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.

London I am already finding it difficult to cope with people who give detailed advice about what you should and should not do without knowing what your situation is. That this is someone from the hospital makes it worse. On top of everything else being patronised is just not what you need.

Your Rad burns sound very sore and uncomfortable. I hope they start to ease soon.

Thank you, meercat. It’s good to know people here understand how frustrating it is for us. I find it really exasperating when HCP’s just stick to their well-worn script. I may be wrong, but I doubt the young woman on the end of the phone really knows what it’s like to have stage 4 cancer. Or fatigue so deep that it is a mindf* just putting socks on sometimes!

Hi everyone. I hope you don't mind me posting this here but I thought it might be of interest to some of you. I'm one of the Directors at Shine Cancer Support which supports adults in their 20s, 30s and 40s with any type of cancer/any stage. We're running a 1 day conference in London on 11 May and some of the sessions might be of interest - early menopause, fertility after cancer, alternative routes to parenthood, getting fit after cancer, dealing with chemo brain, etc. All the info is on www.shineconnect.co.uk and we've worked with shine's fab community to design the day. I had Stage 4 NHL which I developed when I was pregnant, and felt really alone so hope some of you can come along and meet some friendly faces. x

Oh, God, London, just ignore the tone-deaf medic. Last year I considered it a good day if I was clean, dressed, fed & had smiled at the children.

for you & your nasty burns.

Hi shiny, thanks for the info. I had stage 4 nhl too, but it's been pushed back hard by chemo, and is having a sulk atm.

Heh! That really made me smile, Miles thank you for lifting me out of my grump!

@ShinyCein I am coming to the event and you and I recently exchanged emails about the workshop this week, which I am pleased to be contributing to. I know you will be mega busy at the event but if I spot you and you don’t look swamped I will come and say hello

PS glad your NHL is having a sulk xx

@LondonHuffyPuffy definitely come and say hi! Never too busy for that! Looking forward to it! xx

@MilesJuppIsMyBitch glad your cancer is having a sulk!! Are you finished treatment? I did the not very fun R-CODOX-M/IVAC-R but it whacked the cancer (and me) hard too. Sending you all my best wishes and good vibes. If you can make it to the conference it would be lovely to meet you x

@LondonHuffyPuffy that really is bs! I'm so sorry! I wonder what her job description was that day? Call patients and berate them into exercising? Not helpful and makes you want to do exactly the opposite. So sorry about your burns too - not fun at all. x

Thanks shinycein xx

Being berated for not exercising is truly bs and if you avoided telling her so then well done for temper control! Even sans cancer I hate being guilted into exercising.

Hope the burns start to improve for those suffering. I hadn’t really realised rads was so hardcore, it kind of gets marketed as chemo’s much nicer little brother in my mind’s eye. La Roche posay lipikar baume is lovely and soothing on skin - have you tried?

Also sorry to see Shestood here, that sounds like a very hard message to hear.

Meercat I also had my port today, plus first chemo. The sedation was rather lovely, the achey wounds not so much. Drugs themselves seemed innocuous enough but I’m currently resting as I feel a bit woozy and tired. Got sent home with a few different tablets and an injectable so next job is to remember what to have when and with/without food. The cold cap was interesting - when fitted and switched on, it was instantaneously completely freezing and I got a headache which I thought I would be unable to stand. I listened to some music and took a couple of ibuprofen and it very quickly was fine. It has left deep grooves in my forehead that 5 hours elapsed have not made pop back out again. I must be older than I think!

Oh @LondonHuffyPuffy what a total bam! My burns are making me miserable too but they're more up my neck & clavicle area so am managing to heave my one massive remaining nork into a bra. I hope you told her to do one and a bird shits on her car 😡

I’m not a sales rep for LRP but the targeted advertising on here just referred me to this thread where the Lipikar is being tested by MN - albeit on children with eczema - but might be of interest.
Here

I freakin’ love you lot. Thanks for the support! I was quite Britishly terse with her after that and ended the call quite rapidly. I should have been more upfront!

Thanks for the Lipikar recommendations. I love LRP stuff in general (their pure vitamin c is brilliant, although I have to remember to wear heavy duty sunscreen on the days I use it). I shall look into that.

Well done for getting through the cold cap, Brassica I had a bit of a freak out in the first ten minutes and wanted to rip the bloody thing off but a lovely lady in the chair next to me who had been through it advised me to hold a cup with a warm drink in it. It really helped! I also found that jiggling my legs like an eejit was helpful but I must have looked a bit of a sight

Love to all. Xx

KeepCalm I am sorry your burns are making you miserable too. If you have had them post Mx they must be much more significant than mine as I think they give you a more intensive blast. Sending love xx

...port...took about a week to feel comfortablish, from memory...
Apologies for dashing past...waving to all

Hi guys, just had a liver resection to remove 'cells' find out this Friday if it was enough. Can I join, am very scared.

Of course you can, @BlueEyedPersephone

The waiting for results is the absolute worst feeling in the world. We can hold your hand through this. Xx

Thank you, it's the third procedure so far and each time the results/ procedure are more scary, I'm on day 12 after surgery and being unable to drive/ work/ look after my family for weeks is really hard.

Oh love. That sounds tough. Do you have anyone who can help or take some of the load off? Xx

My dh is being amazing but I just am now worrying about impact on his job and seeing how all this has/is taking his toll on him mentally. He is scared too

It is really scary for both of you. Do you have friends or family who can help out? Xx

London glad we could cheer you up

Shiny I'll check the calendar: your event sounds great! I had RCVP, which I was told was relatively mild, but hit me hard. I have finished chemo, but my cancer is incurable, so I'll probably have to have it again at some point. Hopefully not for a LONG time, though.

Brassica I hope you sleep well tonight after your first chemo.

BlueEyedPersephone: I hope you're managing to relax a bit this evening. This thread was such a godsend to me when I was waiting for results. As no-one else has said it yet, Don't Google. Just come on here and chat instead

Thank you friends are offering/ helping where they can, but it is the trying to explain the full situation combined with if we explain it we have to face it, I think we're in denial.