Cancer Support Thread 92 - Christmas Happy Hour at the Patience Inn 7pm tonight 🎄

[LemonDrizzle10]

Old thread nearly full!

Thanks @Tilllly ! I have a note on a post it next to my tea cup for the morning...hopefully they'll already be open when I get up & I can get it done...

Yes, @lucysmam, we'll all nag you tomorrow re your scan.

So I'm over a month after my last CAPOX and I've got constant neuropathy in my finger tips which is making me a bit clumsy and in my toes, whereas when I was on the chemo it went away around 10 days after the infusion. I'm so fighting the need for an afternoon nap, which is also a new thing.

Is this normal after chemo has finished (or in my case, paused)?

@lucysmam

BOOK YOUR MRI

I bright in my passport and retirement papers typical my manager is off so that’s another week it’s delayed.

i went to see All of Us Strangers last night. Beautiful film but very emotional I was in bits by the end 😀

@lucysmam

Book
Your
Scan

@lucysmam Have you booked your MRI yet?

I dragged DH to the Designer Outlet for a nice bit of retail therapy yesterday. Bought new bedding (70% off!), a top, some makeup, and a pair of shorts for DS. And a new frying pan because I've accidentally promised DS that we can have friends over for a pancake extravaganza tomorrow. Making the most of my last week off work, and the half term!

I'm sorted for the last week of the Easter hols - I don't think it'll clash with anything or anyone else. The only thing it might clash with is oncology but I'll ask them for a phone call that week rather than in person.

I've spent the day painting peg dolls & been for a walk to Lidl. We went for pancake toppings. I'm not even telling how much I spent but it was way over what I anticipated! Had a restorative McFlurry afterwards 🤣 Just trying to get a couple more dolls at the point where they only need details before dd2 appears to chat nonsense at me about Adele cook tea 🤔

Please can I join you all? My fit test for bowel cancer came back at 890. G.P phoned this morning to say I'm being referred to the hospital for a colonoscopy and more tests.

I've had ongoing lower abdo pain, vaginal bleeding/spotting (one very long period🙄) and pain for over a year. I've been waiting to see gynaecologist in March. The g.p said due to my ongoing symptoms she recommended I also do a fit test "just to tick the box". G.p said it should be under 10 for this test? Google has not helped this afternoon, so I am trying not to read any further about what my high result means for now. She also said the 2 week wait isn't actually 2 weeks and more like 3-4 weeks at the moment.

Hi @NoodlesandDoodles welcome to the best thread none of us wants to be on! Do yourself a favour while you wait & avoid Dr Google. It'll send you down a million, probably wrong, rabbit holes & you'll scare yourself silly. There will be some helpful sites out there that other posters can recommend I'm sure - I can't help much there though, I've avoided the majority & tend to stick here.

You're in the worst bit right now, with oodles of hanging round. Once you know whether it is cancer, or not, and have some sort of plan either way, it's better. Not brilliant, but better than feeling like you're waiting forever!

Hi @NoodlesandDoodles

I had similar symptoms to you and also had a fit test of over 200. You are right that anything over 10 they do a colonoscopy.

Mine found 5 polyps. I had to go back to have them removed and then another colonoscopy to check they were healed.

@NoodlesandDoodles

Has the Dr checked your iron levels?

Hi @NoodlesandDoodles and welcome. The safest sites to browse are Macmillan Cancer Support and NHS Choices. There may be some bowel specific ones too. Try to keep busy and distracted while you wait. It’s agonising! I had a bonus colonoscopy due to an incidental finding on a scan. The bowel prep was fun! All normal thankfully. Just a reaction to chemotherapy for BC.
All well at Tops Towers. I walked 3km on crutches today and talked to men with dogs!

Bugger @NoodlesandDoodles

Sorry to welcome you

Hello. Please may I join? Left breast felt a bit weird for maybe 3 months, but I’m peri so just assumed it was that. Found a very hard, very solid, immovable lump last Thursday, saw the GP today and have an appointment at the breast clinic tomorrow. Having read some of this thread, I’m aware I’m lucky that it’s all moving so fast, but I googled for 5 minutes (so not doing that again!) and I’m frankly scared shitless.

Hugs @Idontknowwhattodo78
It's a really scary time - and Dr Google is a nightmare for making it worse. Stay away, there are lots of things it could be and if it is BC, lots of different types and treatments

Once you're seen, it will get easier - this is the worst time but this grp is a huge help

Welcome to the nicest and scariest group on all of Mumsnet, @Idontknowwhattodo78. It's fantastic that you can get seen so soon, and hopefully it's a one-stop clinic? Expect to have a mammogram and an ultrasound, plus a biopsy if they are not able to identify what it is immediately. Just go with the flow, as hard as that is, and make sure you are clear on next steps when you leave. Wishing you unremarkable results - that's code for "it's all harmless" ;)

@NoodlesandDoodles @Idontknowwhattodo78 welcome and very sorry you find yourselves here. May your stay be short, though if you have to stay this is a very supportive group, so feel free to use it to vent.

I have not posted in a while as I was trying to get back to some kind of normality and, for a while, thought that my various issues would slowly find a solution. Today I just got really upset. Although not a matter of life and death, I nearly managed to get LVA surgery for lymphoedema to be done on the NHS but now can't. I did everything I could do qualify for the NHS trial at the Royal Marsden, which included letting my swelling deteriorate in order to meet the severity condition. I got measured up again last week to see if I had met the conditions and I had. So, I filled in all initial forms and was entered for the trial. Today I got a call however to tell me that I had been randomised to the 'control group'! I could cry. I let my lymphoedema get worse for nothing! I am back to compression and intensively getting myself back to where I was, which I have managed to an extent. However, I can't help but feel that, although I got my arm to shrink back to more or less the size it was before I let myself go, I may have done myself some permanent damage. So, I am now back to trying to beg my workplace insurance to pay for it. They have said no, but said they would look at any letter from the consultant at the Royal Marsden I could send them about this. So, I am now begging for a letter to support my case to do it privately. I am not optimistic given that it took me crying on the phone to the insurer just to get them to agree to look at a letter but said they do not fund things that they consider 'experimental'. Damn it.

On top of it all, I still have to have an 'intermediate' thyroid nodule removed. I have been delaying that for months as I was trying to deal with the above. So, now I can try to get that done and am starting to freak out about what that will show and whether I will be kicking myself for not having had it done immediately.

@Tilllly By the way, love daisy the pup!

Take care all who are struggling!

Hey. Sorry to interrupt but do you mind if I ask a question?
If you already had a diagnosis of cancer (thyroid and lymph node) and had MDT tomorrow after surgery last week and the surgeon had rung you Today to ask if he were happy discussing it reoccurring on the phone....

Would they assume they had already seen the scan?

Or would they literally see it in mdt?

Driving me mad!

@Idontknowwhattodo78 hi! And welcome to our cosy corner of t'interweb. How did you get on today?

@stomachameleon welcome. Unfortunately we have learned here that you cannot read anything good or bad into the timing of appointments or whether they are face to face or telephone. It’s horrible having to wait to find out. Deep breaths and distraction required. Hope you are recovering well from surgery.

@TopOfTheCliff thank you. I am stiff and sore as they rummaged round my lungs but ok generally.
I will just be patient (it's only tomorrow)

Any of you tootle to your routine appts alone? Not the big, scary, ones. Just the regular check in ones? I'm going to my next one alone so there's someone around for dd2 who has her first counselling session at school & am not sure whether it's nerves for me for that on my own, or hoping she's ok with it being an empty house when she gets in & her dad being with her first. Stupid really, and I feel like I should be here for dd2 but can feel the eye roll from changing a third one to a phone call without even doing it.

It's annoying me that last time she said something along the lines of needing to lay eyes on me, which is fine, but also, I'm fine atm & don't need someone to look at me and tell me I look alright & my hair's growing well, iyswim? I have friends and acquaintences who do that for me. & my little girl might need me rather than dad that day (she's very much a mummy's girl, always has been). Does that waffle make sense?

She's not little little, btw, she's 14.

Definitely this

It makes sense @lucysmam

Go to the appointment
I get it but go

And yes, plenty of line appts here, I half prefer it