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.

Jesus Christ. Purple...I can’t even really imagine what you have put up with and continue to have to. I know you don’t have any choice but to live with it, but to cope in the way you do, and enquire kindly after everyone else on here, I find really amazing. You’re right that there do seem to be ‘photogenic’ cancers that get the ad campaigns and the ribbons and the t-shirts, while others get brushed under the carpet. This can’t help but affect outcomes. It is very unjust.

I hope you can get comfortable once you’re home, and the meds are good solid pain relief for you. Hope you can get some rest. Thinking of you lots.

I'm glad your home and comfortable Meer, and I'm sure the next lot will be a lot easier. I know when you've had a bad experience that you assume it's going to happen next time too but it's really unlikely

Oh you lot stop being so nice! I'm a blubbering mess as it is with thinking about Leslie tomorrow 😢 but thank you to everyone who's taken the time to reply to me moaning. I honestly don't know what I'd have done without this thread and you lot supporting me through the last year and a half. I'm home now and comfortablish although wearing pads as big as nappies isn't the most attractive look

Oh purple you never moan. You are remarkably graceful and sanguine given what you have to put up with. Even if you did moan no one would mind. Fucking cancer. Sending un-Mumsnetty hugs to you xx

Thank you for sharing Purple. I think it's really important that people know the reality of cancer. I'm glad to hear you're tucked up at home. Sleep well.

Sorry there was no real solution purple. I hope at least the pain meds work.

Sounds horrible meercat. It it's any encouragement my last cold cap treatment was rotten (3rd), I think because the hair on my scalp is now thin so it feels even colder if that is possible, but I haven't had a major hair shed again. If you didn't know me you would just see someone with thinnish hair and because I am tall most people aren't looking down at my scalp. To be really honest at this stage I think a part of me was nearly hoping I could justify shaving my head to avoid having to keep going with the cold cap but because I still have hair I feel like I should continue. Sorry if that sounds insensitive to people with no choice.

Well they say cancer’s shit, but I doubt anyone thinks when they say it that it can happen insuch an awful and literal way. But glad that you’re home purple and hope you’re comfortable.

I can’t get to the funeral - I was going to type ‘tomorrow’ but it’s gone midnight - today, but my thoughts will be there

Wren welcome to the best club that moons ever wants to join. I’d never heard of your cancer, but it sounds promising that they think it is well-contained. Countdown to a major procedure isn’t much fun - do you hav

• do you have RL support?

(Sorry for premature posting - slippery fingers on tiny screen. Time for bed, I think)

I don't have cancer and I'm not going under going any testing I just lurk this board quite often to see how you all are. Sorry if you don't want people like me on the thread. Just want to say how amazing you all are and if you're going through the shit mill I am so sorry, life can be fuxking awful and cruel. I lost my dad last may after a very short aggressive battle with prostate cancer which spread everywhere he was 55. All take care of yourselves. Purple I am so sorry to read what you're going through, I really hope you are in as little pain as possible your story is similar to my dads and hits me hard. If anyone wants to ask me what it's like for a family member to witness it all/be a carer please message me if you are worrying about family members. So much love to you all x

June

Thanks for that - very kind message.

Xx

Purple I hope the meds are kicking in and you are more comfortable. Someone posting just above said that you never moan. They are right. I haven't seen a moan in any of your posts. Like others on this thread you remind us daily that it is possible to remain positive even with this hateful disease and its unpleasant treatments to cope with.

I am feeling fine after my not so nice day yesterday. The steroids in the chemo are kicking on big time and having worked very hard to lose 2 stone prior to my diagnosis, it is in danger of piling back on. I am going to have to work on that. Meanwhile I have a big puffy bright red face. No need for blusher then

Thanks to those who reassured that the unpleasantness of the cap does vary from treatment to treatment and just because it was bad yesterday doesn't mean that it will keep getting worse. I think I actually had a bit of a realisation yesterday. The cap was on but not switched on before they started to put the needle into the port when it all kicked off. I was stuck with the cap on but not cooling for an hour and a half while they got the restitching done with the pain getting worse and worse even though we slackened the chin strap. Once the cooling started it improved quite quickly and became bearable, perhaps also due to the premeds. If there is a similar drama next week I am going to ask them to switch on the cooling. This morning the back of my hair is quite fuzzy. That could be because the cap was on so long. Hopefully not the start of loss as the roots seem oK. Hey Ho I will jusyt have to wait and see

I hope for a calm and comfortable day/weekend for all of us

purple I’m sorry about this latest horror you’re having to endure, as if you haven’t had enough already. I hope they keep you pain free.

I called my nurse a short while ago to see if my 5 year mammogram result was available. It was and it was clear so that’s the end for me. I don’t feel like celebrating, I just feel quietly grateful that the treatment worked for me this time.

Thank you for this thread, it’s saved my sanity many times. Is it Leslie’s funeral today? I’ll always remember her and be very sad that for her the outcome was so different.

Purple I know I haven't been on this thread long but honestly I've never read anything remotely moany from you, and the way you remember names and ask after everyone is so impressive and lovely, I'm hoping you got some rest last night and some relief from pain

To answer your question no they have no idea what my problem is. It started with a wonky painful nipple (!) and swollen areola, the skin in that area has thickened and it feels like someone has put a hard disc underneath it. However as both mammogram and biopsies are clear I'm now hoping it's some kind of hormonal oddity.

I couldn’t get to the funeral.

So instead I’m making a little gesture by wearing Gold converse today

Sparkly superga here (and my DDs socks, cos it’s freezing cold, which are also sparkly )

Good news mrsr

Are they Gabor Fuzzy? They look just like the ones I wore today.

So glad to hear your news MrsRhod

Lovely news for you MrsRhod!

I’ve just had a bizarre televisual moment. I was watching reruns of ‘Law&Order’ and it was about a child with CML (my kind of leukaemia) whose father murdered someone in the insurance company, I was nearly telling at the telly that they’d got the treatment paths wrong, then it turned out that was what the case hinged on. The murder was because the insurer refused to pay for the targeted drug (the same one that I’m on) even though they would pay for a bone marrow transplant (risk of death).

The drug has come off licence now, and I have the (cheaper) generic version, but it’s still about £800 for a 30 day box

No they’re Superga TQ, bought in the sale last year I think! Similar ones here www.superga.co.uk/browse/q-Glitter/

I like to imagine the Lacies out and about in their sparkly shoes for Leslie today...

This is what I have

And I have just made a donation to Shine

They have a new challenge

#SMASHITFORSHINE

Am I the only person who didn’t divide it into words in the intended places at first glance?

Was thinking of Lacies when I went to the Shine website in the first place, even more when I saw that!

purple I hope you have had a comfortable day

Thanks for the welcome everyone.
We are having a crazy time, my lovely MIL passed away on Monday night and we moved house on Thursday. I feel like I'm in a surreal world at the moment but our new house is lovely and a real comfort to us despite living out of boxes.
My OP is on Wednesday, I'll be coming home on Thursday, district nurse comes to see me daily for a while.
Yes it's a really rare form of cancer - one in a million or something.
I have, thankfully got lots of RL support.
I won't have radio or chemo unless it metastises - they test the tumour after my op to see if it's an agressive cancer but I don't think I want to know.
Oh I can now hardly see out of my left eye so having monocular vision won't be too shocking.

That’s an awful lot in your plate Wren

Fingers crossed that is is all as contained as your doctors anticipate. Do you have a fetching selection of eyepatches for afterwards?

Hi all,

Im so sad reading all this. You all have such hard stuff to live with. I was just DX with triple neg DCIS but have been peeing occasionally bloody urine since Jan. My consultant doesn't think I need a pet scan. Scary. Mastectomy booked 23/5/19.

Ive 3 kids with additional needs and no partner,they're estranged from their father. Long way from blood family as im not close nor have been to any of them. Its pretty isolating raising kids with disabilities and they're now in their teens. they're beautiful people, all finally DX with genetic issues this year, so quite a struggle.
No idea what'll happen to them if anything happens to me - this is terrifying and keeping me awake a lot right now.

Im sending love and peaceful vibes to you all.x

MrsRhod that's brilliant news! I understand you not wanting to celebrate but I hope it's a big weight off your shoulders

Meer you have every right to complain too, just because people have it worse doesn't make things any easier for you. I still get steroid face, I look like a hamster with too much blusher on

Thanks June and I'm sorry to hear about your dad, that must have been tough

Ohffs sorry you need to be here. Cancers tough enough without having all the extra responsibilities that you have. Do you have someone to watch them while you're in hospital or will they be ok looking after themselves? This bit is scary when you're waiting for treatment but it'll be here before you know it and there's lots of people on here who can give you advice/answer any questions you might have

It's true about the pink, fluffy perfect people adverts that make cancer almost look glamorous If only they would show more of the realities of it then I think it would have much more of an impact

Morning everyone. That was a very thoughtful message from June, thank you. I certainly don’t mind lurkers if they chip in like that with supportive comments.

Purple, are you managing to stay reasonably comfortable since you got home?

Very good news indeed MrsRhod and I hope you are enjoying the new freedom from cancer even if not celebrating.

Ohffs, welcome. I’m pretty new here myself. I can only imagine how hard it is for you facing this while also having very real worries for your children. Will the mastectomy need to be followed by chemo or rads, or will surgery be enough? It must be hard to process it all.

meercat re weight gain, are you generally feeling well enough for exercise to be realistic or will it need to be managed by diet? I can imagine it’s frustrating to feel it skipping backwards if you’d been making good progress before all this came along. Bloody cancer eh.

Saw my oncologist on Friday, who has referred me for genetic testing in view of triple negative diagnosis and also was able to inform me that probably I can expect similar side effects each time so I feel more prepared now going into round 2 in a week or so. He did say they’ll step up the frequency to every two weeks ‘in order to get through them faster’, which I took to be a euphemism for not wanting to hang around in my case. I don’t know if I am being unduly cynical! I have had much more energy back since about Wednesday to the extent that I was able to go and see Take That in Friday night - thoroughly enjoyed that, a joyous and uplifting show which is good at any time really but especially a month after a cancer diagnosis!

Shame the weather is a bit shit this weekend but hope you all have a good one.