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Cancer support thread 63 for a handhold or advice and anything in between

995 replies

purpleunicorns · 25/06/2018 18:01

Continuation of the lovely Leslie's thread here as it was nearly full

If you're worried about symptoms, waiting for test results or just need a safe place to vent then pull up a seat, we're a friendly bunch and we don't bite too much Grin

There's quite a variety of cancers on this thread so hopefully one of us will have some advice and hopefully you don't need to stay for long.

I'll start with my story:
Diagnosed with stage 2b cervical cancer in October 2017, 25 lots of radiotherapy, 4 internal radiotherapy and 5 lots of chemo. Was told last week that it's spread and is incurable, palliative chemo starts on 16th July

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9
YearOfYouRemember · 01/07/2018 16:42

Hi everyone

I've been thinking if you all.

I nearly rang for my results but chickened out. I've put weight on which is bothering me too clearly a tumourHmmBlush

Should I wait for them to call me, as I've been told they would if the doctor wants to see me? Emotionally not good today. If I've got anything bad it's dawned on me hardly anyone would care SadBlush.

WhatWouldLeslieKnopeDo · 01/07/2018 16:54

Year I'm sorry you feel that way SadFlowers I think you should phone to check just because otherwise you'll be left wondering if it was definitely OK or if you've somehow been forgotten!

Mrspotter do you have an appointment for your PET scan?

Mrspotter12 · 01/07/2018 17:14

leslie I had it Thursday so should get the results next Wednesday- after their weekly team meeting.

purpleunicorns · 01/07/2018 17:20

Year give them a ring in the morning, I'm guessing they won't be open today. You never know, they might put your mind at rest and if was bad news the chances are they would have rang by now

We care about you! I know it's not the same as having someone in real life but you know we will always reply to whatever worries or questions you have Thanks

It might be worth speaking to a Macmillan nurse, they can put you in touch with other people who have been through the same things

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YearOfYouRemember · 01/07/2018 18:06

I've got such a busy week with the kids I'm not sure I have the right headspace for bad news.

Thank you for not thinking I'm a moaning idiot. Some of you have had bad news and I'm not sure what's wrong and I'm being more pathetic.

purpleunicorns · 01/07/2018 18:32

Not knowing what's wrong is the worst, I still think that even though I don't think I can get any worse news now Grin Being busy is good, hopefully it'll take your mind off things

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WhatWouldLeslieKnopeDo · 01/07/2018 19:41

Oops sorry Mrspotter Blush was it OK with your diabetes?

Year is the next week any less busy? I know the idea of potentially getting bad news is not appealing. But if it is bad news then the sooner you know, the sooner you can start dealing with it. And it's more likely to be good news seeing as nobody has contacted you yet :) you'll cope whatever happens because, to be blunt, you don't have much choice! (I don't mean that unkindly.)

As purple says even if you don't have much support in real life, you have us Flowers

Mrspotter12 · 01/07/2018 20:11

leslie I didn't dare eat from mid afternoon on Wednesday as I couldn't guarantee what the effect would have been on my sugars. As it was my sugars were perfect!!! Yay me!!!

year just to reiterate what the others have said - the waiting is the worst part 🌸🌸

Mrspotter12 · 01/07/2018 20:13

noodles I didn't say, it was in two out of the 14 lymph nodes x how's things?

WhatWouldLeslieKnopeDo · 01/07/2018 20:43

Mrspotter yay for perfect sugars! Were you ravenous afterwards though?! I find I stop being hungry after a few hours, thankfully. Some people have rumbly tummies and I always feel sorry for them! :)

I just threw up after my dinner. Only a little bit, but annoying. I'll be glad when it cools down as this heat is just too much for my pathetic body!

YearOfYouRemember · 01/07/2018 20:48

What about if I agree to ring Wednesday? That's two calendar weeks, not sure if 7-10 days is actual days or working days - so the results should be back then?

You're all brilliant. Thank you.

I have a dh who won't entertain anything but I'll be fine and DDog knows I'm not myself sometimes but can't ring for me.

purpleunicorns · 01/07/2018 20:56

Yes ring Wednesday year, get whatever you need to get done tomorrow to keep your mind off things then ring them first thing Wednesday morning. I'm sure it'll be fine as they haven't rang you yet

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WhatWouldLeslieKnopeDo · 01/07/2018 21:02

Yes, Wednesday seems like a good plan :) hopefully DDog can sit with you while you phone and provide snuggles/licks

noodles44 · 01/07/2018 21:11

Hi everyone,

I hope everyone has had a good weekend & didn't melt too much.

chase the book came from my Macmillan nurse, I got that and an info leaflet with advice on speaking to children too. I told school and preschool too, also the Mums of their friends incase I need help with pick ups/sleepovers etc and incase the kids mention anything (& hopefully they can prime theirs as to my potential hair loss if I start to lose it) they are 7 (well nearly 8) and 4 years old. I mentioned I am at hospital Monday and the eldest knew it was for the lump, but is pleased my friend & her teenage daughter are round for tea to look after them. I am not looking forward to the school run 2mo incase I cry on anyone now they know!

mrsp it is amazing how many different ways there are to treat this isn't it? That reassures me that you have had 2 nodes affected, but that it is nowhere else. Good news that your surgeon doesn't want to see you for 6 months too. I hope your oncologist appt comes through soon.
I think I am hormone positive & HER2+ as well. It is stage 3. I am hoping as my scans are so quick that chemo will also start sooner. I think they also need to pop a wire marker into the tumour after I see the oncologist so they know exactly where it is if it has shrunk to the point of not being visible when they do the op.

year better to find out if you can as you are just fretting and it could be completely needlessly. I cannot remember what tests you are waiting to hear back on, but a lot of cancers losing weight seems to be a symptom, so it could be something totally innocent.
I like to have the information though as much as possible and I guess that approach doesn't work for everyone. Flowers I hope it is good news when it comes.

There is a place attached to one of the hospitals I will be going to with lots of massage, yoga and reflexology type stuff for cancer patients. I did not check it out last week after the consultants appt, but will have a nosey this week at some point. I think they have wigs there too, although I don't know if a wig is really me. I have seen some little cotton beanie hats. Of all the silly things I got upset at after finding out my diagnosis was that it was the wrong time of year for me to wear a hat as I normally only do woolly ones! My friend and the nurse pointed out there are sun hats too & I calmed down! That said I tried on a few different ones and they felt scratchy (& that was with hair!) My hair looks the nicest it has looked in a long time at the moment and I keep feeling sad about that. I may chop it short as have had it in short styles before, but I feel like it is not my choice to go short where it has been before, so not sure what to do. I have heard if it is shorter it may not fall out as much. It is mainly because I don't want my kids to feel uncomfortable at my lack of hair, but am sure I am overthinking it.

leslie you sound very resilient with all these tests you have to have frequently. You are so young to have had all this to deal with and you still manage to be cheery and supportive to others. Flowers

Hello to everyone else (sorry have been interrupted a few times with extending bedtime requests - drinks, lights, tummy ache & cough... Is it Monday 2mo by any chance?!)

WhatWouldLeslieKnopeDo · 01/07/2018 21:39

noodles I had a wig and I planned to wear it all the time, but it gave me an awful headache Hmm I got some hats from Annabandana. They're specifically for chemo and they're very soft. There are other websites too that do chemo hats. I'm sure I say this every time someone mentions hair loss but it's bloody freezing at night with no hair so make sure you have a comfy hat of some sort to sleep in! I hadn't heard that about short hair. To be honest I don't know anyone who has had chemo for primary breast cancer and not lost their hair, whether it was long or short, unless they used a cold cap.

Good luck with your CT scan tomorrow Flowers if you're having the contrast injection then be warned that it can feel a bit like you've wet yourself - it causes a warm tingly feeling which for some reason is focused in the groin area Hmm I also get a slight tingling in my face sometimes. It wears off quite quickly. But it is unnerving at first!

purple is it your kidney function test tomorrow? Fingers firmly crossed they're in tip top condition so you can get started on the chemo Flowers

I think I will head to bed shortly so goodnight lacies Glitterball

noodles44 · 01/07/2018 22:03

I think I heard it is the cold cap that may be more effective on short hair actually now you say that Leslie although not sure whether to try that or not. The nurse said it was around a 30% success rate, but most people I know who have experience of one say the person they know lost their hair, so not sure it is worth the discomfort.
Thanks for the advice re hats, I will have a look at that site.
Plus thanks for the tingling sensation heads up too. With the amount of fluid I have to drink beforehand & my rubbish pelvic floor, I am sure I would have been convinced I had had an accident otherwise!!

Goodnight Glitterball

purpleunicorns · 01/07/2018 22:11

Yes Leslie, you have the memory of an elephant Grin it's in a hospital I haven't been to before and it takes 4 hours. I'm hoping they have a Costa there.

I can't wait to get started with the chemo (although I'll regret saying that once it actually does start) I've been feeling rubbish the last few days and my stomach is all swollen. I'm paranoid it's spreading too fast and it'll be too late for the chemo. I've still got 2 weeks to wait Sad

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purpleunicorns · 01/07/2018 22:12

Good luck tomorrow Noodles, the dye gives me a really dry mouth so might be worth taking a bottle of water with you for when you get out

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noodles44 · 02/07/2018 05:54

Thanks purple will do. It says on the blurb that I have to drink a lot afterwards to flush it all out. My scan is 6:20pm, so will probably be up all night needing a wee!

Feeling quite nervous about why I got squeezed in so quickly for this scan now. Hopefully just because there was a cancellation and not because they think it is everywhere. A comment someone made about getting you in quickly if they think it is bad has been going round my head over night - I think they were trying to reassure me as my bone scan is a week away (which I thought was fairly quick too!)
My sensible head is saying it is a cancellation and at least I will know what I am dealing with quicker, but I cannot stop these niggly thoughts.
Has anyone had immediate CT results/indication or do you usually have to wait until the oncologist appt for them?

noodles44 · 02/07/2018 05:57

Sorry you are feeling rubbish purple you are bound to be completely paranoid at absolutely everything at the moment until treatment gets started. Flowers

Mrspotter12 · 02/07/2018 08:12

Hey noodles, I'm hormone + but HER2 -, which is why I had surgery first I think. They said I'd have had chemo and / or targeted tablets if I'd bee positive (I think that's what he said anyway). I do hate using the app for this - as I was reading I thought "must say / ask / comment on X Y Z" but my youngest is sat next to me and she seems to have had verbal diarrhoea for the last year or so ....... GrinGrin

YearOfYouRemember · 02/07/2018 08:14

Thank you purple, WWLKD and noodles. I feel rather pathetic. I'm better when my kids are ill but I'm not fussed about me, I know I'm not worth the trouble thanks to my childhood so feel I go between panicking and convinced I'm dying and refusing to see a doctor when I should.

noodles - I hope the school run goes okay and people are kind.

purple hope your journey to hospital goes okay. Your appointment too of course.

WhatWouldLeslieKnopeDo · 02/07/2018 08:58

You're not pathetic Year but you absolutely are worth the trouble. Even if you don't believe that for yourself, remember you're your children's mummy and they love you Flowers I will be ready to give you a slightly stern nudge on Wednesday if you need it!

noodles the radiographers will not give you any indication at all because the images will be checked by a radiologist who writes a report and sends it to your consultant. Sometimes the consultant will look at the images themselves before they've received the report and give you their opinion. I think you were just lucky to be on the list when a cancellation came up, rather than anything more sinister :) the cold cap looks so unpleasant I wouldn't bother myself, but a poster on here rocket74 had great success - she posted some photos but it was quite a few threads ago now!

purple the waiting sucks Flowers good luck with the kidney test. And fingers crossed for a Costa!

freddiemercury · 02/07/2018 09:37

Hello all from sunny London...
Quick one for Noodles...or anyone else contemplating a cold cap...have a quick Google about Daniel Field cancer hair products. A friend used them and said they were brilliant and her only hair loss was after her first treatment where she now realises they hadn't fitted the cap properly...
Also with the scans...they fitted me in quickly too...there was no spread...so nothing sinister about that.
Hope everyone else is as well as possible..xx

noodles44 · 02/07/2018 11:44

Thanks Leslie and Freddie that is very reassuring. My mind started questioning and attempting to 2nd guess everything in the small hours this am. I am just itching to know exactly what I am dealing with really.

Not to go on about my situation too much, but I have been separated from my ex for around 2.5 years. He is an alcoholic who spent time in rehab last year, has been made redundant this year and is attempting to be dry whilst not doing much in the way of job hunting. My real fear is if something happens to me, he is not fit to have the kids. He hardly sees them now (just a couple of times a month for a couple of hours either for a meal at ours or dog walk or similar)
I have been dealing with his awful/erratic behaviour for over 3 years now and this feels like the cherry on top of a pretty grim cake really.
I think that it why I am so worried it has spread, so I am really grateful for all the supportive comments which are helping to reduce my worrying. Thank you.
Will check out the hair products too Smile
I am planning on a big day out with the kids to a theme park or similar at the weekend. Peppa Pig world is the request 🐷 we were planning to go in the holidays, but I may not be up to it then, so thought it would be a good distraction. Plus leverage to get the youngest to stay in bed this week too at bedtime!

year there was a lot of love from the school mums thanks.
We are all cheering you on with gentle nudges of encouragement to call up for those results. The fact you haven't been contacted yet makes me think it is not anything serious & you will probably wish you had rung up ages ago Grin

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