Tamoxigang -the 39th thread ***

[MaryAnnSingleton]

cooee ! we're over here - just in case the current thread hit 1000 without our noticing Bring the trolley !

And I have new sunglasses too, they are very cool, although since I finally gave in and got varifocals they are by definition not cool at all.

And, sorry, so bad at keeping up and remembering things, jchoc loved your pictures of Newby, will be there this summer. I should have known Little Copt is dyspraxic from the time my Dad had to leap in and rescue her when she couldn't work out how to steer the boat on the lake and it was sinking

Happy birthday weekend to the copt family (why is MrC grumpy on your birthday copt - surely he should be all chilled out with his new birthday toys? ) Do you have a joint cake?

DH is still playing his computer game, but he has cut it down a bit - he still has lapses into extreme selfishness/self absorbedness though, but I am sort of getting on with life and ignoring (have found that if I do everything myself and expect nothing from him, it is far less stressful than actually asking him to do anything)

Poor goon dog - what is the rash from? (Old lady dog has all sorts of skin problems - she is very allergic to all manner of things, - pollen is affecting her at the moment, she keeps sneezing and rubbing her nose on the furniture. Talking of birthdays - Old lady dog was 16 last saturday - she can now officially do whatever she likes and be constantly spoilt)

Ruby - glad the blood transfusion has perked you up - they are brilliant aren't they?

Kitkat - good that this lot of sickness meds seems to be doing the trick - I think its often just a case of trying different things to see what works.
And great that cold cap seems to be working

A question from me on cold cap. Why do you think it doesn't work fro some people? It didn;t work for me at all - my hair came away in one piece like a wig (just before my 2nd chemo IIRC) I put it down to firstly having very thick long hair at the time - might have been better to have a cut beforehand, and also I think I have a very small head (obviously my brains though small, are like those concentrated washing powders, a little goes a long way! ). The cold cap I had was enormous - it was one size for everyone, - men, women, elephants whatever. I was rattling around in there. Are they better fitting now? (I had mine five years ago)

Anyway its great to hear that they are working for people, - losing hair didn't bother me too much, but I know that fr some people it is one of the worse things. My lovely onc. was one of the pioneers of the cold cap treatment - think he was involved in its development etc.

Anyway - I have rambled on again. love to all, hope everyone has a relaxing weekend. Malt - are you off to the seaside this weekend? - have a wonderful time.

My cold cap was ill fitting too, Kurri so I lost most of my hair, but kept going as it left me with a teeny fringe and some at the back. Wore lots of scarves with bits showing to avoid head tilters.

KitKat, yay for drugs working. Hope it keeps going.

And another yay for transfusion for Ruby. You can party with your dear sis now.

Happy Birthday to the Copts. Cake??

Too many to post to, and I have masses to do. Work, plus school summer fair tomorrow and a fair few jobs have been delegated to muggins me. Waving to all.

I was quite luck on the head tilter front, as my chemo was over the winter months and woolly hats didn't attract attention. Indoors I wore cotton hats or scarves - but was mostly among friends so head tilting was minimal

DD has gone on a mammoth bus trek, to sign CRB (or whatever they are called now) documents at a school she is doing voluntary work at next term. Its a school for children with special needs and she's going to be doing music with them, - she was so chuffed to get the placement, as she wants to do music therapy eventually, and it will be great experience for her.

She also had her appeal not to be charged £100 for late tax return granted which was a relief. She sent it on the very last day possible (typically) and it arrived a day late. And they sent a fine notice, but luckily they have been kind this time!

KK and Smee - I had a choice of 3 sizes of the inside of the cap and 3 sizes for the outer cap. I had to go for a fitting in advance of the treatment. I have ended up with a medium inside and a small outside to pull it tight (plus the lovely chin strap)!!
I also had my hair cut but not really short. A fair amount came out this morning (not actually noticeable) but the nurse said they estimate 20% will come out even if has worked.
Also I must say the hot weather is fab so even though I have my hair it is rather grim looking on the days I can't wash it so have been sporting some glam sunhats .

Am doing much better on new meds - didn't sleep well due to steroids but at least I was not awake and nauseous . Just having a quiet day today as DH has taken kids out. Am getting the big injection later and when that is done I may go out for a stroll as it is so lovely.
Feeling so positive I booked a weeks holiday in August - only about an hour away as will still need to get picc line cleaned etc. but by the beach and the kids are pleased. Not making up for the holiday we had to cancel but it's nice to have something to look forward to.

I'm also fascinated by Topsy being worn out from her smear test - I wonder if it is done differently in parts of the country!!

NI smear tests are very vigorous dontcha know
not that I have a bucket fanny that involved poor gp having to go almost elbow deep

kitkat -it sounds much better now, I definitely didn't have any kind of fitting - "NHS realises people have different sized heads" shock horror

Glad you are doing so much better on the new meds, sickness is horrible to put up with. And its good you are feeling positive and looking forward to your holiday. I think having treats planned to look forward to is essential in this treatment business, even if its only little things - it keeps you going

less of a smear test, more of a smear campaign then topsy?

Ah but Kitkat is private, I will probably get an asda carrier bag with ice cubes in to put on my head !

I should be packing but am just putting random things in, as long as we have some clothes, wine and the kids I think we'll be fine !
Kurri were off tonight, a night in a hotel and 3 nights in lymington so will go to a beach definitely especially as I've just heard there's a heatwave on the way! I really wanted a hotel right on the beach but couldn't find anywhere at such short notice, if anyone knows of anywhere nice let me know for next time ! Not Cornwall as it takes hours and hours in the car from here

Malt - bag of Asda Value Frozen peas

Kk

Malt - you inspired me to book a holiday today

I am banking on no delays to any of my treatments as this is carefully scheduled for the middle of August. My mum is coming so will take the kids on her own if disaster strikes!! (DH working).

Hi gang, got some issues I'm worried about. I felt ok this morning, not great but ok. As today has worn on I was beginning to feel more breathless and used my oxygen mask a few times. Because of water retention I'd been advised to raise my legs a few times so I did this on the bed.

My Mc nurse called in and was amazed to see me with loads of hair missing and sounding breathless. She decided she wanted to put in a pamper day for me sooner rather than later. I'm bloody scared now but so very sure I can't take another hospital say, not in this heat and yet I'm not ready to say no to more chemo (Ive had 2 lots)

Wish I knew what to do

Oh emin you do sound scared .
I think this heat is making everyone suffer . So with your health being compromised right now , you are bound to be feeling worse .

Have you got a nice big electric fan ?

Thinking of you Emin wish I had some good advice for you x

Kitkat where are you going on your hols ? Fingers crossed everything goes as plan for you. I feel so sorry for my kids that we had to cancel our holiday abroad but they are fine about it and looking forward to this weekend

I agree with topsy that heat makes you feel rough - I couldn't get off the bed. If you have a fan can you put some water in a bowl in front of it as that will help cool the room.

Also breathlessness I think can be made worse if thinking and worrying about it as you start to hyperventilate. Have you got any book/tv/ radio you could listen to as a distraction as that may calm you down?

Dressing ok and managed to be bit more active today so that's good.

Hi Emin so sorry you are feeling rough, did your Mc nurse check you over physically -blood pressure, heart rate, temp. etc?
Can you phone the nurse and talk through your concerns with him/her?

I would lie down with you feet up, and just moniter things - is Dh with you atm? - see if you feel any better in an hour, if not I would phone your unit, and ask for advice - you may not have to go in, and they might be able to reassure you about what is causing the breathlessness. (I also suspect heat and anxiety will be playing some part)

Let us know how you get on my lovely xx

Hi all. I've been to the dentist today because my Oncologist told me to go before my first bone cancer injection. Very flattered as my dentist told me I had good oral health! I have to go more regularly than normal to check for osteo necrosis of the jaw ... which sounds absolutely lovely.
Expecting my great hair fall out to start soon as I am being treated with the T before the FEC. I might ask about the cold cap when I have chemo despite the oncologist telling me it wouldn't work for me. Surely a cold cap can't be worse than the 6 weeks I spent on skull traction (nobody expects the Spanish Inquisition) after I had a neck injury in a car crash?

well done Lily. Are you having your bone injection when you get your chemo?

Sorry you feel so rough EMIN - I have no advice I'm afraid but fingers crossed that thigs settle down and you don't get admitted again.

Glad you're feeling a bit more mobile Gigs - hopefully things will continue to improve now your Rads have finished.

cooling wafts to emin -am sure the heat makes things seem worse. I bought a Peppa Pig cold pack which I froze to put on my head as had horrid headaches this week- also v nice shoved down one's top.

Happy weekend to malt and happy 16th birthday to dear Old Lady dog kk
T has done his piano exam and been to dentist (perfect teeth,lucky boy) so he's now in full summer mode.
My scan shows that my mets are still shrinking - the largest was originally 2.5 -3 cms and is now 1 cm (1.8 cms in Feb) so capecitabine is still doing it's work. I feel bad about whining on to onc about aching hip and now my ribs and also my elbow - onc. said unlikely to get cancer of elbow - she has suggested a bone scan so might do that. I am also going to see my GP in a few weeks to ask him about bones. I always think I'm going to be told not to be silly !

And more good news- I get to have a week off my meds mid cycle for my holiday ! no carting a bag of drugs to suffolk -yay !!

KitKat - yes will have first bone injection with my 2nd chemo next week, then it will be at 28 day intervals for a year, so that should mean it will coincide with at least one further chemo session, but I can't be bothered to work out which one at the moment!
We've booked a weekend away in what looks like a nice farmhouse B&B in Suffolk for the beginning of August (on my best weekend of the cycle, hopefully), so there's something to look forward to there.
Lobs chocolate cake on to the trolley, though I think it is too warm for chocolate cake.

gigs glad to hear you are a bit more mobile today

EMIN I agree with the others, keep an eye on how you feel, but this heat edefinitely can't be helping.

MAS I saw your great news on FB :)

I hope everyone who has booked time away has a great time.

This evening the clippers came out and off came what was left of my hair. I've never had a no.2 before, but it's easier with the rest of it gone rather than waiting for it to fall out bit by bit and depositing hair all round the house like a moulting dog! It's actually quite nice to have a cool head at the moment! The kids both laughed and said I look ridiculous and unfortuntely I have to agree with them I've been wearing a sun hat on school runs for the last couple of days, so I'll see if I can hide behind that and my shades for the next few days...

MAS, wheeee re the results!! Suspect bone scan will be fine.

EMIN and Lily, for you. And for everyone else in need of a slurp of it, virtual or otherwise.

Betsy - well done - I'm sure it will be easier now the decision has been made. Have you got a wig or is that on your to do list? Or do you even want a wig?

I've been wearing sun hats a lot anyway to protect my face as I have become very sensitive to the sun since chemo started - I bought a few new ones with large brims and have been rocking the look (IMHO)