Hi girls,
A quickie as borrowed hubbie’sPC - mine playing up. have been feeling down as back is hurting. Jumping to many conclusions…but do have bad back as slipped my disc a few years ago. Just don’t seem to remember things like that - just leap to cancer thoughts all the time!! Tamoxifen is making me feel like an old woman though - lots of muscle ache.
Shell - so glad to hear you’re better!!
Caron - I set fire to things in the kitchen!!! Glad you saw the article…very funny!! Hubbie going to get police award tmorrow night!
Kai’s future school (down the road) has got a pupil with this trotter flu…so if I start snorting… you know why… !!
I can do the 13th June …and my bus goes to Victoria too!
Much love all,
Gxxxxxxxxxxxxx
Hi everyone, Another quickie as we don’t get connected to the internet until Monday. Rads are fine, just feelparticularly tired today.
Ican do the 13th, is everybody coming I know Andie isn’t sure but it will be great to have a proper natter.
John’s off to Somerset for a couple of days. Bertie will have to go in kennels again, he is too strong for me to cope with!
Love Kathy
Regarding 13th June - time and venue -
Can I suggest 2pm at “The Grosvenor Hotel, London, 101 Buckingham Palace Road, London, SW1W 0SJ” - this is next to Victoria mainline station. Suggest we go to the Grosvenor Lounge - which serves afternoon tea.
So far there are confirmations from:
Bright
Caron
Gail
Kathy
Jo
Anyone else???
I’ll reserve a place for us there.
Write later.
Bright x
Oh very civilised Bright! Do they do those lovely cucumber sandwhiches with the crusts cut off and lovely cream cakes? Another excuse to slip off the weightwatchers wagon! Thank you so much for organising this, I’m really looking forward to it!
Hope everyone ok, I’m totally and utterly wiped out with Rads, they’re so exhausting! I’m not sure if it’s because they really are more tiring than chemo or if it’s all the help I had with the kids during chemo has trailed off a bit! Good to have some independance back again but had forgotten what hard work the kids are!!
Take care
Jo XXX
Cripes - you’re a posh lot, with cucumber sandwiches. Out here in the sticks we make do with the local garden centre!
Hi Everyone
The rads machine at my hospital broke down completely this morning and they cancelled my appointment, fortunately before I left home.
This small incident has flipped me completely - I feel as if I have come to the end of my ability to cope.The tears are very near the surface and I just know that if I start I will have trouble stopping again.They are adding the missed appoinment on to the end of my treatment but that day I have an appointmen5t for an echocardiogram at my own hospital so yet again I have got to juggle two appointments at 2 hospitals, one in London, one in Kent.
Sorry to moan, family are all at work and I needed to contact someone
Andie
What a crock, Andie. And they seem to take it so casually - “Oh, we’ll just tack it on the end.” No recognition of how we gear ourselves up for these bluddddy treatments. And OK, they know the extra time doesn’t make any difference, but when it’s your body you want to be getting in there and zapping any nasty little buggers that might be lurking as fast as you can.
That was just how I felt when it seemed to be taking so long to get to see the onc - I really feel like going and giving his secretary a big hug for getting me in to a cancelled appointment so quickly! In fact I might - I used to work in a hospital, and I know the backroom staff rarely get much in the way of appreciation.
Hello girls,
The tales of the rads - are certainly providing food for thought… and the shape of things to come. It seems to be just one hurdle after another. Sorry Andie and Jo that they are proving such a trial.
I am slowly getting better from the tax - though for the first time last night and then again this morning I experienced what must be hot flushes. Unpleasant and depressing. Yet another sign of enforced middle-age that BC puts upon us. At least I am winning on the weight war. I put on six pounds on the FEC but have lost two pounds so far on the tax. It really seems to depress the appetite. Hoping the effects continue for a few more weeks.
I am sure the Grosvenor stretchers to cucumber sandwiches - and nothing better on a summer’s day with a glass of Pimm’s to accompany them. I love going out for tea, there is something about going to an old hotel, and whiling away the time over a cake stand, and looking at everyone else arriving and departing. One of my favourite places is Babington’s tea rooms in Rome, next to the Spanish Steps. It was started in the 1890s by two English ladies looking to recreate a taste of home after they moved to Europe.
I went to the hospital this morning to get my line flushed - but after I’d been there half an hour the chemo nurse told me to go away and come back in two hours time as they were busy. I was a bit annoyed as it only takes about 5 minutes to do, so I decided to leave and rebook for another day. Sometimes I wonder whether there is any consideration to patients’ time. Think of all the lost working hours spent dissipated in hospital waiting rooms. Someone should do a study one day… I am sure it would run into millions.
Have a good evening.
Love Bright x
Hi all,
sorry been quiet for a few days been worrying all this time about my operation as it’s getting nearer ,
PLEASE PLEASE PLEASE can you ALL send me a PM and tell me how you all coped with this as I am petrified , I was even petrified today and that was just to get discharged from the chemo unit!!!
Went to hospital today to see my ONC (second time I have seen him! once for chemo and once for discharge!)
He said at the time of my scan (weeks ago now before I started Tax)
that my tumor had more than half shrunk so I was pleased with that cos I thought the EC never had much effect on it and the tax has had a dramatic effect on it, so wonder what it is now???.
I am now being transferred back to my breast care nurse Barbara she is very nice and has more about her than my chemo nurse.
I was told after my surgery they would know more about my cancer ie hormones ect and what further treatment I would need.
I have made a cheese souffle today I was going to make a quiche but I never had any double cream so we ended up with bought ones.
Love to everyone love Caron xxxxxxxxxx
Hi Everyone
Rads was at a different hospital today(St Thomas’) and although one of the machines was playing up fortunately it was not the one I was booked on. In and out within the hour - reasonable. We went on the motorbike because I needed to get to my own hospital for herceptin. In London this morning it absolutely poured with rain and we got very very wet.
2 days off now, Hoorah
Caron do you have a date for your op. I will send you a pm later tonight as requested.
Bright I hope you are coping with your latest tax. Now the weekend is here I expect you are off somewhere exciting. Enjoy. Not in your league but on the way home from London today OH drove us down Brixton market- it looked really interesting.There was a shop I noticed full to the brim with wigs, I wish I had known about it a few months ago.
Karen hope you are back on line I have been thinking about you and hope your rads machine is behaving itself. Also I hope you are settling into your new home.
Shell Good to hear that the antibiotics are doing their stuff, Do you go back to the Marsden soon for the pre trial checks. Good Luck
Jo I didn’t realise how physically easy the rads are.Its the stress attached to the travelling and the unreliability of the machines that is getting to me.I hope you are coping OK
Gail I love your reference to trotter flu- that new but very apt name has now become part of our family vocabulary
Love to everyone and especially anyone I have left out Sorry. I think chemo brain is permanant in my case
Have a good weekend
Andie
Hi all,
Sorry to go quiet - PC being stupid.
Lovely to hear about everyone’s exploits.
I feel very very lucky that my hospital is so close to me. I don’t think i dare ever move. I can walk it in 20 mins on a good day or bus straight there in 10 mins. Had my rads planning meeting (FINALLY) last week and it was OK. Did my normal panic thing, but they were great. They walked me around and showed me the room so that I can visualise it all to help with my nerves. Got measured and prodded. Don’t think I’ve been very good with my exercises, as it did hurt keeping my arm up for so long. I start at the end of May and I’m just gutted it has taken so long to sort out. Feel like things might be growing inside me!! And also wanted the Summer to have some fun. But…all my daily appointments are before 9.30 so will have the day left. Have my attractive tabbard to wear too!!
Feeling a bit crap still. Back has been killing me and I have been thinking the worse. Desperate to get to my chiro to sort me out. The thought of slipping my disc again worries me!! Have also had lots of muscle aches in my legs… I am wondering if Herceptin and/or Tamoxifen are to blame?? Have also developed insomnia since starting Tamoxifen which doesn’t help my body to relax. Having this terrible disease just makes you go from quite healthy youngish woman to feeling like you’ve aged and eroded!
Still the thought of posh nosh in a posh hotel will keep me going. have booked Steve for monster duty that day!!!
Hope everyone is OK! Caron - have attempted to pm you - hope it gets to you this time!!!
Oink oink! Gailxxx
Thankyou to all of you who have PM me .
Shelly has made me think differently about the op she said my boob is trying to kill me so it must go ( I will kill it!!) although I will still be scared when the time comes there is no getting away from it, it has to be done.
I am still having problems (well if you can call it that?) with all the sleeping I am doing !!.
When I went to the hospital yesterday I found it really hard work just to walk and I asked Steve to slow down (now before it would have been the other way round) also run out of breath really quickly.
Still only one more tax to go they said my op would be about 6 weeks after my last chemo (good I might start to feel human again?)
I have been really lucky really as far as me sleeping so much as Steve is only away 2 days so he lets me sleep sometimes I haven’t woken until 4pm when the kids come home from school.
I wonder did anyone else sleep as much as me?
My nails are getting worse day by day my first finger nail is half way down now, I can move it now.
I will have a good talk to my BCN Barbara she is very nice and honest.
Yesterday I went to see Marc in hospital and another patient was shouting " where’s his mother , where’s his mother?" I was quite embarrassed and a nurse said " she’s away" I said " yes she’s away, don’t even go there" ( cos I don’t agree with what she is doing )
I think the nurses have said something to her (cheryl) cos Marc could have come home the day before but she had to explain she wasn’t in Grimsby !! They (nurses) must have wondered where she was as she left him AGAIN on Wednesday and didn’t come home until today.
I realise this is not a gossip column but it’s just what’s happening here.
Well I will write tomorrow oh and while I remember ANDIE you put Karen I think you meant Susanne???
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
Ps hope you all don’t expect me to look glam on 13th !! cos I bloody dont !! xxxxxxxxxxxxxxx
Hi girls,
Will actually be set up online at the house tomorrow,so you’ll hear a bit more from me.,
Caron, I think Andie meant me as I’ve just moved into another place and am doing rads as well.
Andie,my rads are going ok but the machine broke down twice on the first day so I have an extra session added at the end as well. These things do upset me easily at the moment. I went to see BCN on Wednesday, she was wonderful, so lovely I cried. Its really hard. I do say to everyone please don’t be nice to me as I’ll cry.
Gail I’ve suffered from insomnia for years. The doctor, because of BC gives me zopiclone. Its worth a try.
As far as looking glamorous for the 13th, don’t worry Caron, at the moment I’d rather be wearing my wig. I’m just hoping I’m going to wake up one morning looking like Cheryl Cole. Thats less likely than winning the lottery!!!
If any of you long distance people are going to be in London earlyish on the 13th I can do early as I’m relatively close by, and I don’t want to think of you beeing on your own for hours.
Am going to PM you now Caron.
Love to everyone especially Bright for sorting it all out.
Kathy
Hi
Sorry Kathy i did mean you - chemo brain again!!
I decided that I would be brave and let you see that although I now have hair it is very very short and very very white. I have always had short hair , but not like this . I have got used to it and rarely give it a thought. Initially the texture was like straw but it is beginning to go back to what is normal for me, also the white is fading and the light grey is coming through underneath. As a matter of interest to those of you still waiting for new hair to appear I had my last chemo on 23rd January. I have had small amounts trimmed off twice to even it up.
Hope you are all having a good weekend
Andie.
Hello ladies,
Well I am still suffering post second tax side effects. Thought they were wearing off but they have come back this weekend: aches and pains in legs make it difficult to walk, breathlessness adds to this difficulty - and an intermittent dry cough. Yesterday we went to Dorking - and I managed to make it up the high street and to buy a cookery book from the kitchen shop (101 low fat feasts) - then waited in a bench by the war memorial while OH dashed to all his favourite shops: DIY, books, outdoor) - then we went round Waitrose together - where I bought the ingredients for healthy fish and chips (baked chipped potatoes lightly brushed with olive oil, and roasted haddock in black pepper, tsp olive oil and lemon juice) - and various fruits and vegetables. I am very keen on Chinese leaf at present. On the way to the station I thought I really must have a rest - so we went for a drink in pub we normally walk straight past - and what a serendipitous stop it was. The patio garden backed onto wonderful views of the Surrey Hills. The couple next to us were having an animated conversation about the location of all the unexploded bombs in England. “All I thought” - and according to the couple there were ‘hundreds’. I half took the information to be accurate as they said they had picked it up through a response to a house of commons question. Just hope there are none in my garden. In the evening I watched “The night listener” a haunting adapation of and Armistead Maupin novel - about a man having conversations with a 14 year old boy on the phone - who may or may not have existed.
This morning I woke up feeling okish - so off we went to Emmetts Garden in Kent, to walk through the bluebell woods and admire the colourful rhododendrons and azaleas. There was a wonderful speciman of a burnt toffee tree. Fell asleep on the way home - and felt like the woman in the Augustus Egg painting - “travelling companions” if you know it.
Don’t worry about dress sense on the 13th - the hotel is civilised but not really posh. It used to be a Thistle - but it is the most central one in Victoria that serves tea. Wear whatever you like. Andie - your new hair is very striking - but wigs will be equally acceptable (thinking of you Kathy). Caron - be sure to wear “Joanna” or perhaps a Norma Desmond exotic turban - you have the bone structure to carry it off.
Gail - I am sure you will be fine, I worry all the time about it coming back but I don’t see your odds are much different to a lot of other ladies including mine - though actually I think mine are worse.
Kathy so glad you can make it.
Jo - hope your skin isn’t too sore.
Glad your scars are healing Shelley - and you must be so excited about your forthcoming trip to Egypt. And just think you are doing really well considering the conservative prognosis you were given.
Love Bright x
Hi,
Bright,gathered you live near Croydon. We used to live there many years ago. There is a beautiful rhododendron park at the top of Gravel Hill cornering Ballards Way. When in full bloom it is a sight to behold, absolutely glorious.
I had dreadful side effects with TAX, my onc suggested they I didn’t do the last one but I did it anyway.
I wanted to make sure made use of all my options. My sympathies are with you at present.
Rads are,for now, a piece of cake in comparison to chemo.
Love to all
Kathy
hi ladies
Andie- your hair looks great, i have about the same amount as you, mine is brown with a hint of grey…
Bright- Yes in so looking forward to my hols. 10 more days and counting…
Caron- have you a date for your op yet?Thinking of you.
Hi to katemate,Jo,Gail + Suzanne.
Hope i havnt misssed anyone out…
Sending ((((((HUGS)))))) to you all
Shell
xxxxx
Shelly,owww 10 days (wish I was coming with you!!)
No no news on op yet I’m waiting for BCN to ring me .
Andie your hair looks fab glad you have braved it thats exactley what I will do when I have enough hair, no where near yet.
I’m going to hospital today for bloods ready for last tax tomorrow.
Want the chemo over and also the surgery over, at least I might start to feel a bit human again, my legs are like 2 lead balloons now and finding it hard to walk and to go up the stairs.
Ive noticed my eyes look terrible now don’t know if it’s because I have no lashes or brows but the skin looks old and I look haggard now!!!
I know how bad I look cos I say to Steve I look terrible and everytime he says " you look poorly " so that answers it for me.
well just got over the last tax ready for it all again sludge gob oh joy !!!
well must get ready now love Caron xx
Hi Girls
Caron once I had finished with chemo it surprised me how quickly my eyebrows and eyelashes came back. Much quicker than hair. I treated myself to a salon visit to shape my new eyebrows because I just didn’t know where to start. I am 3 months past chemo now but have ongoing problems with my nails, several of them are hanging on precariously. I stupidly thought that the problems would improve immediately chemo finished. OH commented that at least the chemo drugs must still be having an effect, and hopefully still fighting any stray BC cells - he may have a point.
I didn’t realise that cancer and chemo have damaged our immune systems permanently. I have started today with yet another cold.
Bright sorry to hear that you are still suffering with tax SE’s. I don’t know where you get the energy to venture out every weekend- my legs became very leaden and it is only within the last few weeks that my energy levels have returned to near normal.
Hi Gail,Jo Suzanne,Shell and Kate hope you are all coping OK
Love and hugs
Andie
Andie,
yes my nails are terrible already half of one has already come off!!
And I deffo have the lead in my legs! I could hardly walk today to and from the bus stop to the hospital.
I think your hubby does have a point the chemo will still be having some effect I think it takes ages to go fully.
I never got colds I always said it was the amount of garlic we had??
A lady I used to wait with for Owen to finish school has just been diagnosed I am not certain it is breast cancer yet though, Ive sent her a email but shes probably scared stiff at the minute.
love Caron
ps my chemo is really late tomorrow 3PM !! won’t be home till gone 5 now !!! xxxxxxxxxxxxxx