Tamoxigang New Year, New Thread, *46*

[BetsyBoop]

Hands round a for everyone.

Thanks Kitkat just going on the train for the day, going in the morning and back late evening. Will be strange and quiet with only 1 child !

Gigs have a lovely weekend

Slightly drunk wave to everyone.
I love my red wine on week 3, when it tastes lovely (unlike week 1) and doesn't give me heartburn (unlike week 2).
Am being good, trying to limit alcohol to thurs-sun. Unfortunately I haven't same willpower when it comes to chocolate digestives, and other sweet treats.

Back for second round of Tax on Monday.

Morning all

Thanks for all the kind words. I've managed to have a good nights sleep! Although I did cry myself to sleep, so I have very red puffy eyes this morning!! But I feel a bit better this morning. Think being tired didn't help in how I reacted to my friends cancelling!

But it's a new day, and I will find something to do for me!

malt hope you have a fantastic day! We currently have blue skies in London at the moment. Hope it stays that way for you!

goodness sorry to hear your news. But however hard it is, try not to worry about the 'what if's' until you know for sure. Will keep my fingers crossed for good news. (((((((Hugs))))))))

Hi to everyone else. Hope you all have a lovely weekend xxxx

Morning all

Thanks really, looking forward to the day glad you are ok. Did your friends give a reason for cancelling, can you rearrange to see them ?

Glad you enjoyed your wine mom !

9 months ago today I was diagnosed and still not finished treatment !

Hi malt they were both too tired!!!! I worked a 48hr week while going through Chemo and even I could cope with a takeaway and movie! Oh well their loss! I just have to try and not get my hopes up over things!

9 months wow! But you are nearly finished!! Well the main treatment anyway! The end is in sight!

I have an appt in March for a scan to set up for radiotherapy! Also worked out I only have 4 more weeks left with this PICC line! Not long to go thank goodness! Xx

Kitkat, the two surgeons think that they got it all out (no, not biopsy - had that about three weeks ago or so). The histology will give them the margins to clarify whether all probably outdoor not as well as to diagnose what tumour is.
I feel I don't fit in anywhere. Like I'm in between the group of people who have back probs and outside people who have cancer probs. like an intruder bad a bit alone. All this talk of how rare it is. Fibromatosis is v rare. Rarer than low grade sarcoma.
Surgeons had to be cautious as tumour was a nerve sheath one too. This meant that if they took too much healthy tissue around it to ensure all was definitely out, they'd have to compromise my bodily functions. So I hope to gd that they have indeed got it all out n don't need to go back in for more etc. never in my LIFE have I thought it'd be better to have any type of cancer than anything else. I was so ignorant. I don't mean that horribly. It just thankfully hadn't been a part of my life experience. I thought cancer = chemo, radiotherapy and mamosectomy. Sorry if I've spelt it wrong.

Apparently, fibrimatosis are angered by bring removed and come back more often than not, with avengence, requiring chemo, radiotherapy, tax drugs and I think she said intravenous things. Dunno
Don't wanna know
Hope to gd I don't have to know
I asked her whether have access to Macmillan support if undergoing treatment (usually) for cancer.
Nope
So if I do need it, I'll be squeezing your hands more tightly than ever. I'd suggest you buy steel-fingered gloves this weekend. And maybe take some patience-pills for the self-indulged person sitting alone in the corner sucking her thumb and stamping her feet.

Really - quick warning for you - don't get your hopes up that your picc line will be removed immediately after your chemo finishes - it depends on your onc but they usually want it to remain for 1 to 3 weeks after the last chemo. sorry
(I had mine in for 6 months as it remained when I had a break for surgery.)

Goodness - well let's at least hope they got all - and fingers crossed you gt a good result when the full histology is back. Other than that I can't offer much advice but I am here for hand holding.

Mom - your post made me smile - it sounds like you are forcing yourself to drink wine even when it tastes horrible - but only on Thursdays to Sundays each week!!

Malt - my 9 month anniversary of diagnosis is on the 23rd of this month but my first docs appointment was on the 3rd so very similar timescales to you.

Thanks kitkat must admit that's what one of the nurses who flushes the line said. But the Chemo nurse said it could come out on last treatment. Although with all the drama I've had with it, they'll probably not mention it and I'll still have it in in a years time

and the wierd thing is you can't even feel it coming out .

No critical illness cover I'm afraid
I'm a self employed part time mamma.

Stood up
Washed myself strip-wash style standing
And
Dressed myself
Knickers on too
Changes those ghastly smelly socks for new ghastly but unscented ones.
Feel fresh ;) Physio later

Well done goodness sounds like you are doing very well xx

That's amazing progress goodness considering what they did to you on Tues. Cancer or not, we will still all be here for handholding :)

My 8 months since diagnosis anniversary was yesterday malt and kitkat (but don't forget malt that you have had an extra op to fit in) - weird to think that in 3 (or 4 in my case) months we will have "done" our first year.

Hope you are having a fab day in London malt

Hope you have got some "spoil yourself" things planned really?

I'm feeling decidedly weary today (9 days post rads, so the next few days are supposed to be the "peak" of SEs I think?) so log burner is blazing and we will watch the rugby later. The kids have asked for a "party tea", so a chill out day all round. :)

I'm sooo pleased

kitkat, ha ha! I'm not the most articulate person when tipsy. Glad to have made you !
Trial and error taught me no vino on week 1 or two.
But I did really enjoy those two big glasses last night! The other half bottle planned for watching The Bridge tonight.

House full of kids until 9pm tonight. My own two and three playmates. Making most of weekend prior to chemo.

goodness. Well done to you. Sounds impressive after what you've had done.

Very mixed day for me. I had Onc appointment this morning with results of CT scan. I shall have to go onto oral Chemo now and stop taking the hormonal pills. Anyone with experience of Capacetabine? There was I thinking I might be having Rads this month and then back at work f/t by Easter!
DH has just had an exhausting few days with MIL prior to her being admitted to a dementia care home. He's having a minor op on Tuesday so I shall have to get into my nurses uniform for him!
But ... We ordered a new and expensive bed this morning so are looking forward to more comfort at night. And DS2 will be back (briefly) tonight from a week skiing so it will be nice to see him before he returns to final semester at university.

Lily - I think MAS and trice are both on Capacetabine. Does that mean they think the hormonal stuff isn't having the desired effect? I think the main SEs are pricky hands and feet and nausea (no change there says Lily - how is your nausea these days?)

Hi Mom - glad you're enjoying your weekend.

How do you feel about next week potentially being your last week off Betsy? I've got some work to do and a fair bit of ferrying kids around and then thats it - I can't believe it's my last week off. It's a pain that my 2nd week back is their half-term as it feels too soon to take hols. DM will have them a few days so that I can go into the office - the rest of the time I'll have to WFH as I've not go back into the swing of arranging clubs.

Lily - like Betsy says there a few taking capacetabine. Is that a long term plan now? Does that mean you still don't need an Op?

On Thursday night I dreamt that my new boob 'exploded' - it split along the incision and the implant shot out - I woke with quite a start at 2am and it took a while to settle after that. Mind you I'm back in my sports bra now just in case .

Betsy unfortunately the hormone pill hasn't been effective, so I shall be off that and on to the oral chemo for as long as it takes and seeing the Oncologist every three weeks. Long list of possible SEs from constipation to diarrhoea and including palmar plantar.
Onc somewhat surprised when I asked whether foreign holidays would be out during treatment. He asked where and I told him we were thinking of going to Borneo in the summer (we hope to meet up with DS1 somewhere in the Far East). Oh well, perhaps we will have to stay somewhere ultra clean like Singapore to reduce infection risk.

It's a bit weird to think about work TBH kitkat, but equally it will be nice to get back to normal. If OH doctor agrees (I'm seeing them on Monday) I'll do three mornings the first week, then half term (which obviously I don't work), then four mornings the week after half term and then back to my normal 5 mornings after that. We are going away for half term too - to a cottage nr Whitby (North Yorks) so it's all go here!

KitKat -no mention of any operation but as I have bone cancer as well, the chemo reaches all parts unlike a MX

lily - I also understand it quite hard to get travel insurance (at a sensible price) if you are on chemo. :( Fingers crossed the Capacetabine does the trick though. MAS has had a great response to it so far I believe (lots of shrinking and disappearing of nasty bits) and I think trice's response has been pretty good too.

Thanks Betsy! We are planning a few UK trips too. Whitby sounds great though may be a bit parky. All the more reason to investigate the best fish & chips and tea shops.

lily not much chance of tea shops I'm afraid...we will be wrapped up against the elements and fossil hunting on the beach all day for dino-mad DD!