Back from my travels yesterday and on the whole all went pretty well. It was very emotional saying goodbye to my parents - my father in particular seemed upset but he won’t really talk to me about my health or his own. He has prostate cancer which is not currently looking well controlled but he just says we’ll both be fine and that’s as far as we get. Not sure when I’ll see them again - they’re up in Cumbria - as can’t see me being able to travel for some time after the op and they aren’t really able to travel very far any more.
Having a quiet night in tonight as couldn’t really face any big party with lots of people wishing each other “Happy New Year” and making New Year resolutions. But will have a glass of bubbly and drink a toast to all of us having a year with many happy times (and laughter) in it.
Pretty much at the end of the christmas season myself,…all in all went really well, my son enjoyed himself which was nice and I think he quite liked going to friends for christmas as they have boys his age, it was very relaxed and less stressful than relatives for him.
Kay, it is hard with the parents- particularly when theyhave their own health issues, I think we have talked about this before - my Dads in for an operation (again) and it all seems so ridiculous, I think for me I feel a bit guilty that I cant look after them at all, Its really good that you got up to Cumbria for Christmas…I am sure your Dad really appreciated it even if he doesnt’t say much. …I think for a particular generation - they wont talk much about their feelings or anything really big, I can see this with my in-laws.
Off for chemo on Fridsy - hoping this time the zometa doest knock me for six like last time!
Well hope you are all well and had a good christmas and New Year, and now all back to normal and ready to start the new year.
As some of you know, I have been pretty low recently. At the weekend I was in a pretty black place, very tearful, depressed and scared about my life and seeing my children growing up. I didn’t really talk to no-one, or leave the house until Tuesday, as likely to burst into tears.
I am happy to say that I seem to be out of it now, and getting back to my “normal” self thankfully, although I know that these emotions will return now and again. I am hoping that 2008 turns out to be a better year for all of us and that Herceptin turns out to be my “wonder drug” and works miracles for me.
Anyway, enough rambling, hopefully we will meet on 17. Have to warn you am very shy with new people and probably be very emotional. Not sure if venue organised yet, but as said before, my train comes into Fenchurch Street in the city, so would prefer somewhere along the central line, as not that au fait with the west end, and hate getting lost. Anyone any ideas as yet.
Well I was posting and it disappeared, it definitely happens if you try to move back and forwards.
Anyway what I had typed was this - Dawn I am really glad you are feeling abit more “normal,” I know what you mean about liable to burst into tears at any moment…its a roller coaster to say the least and it catches me sometimes when i am not really expecting it. I am glad that you are getting Herceptin, its really one of those drugs that have so many success stories attached to it.
I had a brain wave after reading your post…perhaps we could meet at one of the chains- if we meet in say later afternoon they shouldn’t be so busy and then we could order food or coffee - in no particular order-
cafe rouge - st pauls
pizza express -city, holborn, anywhere really there are thousands
tootsies - holland park
maybe a hotel -kempinski hotel 19-21 great malborough st…? some of my colleagues have stayed there and its just a nice plain hotel…very near oxford circus
Hi all,
Hope everyone had a good Xmas & New Year. Mine was very quiet but nonetheless enjoyable as I had been running around like headless chicken beforehand. Been very up and down though, think its because you have time to think about things. Its very nice to be off the chemo after all that time, my hair is growing well but still can’t get rid of runny nose & eyes.
Cathy- you came up with some good ideas, all I could think of was the Art Cafe in Liberty’s just off Oxford Circus down Regent St. Went into a Cafe Rouge in Manchester before Xmas and it was very nice.
Anyway off to tidy house up as got estate agent coming to look at house.
Take care all,
allie
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Thanks Louise, I thought that was the case. We’ll just have to arrange it on here and hope no axe-murderers are reading, and want to dress up with a wig, no eyebrows, some excess flab and turn up and join us!
Jacquie
Jacquie congrats on getting eyebrows back, thankfully mine never disappeared completely and managed to keep 2 or 3 eyelashes … LOL.
Cafe Rouge at St Pauls sounds great to me, no idea where abouts at St Pauls it is, but not too far from Fenchurch Street, so could find it … Pizza Express OK with me too. Not so keen on Holland Park, as absolutely no idea where that is to be honest, yeah could find it, but reckon quite a trek. Think fenchurch street on circle line, and to walk to bank tube for central is about 10 mins. Anyway, let me know. Only places I know are city based, as I said, no experience of west end.
Hope everyone is doing OK though this week and if got treatment that it goes OK etc. I am doing heaps better now, getting back to normal. Think having Sophie back to school and routine getting back to usual is helping me get myself back onto even keel. So that is good news.
Looking at booking holiday now for beginning April. Going to go Disneyworld Florida for 2 weeks, and looking to book private villa. Spoke to oncs secretary this afternoon and she is going to find out about getting a “fit to travel” document for insurance people. Rang Aberdeen insurance yesterday and got quote for £69 for 4 of us, for 2 weeks (can only get single policy due to length of time since dx). Excess is standard £65 for any normal probs and £750 for anything relating to my cancer, which I thought was very good actually, as not planning to have any probs with my dx while away!!! So now waiting to hear from him and then will book next week I hope!!! Can’t wait, something to look forward to. Also asked his sec about getting referral for liver specialist, although sec didn’t seem to hopeful, might have to see my doc for that. But health insurance has ok’d it, so once we know who has to refer us, just gotta decide (although think Royal marsden out now). Between Kay’s guy, Kings College and local Nuffield one. Just can’t decided. But will do by end of weekend!!!
Anyone got any news to report? Hope all OK as I said above and catch up very soon, and thanks again for your support while I had my serious wobble!!!
Florida…Disneyland…April… sounds like heaven, you lucky girl. Good news about the insurance - sounds v reasonable. Enjoy the rest of the preparations.
Love Jacquie xx
p.s. I wonder if you can go and meet more than one surgeon for an informal chat, eg like hairdressers!!! Would be nice to choose someone you like before committing yourself…
Dawn- insurance sounds very reasonable really, i am making a note of the Aberdeen Insurance company, glad you feel a bit more on an even keel, it is hard but as you say keeping busy is helpful (but not a perfect solution as we know), its really exiting that you can go to.Florida it is a lovely place and very good in April as the weather will be warm but not overwhelming. I think insurance companies have come under pressure to be more humane than they were a few years ago.
I had 3rd taxotere and 2nd zometa on friday - so far feel pretty Ok hoping it can stay that way, after number 2 was really horrible. Even managed to inject myself today with the white clood cell booster, also managed to get into bad temper with my husband about curtains, I think these things mask alot of the deeper stress- cos he is thinking I am doing this for her, and I am thinking will I be around long enough to make this worthwhile. or maybe we are both just thinking we must have been mad to go shopping in January - it was horrendous, thousands of people trying to buy cushions!!
I think I am going to cast a vote for St pauls cafe rouge. If you are standing in front of the cathedral looking at the statue of queen anne it will be on your right - you can find the full address on the website. Its actually a very big cafe rouge. i think it makes sense as its close to st Pauls tube on the central line so accessible to west end and bank station, kind of in the middle of where some of us might be. (allie I think you said your dentist was near oxford circus which would be quick hop to st pauls) Have to think about times- wouldnt want to go in full scale lunch rush. I am really very open to anything as i am fairly flexible at moment -still working but at alot of odd times,
jacquie - glad your eyebrows are coming back - my hair etc is hanging on so far…
I have a question I want to ask my onc now that I have had three taxotere- but obviously very scared- at what point do I find out whether this chemo is working at all? What have your experiences been?
Glad to hear from you all as we get back to “normal” after the Christmas break. Really glad also to hear you are feeling better, Dawn, and Disneyland in April will be great - good deal on insurance as well! It’s also great that your eyebrows are returning, Jackie - another step forwards in a way. I am now going wigless which was a bit scary when I started back at work yesterday. Managed to confuse one of our new parents completely who clearly didn’t recognise me - had only met her once before just before Christmas.
How are you, Jen? Hope you enjoyed having your two home and feel better now that you’ve told them.
I had my first scan half way through the treatment, Cathy, if that’s any help. It is scary though - you want to know but you also dread knowing in case it’s not good news. I’m having another scan the week before my surgery and am already panicking a bit in case it’s started growing again. In fact I’m feeling a little panicky about the whole thing really.
Are we settled on Cafe Rouge? Sounds good to me and even with my lousy sense of direction, should be able to find it from what you’ve described, Cathy. So just the problem of the time and how to recognise each other - quite like the idea of something large and silly on the table, but would mean someone would have to guarantee being there first! Like you Cathy, would prefer to miss the lunchtime rush though.
Anyway youngest is back to uni tomorrow so having a bit of a special dinner etc. Need to go and check nothing’s burning!
It’s nice to hear that we’ve all survived this hectic time without any major crisis. My liver has really been playing up, just hope the onc can put my mind to rest next week and say it’s probably because I’ve eaten too much of the rich stuff and drank more wine than of late.
Sorry to hear about your downer Dawn, hope you’re feeling much better now and that Herceptin really does the trick for you. It will be lovely for you all to go to Florida, bet you can’t wait and planning it will help to cheer you up. Cathy, I’m also having my second Zometa next Fri, I hope you continue to feel better this time round (my bones actually felt very cold). I hope your dad is doing alright Kay and glad you had a nice little trip. I hope you didn’t burn the dinner yesterday. Allie, am I right in thinking that you are moving business premises this month – it sounds like you’re going to be busy again, good luck.
We did have a nice Christmas (more subdued of course) but I think the kids must be in shock or didn’t know what to say as my illness was hardly mentioned. I did say that they could say or ask anything with no holds barred. All in all, I’m sure they’ll be fine, but I wish we could have had more time as the four of us only had 3 days together. Our daughter and boyfriend left yesterday for Germany and Andrew will be back from duty on Tue for a few more days before he flees the nest.
You must all be getting excited about your meeting on the 17th I wish I lived close enough to join you. I can’t wait to hear what you decide to do to recognise each other (large pink ribbons too obvious? stick on eyebrows Jacquie?).
Hi everyone I’ve been reading you for months fell together enough now to join in[see positive stories & reply to Blondi
I am 57 retired/sick nurse due to treatment [lack of energy /tiredness] and valuing spending time with retired hubby who is fantastic! [he wont read this!] Luckily I am not ill enough for DLA just invalidity
Went straight from DCIS 0605 to H2+ve liver mets 0106… luckily found when scanning small ovarian cyst so no symptoms just 3 tumours 6cm the biggest .I go to Christie M/C I was already on herceptin as routine and had CT’s 6wks appart that showed that herceptin alone wasnt doing the trick so I was elligble for the Omnitarg trial .Now stable ie. 20%+ reduction and holding[for more details see positive stories and reply to blondie]
Christmas was great with just a few blips only seen by hubby, my main trigger is grandchildren [dont have any yet] I am determined to see them My sons partner is working on said son as she is broody especially as she is a nurse on IVF unit. Daughter very happily civil partnershiped this summer very pleased parents after all the previous anxt on behalf of said daughter coming out etc.She now has someone to do all her traveling with they are very happy.My big achievement was managing all the wedding and making the cake! Never done one before but she asked thought it would stop boredom setting in! All my hobbies are craft related.Got a mini-dachshund the week I went for my first results---- heaven sent! funny affectionate dog {my first] she is a happy distaction for both of us She is the only one who dosnt feel sad. On weepy days she licks my hands to comfort me a good cure! Any way must get out of my PJ’s now and have lunch. Thanks for listening Jan
I am just going to post a quick message here to say welcome to you! Very sorry we have to meet here of all placs.
Wow straight from DCIS to liver mets - I am always amazed at how bloody unpredicable this bas**** disease is. great that you are on a trial like that. i would like to find one that would suit me but havent been able to. Maybe you could post a bit more about what you are getting, I will have a lool at the thread you mention.
You sound like you have a loving and supportive family- thats a wonderful blessing, I have one son, supportive but sometimes pressed husband (and he won’t read this either), Seems to have recovered his good humour today. The up days and the down days are definitely a fact and I am pretty new at this…
Jen - not too bad after 48 hours, a little achey but better than last time, I hope it can stay that way, what day are you seing your onc?
Hi again Had a phone call from daughter [30yrs old] she’ s just got back from Barts after her first visit to the family history clinic — yes we are one of those families with a ‘history’ My younger sister and I went to family history clinic from around 40ish yearly mamo’s etc @ 45 sister DCIS had reconstruction is fine now 54 used t o be very positive as Mum & Nan surrvived their BC in1930 /1966.Had one cousin on fathers side who died at 45.Seen the genetisist a couple of times to try and see what this means for our daughter /granddaughters 1 in 3 apparently makes you feel guilty …not found and gene yet but something is up!!! Sister in law had BC at 42 too that made us really angry as their is no genetic link!!! She is fine had recon/chemo/ tamaxofen is now five years down the line .basically one of us had cancer for the lasr 7 years should write a book! sorry about that rant but feel responsible today for the next and future generation of females
This time I know it’s not me! I double checked i was signed in just before i pressed the button, and it lost my message and told me I wasn’t signed in!! Frigging computers. Now I have to go and cook tea, so you’ll have to wait for my pearls of wisdom…
love to all
Jacquie x
Hi Team, and welcome to Jan,
Sorry to hear about your situation, but thanks for telling us about yourself. i’m glad you’ve enjoyed reading our threads and felt ready to introduce yourself.
I know what you mean about the genetics - I sent my blood off to the Royal Marsden in Dec for testing - expect it’s all gone up in smoke now! I have a sister, two nieces, and my two daughters to feel responsible for.
Cathy - well done you brave lady for self-injecting. My turn to call you a tough-cookie! I had a scan halfway thru chemo, and think that’s pretty normal. Maybe you should ask. I’ve got my end-of-chemo-lets-see-if-it-worked scan next week, then a ten day wait for results. It was looking pretty good at the halfway point - but i’m more worried about any nasty surprises.
Kay - brave you too for going wigless! Was there a big difference between the wig and your new hair? It’s no wonder you’re feeling nervous about your scan and surgery, it’s come around really quickly. I won’t say ‘you’ll be fine’ cos i really hate it when people say that, but of course it’s highly likely you will!
Jen - you must feel sad saying goodbye to your ‘babies’. I’m sure they were quiet because they were trying to adjust to the news, and in particular trying to guage how you were feeling about it. It’s so hard tho - you just want to protect them from it, don’t you?
I went for my second on-it’s-own herceptin today. Impressed myself and got there for 8.30 (takes about an hour at that time of day). They’re setting up a ‘herceptin breakfast club’ (almost sounds appealing) with coffee and croissants, if you can get there by 7.30 or 8am!! Shame I’m not a morning person…
I felt a bit unwell during the first 3-4 days last time, so hoping it’s better this time. I’ve also taken the plunge and started taking the Tamoxifen - I was apprehensive as so many people have posted about having horrible side-effects. OK so far…
Well it sounds like St Pauls suits most people. I’m flexible on time as it’s not too bad a journey, and hubby is on school pick-up duty, although it will cost me double if i’m not on the train back by 4.30 - flippin train companies… No worries though.
Should we book a table under an assumed name? If so, what? Lisa Simpson? Mrs Bin Laden? Ms B Spears? Answers on a postcard please.
Better go - the dinner’s burning now!!
Have a good evening everyone
love Jacquie x
Just quickie, I don’t mind what time we meet but if we got there early enough, say 11am, then could keep table til 3pm or something, cos we would beat the lunch time rush in for tables, and still have time to stay and chat, whereas if we meet after lunch, then might compromise peoples timings, for having to get home. I know that feeling, like OH could cope with lunch and dinner with the muppets!!! Needs help at the best of times!!! But am open, so whatever you all feel really.
Back tomorrow, as watching Wire in the Blood and need to concentrate, so will post more properly tomorrow.
Hi all,
Welcome Jan, I’m also an ex-nurse, gave it up in 2000 just had enough of the stress etc.
Kay- how brave going wigless! My hair is growing back nicely but not enough to go bandanaless, OH says I look like an ostrich, would prefer to look like a baby owl or something cuteish…thats husbands for you! Wouldn’t mind but he hasn’t got much more hair than me now!
Jen-glad you had a nice Xmas after all the anxiety of telling the little ones. My liver has been playing up a bit too, I’ve slowed down on the wine to see if that helps.Yes, I am starting to move the business but will probably take about two months, the shop is only moving a few yards but the manufacturing unit is moving about a mile into the local village, sounds easy but its going to take a lot of co-ordination. Adding to that OH wants to sell house and move into rented accomodation so we can free up some money and we can go on the holidays I want to do, St Petersburg and Japan are still on the list of must do’s AND it looks like OH’s job in London is a bit dodgy at the moment so he’s looking for new job too, hopefully somewhere closer. All this change!
I have an idea to identify table, I have a plastic gnome called Mr Wallace who travels the world with us, I’m sure he would love a quick trip to London!! Don’t think I have a photo of him in front of St Pauls though only lived about 10 minutes away when I lived in Big Smoke. My appointment is at midday so I would say anytime to suit after one should get me there in time. Mr Wallace is only light and loves travelling on the train, he looks out the window on the way…just say the word and he will be there!
Dawn, you can either walk to St Pauls which takes about 20 mins or walk to Monument/Bank and catch central line one stop.
Thats my ramblings for the night,
Take care Allie