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Darling buddies from May - moving on

lisaf
Member

Re: Darling buddies from May - moving on

Hi All

Angie been thinking of you and you are a true inspiration. From your post you say your prognosis was appalling all the time, I thought you had a really good prognosis at the start, but, how they manage the pain and the vino works, cant even contemplate what you are going through. Hope you get to spend some fun times together. There was a link on this site to somewhere that arranges holidays/trips r something nice for you - forget the name will have a look. Talk to the Macmillan as I no when my aunt was ill, they wrote to her credid card companies and the money was wiped clean, no its not major but gives you more spending power to try and have some fun! Get plenty of rest. Does that mean your treatment is finished? Any news on parp trial? Hope you aint in too much pain!

Mamo went okay, results in a week. Headaches not lifting at all and been over a week constant, there when I wake up which is why Im freaked but trying not to stress this week and see what happens. You all sound busy - we have no snow now and sun is shining and Im back on diet and treadmill in my house from my brothers - robson didnt like it thou !!!

Love to all and hugs to Angie - hey Im close by if you need anything xxxx

nicky08
Community Champion

Re: Darling buddies from May - moving on

Hi everyone
Angie - it is lovely to hear from you but I can tell how you are still reeling with the speed of things. I do know where you are coming from regarding facing your own immortality. I've done a lot of thinking over the past 10 months but don't tend to put it on here as I don't want to scare anyone off! If you want to PM me and we can talk then please do - I don't think anything you think or say will shock me or be much more different to what I think. You are right to go out and enjoy every moment - sod the credit crunch. Have some 'experiences' that make you feel good - even if they are really simple ones or, better still, really expensive ones! There are some brilliant threads on here, in the secondaries forum, about hospices, pain relief things like that. In fact I was at my local one yesterday for a back massage - what bliss! She said it was like popping bubblewrap all up my spine as I'm so tense. The aromatherapy oils she used were lovely as well. Dippykate's blog and her brilliant telling of what she's been through may help. There are some very 'good' threads about the final moments and what to do about wills etc - but you'll have to get used to our dark sense of humour on the secondaries forum - sounds just up your street! If you want I'll track them down for you so your slow broadband doesn't have to churn away for too long. I'm glad you've not got too many rads to do and the steroids are being reduced - at least you should feel better and be able to sleep. Anti depressants will help as well, don't worry I've been on them 2x in my life after postnatal depression so they really can lift the gloom. However a glass or 3 of wine will be just as helpful;-) Post when you can but make sure you are doing what you want and can do. As Lily said, if you'd like a visit from us I'm sure we can sort it out. Also definitely apply for DLA - you will get some financial help through it - should be fast tracked and it's backdated to date of application. Thinking of you - in a very positive way xx
Quick catch up with everyone else. Snow is gradually going but still leaving behind a lot of icy patches. Luckily not had any more overnight just heavy rain to contend with which is adding to the melting ice! My route to work is normally good as it's on main roads and only for 10 mins so I should be OK when I set off later. Enjoyed my massage yesterday (as above) and have got 5 more to have - lovely. I may then see if I can book the therapist privately as they are all volunteers at the hospice and no charges are made. Otherwise not been up to much. Hope to get out this Thurs when I'm not working to attack the birthday ideas. I fret about things so much until I know what's happening or going to happen so I'm in list mode at the moment! Next bit will be sending invites out to family and friends for her drinks party on the Sunday. I need to get her to do this during this week as she's off ski-ing with her college on Friday so won't see her for a week and then it's getting a bit close on time. At least she's accustomed to the snow, on previous years when we've gone as a family it's normally been damp, muggy and not cold at all here, let alone a week of snow. I'm still struggling to get/find a suitable photo on here, will try again when I'm back from work.
Hope everyone is doing OK, in all their circumstances. I have a fasting blood test on Thursday morning to check my cholesterol levels as they've risen recently and will make sure they take a good armful to pass onto the hospital for my next treatment next Monday. Not looking forward to the 12 hour fasting though - just like a CT scan but at least I don't have the disgusting drink to take when I get there. Will be packing a snack and coming straight home for a cup of tea and a cake!
Take care all, must get organised for work now!
Nicky xx

Lily200
Member

Re: Darling buddies from May - moving on

Hi everyone,
fab to come on here and read so many posts and what everyone is up to. Angie your last post just popped up. Although I am so saddened by your prognosis and it stays with me wherever I go, I really appreciate that you feel able to be so upfront with us. I think we probably all feel very frustrated that we cannot actually sit by your side or be more help in the physical sense. So if we can do anything on here in terms of cyber support, you are helping us too. I think the tablets will help you a lot. I don't talk about it much but my eldest brother has lost 2 partners within 2 years of cancer, one breast, one ovarian. Both went on to antidepressants and he described it as 'still knowing the situation and what was going to happen but that it did not overwhelm them all the time, so they could laugh and enjoy things.'
I hope they do pull all the stops out to get you as much help and cash as is available so you can do more things you want. Don't forget those holidays for cancer sufferers, in Ireland I believe, if that is somewhere you would like to visit. Macmillan will give grants for holidays too. If you wanted to meet any of us we could try to plan that too - oh hell I would never diet in time.LOL. The doctors statement is bitter sweet but he can only guess and plenty of people on here have defied the odds, so why not you too? I know you can cash pensions in if you have any.You may remember that my lovely Mother in law was desperate to pass on at the end and if you want, at any time I will share how that came to happen, as gently as snoozing on a summer day, time just slowing to a gentle stop.I would not do this without you wanting to know.
Tell someone broadband is top of your wish list. You know if you want to help your Mum a little, think of something she can do for you, I know it will help her. Glad not too many rads. B...y dex and the focus problems, you will feel much better as they ease up. Your sense of humour is still shining through mate, setting an example to us all X X
Lorraine, your choice of cakes!Chuckle, chuckle. Hope you went somewhere nice tonight. Bev I am planning a swim, how long were you after rads though?Hope your hand is not sore or worse infected!!Lisa sorry the big squeeze was yoweee, I hate them. Did they tell you it was ok or do you have to wait? Mine are in April.Hope those horrible headaches go but it is a known side effect of arimidex so try to stay calm. Julia sounds like you had tons of snow, bet the dog went potty in it. Mine always tries to eat it, all of it! Nicky what are you up to? Hope having a good time keeping busy buying pressies for the big birthday.
Love
Lily x

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Re: Darling buddies from May - moving on

Just thought I'd give you all an update. It's been an amazing roaller coaster of a day. I saw the GP this morning and sorted out Tamoxifen, antidepressants, steroids and something else, sleepers I think. He reckoned that half a bottle of wine is just as good for the old seratonin and I've got nada to lose right. In all honesty he said I need to be prepared for the fact that my own prognosis was always appauling and I may not see the end of the year but that's no reason why the time I have shouldn't be pain free, fun and enjoyable. So Tommy and I are telling the banks what they can do with this creditcard debts etc and the GP has given me that special fast track form so we can maybe get a little DLA or something. The Guys at MySociety are going to support me for as long as they can too so Tommy and I may yet have some real fun together.

We had the really difficult discussion about what it's actually like to die and it's really helped. You hear a lot of things in the news about people like dignitas etc and I don't really know much about MacMillian and MarieCurie but they're apparently really good at helping you manage the pain so that you do not suffer and there's a great hospice here for retreats etc. None of this take away the emotional pain (that's what the antidepressents are for as I am clinically depressed now it seems and don't have to be, sleep is good, sleep is needed) but it really is good to know how much love and support is actually out there and it's heaps.

You've all really helped me through the last week you know girls and I love you all with all my heart for it. I'm still praying for a cure but at least I hope my further treatment can be of some benefit... Who knows... VertAngie.... Dead unlucky but not dead yet 🙂

God I miss my Broadband, maybe that's life after death.. floating in the ether(net) LOL.

Lots of love

Angie

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Re: Darling buddies from May - moving on

hi everyone

angie, you are doing so well , even if it doesnt feel like it. its so good that you managed to let us know how you are. and dont bother about winging, i think if i have to go through more treatment, i would be just the same,especially when you presumed youd done it all. we all breathed a huge sigh when we finished. and its hard to stay positive all the time. but the good thing is they havnt give up on you, and are trying everything they can.

keep on trying to enjoy your days, (i can imagine its very difficult, but you wont regret it in the future, hope you feel more calmer after the steriods, like you said they do get you hyped up.
god bless. x

lily 2000

my favourite cake is something tarty, maybe lemon meringue, hope you find some restful moments as well as working this week, dont worry too much about the diet, youll be so busy at times youll forget to eat.

nicky 08

hope you doing ok.

i will look this week for my dress, off out tonight so better get ready. speak soon take care everyone.x

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Re: Darling buddies from May - moving on

Dear Angie I hope you start to feel better once the steroids are reduced. and you whinge, scream, shout whenever you want to! Glad teh rads weren't too horrible and that you are coping so well with that part of it. Thinking of you.

Lily you are so cruel to yourself. We just have to try to be patient and not except to be as we were. You ask about swimming well I went back to that today and it felt great although again I was extremely slow and I don't like catching sight of myself in the mirror with the fat body and pinhead with the cropped hair but still once in the water it was o.k. and it certainly made my arm feel better.

I had a scare yesterday with my arm as I took a glass out of the dishwasher it broke in my hand and I cut my finger I went into a state of panic saying "but I've been told I must never cut this hand " my son looked at me and calmly said "so you think you are going to get through life without ever cutting or marking that hand? get real it is going to happen now what should you do about it?" what a sensible chap now I know why he went to go to uni. I wiped it with an antiseptic tissue, elevated, applied pressure and then a plaster panic over. So far so good.

I have contacted the hospital re the dodgy nipple and they were not overly concerned which put my mind at rest. I have been advised just to monitor it and if it doesn't clearn up they will take a look at it for me.

Nicky sounds as if you have had a lot of the white stuff! and as you say really pretty.

Kirsty what a lovely photo and you carry on being a positive thinker!

Love to all.

Bev x

lisaf
Member

Re: Darling buddies from May - moving on

Hi All

Angie, hope docs goes okay, and never ever complain about twining on here - I do lots and dont have your problems to deal with. Really hope the reduced steriods help witht he woozyness and vision problems, do you have headaches too - Yu are dealing with it amazingly, even just posting on here, must of been a total shock as I cant remember you compalining of having any side effects beforehand, just the lack of appetite! Take care and get as much help as you can xxx

Mamo went okay today, boy, cant remember the squashing being that much last year!!! Headaches still here so monitoring for anotehr week then going to docs. Weight loos nothing this week but have stuffed them at the weekend.

Love to all, will catch up later, just got into work
xxx

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Re: Darling buddies from May - moving on

Good morning all: As my job share partner is away, I am working today and Tues, she is back Wed so I can do a catch up today. We had about 1ft of snow in the lane leading to the A45 on Thursday so didn't even try to escape, Friday was compacted snow and ice with another 3ins of fresh snow on top. Nice! Went to bit of a do in the village on Fri night and crunched around in the car so we didn't get soaking wet feet and trousers. When we left at about midnight is was -10C. Bit chilly, what?

Started the Arimidex on 26 Jan and so far no SE's – I take mine at night. I think it is a bit soon for any effects, but will just keep going. Have had no problem with the rads effects now I have this wonderful cream from Neals Yard. My battered boob and chest wall is discoloured but my skin does that when I get cut or badly bruised. Still waiting for appointments for ECG (pre Herceptin) and bone density scan, but am not rushing them – a few weeks away the hospital is good news to me!

Lisa: What is the secret of your weight loss? Just lack of appetite or do you have a magic formula. Every time I think "right today we start the diet and exercise" something happens. But I will get there! Good luck with the mammogram today, don't think I could face that with my poor battered bit.

Lorraine: What a great idea – the dress party. It was my DX anniversary on Friday and I can remember in detail what I wore for the appointment and how I felt all the day. The only good thing about that time was that the stress over the next five weeks before my op made me lose 10lbs! Unfortunately it came back with another 14 of its friends!!

Nicky: Good of you to retrace your history, I lose track of who did what and when. I remember you giving me a lot of info shortly after my DX and as always on here, everyone is so good.

Lily: Your BIL must have been in agony and being treated in the Blue Peter way must have made it worse. And the way he was treated after the op was a disgrace. Are we really a Third World Country? With all the money (according to the Blessed Gordon) being poured into the NHS it is appalling.

Bevy: Know what you mean about being c**p at exercise. I was working in kitchen last week with good loud music on and thought "I know, will do an aerobic routine" - did that for so long can make up my own. Only did basic stuff and was exhausted – some hope of getting back to fitness!

And Angie: You are never far from my thoughts and just hope that the treatment is going OK and will do the trick. No sure you will get the burn soreness we all got on our boobs, but the Neals Yard stuff worked for me.

Better do some work before the next load of snow hits us – due later today and overnight. Rain first on frozen slush, then freezing temperatures and more snow. Looks like tomorrow may be a duvet day again!!!

Lover and hugs all round.

Julia
XX

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Re: Darling buddies from May - moving on

Morning Ladies.

Still on part time broadband here and on a heavy dose of steroids which they've given me to counter the swelling in the brain, it's working but it makes your arms so heavy it's hard to type and not having broadband properly really doesn't help I have to say but when you're a web developer like me.

I've got an emergency appt at the docs in an hour to get more steroids and the dose is being reduced by one a day so I'll be off them after friday which is great as I can hardly move but am so restless too. God I hate dexamethasone. They cause muscle wastage too which really doesn't help.

It's a 15 min drive to the docs too and it's all snowy out there, very pretty though but wish I had the energy to do things. Tommy's being so sweet and just encouraging me to rest which is all I can do with no energy or broadband, still haven't finished unpacking from the house move, can't believe I collapsed the day after moving.

Still alternating between hope and fear that I won't even make it to the end of the day. Going to ask questions about DLA and things like that now too basically get every bit of help that we can. In all honesty I'm reaching the stage of thinking that I just want to have as good a time for as long as possible and then go quickly and without too much pain for myself or the family, especially Tommy. Sorry if that sounds morbid.

The brain rads have wiped me out so much that I'm just staring into the distance a lot, but my focus is dodgy so that's only part time too. I'm also not sleeping too great. Steroids again I reckon.

Just really really hoping that the week gets easier but it feels like its' probably going to get harder actually 😞

Sorry to be so whingy. I'm trying to pick up the pieces, honest.

There was actually only 2 doses of rads to the head and there was no mask, just a little bit of biro and sellotape, it was really efficient actually.

Lots of love to you all.

Angie

Lily200
Member

Re: Darling buddies from May - moving on

Hi,
well I tried to find a snap of the dog to put on here but failed miserably. Found some of me but either they were a while ago and made me feel like a fraud (ie thinner and with lots of hair) or recent and I couldn't find one I would broadcast in public. I am hoping this annoyance about how I look will help me to do something about it. If you here of a whale spotted in the mediterranean this summer, it just might be me!!LOL. The tummy is just so bad, even though the extra weight has done wonders for balancing my chest back to normal. Trouble is some days I just think so what if I weigh more, just can't stick to it. Like you said Lisa its the weekends. i was very tired this weekend too and got up really late, which is unlike me. It is quite a bit more work having a lodger (my BIL) but he is very easy to have around. The hospital eventually discharged him at 10.35 pm with no painkillers or anything. Just said if you need a prescription you'll have to come back on MOnday and ask for one!! The ward are going to complain internally about the doc refusing to come to the ward to see him, as he had been put on a satellite ward. Still the surgery went well although he still has no idea what they did or had any advice. No appointment for the fracture clinic either! Just totally over-run by the extra injuries from the snow. He was told they had had 50 broken wrists instead of the usual 3 they see. Maybe lucky you haven't got more snow Lisa. I bet the dog loves all these walks. By the way good luck with the mammo on Monday. Mine is in April on the anniversary week of my surgery. Anyone else got appointments this week? Angie how many more rads do you have? Are you feeling any benefit from them yet? I hope they are kicking a...e for you.
Bev
good for you for even going to the class I say. Well done and each tiem will get easier. I laughed at what you said about your photo, I am having the same trouble.I have asked my onc to arrange keep fit classes locally for BC ladies whio don't feel up to going in to a regular gym and he has said he will. Guess I will have no excuse not to go to that if it goes ahead. Anyone know if I can start swimming yet? Nicky glad you had a nice meal out, even if you skated home. Will we see you making another tv appearance on the show??LOL. I have a lovely picture of the 'ski-ing holiday'trouble is I am focusing on the cakes as usual!Glad to hear you can get your ring back soon, mine is still tighter than it was but not strangling my finger any more.Are you managing to get to work with so much snow? My road was a nightmare, but ok if you could limp up to where the buses go through.Coming back down the slopes was worse though with all the parked cars to weave round. Kirsty you can have all my future snow, once was enough. Whereabouts do you live, I thought everyone got a bit of snow? Lorraine, this is good cake eating weather isn't it? Caramel shortcakes are my downfall, what is yours? Sorry did not get round to dresses as went to a weding fayre with my daughter. Guess what I was doing? Trying the cake samples!! Soooooo bad when I see cakes. Any ideas on a job yet? I am envious of the lie ins though, I never really appreciated them enough.
Angie hope this week goes well for you and that the rads are not too bad to endure.
Love
Lily x

lisaf
Member

Re: Darling buddies from May - moving on

Snow at last, been out with dog and think it does me good, think it would be a lot of thinking time but it keeps me occupied, albeit think I have snowburn on cheeks!!!! Hope it lays!!!

Not enough to build a snowman!!!

Angie - sure you are having a well earned rest today x

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Re: Darling buddies from May - moving on

hi girls,

thanks for the advice re the weird crusting nipple. I will get it checked out for peace of mind.

My arm is much better than it was but I still have a swollen finger and thumb. The arm becomes uncomfortable if I have been using it too much as does the area around my back but not as bad as it was so time will tell.

Well I went back to a pilates class yesterday and was absolutely useless I was surprised how weak I was and how the exercises felt so weird now I am a bigger version of myself just feel bulky and uncomfortable. Still have to start somewhere and must learn patience.

I eventually managed to work out how to get a photo on only to discover it is too small I will try to put another one on a some stage. Although it is probably preferable that it is a postage stamp shot!

Love to you all but especially Angie and hoping you are feeling o.k.

God bless

Bev x

nicky08
Community Champion

Re: Darling buddies from May - moving on

Oh yes, loads of snow plus the joy of freezing overnight temperatures and no gritting outside our house! OH and I were at some friends last night with a group of us for dinner (which was absolutely fab by the way) and we walked home. Quite a challenge I can tell you and that's even with walking boots on! The roads where we had to cross were like an ice rink. Our garden is still covered by about 4 inches of snow and the possibility of more today or tomorrow! It's great if you don't have anything you need to do but a bit of a nightmare otherwise. However it is really pretty still and with the sun shining it really picks you up. In fact OH, YD and I went for a walk yesterday morning, got the papers and went into the local bakery for hot drinks and a cake - we sat outside in the sun and pretended we were on a ski-ing holiday! It certainly felt like it.
My hand is OK, not getting any worse but still the attractive reddish colour that I showed you when we met up Lily. It comes and goes in how puffy it is but it's pretty stable now so I will get my wedding ring re-sized soon so I can be married again! The palpitations have just about stopped except where I've had too many vino's, like last night, but I know that's my own fault so I put up with them. This is the one thing that has improved so much because almost straight after finishing chemo I went into them and it/they are so debilitating. Just keep popping those pills!
Hope everyone is having a good weekend and enjoying the cold snap even if it's not snowed. Back to reality tomorrow though! Take care all and hugs all round.
Nicky xx
Another ps - I've realised what a dumbass I was with seeing the previous comments - you can scroll through them, duh! I did know this but somehow had forgotten, why on earth would that happen? Surely nothing to do with chemobrain?

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Re: Darling buddies from May - moving on

Hi Again

I am sooooooo jealous, we have not had any snow and really want to build a snowman or have a snowball fight..... just to be a kid again for the day!!! 😉

A few of you have mentioned my photo. That was me on my wedding day in July 2007, just before going into church to say my vows. It was before i was diagnosed with BC. It reminds me of who i really am, someone who be can be a positive thinker, (if that makes sense!!!).

Hope you all have had a good weekend. ((((BIG HUGS)))) to those who need them.

Kirsty xxx

lisaf
Member

Re: Darling buddies from May - moving on

Hi all, cant believe you all still have snow - we havent had any since last sunday night and believe you me we usually get it bad up here - it is cold mind!

Hope everyone having a okay diet - crap tv so eating far tooo much, was trying weight watchers points and doing okay, but loose it at weekend or when I feel down just much!! Dunno bowt everyone else but Ive worked a lot through it and been back full time since just before xmas but im suddenly sooo tired all the time, dont sleep too well and hit a tired period then wide awake at obsene hours.

Well off to flatten my hair in wooly hat and walk the dog - its freezing but no snow.

Hope everyone okay and Angie hope the rads went okay, think you have to wear a mask etc - hope it goes okay
xxx

Lily200
Member

Re: Darling buddies from May - moving on

Hi,
sorry been a bit hectic trying to sort my BIL out. They can't get a doc to discharge him, so he is sitting there and we are sitting here waiting. They say they will still let him out even if after visiting hours. The doc has been in A & E all day and not made it to the ward. Why there is only one doc who can do this, remains a mystery as it is an enormous hospital. I have filled his fridge and freezer up today for when he goes back home with suitable one armed dinners - not easy! Next I have to sort his washing - not so keen on that bit !! Yikes hope there are no shocks! You all know what I mean.
Nicky has the snow started to clear? Ours took ages to go although being on the sunny side of the street ours cleared days before TTT, who is on the dark side. This is the first car I have had with traction, so I felt a bit safer on the ice this year. A tank would have been better still. I have a much busier week coming up at school, so must try to get enough sleep this weekend. It is still a hang over from the chemo that if I feel well I don't want to waste it sleeping.My tummy is slowly starting to accept small amounts of salad and fruit as long as I don't try both in the same day. This is the first week I haven't had to drink a glass of water during the night, so maybe my salivary glands are recovering too. Bev I was wondering if your arm is getting any better? Also Nicky, your hand and palpatations. Julia how is the burn now, hopefully ok.
Angie, how are you going on the rads? How many do you have? I have read some of the answers to both your threads and hope you have been heartened by their comments and stories of people who have made significant progress on WBR. They just don't know, they just work on averages for patients from historic data. One thing we know about you Angie, is that you are definitely not average.
Hugs
Lily x

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Re: Darling buddies from May - moving on

hi everyone

angie, hope your sleeping hasnt been affected too much, and you at least get some peace from your worries then, be good to yourself, were all thinking of you.

hope the snow as not stopped you in your tracks. nicky i wish i could share some laughter with my hubby(re-snow fights) sometimes hes so serious at present, just how things are affecting him i suppose. mind you im not as keen on the snow at present, too cold for me. but keep sharing those precious moments, hubby and i will be back to walking when the weather improves. where is your moggy im dying to see him, is it a little thing with ribbons in her hair, like paris hilton would own? or a big one to keep you warm on cold nights. i used to have a cavalier king charles, i miss her all the time but hubby says were not having another.

lily 2000

hope you had a lie in, i know what you mean about not being able to open your eyes in the morning, i felt like that when i was at work, im appreciating being able to decide when to get up without rushing.(not rubbing it in!) next week i will probably put pic on of my dress, if nobody wants to party i will have one anyway.

everyone else have a good weekend.x

nicky08
Community Champion

Re: Darling buddies from May - moving on

A quick p.s.
It's annoying that you only see the last comment when you reply which is why I thought it was a new page - realised it wasn't when my other posting appeared at the bottom rather than the top of a page.

nicky08
Community Champion

Re: Darling buddies from May - moving on

Hi
Lovely description Lily! Surprised you didn't wander around topless for all to see LOL Glad you've survived a full week at work. It's quite a shock getting back into the old routine so it's not surprising you're starting a bit later. Hope you can enjoy the weekend and not be dashing around too much catching up with everything.
We've had loads of snow here all week. YD went to college once, Friday, and ED didn't go at all. Our lane is just covered and has not been cleared or gritted so driving out onto it has been fun. It took me about 20 times to get onto the road yesterday when I went to work - not a very suitable car for these conditions! I decided to only work the morning and I'm glad I did as we had about 2 hours of heavy snow again in the afternoon. I went up to Tesco to get my weekend supplies in and nearly couldn't get out of the car park even though I'd driven YD's car which is as low powered as you can get. OH came home early and wanted to go for a walk in the snow as he's been at work all week so we all went over the fields outside our house and had a snowball fight! It was really deep - about 6-8 inches and mainly undisturbed so looked very pretty. It's sunny here right now so another walk beckons and then some snow clearing so we can get the cars out if we need to. All this has interrupted my shopping/inspiration for YD's b'day so I will need to crack on next week. She has about 4 weeks to go so I should be OK - I hope. Glad BIL has got his arm/hand sorted (sorry can't remember which and daren't go back a page!). Hope you don't have to be nursemaid and he's on the mend soon.
As I can't remember what has been written by everyone on the previous page I'll just say hi and hope you all have a good weekend and rest when you need to and all look after yourselves.
Nicky xx

Lily200
Member

Re: Darling buddies from May - moving on

Hi,
Bev yes I have had something that sounds like that, similar to when I went topless for too long on holiday once!Mine was stuck on one side completely for a few weeks and is still tender. I guess the burn takes a while to go completely. Mine was green for a while!! I wouldn't worry, but obviously cannot see it. Lisa hope you can hang on to that positive mood to give your jangled nerves a little rest from all your worries. I bet it is cold up your way too. Gosh you have a lot of appointments to get through. Kirsty well done for getting through another week. I just finished my first full week but went in late as could not keep my eyes open when the alarm went off. I need to move my body clock round a bit as I have insomnia at night. Nicky it was sad to read through your secondary dx, which was before we all met up on here so we have not really appreciated what you have already gone through. What you wrote for Angie was very positive and I hope it makes you (Angie) feel as encouraged as I was by that. When is YD's birthday and also yours? Can't be long now. I still haven't got a picture either, need help I think!Did you get hit by the heavy snow this week? Will slow up your walking.
By the way BIl has had his op after being left for 36 hours waiting for a slot in theatre. It is looking good and he can move it again and feel touch. We have asked him to move in for a few days. Still waiting to hear what they did but he thinks they have put wires in rather than a plate. Trouble is wires have to come out! Lorraine you have everyone chatting about outfits now, will try to get on to some sites this weekend. Trouble is I will probably see something outrageously expensive and then want it for my daughter's wedding and actually have to buy it! Just did a full week at work but not a single lesson to teach. Mostly I was eating up the huge pink cake they bought for my birthday, no diet for me till all the chocs are gone from temptation.
Angie, hoping today went ok at rads and skin holding up. We are all thinking of you so much and sending messages of support. But you are such an upbeat person, I just wondered whether you would prefer us to lift our mood too. I sometimes find messages of sympathy make me more upset. So just let us know if you would prefer a different mood or if it would help you more, by us being more in tune with your battling the bu...r way of thinking. Don't forget to drink more on rads, as I got my sore, dry mouth back with it. I think they make you quite tired too so thinking of you snuggled up in the duvet letting the rays do what they are best at.
Hugs
Lily x

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Re: Darling buddies from May - moving on

Hi Everyone

Angie - Thank you for letting us know how you got on.It is a brave and wonderful thing for you to do at this moment in time. My thoughts and preys will be with you and also your family, all the time. We will all be keeping are fingers and toes crossed for you and sending you lots of hugs. xxxxxxxxx

Lisa - well done on the weight loss. Do you have any good tips? I have put on two stone from being on treatment. Now i am back at work i need to start getting fit and losing the weight.

Bevy - My nipple also went crusty when i had radiotherapy. It wasn't sore, but i did get the nurse to have a look. More peace of mind than anything.

I have now managed to get through my second week back at work. Im not sure about anyone else who has been off work a long time and just getting back. It feels a little wierd, but good to be back to normality!!!!

Best wishes to everyone else and ((((BIG HUGS))))

Kirsty xxx

lisaf
Member

Re: Darling buddies from May - moving on

p.s. bloody hell, ignore my spelling - only had one glass of wine too!!

lisaf
Member

Re: Darling buddies from May - moving on

Bevy you should get it looked at, hopefully its just dry stuff from rads, dot know as I didnt have nibble to blast.

Nicky and Lorraine , you are an inspiration in how you deal with things, I tend to get in a downer and worry about the slightest thing and then that in itself builds which gives me more symptons so I am sooo proud of you all. YOu are inspiring me to just try and monitor side effects and not dwell and try and life my life for today, I cant change what is going to happen and I shouldnt waste my time wallowing so Im having a wine and going to have an early night as my day off today consisted of picking my niece up, taking her to hospital for lunch with my dad on his break (yes, believe it or not, I visit of own free will, every1 knows me though think my dad must be boring them!!!) then played games and baked cakes!!

Bevy, the weight thing is hard, piled 2.5 stone on and if didnt have a hangover for most of this week I wouldnt have lost sooo much!! Well, also inmy drunken haze I banged my bad arm, its bruised and swelled more so think a sleeve is approaching.

Lily, sorry about your BiL sounds painful - hope work is going okay too but take it easy to.

Well, I have mamogram on Monday, lymphodema clinic week after, surgeon week after and then breast mri at 9am 3hrs away from where I live - good thing is might brave a holiday, chance to have a break with a friend and her hubby and another couple, might feel like a wally on tod but I can chill so will see

Angie, hope today wet okay and its not to hard, hope you still fighting and the plan to wed would be sooo nice for you - hope there's a glimmer and Im sure you will research it and hopefully you will defy their stats. Take care you and Tommy and speak soon. xxx

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Re: Darling buddies from May - moving on

bevvy 52,

you would be wise to get things checked out, it may be something to do with treatment, but at least you would be reasured. sounds like you may need something for it anyway.

hope you get it sorted soon., take care x

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Re: Darling buddies from May - moving on

Kirsty it was lovely to hear you being so positive about being back at work and resuming normal life good luck and enjoy!

Lily so sorry to hear about your poor brother in law I just couldn't believe it when you said the nurse needed to make a blue peter style sling what is happening to this country? hope he is feeling better poor guy.

Lisa hope you are feeling in better spirits and well done on the weight loss I wish I could do that I am trying but I just feel as if I have become a different person physically.

Nicky hope you are enjoying your week of no treatment

Angie hope you are feeling the support that is being sent your way we are all thinking of you and routing for you big time! take care but do what you want to and what feels right for you and Tommy.

I have had a bit of worry this morning as my right nipple as developed a yellowish crust over it? has anyone else had this happen? This is my surgery side. I wondered whether it was due to be dried out with the radiotherapy. There is no discomfort physically only mentally.

love to you all Bev x

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Re: Darling buddies from May - moving on

hi everyone

especially angie, have you been offered a macmillan nurse to talk to
about your feelings etc. i know some people feel negative about seeing them but they are helpful. and have spoke to lots of people going through our situation, hopefully some with same diagnose as you who have done well. but you must be so scared, my thoughts are with you.

hope everyone else is enjoying snow, and wrapping up warm. x

nicky08
Community Champion

Re: Darling buddies from May - moving on

Hi everyone and especially big hugs to Angie
As we've all said you are amazing being able to let us know what's going on - I don't know if I could have done it straight after my dx. OH and I felt as if we'd been hit by a sledgehammer when I had my 2ndary dx. We were in shock as we left the hospital and didn't let go until we got home. We had a good (bad?) cry and pulled ourselves together (a bit) and went for a walk. The hardest thing was telling my 2 girls and then my family. I couldn't face telling everyone face to face so used email to spread the news and get people to back off. I didn't know what would happen until I saw my onc a week or so later and that did re assure me with my treatment plan etc. I did a lot of looking things up on the internet and kept away from scary sites (yep, ostrich syndrome). This site was so invaluable and there are positive stories on here from ladies with brain mets - just go and search in Secondaries. Obviously there are bad stories as well but that's the nature of this site. The one thing I learnt is don't give in, be positive andlive for the moment - well, that's 3 things:-) I don't think of the future as such but set myself goals like my YD's 18th next month, Mum and Dad's 50th anniversary just after etc. I get scared at times and still cry at certain thoughts but I shove them to the back of my head. At the moment I feel well, apart from aches and pains so tend not to dwell on it but that's not so easy when you're having treatment I know. From what I've read on here WBR is very effectiveand the important thing is it breaks down the body/head chemo block if that's what it's called to allow chemo to work if you need it. Otherwise chemo doesn't reach the brain. I am thinking of you all the time and send you love, hugs and positive thoughts. Look after yourself and I hope Tommy is looking after himself as well as you.
To everyone else, I know I still don't have a picture! I will try at the weekend. By the way Lorraine it's a moggy not a doggy! May look at dresses later but should sort my 'normal' picture out 1st!
Sorry to hear about your BIL, Lily, bit of a shock for both of you I'd imagine - but, hey, you got to go to hospital again - lucky you!
Lisa, Bev, Julia and anyone else on here take care, hope the snow is going and letting you get on with the mundane things in life that seem to stop.
Will check again after I've been to work and see what I've missed out on this post as I've rushed through all the new ones.
Nicky xx

lisaf
Member

Re: Darling buddies from May - moving on

Enjoy your shopping I might have a look tomorrow, specially seen as I never ever wear dresses as dont suit them and Im not girly but with money or size no object, could go mad, but shoes ohhhh yes!!! Im sure Angie knows that we are all thinking of her.

Hope everyone else bearing up
x

Lily200
Member

Re: Darling buddies from May - moving on

Hi to everyone reading (all always welcome on here|
Angie bless you for letting us know, even though we were all secretly holding out for something outrageously amazing like 'no problem we can sort this for you.'I think you should get a second opinion though if you feel up to it, maybe at Christies? I am not sure where is best in your area, it would be the Marsden down here.

How do you feel about the wedding, it would be a lovely thing to have ahead of you to think about and distract you with something nice and you already have your fab dress. You might need some time to think about it and you have not mentioned whether you are feeling poorly or ok at the moment, so hope this was not the wrong thing to say. If feeling ok you could be 'Mrs Angie' quite soon and have such a special day. I think Lorraine is already picking her outfit.I am constantly thinking of you, Tommy, your Mum and your Nanna too. I did read a bit and I know there are some slightly better bits in what the onc is saying to you to hang on to, even though overall it is such a terrible, almost unbelievable shock. I remember poor Paula and the speed of her progression still. I still believe that there are many people who defy odds all the time, every day and even when faced with 99% there is still one person smiling through, and we are all hoping that one will be you. I think you are probably having rads every day for about 5 days so hope they are not too bad and do their thing blasting that rotten thing to smitherines. Don't forget you can sometimes get on US trials too, so worth looking at. Can I help in any way? Big hugs sweet x

I have had a really busy day, at work poodling about when the office phone rang and it was 'Nurse Brown from accident & emergency.' Sent my heart jumping right through my mouth wondering who now. My brother in law had slipped on ice, broken his wrist, passed out in the street and then really snapped his arm and nosedived into a bus shelter. Poor old thing had a swan's neck shaped fracture and it had cut off nerves and blood supply so they had a very narrow window to save his hand as no feeling in it. He is looking rather battered and in hospital awaiting a slot in surgery for plates and screws and the nerve to be released, as they are over run with broken limbs this week. They had no slings to hold his arm up so I watched in disbelief as the nurse cut up a pillowcase and used sticky plaster to make one and then hung it over a hook and stand. Sat with him for a while, then had to rescue his car, buy him some more PJs and dressing gown, drive car back to his, get clothes, etc then back to hospital tonight.He was not exactly at ease with a man vomiting in the bed next to him, another patient letting their toddler scream all the time and his arm tied up in a pillowcase.

Tank top terror got me on the neck in a 2 arm attack again when i got home, what a c..p day.

Angie still lots of great moments out there, go get them
Love
Lily x

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Re: Darling buddies from May - moving on

hi everyone

its me again, i do hope we have this party. ive been having a look at some designer dresses, so strange when moneys no object, theyres so many reduced. i am determined not to be cheap, i cant have you all being more flash than me.

i know im going mad but just humour me.

its great! ive never been able to look at dresses for a thousand quid before, and not even bother if they fit or not.

goodnight everyone back to my shopping.x

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Re: Darling buddies from May - moving on

hi everyone,

i know its not the best time at the moment with angies news. but i was thinking, seeing as its about a year from treatment for most of us, what about having an online party. i think it would be good fun.
we now have pic facility so we could pick a dress online and put it in the pic space and have a good chat about our choices. we could even invite some girls of the other threads.

with having the pic facility we could use our imagination and have some fun. you could even bring along a celebrity, anything goes.
i think it would have to be arranged for a couple of weeks, with everyone feeling so low. let me know how you feel. and dont for one minute think im not feeling angies pain, cos shes never far from my mind. goodnight god bless. x going dress hunting. just think price is no obstacle, i may even get some jimmy shoes.

lisaf
Member

Re: Darling buddies from May - moving on

Everyone is welcome on this thread and angie I hope it shows how much people do care, I knnow it must be hard for you to write but I soooo admire you, you are soo brave, strong and I know you will try everything possible to extend your prognosis. You have a very strong relationship with Tommy and Im sure you will try to enjoy the time you have together.

Youve offered sooo much support to people on herethat everyone will be here for you to blast off, cry, anything.

Hope the rads werent too bad and that they make some improvements - are you in pain? You know Dr D gives it straight but also hope he had some optimism about trails etc. Is there any chance of operating or anything , sorry could be talking crap but dont know any of your symptoms or how on hells earth this could have happened to you so soon after chemo.

So sorry, you are in my thoughts and prayers constantly - get some rest and sorry about the hair xxx

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Re: Darling buddies from May - moving on

Hi Angie

I've not posted on this thread before but I was diagnosed about 2 months after you and have read your posts- you always seemed a lighthearted and positive bunch on here but I didn't want to intrude on your thread.

Brain mets seems to be the one that everyone dreads, but after a scare I had a few months ago (which lasted a while) I started going to the BCmets website and there's loads of 'feel-good' stories on there. It depends exactly the mets are etc. but there's loads of people who have had miraculous results from WBR etc. Please look!

Please remember that loads of people are thinking about you and wishing you all the luck in the world even if you don't know us.

Mal

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Re: Darling buddies from May - moving on

hi angie, it was so good to see your post, it must be really hard for you to think straight at the moment, never mind think of others as well, but that shows what a kind considerate person you are.
keep the hope in your heart and enjoy the time you spend with tommy, doing things you enjoy.

be kind to yourself, and do anything that makes things easier for you. you have been in my thoughts each day, and i hope the treatment goes well and doesnt make you feel too rough.

lily 2000

i have an appointment with onc on the 18th feb, to discuss results from scan, im thinking hopefully its good news because he doesnt seem in a rush. hope my positive thinking doesnt get me in a mess again, because i felt like that before diagnoses and then i had a shock. but im not worrying anyway. you need to get some designer wellies for all this snow we are having. the other year i went sledging with children but even thats out now, incase i tumble and break anything. aghhhh!

nicky 08

hi there, i didnt know you had a doggy it will be nice to see him. i keep having trouble with my pics again, i never know what people are seeing because its always different on my profile.

everyone take care x

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Re: Darling buddies from May - moving on

Dear Angie what a brave young woman you are to come on here and let us all know how things are going. We have all had you constantly in our thoughts and in our hearts and will continue to do so. Can't say anymore as words are just too inadequate but my prayers are with you tonight and will be every night.

love Bev xx

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Re: Darling buddies from May - moving on

Hiya Ladies.

Thank you so much for your kind words, they really do help. Tommy and I are just reeling and in shopck still really. We saw the head onc today and I've had a blast of rads to the whole brain and am having another one tomorrow which they're pretty optimistic about. The hardest thing was giving my mum the prognosis bascially an average life span of a year now. Needless to say I'm asking about trials, using homeopathy and plain bein hopeful. I'm just not ready to give up yet and neither is Tommy.

I'll probably loose my hair again as a side effect of the whole brain radiotherapy though.

So it's really not good news but it's not just weeks either and how ever long Tommy and I have got together we're going to make the most of it.

This does bring back close memories of Zotam's lisa too, and I found a post from her back in November, it seems that the chemo's had worked so I'm holding onto every ray of hope there is.... In between bouts of shock.

Nicky, how do you just get over the shock when you're told about the secondaries, it feels like it'll never pass right now.

Thanks so much for your love everyone.

I'm going to try and relax for a bit now.

Angie

nicky08
Community Champion

Re: Darling buddies from May - moving on

Hi Lisa
I seem to get them every now and then but also worse in the morning. I think we are all really stressed still from all of our treatments and what we've been through. I think (hope) mine is part stress - which I hope to get sorted with my complementary therapy when the snow clears so I can get there - and part medication. The threads on Arimidex do seem to point out all the aches and pains so I don't think what I get are unusual. As you've said though we're all so worried about Angie and that can't help. Look after yourself.
Thinking of you, Angie
Nicky xx

lisaf
Member

Re: Darling buddies from May - moving on

Take it no-one heard from Angie?

trisha1
Member

Re: Darling buddies from May - moving on

I hope you all don't mind me butting into your thread but I've just come across Angie's devastating news. Although we haven't met if my memory serves me I tnink we both had the same breast surgeon at Carlisle. I feel so gutted for her as she had just finished treatment and was getting back on her feet.
Angie, I really hope Carlisle can sort you out. With no disrespect to Carlisle I chose, for personal reasons, to have my treatment at Christies in Manchester which is a centre of excellence in the North.
If you want to pm me I can give you more information.

My thoughts are with you today
Trishxxx

lisaf
Member

Re: Darling buddies from May - moving on

Hi Nicky, glad you are doing well. Are you still getting headaches, I seem to get them first thing and stay most of day so starting on the paracetomal to see if it helps things along, could be just stress and worry as well as pills and been really upset since Angie's very sudden news.

Good luck Angie xx

nicky08
Community Champion

Re: Darling buddies from May - moving on

Hi everyone
Good to hear from you Kirsty, lovely photo. Glad to hear you're back working and getting on with things as well, keep in touch when you can.
Love all the dog photos everyone is putting on, I think mine will have to be my moggie, just need to get a decent one of her though.
Lily - no treatments this week thank goodness. I have had a GP's appt though so not missing out on the medical experience too much! Just checking BP, organising a blood test for cholersterol - yes, that's up atm, and stockpiling any tablets I need before my pre-paid runs out next week and before we get the new exemption certificate! Anyway got my money's worth out of the appt! I think he was glad to see me as it was Monday and we were pretty much snowed in round here but I'm able to walk to the surgery so a bit of exercise as well. I have treatment the Monday after next and usually it's straighforward but still means I have a morning taken away. Hope you're coping with the weather. Also, did you get the message about the thread you'd been looking for from me? I'm not sure if it 'worked'.
Lisa - definitely getting aches and pains and trying not to panic so I know where you're at. Just about everything I had done or taken can cause them so I'm keeping an eye on things and hope to get some scans in the next month or so to check me out. Otherwise feeling good and have kept the weight off since my 'ablation diet' in December. You're sounding really good so I hope everything is going well for you.
Lorraine - have you heard yet, as Lily says, about your scans? Hope the waiting hasn't been too hard and the results are good.
Bev and Julia - hope you are OK.
And dear Angie, I will be thinking about you and Tommy all day. I hope you get to see the onc and the weather doesn't stop things. You must be desperate to know what is going to be planned for you and to get on with things. Will have everything crossed for you and when you're ready please let us know how it went.
Love and hugs to all
Nicky xx

lisaf
Member

Re: Darling buddies from May - moving on

Hi Kirsty, lovely photo and nice to hear from you, we sound at similar stages, Im back full time with the short spiky look too, bit messy at times albeit! So glad you are feeling better, Ive lots of niggles and scary moments especially hearing Angie's news.

Hope everyone else is okay with the niggles, tiredness and treatments, Ive been feeling ropey and off my food but that's after effects of a very heaving drinking weekend which I dont think is good for me, soo trying tobe more healthy and scared the BRCA1 gene could be doing bad things to me. Lost 13lb though x

Sending the best vibes possible for you Angie and understand you might not be even up to reading posts but if you are we are all routing for good news at Carlisle tomorrow and hopefully treatment as soon as possible xxxxx

Lily200
Member

Re: Darling buddies from May - moving on

Hi,
I agree, I am thinking of Angie too all the time, it has shaken me right up, so Angie I cannot imagine how you are feeling. Hopefully having lots of big hugs from your nearest and dearest. I will be thinking about you and your appointment tomorrow and hope you will feel up to posting to let us know how you get on. We understand this is difficult for you, if you can't. I think I would get a second opinion just for reassurance. Sending all the luck in the world your way and hoping for some positive action from the onc. Good luck Angie.
Kirsty it was good to hear you are at work now and is that you in the picture,such a lovely photo? Julia love the woof, perhaps I will put mine on too. Nicky are you coming up to another treatment or did I miss it. Sorry if I did and hope they found a vein easily this time. Lorraine I have also forgotten to ask about your results, so sorry. If you have them back, I hope they were ok. Please let us know how you got on. Our road is still thick ice and very slippy and we are at the bottom of a hill, so having to be very careful walking and driving. Take care
Love
Lily x

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Re: Darling buddies from May - moving on

Hi Ladies

It has been a very long time since being on the site. I have just found that it as all changes......WOW!!!! Luckly i have found the thread which has carried on from the old site.

So hello and (((((((BIG HUGS))))))) A bit late but Happy New Year, unless you are chinese!!!

The reason i was thinking of you guys is because i have been writing a diary about my own experience of BC. I was just going through the diary tonight and tomorrow will be a year to the day that i was diagnosed. In the diary i have also written how much this site as helped me cope and get loads of good advice, with Chemo and Radio. So yet again i would like to give you all a big THANKS 🙂

I am now back at work and feel good to be back behind my desk and feeling i am on the road to recovery. Only working part time at the moment as i still get tired in the afternoon. It was strange going back for the first time and funny when people had to look twice at me. The last time some of them saw me i had long hair, now i am going in with short spiky hair. No wig or hats in sight and feeling proud!!!! 🙂

I won't go on anymore. Hope you are all well and best wishes to those who are still having treatment.

Kirsty xxx

nicky08
Community Champion

Re: Darling buddies from May - moving on

Good luck tomorrow Angie, we'll all be thinking of you and sending positive thoughts.

Looks like Lily and I are lagging behind now in the photo stakes. Will see what I can do.

Take care everyone, all of our support for Angie and each other is still so much needed.

Nicky xx

lisaf
Member

Re: Darling buddies from May - moving on

Nice photo - might have to put my pooch on - bless they were discussed enough when we had the old Hair thread, about pincing their cast offs.

Every thing crossed for some good news for Angie tomorrow x

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Re: Darling buddies from May - moving on

Hi: Hey got a picture on - not the one I wanted but it worked, just got to work out how to change it now. By the way, that is Carrieann, the chemo, etc, hasn't changed me that much!!!

I think we are all sitting and waiting to hear how Angie gets on with the onc tomorrow. Please God let it be good news.

We are all with you Angie.

Love and hugs

Julia
XXX

lisaf
Member

Re: Darling buddies from May - moving on

Looks like the right pictures are back!

Angie hope the Onc appointment goes as well as can, I know you must be devestated but I also know you have already done a lot of research on the parp trial and hopefully this could be a good avenue to go down, albeith Im not that up to date on it. Really hope the steriods have at least sorted out any pain but to be honest cant remember if you were in pain or not.

Hope everyone else okay, bit quiet on here but hard to know what to say at mo and dont feel like being jolly as Angies news has hit me hard
x

Lily200
Member

Re: Darling buddies from May - moving on

Hi,
Lorraine there are yellow flowers on the the contact message you sent me.
Angie thinking of you and Tommy. Have you got a list of your questions to take with you, as it is hard to take it all in and remember things on the day. Sure you must have so much you want to ask. A lady in our area got onto a US trial so that is an avenue to think about as they are so far ahead of us. We are all praying the onc will lift your spirits with his plan of action. When do you start rads? Please lean on all of us if it helps in any way.
Hugs all round everyone
Lily x

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Re: Darling buddies from May - moving on

hi lisaf

thanks for your help, but i think there must be a problem, because i had the picture i wanted in the space at the bottom of the page, and it was showing under my name, but wasnt on the posts. i can see balloons at my end, dont know how you can see teddy. aghhhhhhhhhhhh.,
difficulties again. i suppose we should be glad to have any pictures better than previous when you couldnt.

goodnight.x