Cancer Support #70. Please post on this thread, not #69, If you have cancer or are undergoing tests for cancer. Rant, rave, scream, cry – whatever helps. Supportive lurkers for Leslie welcome on #69.

[TwitterQueen1]

Thread #69 is filling up with messages of support for one of our own who is very seriously ill. Leslie told me a few weeks ago that she didn’t want any such messages to get in the way of those who need support through their cancer treatment so we are starting a new thread just for those who do have cancer or who are having tests. Could we respectfully ask lurkers and supportive posters to confine their comments to thread #69? Thank you.

We normally start with a brief introduction to our cancers – I’ll kick off. Ovarian cancer dx March 2017. Now on third-line treatment with a trial providing targeted and chemo drugs taken orally.

PLEASE READ*
Friends, I’m so sorry to let you know that our lovely pack leader WhatWouldLeslieKnopeDo passed away yesterday morning, 6th April, at the age of 28.
Leslie’s death was not unexpected but it’s still a huge shock to all of us to hear such sad news. She bore her illness with enormous courage and dignity and without complaint. It was Leslie (who was called Christine IRL) who drew me – and so many others - in to the cancer support thread, with her unfailing kindness, reassurance and support for others.
Christine asked me to announce her death on Mumsnet and, rather than fill up this thread, we thought it would be a good idea to set up a remembrance page in Bereavement here. Please do post your thoughts and thanks on this page.

Big hug to you TQ for taking on the sad task of letting us all know about this. I’ve noted your request to go over to the other thread, which I shall do now. But wanted to post on this one my thanks to you

Thank you 'iVampire'

Thanks lovely TQ. You must have been dreading posting this. Love to you XXX

Tx Tahiti

iVampire Just remember - you run so we don't have to! You go girl.

Yes, I was a but self-indulgent in that other post !

But the running somehow all got bound up with Leslie because she (finally, after several ‘no go’s) went to her new kitchen on the day of my first big event. And I was happier about her achievement than mine, because I think hers was the harder and therefore greater one.

It was a lovely event today - my first trail Half, muddy, rutted and hilly. And just to add to the insanity, also 5 days post-colonoscopy

peapod - did you get that booking sorted out?
dulche - tomorrow? Are you mid-prep now?

Thanks for remembering iv. I've been crying and pooping for the last few hours. The powder actually tastes ok (a bit lemony) and if I'm honest the headache is bothering me more than the fact that I've been on the loo for ages. And I'm also quite hungry.
I'm still very panicky about what will be found tomorrow but they say knowledge is power so if there is something, then both myself and my oncologist need to know.
Hope everyone is ok x

Citrafleet?

It took quite a while before it had any effect on me. But when it did it was rather - dramatic

Just keep up the fluids! Probably too late at night now, but my world transformed for the better when I found out that black coffee counts as a clear drink

Thanks for remembering iVamp and* best of luck for tomorrow Dulce.*

I still don't have a date for mine. I chased up in person at the hospital the other day but was told I would get a letter. I think once CT and ultrasound came back clear last month I've been put on a slower path but do still need to find out what's caused these symptoms, be it Tamoxifen, IBS or whatever.

@TwitterQueen1 am pretty fricking certain leslie has MN and everyone up there with her on this thread already.....

In the same way my kids are convinced their Granny has FB in heaven......

Am sure she approves of all you have done

Hope you got some respite, Dulce and that tomorrow goes ok.

peapod hope your appointment comes through soon

Thanks for the advice the tattoos etc lovely lacies. I will talk to my BCN next week at some point. I may be over my mid-life crisis by then!

SnowsInWater sorry to hear you have IBC too. It is really scary and daunting. Do try to stay away from Dr Google and from statistics! Neither are helpful.

I think there is a more or less international treatment protocol, especially if you are at stage 3 at diagnosis. As you say, it is chemo, mastectomy, rads. I am stage 4 so surgery is probably not likely to make much difference. I had chemo, to which I thankfully had a good response. I am now having rads - I have 3 more sessions to go. Then full on with the endocrine therapy for as long as it keeps working.

There are US and UK Facebook groups for women with IBC. I imagine there is an Aussie one as well but if you want info on the UK one, feel free to drop me a PM here. There are women from outside the UK in the group.

TQ thanks for letting us know about Leslie. That can’t have been an easy post to write. And thanks for the proper tribute thread.

iVampire thanks for running for Leslie and for us and for yourself! You are awesome.

purple I do know what tattoos I want, but yes it takes ages to make a decision! I have one already which needs some work as I am not happy with it.

I am not allowed to have a tongue piercing as I have epilepsy 😂

How are you doing, lovely?

Iv yes that's the one. Had the second one this morning and it seems to have worked faster. Maybe it's more efficient when your bowels are emptier?
I haven't found the prep too bad. No cramps and I'm not actually hungry. No headache today so that's a bonus.
Hope everyone is feeling ok.

Hello Lacies, always lurking but not much to say recently.

TQ, a big hug and thanks for letting us know the saddest news.

Purple, I'm so sorry to read your latest update as well - another big hug to you. Our local hospice brilliantly supported me, DS and DSDs when DP was ill and after he died. Happy to say more or feel free to PM me if you like.

Hi Meercat, I had almost the same treatment as you, although my BC was triple positive so also had/continuing with hormone treatment and now neratinib. The cold cap worked really well for me. My testimonial is on the Paxman website, although I can't seem to access it at the moment. Here's what I did - lightly dampen hair and comb through a tiny bit of conditioner just before it goes on. Take paracetamol and ibuprofen beforehand - when you get to the chemo ward and are getting set up. Bring a blanket and warm scarf. You can slip a pair of ear bud type headphones in - I used to use the Andrew Johnson relaxation app and listen to other podcasts. The first 10/20 mins are the worst, but I did find it completely bearable after that. Make sure the cap fits properly - take your time. Also double check the time that it needs to be on before and after treatment - the nurses weren't always up to speed or fully trained. Check that it's staying at the right temp during treatment too.

Also, I lost 2.5 stone during treatment. Some of it was due to stress and not being able to eat, a lot of it was down to what we call dire rear on here! Caused both by paclitaxel and ongoing Herceptin. I definitely had the weight to lose, so at least it was a positive for me. Unfortunately since stopping herceptin and having an oophorectomy, I've put most of it back on, so I'm starting WW after Easter.

HTH, please do feel free to ask away if there's anything else I can help with.

Sending love and hugs and and to all

Flippyneck Thank you. That is very helpful.

Just waiting now to know when it will all start. The gap between diagnosis and surgery was very short. Now I just seem to be waiting, expecting that at the next appointment I will know when things will happen. Then there just more things to wait for!

My next appointment is on Wednesday, so hopefully I will know more then.

As you will gather, I am not good at waiting!

Dulce Good luck today, let us know how you get on

Peapod that fact your scan came back clear and they aren't in a rush is a good sign, although I understand how frustrating it is waiting. Hopefully you'll get some answers soon

I'm not too bad, back on the steroids so eating everything in sight at the minute My leg is still really painful but other that's that and sweating like crazy for no apparent reason I'm doing ok. My mams been given. 4 week sick note from the doctor so I see her everyday which is nice

How are you doing TQ? Is it your scan this week?

Hi Purple
Yes scan this week but I won't get any feedback until the week after.

Hi lacies. Well that was painful. The nurse said it was one of the most challenging colonoscopies she has ever done.
But she found no polyps and took no biopsies. I am so relieved! Thank you for asking and checking up on me.

Well done dulce and so glad for you that there was 'nothing to report'. Thanks for your thoughts LondonHP and purple - I have been much less preoccupied by the symptoms since those scans came back clear, so in a way not as focused on chasing the date either, but it will be good to have an answer.

Enjoy the tattoo planning LondonHP (subject to continuation of mid-life crisis ). Purple that's great that you can see your mam every day.

That’s good news dulche and you must be do trluev

That’s good news dulche and you must be so relieved!

I found mine very uncomfortable, so the doctor didn’t go quite all the way, but he was happy he’d seen enough. Biopsies taken for completeness, not because there was anything worrying seen.

peapod - sounds very like my circs. In the routine pile, but they also lost the form for a while, so when I chased they got on to it quite quickly. (And so when it was all about to start, I found myself thinking ‘why did I make this happen?’)

Hello, joining if that’s okay as I have tests tomorrow for suspected melanoma. I’m in my early 30s with two young children. I’m utterly terrified. I feel so certain it is going to be the worst news. I have aching lymph nodes and other very worrying symptoms suggesting it is all very advanced.

Welcome rawroar (though I hope your stay on the thread is only a short one)

The early bit, when you don’t quite know what is going on (but you fear the worst) or what can be done about it is right up there as one of the most stressful parts.

Do you know what tests you’ll be having? And how long it will be until you get results?

Hello, ivampire, thanks for replying. Biopsy of the suspicious lesion tomorrow and then lymph node biopsy when melanoma confirmed, I think it’ll be about a 2 week wait. It’s agony thinking I could be weeks away from finding out I’ve left it all too late for effective treatment as I’ve had this on my back for years and never went to have it checked. Feel like I’ve let my children down in the ultimate way.

I'm at emergency gynae clinic I a few hours time. GP referred me on the two week referral system. I've lost weight, im so fatigued, no appetite, bleeding for 8 weeks, have had a transvaginal scan which gp wasn't happy with and had blood test results which weren't favourable either. Three times my GP said the words " rule out cancer". My dad died of it a few years ago.....I'm feeling scared. My friend is coming to the appointment with me so I won't be alone. I just hope they pinpoint what is wrong really quickly. to all the ladies on this thread