Overly stressed for no reason - I think a step was missed somewhere as I never had an appt to talk to the PS nurse although the coordinator indicated that was supposed to be booked.

Ill believe this is actually happening when I am on the gurney and the anesthesia nurses are running the cannula into my hand.

@nongatron Welcome, hoping your stay on this thread is a short one, though having been through all this before you'll have a better idea than most about what could happen. When's your next appointment and how are you feeling?

I'm surfing the steroid effect after yesterday's chemo and preparing for the inevitable crash that will come tomorrow when I'm no longer taking them. Last time my husband found me sitting on my daughter's bathroom stool crying because my feet hurt too much to stand and helped me to bed. Although it was only 3 weeks ago it seems a lot longer - a bit like childbirth I seem to forget the pain and discomfort quite quickly.

So, back home in my own bed feeling sore but relieved to be back here today.
The procedure was a wide local excision and auxiliary node clearance.
Now just to get better for three weeks then hear results…Lots of waiting in this game.

And so sorry @nongatron, what a lot to cope with!

Sorry you're back here with us @Nongatron

I'm a bit numb today, what was meant to be a follow up appointment, at 9am face to face has me 20 mins later with a canula in my arm and at lunch time having a CT scan.
I'm now on a chair in a waiting room.
Feeling very scared and alone.

Just popping back on this thread to ask if anyone knows how long it is before you can return to work after a masectomy? (Office job). Last time I had a lumpectomy and node biopsy and returned to work within a few days which helped keep me sane. Now my Consultant is talking about a Masectomy I'm worried it's going to mean weeks stuck at home.
Hugs to everyone going through treatment at the moment.

@PaddingtonStareBare offering you a big hand hold.