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CANCER SUPPORT THREAD 66 for those with cancer or awaiting cancer test results. Rant, rave, laugh, cry, joke, scream - whatever gets you through the day.

981 replies

TwitterQueen1 · 03/11/2018 13:47

Welcome to the new thread, and the club that nobody wants to join. Our previous thread is here

Anyone with any type of cancer is welcome. And we will hold your hand if you're waiting to find out whether or not you have cancer at all.

If you have a loved one with cancer you can get support on a different thread here

For old and new posters it's very helpful if you (re)introduce yourself in your first post with a summary of your diagnosis (chemo brain is a real thing and my memory isn't what it used to be!).

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KeepCalm · 04/11/2018 06:55

@BitOfFun you and so are in a similar situation and my head is screaming all those same questions at me too.

When I hinted at a possible life expectancy my oncologist just said 'if and when it's time to have difficult conversations then we'll have it'

WTAF does that mean then?? Have I got 5yrs? If so time to sell the business and pack all the love into my kids I can. Or have I got 20yrs? If so then time to make sure this business is the best it can be to leave a legacy for the kids whilst packing in all the love I can......

Am trying not to knee jerk react but bloody hell its difficult.

And I feel fine too. Am actually slightly relieved that my hair has started to shed as it's a DEFINITE side effect of the chemo (I can almost write of anything else to paranoia) and at least I know the chemo is doing 'something'

Cancer is a total bastard but nobody tells you it messes with your head too......

Ginisatonic · 04/11/2018 09:40

Morning everyone.
I’m quite new here as I was diagnosed with breast cancer in October 2018. I have invasive ductal cancer in one breast and intermediate grade DCIS in the other with a suspicion of invasion.
I am having surgery next week with sentinel lymph node biopsies on each side. They are both ER positive and HER2 negative. I will have radiotherapy and hormone therapy after surgery. Hoping to avoid chemotherapy but it does depend on results.
I have two DDs. One has just graduated and left home to work. The other is in final year at university and lives away. DH and I had just embarked on the next stage of our lives. Retirement (early I’m 57). Looking forward to doing what we want and travelling. We’ve had a hard few years for various reasons and things were looking up. And now this. I’m feeling sorry for myself writing this down. Hearing what others are going or been through makes me realise that I’m relatively fortunate.
It certainly does mess with your head.

Have as good a day as you can everyone.

EmilyRosiEl · 04/11/2018 11:39

Thinking of you BitofFun and KeepCalm!

My two week referral has come through for Wednesday afternoon. I cannot find benign explanations for my breast changes (peau d'orange, blurred areola margins, red marks) though- I was just wondering if it is IBC (which is only ever diagnosed at stage 3 or 4 and I guess if it's both sides and affecting my chest it would be a 4)- how quickly do you start chemo?

EmilyRosiEl · 04/11/2018 11:42

Oh sorry Ginisatonic, I must have posted at around the same time as you.
I'm so sorry you're having to cope with that- hopefully BitofFun and KeepCalm can advise on BC related things. x

Namechangeforthiscancershit · 04/11/2018 11:48

Emily hello lovely. I started chemo 4 days after I had a proper diagnosis. Sounds scary but actually I was so bloody relieved that something was being done.

EmilyRosiEl · 04/11/2018 11:54

Thank you lovely! I know it's silly but I'm formulating two plans- one for if it's all benign and the other for the alternative!

How are you today?

Namechangeforthiscancershit · 04/11/2018 12:13

Not silly at all. Planning helps some people.

I’m ok, enjoying a weekend of feeling really good, celebrating with brunch and friends!

purpleunicorns · 04/11/2018 12:20

Emily chemo normally starts within a week but you will honestly feel so much better once you have a plan in place and you know what's happening.
I'm at the hospital on Wednesday for my results so I'll be thinking of you and keeping everything crossed it's good news

EmilyRosiEl · 04/11/2018 12:38

That's great Namechange- hope you have a fab time!

Thank you Purpleunicorns! I'll think of you when you're there.

I was just wondering whether people find it a bit annoying to have people waiting for scans without a diagnosis on this forum? I feel like I'm being a bit annoying when I'm not even sure what's going on yet.

I hope you're OK today Ginisatonic, hopefully the other people with BC on this forum can offer some help/advise!

purpleunicorns · 04/11/2018 12:56

No of course we don't Emily! We've ALL been there so we know how worrying it all is, in fact it's probably the scariest part of it not knowing.

We don't find it annoying in the slightest as that is how we all started out so we know exactly what you're going through

TwitterQueen1 · 04/11/2018 12:59

Emily No, we don't find it annoying. This thread is for those who have been dx and those who are waiting for results because we have ALL been in that horrible limbo. We hope very much that you'll come back on here on Wednesday and say "False Alarm!" and then disappear into the non-cancer world. We love it when that happens.

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EmilyRosiEl · 04/11/2018 13:06

Aw thank you Purpleunicorns and TwitterQueen- you are the best.

I'm a bit aware that I've posted so much that Ginisatonic's post is getting a bit lost here.

Ginandtonic-sending hugs and hope but sorry I cannot be of more help, hopefully other people with BC can!

Ginisatonic · 04/11/2018 13:22

Emily don’t worry about me. I’ve had some help from the others already. I was just having a ‘poor me’ moment when I was doing my introduction.
Agree with previous posts. Waiting is the worst. It’s tempting to go through all the what ifs. I know it’s easier said than done but best to keep as busy as possible.
And be kind to yourself.

EmilyRosiEl · 04/11/2018 13:33

Thanks Ginistonic, it didn't come across as 'poor me' at all- just very matter of fact really.

You've got lots to contend with (physical and emotional) and it's just shit that it's happened just as things were starting to get a bit easier for you and your DH.

I do hate the wait and if it is anything then it would be good to just get on with treatment.

MiriAmmerman · 04/11/2018 13:55

Hello - I was on one of these threads before and dropped off... may I come back?

I'm Miri, I'm 33. Diagnosed with a high-grade uterine sarcoma in 2014 (stage 2). Had a hysterectomy and some pretty intensive chemotherapy and was well for 3 years. This time last year a scan revealed mets on my ovaries, so I had an op to remove those (causing surgical menopause) followed by pelvic radiotherapy. A routine scan in March, which was meant to give us a new baseline for monitoring, revealed a metastatic tumour in my lung, so I had an op in June to take that out. I was then feeling completely well and normal, but a PET CT in September showed that my pelvis is now filled with metastases. One tumour is >10cm; the others are smaller, but there are so many that they haven't bothered giving me the exact number. Definitely inoperable.

My oncologist says that the time I have left is best measured in months not years, but they can't put an exact figure on it. The only thing they can do is chemo to try and slow the spread a little. I was supposed to have gemcitabine and docetaxel in combination; had my first dose of gemcitabine 3.5 weeks ago and have been horrendously ill ever since. Temperatures, vomiting, diarrhoea, pelvic pain... basically, it didn't agree with me at all and cause liver toxicity. I had a week in hospital where they tried to stabilise me - am back home now, but still not well. They've had to abandon the planned chemo regime because my liver wouldn't cope. They're going to start me on Trabectedin instead. The plan is to begin this Thursday but I'm very nervous because I'm still so sick after one dose of the other drug. Ah well.

I live with my wife and our 7mo baby DS (DW is his biological mother), and our cat. We're also moving house in 3 weeks, to a city where we know no one, because DW has a new job starting in January. It's the absolute worst time in the world to move, but given my prognosis, DW's career is now more important than ever.

Basically, everything is terrifying just now. Sorry for the long post.

BitOfFun · 04/11/2018 15:29

God Miri, how terrifying! Virtual hug from me, I wish I could do more.

Everyone here is so lovely- it's the worst club to be in, but the best IYSWIM.

TwitterQueen1 · 04/11/2018 15:54

So very sorry Miri. Are you in the UK? I'm wondering if you gave us a clue where you're going to be there might be someone on this thread near you.

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MiriAmmerman · 04/11/2018 16:17

Thanks TQ and BitOfFun. Yes, am in the UK (England) - we're moving to a city in the West Midlands which is about 75 miles from where we are currently.

Namechangeforthiscancershit · 04/11/2018 16:22

So sorry Miri that sounds like very tough news to take. A fair number of us here are in the incurable club. I personally avoid any talk of timescales at the moment but you have a lot more pressure with a teeny baby so I can see why burying your head in the sand isn’t an option.

I can also see why the move feels like terrible timing, but if I had a brand new neighbour or acquaintance who needed support then it wouldn’t put me off at all that I didn’t know them well. I am sure you will find lots of supportive people.

Flowers Flowers for you

Namechangeforthiscancershit · 04/11/2018 16:23

emily really kind of you to ask but no we definitely aren’t annoyed by people posting who don’t (and hopefully won’t ever) have a diagnosis. We all know exactly how hard it is being where you are now. Not long to go now before you can get some answers Flowers

Tahitiitsamagicalplace · 04/11/2018 16:27

Ahhhh here you all are! Hiiiiiii!

My intro: Woke up with a lump on my neck in September this year. My GP sent me to the hospital the same day, I had some scans and tests
and an operation and last month I was diagnosed with Hodgkin's lymphoma - a type of blood cancer. I don't know what stage yet, but it's at least stage 2. I'll find out what stage just before I start ABVD chemo in five days.
I'm 35 with two ds 13 and 4. And a scruffy black puppy!

CANCER SUPPORT THREAD 66 for those with cancer or awaiting cancer test results. Rant, rave, laugh, cry, joke, scream - whatever gets you through the day.
Tahitiitsamagicalplace · 04/11/2018 16:34

Gosh Miri that sounds so scary. Also sending you virtual hugs from over here.

Ginisatonic · 04/11/2018 17:00

miri I’m so sorry. That is a lot to deal with. [hugs]

ranoutofquinoaandprosecco · 04/11/2018 17:29

@MiriAmmerman fecking awful news. I'm with the others, as in when you move if you were my new neighbour I would totally want to help out. I'd like to think I'd feel that way before my own diagnosis. Thanks

MiriAmmerman · 04/11/2018 18:06

Thank you everyone - you're all so kind. Hopefully we will have some good neighbours (who might even become good friends )

Am currently sitting on the triage unit with severe chest pain. Am awaiting tests that will tell us if it's pneumonia, a pulmonary embolism, or indigestion.

Hope everyone else is having a better evening.

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