Roll up, roll up and join the lacies for CANCER SUPPORT THREAD 59 - anyone with cancer is welcome (and those awaiting test results)

[WhatWouldLeslieKnopeDo]

Hello everyone,

This is the cancer support thread, which has been running for many years under different names. Most posters have breast cancer, but various other cancers are represented too! Whatever cancer you have, feel free to join us. We also welcome those who are awaiting test results to find out whether or not they have cancer. We know how difficult the waiting can be and we are happy to hold your hand. Hopefully you won't need to join us permanently

Feel free to ask any questions. There will usually be someone who knows the answer or will know where you can find it.

Whatever you do, stay away from Google!

You can post anything you like here. We don't mind swearing or complaining or angry ranting. We aren't brave or inspirational and you don't need to be either. Nobody signed up for this, but we support each other as best we can

The previous thread is here

God chewing.. .I feel like torching your hospital...any other lacies coming with me???!!!
Must be so exhausting for you.. .
Im.good...juggling childcare, work and anxiety...but sort of fine.
Have to admit I wasn't expecting the post treatment crash...i preferred the immediate euphoria!!! But that is nothing compares to others.. .I do realise how lucky I am....xx

i am back from 4 week check up with the dressings nurse - slight infection in a tiny bit of tummy stitches, but nothing to worry about and a lecture about doing too much!

the surgeon came and said hello which was nice....and then she causally said no more surgery needed for you so thats a relief as the huge amount of stomach she had to play with has resulted in a very generous new left boob

except i always said from the first appointment i want a symmetrical look and a lift for the right side had been discussed....but....it seems because the left and right are now the same cup size its been dismissed, plus the bomb shell of a lift only lasts a year and then it all sags once again leaving much scare tissue so pretty pointless - this is all news to me!

i feel a bit cheated this wasnt discussed at any other appointment but saying that i do have cleavage once again and they do look the same while wearing a bra !

the mysterious letter from pathology has been cleared up - it wasnt any thing to do with the moles they removed - seems the piece of rib they cracked open to join the new boob blood supply to had a strange looking area inside it....a cyst with some calcified area but not cancerous - just like my kidney! ive asked for the report to be sent to the bone consultant for her opinion

im pleased with my new boob/look/appearance tho have to feel a miffed at the new information about a lift only lasting a year!!

silly to piss and moan, im embarrassed to be doing so when others on this board have much more to contend with than a saggy boob

Chewing. FFS. I'm reluctant to ask if you got your appointment, but I hope they got sorted and you're doing as well as you can. Sending you love and a hug.

Leslie, a bit thin on sunshine for us in Scotland, but the kitten (boy) is just fab :)

Twitter, fingers crossed that things go a bit more smoothly from now.

Aww, Baubles, totally understandable to feel miffed when things don't turn out quite how expected, along with the lack of info. I really do think that quite a lot of the medical people behave on a need to know basis, and it's only when you ask that you really do find out what's going on. Which relies on the patient to know what to ask of course. So frustrating.

I wonder if I spoke too soon about being in the post treatment stage. I've had a few cardiac hiccups on herceptin, and thought that the breathlessness and pain I had at the weekend was related to that, so I mentioned it at my herceptin appt yesterday. I didn't have treatment and BCN has referred me back to onc for an appointment tomorrow and a chest x-ray, which of course has sent my mind into overdrive. Just when I felt I was getting somewhere, I'm right back into the anxiety and fear and what ifs. I woke up this morning with a pain around my shoulder blade and I'm sure you can imagine what my first thoughts were.

Wave to everyone.

Good afternoon
Flippy hope that your pain eases and that it is nothing too serious
Surprise, surprise my appointment is still not sorted The letter doesn't appear to have been faxed as promised and the other end have been chasing this up themselves to no avail. I have also tried calling the secretary today but the 'phone is going unanswered. I have now escalated it to the consultant directly using an email I found online so hopefully he gets it. It is so frustrating. The consultant was expecting me to have had rads when I next see him in 2 weeks but that's looking unlikely.

Hope everyone had a good weekend in the sunshine.

Chewing Words fail me.... I know people are only human and mistakes get made and people don't do what they're supposed to.... but still..

You'd like to think that someone, somewhere understood why it's important that you get the attention and treatment you need asap.

Just had bloods... The merry-go-round starts again tomorrow.

Perhaps on my death certificate the cause of death will be ' terminally slow NHS admin'

Oh Chewing. What a fn shambles. I realise that you might not be up to battling to get treatment, but a few thoughts if you are, and please feel free to ignore.

Is there a charity connected to your hospital? When I was having a few issues with my hospital, I contacted the charity CEO directly, he wasn't able to help directly, but did put me in touch with some of the senior NHS managers. Trying to find out who to speak to can be impossible! Can you contact the Head of the NHS Trust directly? Can PALS help you at all? I can only imagine how frustrating and exhausting all of this is.

Why on earth does the NHS still type and fax stuff anyway???

I hope your consultant steps up for you very soon. More hugs being sent your way.

Chewing it never ceases to amaze me how shit your treatment is. You're bloody amazing for forging onwards.

Looks like my tumour is finally being evicted tomorrow. In fact, today! Currently on the ward failing to sleep. I was given a lovely private room on arrival but kicked out when they decided someone else needed it. Since I got on the ward at 10, 2 of the other 3 ladies have pooed in their beds and the 3rd has wet the bed. Needless to day my relaxed state and planned good night's sleep have disappeared and I'm now lying awake listening to snoring and moaning and going tomorrow night I'll be too out of it to worry about what's going on around me!

See you on the other side!

LittleGrey I can't sleep either at the moment so if you want a chat I'm here for a while. I hope you can get some rest and hoping the op goes well. I bet you will be relieved to get rid of it!
I finally got a message this evening to say a letter is going out for an appointment at the end of next week. Not exactly quick but it's a start. I still reckon that rads will be another week or 2 after that (providing the tumour hasn't burst through my boob)

I suppose progress is something but it's painfully slow which isn't fair in your circumstances. I hope someone finally surprises you and gets Things sorted very fast. Pigs flying and all that.
Things seem to have got a little quieter here, finally. My biggest issue now is a forgotten important part of my breast pump (still feeding 9mo DD) and now very uncomfortable. Considering asking a nurse to try and get one over from the maternity unit but not sure they'll be impressed with that!

Definitely tell a nurse about your discomfort. I'm sure they'll sort a pump out for you - hopefully you're not in a hospital in my neck of the woods

The baby will be at uni before i get a pump if I'm at your hospital though, surely? I really wish that was more joke and less reality!

Thank you. That's the first time I've thought of my hospital and laughed.
I do hope you can get a pump sorted and that all goes well with the tumour eviction (sounds like a bad episode of CBB).

Pleased to be of use! Thank you. I look forward to reporting back that all is well asap.

LittleGreyCat hopefully you've had your op now and are recovering peacefully (and I hope you got a pump!)

chewing FFS! It might be quicker for you to do the radiotherapy training and administer it yourself at this rate

Flippy fingers crossed for the x ray

Twitter I hope today went well

baubles sounds like mostly good news. I hope the infection is clearing up. Annoying about the surgery! TBH it seems bizarre they would even offer that surgery if it's such a short term improvement

Waving to everyone. I was at a festival at the weekend and now at the seaside :)

Hey Leslie
You're living the high life! Hope you enjoyed the festival. Today was fine. A long one. The chemo didn't arrive til gone 10, though and then it all went through slowly as I'm effectively starting from scratch again. I won't be fine at the weekend, but hey, onwards and upwards.

LittleGrey
Are you awake yet? I'm guessing probably not just yet. Hope you're up and out soon.

Wishing you well LittleGreyCat.

Thanks Leslie. I had the x-ray at noon and BCN called me at 6 to say it was clear. Big phew, although now back to worrying about my heart. I'm back to cardio in a couple of weeks.

Twitter, hope you're doing ok, if not fine.

This came up in news today (hope I'm not treading on Amber's toes, but it's very interesting) onlinelibrary.wiley.com/doi/10.3322/caac.21393/full - changes in breast cancer staging (American). It takes into consideration grade, hormone status and HER2 expression along with stage to give a bioscore - and for some women, me included, there's a significant positive change in predicted % 5 year survival.

Twitter sorry it was a long day and I hope the side effects don't hit you too hard hopefully it'll be slightly more bearable now the end is in sight.

I am indeed living the high life. I'm so bloody grateful for this surgery. I harp on about it all the time, but it has absolutely transformed my life :)

Flippy that's excellent news about your x ray and great your nurse let you know do quickly. Though sorry you're still worried about your heart. I hope the cardiologist can give you some reassurance.

Also that's interesting about the bio score. Hopefully that will help with treatment decisions etc. I wonder if the UK will start using it.

Did anyone else see this Guardian article by an oncologist? I've enjoyed her previous articles too. It's interesting and rather moving.

Hello lovely lacies. Hope we're all as well as possible!
Chewing, I'm hoping things speed up for you. I can't for the life of me understand what is keeping them!
Leslie, I have read the Guardian article and it really got to me, so much so that I 've saved it. How are you feeling these days?
Wishing all those going through procedures and surgery all the best.

Hi royal I'm good thanks, how about you?

It's very quiet in here at the moment. Hopefully because everyone is busy with the start of the new term and whatnot.

I hope LittleGreyCat and Tony are recovering well from surgery, and that TwitterQueen is coping OK with chemo side effects

chewing any news?

Hi everyone, I haven't been on this thread in many months, I haven't read it either but I will, I just wanted to do a little update, for new people really, I was diagnoised a year ago almost with Paget's disease and 3 cms of dcis, had 2 operations and a minth of radiation. I'm fine now and going back to work tomorrow after 11 months I just wanted to let you all know there's light at the the end of the tunnel love to you all xxx

I returned to work yesterday so have had less time to loll around the living room surfing MN....

It's not too bad though - everything I was doing has just stopped over the summer so I can simply pick it up again now (it's obviously not critical!). I had a catch up with my manager just now who very clearly could not be bothered to even listen to me. She was IM'ing someone else and didn't hear a word I said. Fantastic. She asked why i just didn't take more time off til I'd finished chemo.... . I had to explain that that might take a while.....

I'm doing well otherwise. The brain is remarkably clear! I can string two sentences together - amazing! Back in the chemo ward again tomorrow, though it's 'only' a small week - Taxol only.

Hi everyone! Sorry I've not popped back sooner to let you all know I'm ok. But I am! Ok went ahead Wed afternoon. I was home by Thursday tea time (and by home I mean my mum and dad's where I'll be for a few more days i think). Currently dealing with lots of swelling and head-fog and pressure in my skull but not doing too badly if I'm honest. Hippie everyone else is ok x

Afternoon lacies. Hope everyone is doing ok.
LittleGrey hope the op went well
bobdylan ad Twitter glad to hear that you are both back at work and things are relatively back to normal. Not that things will ever be fully normal again but you know what I mean.

I am awaiting my rads consultant appointment later this week. Hope they sort some treatment soon as the lump is that big it feels like it will burst through the skin if left for too much longer
I do have some news Leslie. Had a call from a leading cancer hospital with an appointment next week to see their experimental medicine team. I have been referred to them twice before but they previously said that they didn't have any suitable trials. Maybe this time it's different - fingers crossed. They will do a liquid biopsy and try to offer more personalised treatment. It's in a city that I've never been to so will be a day out if nothing else

Chewing
That's potentially promising news! Hope it goes well. Fingers crossed they might be able to offer you some form of treatment.