I am shocked & saddened to hear about Tina & would like to pass on to you & little Dan my thoughts & prayers at this very difficult time.
I am not triple negative, but have been a 'lurker' on this thread for a while, as I think Tina joined the forums at about the same time as me so I have followed her progress as well as commenting on other threads with her. She has always been a fighter as well as offering help & advice to anyone else who needed it & the TN ladies will miss her terribly.
I will light a candle for you tonight Tina - sleep tight Gingerbud.
I am absolutely stunned and shocked and devastated. Was a 'lurker' on this thread and followed everyone, but especially Tina's story. We felt we knew you and little Dan. All my love and prayers go to you, the little one and the rest of your family. I will be lighting candles, real and virtual for you all.
Thank you for letting us know.
So sorry to hear this dreadful news. Tina fought hard with such strength, courage and good humour and never stopped supporting others despite her own difficulties. You must be devastated and we are all shedding tears with you and Dan for her loss.
With the angels now
I am so, so sorry to read this. Tina was an amazing woman who inspired so many of us - primary, secondary, TN, whatever, and her love for you and her little boy shone out of every mention she made of you. I am gutted for all of you that you didn't make it to Euro Disney - I know she'd put every ounce of determination into getting there and was so disappointed for Dan not for herself.
I will keep you all in my prayers at this terribly sad time.
RIP Gingerbud, you were one of the best.
God bless you all.
I am devastated to hear this news.
Sending love & prayers to you Daniel & your families at this very sad time.
Hi everybody, I am Tina's husband Ian we never made it to Disneyland Tina took ill at the airport and went to hospital on thursday. Unfortunately Tina illness worsed and alot of fluid had built up on here heart and sadly she passed away on sunday. We are devastated with her loss and the void she will leave in our lives. I have got our wonderful son Daniel who is three and looks like Tina everyday. He was Tinas world the only thing she ever wanted in life. One of her last wishes was to make sure I post on here to let people know, she had made some really good friends since joining and I thank you for all the support you have given her. If you could let other people know about here passing it would be much appreciated. If anybody wishes to contact me you can on tinas phone.
i will check on here later in the week if anybody wants any further information.
I wish all of you the best of luck for the future and I hope and pray to God you all survive
Jo - Good to hear from you. Had been missing your posts. Great that you got to Centreparcs. Well done with all the activity. Really hope the next round goes better for you xxx
Sandra - Nice to hear from you too. Hope you are ok and keeping as well as poss. xxx
Evening all to everyone. Hope you are feeling ok today.
Had a rubbish day today. There's always a payoff when I've had a couple of days feeling nearly good. House is a tip and can't face the kitchen! Tomorrow must be better.
Love to all
Jo hope15. Hi good to hear from you, hope the mouth ulcers are all cleared up, and your hands and feet are much better. Great you managed to cycle and swim at centre parcs , you must have felt stronger, rest up then when you get home. Hope the next lot of cap will be easier for you.x
Tara glad your able to get out and about, and feeling better in yourself.x
Sadie hope your resting up and feeling bit better . Speedy recovery . X
Tina hope your back at home, and feeling bit better too, rest up, and get well soon. X
Hi to everyone else, and hope your all doing ok.
Hugs to all, Sandra xxx
I have posted a few times but keep not posting - think when I use iPhone.
I hope you are at home from hospital and am so sorry you missed eurodisney. I was thinking of you as you were going hoping you would all have a great time. So lucky I'd didn't happen on plane or in France though as you want to be near hospital.
Am sorry you too have pneumonia sadie and hope you get well soon.
We did get to center parcs for a break and I really enjoyed time with the family but hard work with 4 kids.
I managed to cycle and even took my youngest nearly 2 swimming, which I've only ever managed once before.
I had to cancel last break and they were v understanding as policy didn't cover me and they let me move the trip.
I thought I'd be cancelling this one too with all the side effects of cap and the ulcerated mouth/throat and bad feet.
I had a chest infection for 5 weeks and 3 courses antibiotics but was never x rated.
I've had 3 weeks off cap instead of 2 to heal ulcers and chest so hoping when start tmrw on lower dose will be okay.
So pleased you are doing well Sandra and hope you can start that trial sadie.
Glad you are getting out more Tara. Hello to everyone else
Love Jo x
I hope the sun is shining for you today. Thoughts for Sadie and Tina with your chest infections/pnuemonia. Please hurry up and get better soon. Thank goodness for Antibiotics...
Wasn't sure whether to tell my recent story but will do - as it is kind of relevant to the acceptance/coping bit. Since I lost my voice I have avoided going to any of the open mic nights round here because it is so hard to explain to people why I am not getting up and singing as usual. Anyway last night my other half had a gig with the band (that I used to be in too) in a local pub so I went along, making sure there were some friends there to "defend me" from unwanted questions. The hardest thing is that my speaking voice is so quiet that I can't even make myself heard to explain, and you can only have "laryngitis" for so long! Anyway I ended up having a good night and both the friends and the other musos were great. For the first time I managed to shed a few tears with a couple of the lads and they were so brilliant in not making a big deal about it, but lots of hugs and kindness. My OH was delighted I had come down and it meant more to him than I had imagined. I even found that being in the audience meant I could give them all some useful feedback after the gig on various things/sound etc.
So I'm feeling relieved that I have come out in the open a bit. I am sure I am more conscious about it than anyone, but still it was a hurdle I had to cross.
Today I'm just taking it easy and spending a bit of time on my own. Solitude is really healing sometimes.
Thanks for listening.
Love to you all
Dearest girlies - just another lurker, but sending heartfelt wishes love and strength to you all - you are remarkable, courageous, enduring, beautiful women and you are in my thoughts and prayers. I attended a reiki share on Thursday and took the liberty of putting the whole forum thread in our healing circle - it just felt the right thing to do -
Love, prayers,blessings and cyber hugs to you all
Another lurker-just lost a really long post so will just say I am TN too and five years post dx. I read his thread always but feel I have no right to join in so just want to cheer you on and say I am hoping and praying for you and with you.
This may or may not be of any use, but I had a quick look on the internet and found http://www.willowfoundation.org.uk
It's like the 'Make a Wish' group but for adults. Maybe it could be something you could do Tina (or anyone I guess).
Yet another Lurker,
So, so , so sorry Tina. It's bad enough having to let a little 'un down without all of the added worries. However, if it had to happen least it happened here.
I read this thread quite often and am constantly amazed at all of your strength and determination.
Oh Sadie! Get well soon and stay out of hospital!
Tara there is another thread re helpful cream for fingers if you have a look if the lipsalve isnt keeping them OK
Love to all, especially Tina
Oh god not you as well sadie what is it with this thread everyone in hos or I'll hope u feel better soon hi Tina how are you now any sign of coming home tc both of u hi to everyone else hope y ok hugs xx
Tina - how are you doing?????
Thx for all your posts nd lovely support!! This disease is so unpredictable! Been in hospital all day. Woke with temp of 39 and felt horrid! I have pneumonia. Back home now with antibiotics nd much better thankfully. Every day another twist and unpredictable turn.
Hugs to all posters nd lurkers (who also seem to be posters this week - its lovely!!)
Sadie Xx Xx
just to send much love and prayers from me and Heather, to Sadie for all success with your trial, and Tina for a quick recovery xxxxxxx we are thinking of you both xxxxxxx Kim
I'm also a non TN lurker coming out of the woodwork today but just wanted to post a couple of wishes.
Sade- so pleased that you had good news about the trial-you must be feeling good today. Fingers crossed that there are no unseen hurdles in the way for you.
Tina - gutted for you that you didn't make Disney but my best wishes to you for a very speedy recovery.
What great news, thrilled to bits for you, it all sounds so promising
love to all
Yet another non TN lurker. Good to hear your news Sadie. Tina- ever since your kind advice to me, I have kept you in my heart. Sending you lots of love for a speedy recovery. G xx
Thanks Lavender for the tip. Funny thing is I tried it the other day when I had nothing else in my handbag and it did seem to work well. So will now revert!
Sadie, good to hear your brilliant news. Will be interested to hear how you get on.
Tina, hugs. Hope you can get the rest you need now. Hospital not always the most restful place but hope you are able to recover from this recent lung problem.
Good night everyone. Tara xx
Tina, I'm gutted for you too, hopefully your stay in hospital will be short, get you well, and back home to oh and little Dan quickly. Get well soon Hugs and prayers xx
Big thanks to all for all the support on here, xx
Sadie, great news, so pleased for you. Exciting times, xx
Hi to all ,
Thinking of you, hugs n prayers,Sandra xxxx
Hi All - the support here is overwhelming! I have tears in my eyes reading this last page. Unbelievable!!!
Tina - all this cr*p going on nd you still find the time nd energy to wish me well. You are a v special lady and Laurie is right - the BEST gift Dan can have is seeing you feeling better AND a hug!!!
Well - ive got one more tiny tiny test to have (that the Drs are confident i will be ok with) and Cancer Research UK have accepted me onto the trial!!!!! Im sooooooooo pleased!! So, two more days in London next week (about a 3 hr drive each way!!) and then i should start the Abiraterone the following week!! Tablets to take twice a day, minimal (but some) side effects, 8 weeks of treatment nd then scans!! Im shaking Im so pleased!! You dont have to be tnbc to access this trial, just have the Androgen Receptor (be 45ish and post menopausal) - so all of you out there if youve never asked, pls ask!! Pm me for more details!!
Hugs to all the posters and lurkers - i wish EVERYONE something positive today and tomorrow and the day after.......
The last word must go to Tina - HUGS XX XX
Sadie Xx Xx
Good for you, Lavender! Go for it!
Love and prayers from me too, Tina. As you know, I'm a long time sort-of contributor on this thread and I think of you and the other wonderful women on it often. So sorry about your trip, hope you can get some relief soon with your chest and get home.
All the best, Sarah xx
Tara for the finger splits my sister in law recommends lipsyl lipsalve and when it is dry, filing the hard edges with an emery board-worth a try so long as you are not lanoline sensitive!
Tina,hun, another one gutted for you here, but what a mercy you were not on the plane. Hugs to you and to Dan and to OH. Hope they work out quickly re emblism/not embolism- seems likely given your story. You have survived it and there s treatment.
Sadie, exciting that you have been found androgen receptor positive, I am too out of date to be sure that your figures are menopauasal, funny to be wishing you menopausal to qualify but if that's what it takes, I do.
And, big breath, reading this has made me suddenly feel, puffy old lady that I am, I must find a BC fund raising walk or whatever to do for all my young friends on this TN thread. Now I have written it I will have to do it!
Love to you all
Hello all you lovely people
Feeling sad for you Tina. So disappointing. It is difficult when your determination is so strong, but doesn't work out. I hope you feel all the support from here. Lots of thoughts coming your way, and prayers for a bit of a break in the clouds for you and OH and Dan soon.
Lovely to hear from all you lurkers. We do appreciate the cyber support. Whatever did people do before the internet? Must have been very isolating for people like us.
Sadie - Thinking of you today. Hope the tests and so on aren't too tiring and that all goes smoothly.
Laura - Sorry you are feeling a bit rubbish, but round six is good. Well done.
Jo - How are you? Haven't heard for a while? Hope you are coping with the s/e's. Did you start the next round or are they waiting for a while yet?
Lulu - Are things picking up yet for you? It does take a while to recover after all that radio.
Zile, Sandra, Wellmeant and anyone I have left out - hope you are as ok as can be.
I'm at last free of visitors. Nice to have some space. I don't mind the helpful ones, but it doesn't always work that way! Having first glimmer of side effect from the Cap. My fingers are getting split so have an excuse not to wash up! But really I do feel very lucky so far as I don't feel too bad at all.
I hope you all have a restful weekend and have some feelgood stuff going on.
Love and hugs to all of you
Hi, Another lurker here. Sorry that so many of you are having a tough time and to Tina, in particular, that the Disney trip didn't come off. Hope that you get the pneumonia sorted and that you have many exciting trips ahead of you.
Wishing Sadie luck with the trial and hope that everyone else is having a positive response to treatment.
Sending love and prayers to you all xx
I am another lurker on this thread which I always follow, I know a few of you from lung mets thread.
I am so sorry Tina that you didn't make it, do hope they get you comfortable soon and out of that awful pain and you can get home soon.
Once again good luck today Sadie.
Much love to all
Hi, I've never posted on this thread but I do follow this thread. Tina I'm so sorry you didn't get to Disneyland, you are in my prayers everynight, I think you are a remarkable woman and I hope your current condition gets better soon. Sending you a massive cyber hug xx. Good luck also to Sadie, hope today goes in your favour, Karen xxx
Tina, so sorry you didn't get, but I am so pleased it didn't happen while you were away. Take care of yourself, sending you the very best wishes.
Yet another lurker - I'm not TN, I'm not secondary, but have followed this thread for a little while.
Tina I am gutted for you. I really hope they sort this penumonia and that someone will get you all to Disney soon - there must be some fund or foundation that can help surely?
Sadie hope all goes well for you today.
Hugs 'n' prayers to all girls on this thread
Another lurker wishing good luck to Sadie and big commiserations to Tina.
Awful to say but definitely for the best that you didn't get on the plane Tina. Although he doesn't know it, Dan's best gift will be to see his mum looking and feeling better...
A lurker here 😉
Just to say I'm gutted for you, Tina. Both for the pneumonia (obviously) and also not getting to Disney. Hope you improve quickly and get out of hospital soon. All I can add is that thank goodness it didn't happen on the plane.
Hi all sadie gd luck for today, Tina so sorry you couldn't go you have had it bad feel for you big time I hope they can sort out your breathing and get you a little comfy thank god you wernt on that plane sometimes these things happen for a reason I know it's upsetting for u all esp dan but a you have to come first if you know what I mean and you hopefully can have a hol later when your better kp us up to date gd luck with ct big hug xx. I'm a little unwell this week think got cold coming stuffy nose chesty cough my week off 2 typical hope it passes sn due to start cycle 6 weds tc all Laura xx
Just a quickie ladies to wish sadie good Lucy for today 🙂 and to let u know that sadly, we never made it to Disney. I was really s.o.b. yesterday morn but insisted we still went (mum + dad worried sick, hubby v.apprehensive too as they could see I wasn't fit). Anyway, got the airport + I was sat with luggage waiting for him to park up + I suddenly was in the worst pain ever- like i'd been stabbed in lower right lung. Was close to collapse, couldn't breathe+ was pretty scared. Knew then I was going nowhere except a+e. Dh wanted to call an ambulance but I didn't want to be in a Manchester hotel so I told him to get the car, get the luggage + put his foot down to get us back to Liverpool. I'm very lucky it happened when it did as if it'd been an hour later, I'd have been in the air + apparently, the plane wudv had to divert + land (law if passenger has acute chest pain).
Dan cried all the way home it was heartbreaking. I couldn't even walk to/ from car the agony + lack of breath was terrifying especially with it coming on so sudden.
So I'm in hospital, not enjoying brekky with mickey + donald 😞 But I tried my best + wanted to go by hook or by crook but someone upstairs wanted to stop me getting on the plane. I have pneumonia, and it's worsened since Monday when I was xrayed despite being on anti b's. I'm also awaiting a ct to confirm a pulmonary embolism buteveral docs are sure that's the source of the sudden pain + worsening breathing. Heart rate is virtually double which is a classic symptom.
Think I might be in for a few days but as long as I'm feeling a little better by the end of it, that's ok. Know where I'd rather be though. We had no cancellation cover either 😞
will keep u posted, prayers most welcome 🙂
Love to everyone xxxx
Quick post. Thinking of you all and reading, but have visitors again so hard to post properly. Will do soon. Love to you all xx
Good luck to Sadie for Friday - love from me too!!! I really hope you manage to get on the trial and those few little months to 45 are not an issue.
Cuddles to Tina and little Dan and hubby for your trip. Hope you enjoy it and sorry about your breathlessness - hope you can get some improvement and relief soon.
Love too to Laura, Tara, Sandra, Hope and Lulu. Welcome to Wellmeant and your wife. Hi to Zile.
Love to all, Sarah xxx
Hi all Tina hope u have a lovely time you get a wheelchair u can have extra rest then hope they get u sorted sn sadie gd luck for fri hope all goes ok I'm off to hos tues for cycle 7 still having belly cramps and a sit on loo y day for a while but only lasted a hr and settled been out about oh birthday sun so need to get bits sorted been to dentist today gtg have few fillings and prob need one out chemo ruining my teeth hope all doing ok big hugs Laura
I really am so touched by the support here. Everyone has their own issues but people are still logging on and wishing me well for Friday. I really am very moved by it - thank you!!
Tina - If you have to use a wheel chair in Disney then may be you will get extra cuddles from Dan sitting on your knee! I hope the packing is going ok and have a GREAT TIME!!
Hi to Sandra, Marina nd Wellmeant - thx for your posts!
Laura - Hope you are doing ok still on the Cap?
LuLu - great news about Avastin. It worked wonders for me! Maybe it will go National soon!
Zile - I am so glad you got to see your family. Well done getting there and back!! I really hope THIS treatment does work for you. Just cos the others have not - it does not mean this one will not!! Hugs (((((Xx)))))
Jo, Lavender, Tara, Sarah - HELLO - hope you are all ok??
Ive got my FSH and Oestrogen levels back. FSH is 57 and Oestrogen Less than 20, so I think that means I am POST menopausal - which I need to be for the trial. If anyone knows more about the levels, maybe they could let me know - ive done some internet research but I dont trust it 100%! Anyway ive got lots of tests on friday at the Marsden - EEG, bloods and other stuff that I cant remember. I still think the big hurdle is that im 3 1/2 months too young!! I will be devistated if they say no because of this!! Oromorph now needed for my back - but it is doing the trick. 10 days till I can see the surgeon!
Hugs to all. Had an amazing hail storm today. It looked like it had snowed. Unfortunatley I was coming out of the hospital to the car park and got pelted!!!
Hugs and smiles,
Sadie Xx Xx
pretty quiet on here lately, hope u all ok. I'm still struggling bg time following the new bone drugs last week. Had a dreadful weekend, high fever, temp over 38 fri, sat + sun + felt at deaths door 😞 Saw my gp mon morn + she took bloods + sent me for xray as I was so s.o.b. Bloods seem ok apparently + I'm awaiting xray feedback this morn. Feel generally better overall but so breathless. So upsetting that this has happened when were going away tomorrow. Just wish sum1 would give me a break. Think I'll be needing a wheelchair unless there is a vast improvement. Have been on anti b's since Monday so fingers X'd I improve + fast!
Sadie the very best of luck for Friday. Will u ask about the parp trial they had planned please. It was over a year ago that they wrote to me + said the trial was planned for brca neg patients, which would be a great opportunity 4us- but I've heard nothing since? The only other places using parps with brca- are in Europe. I do hope you are able to start the trial very soon + keep the xelda in your back pocket for later xx
hi to sandra, jo, tara, lulu, laura, wellmeant, Sarah, lavender + anyone else readin, hope all is as well as can be xx
prob won't post now til I get home Sunday but will try + get online at w/e to check up on u all especially sadie after her appt 🙂
take care xxx
Good luck for Friday, hope yr pain relief gets sorted quickly. Will keep fingers crossed for you. X
Hi to everyone , hope yr doing 'ok, today.
Hugs to all
Sadie I have everything crossed for you, do so hope you get on the trial you deserve it, yoou have been through so much. I am being treated by a Professor at The Marsden, Sutton and the Cancer Research building is just behind, not sure if that is where you are going.
Do hope you get some help and relief with you back pain, will be thinking of you Friday.
Love Marina xxxx
Hi Ladies and wellmeant - a quick update ............ im heading to the research unit at the Marsden on friday for 101 tests - ECG, bloods + lots more. So, i am still a long way from being accepted onto the Abiraterone trial - but hopeful. Two major hurdles are 1) i have to be 45 and im 3 1/2 months young, so Cancer Research Uk are considering making a special case and 2) i have to be post menopausal so had FSH tests today. I was due to start capcitabane today but have delayed it till i know more about the trial. It will mean a lot of traveling but im keen to give it a go. My back is not good tonight so, have oromorph arriving tomorrow and need to see my spinal surgeon sooooooon!!
Hugs to all and everyones family,
Sadie Xx Xx
Hi well meant no u are very welcome its a shame we can't chat to your wife but we are happy for you to join us gals I'm so pleased she is a lot better and pain relief is under control it's a very gd idea to get a sec op we all have on here it don't hurt and other hos do get dif treatment also some of the excellence hos get more treatment and trials offered gd luck kp posting Laura xx. Hi to everyone else hope y all doing ok love to Tara Tina sadie jo lulu anyone I forgot catch up later big hug xx
Just to let you know that we are having a 2nd opinion at 'The Christie' although we are more than happy with our oncologist and current hospital. But we have nothing to lose in gaining another opinion. Our Oncologist is recommending platinum based chemo as our next step. Also with 40mg of Mst every 12 hours, amitriptyline and oramorphe for breakthrough pain, my wife is a lot better.
We are/were professional singers and have been unable to work for a lot of the 15 months since diagnosis. We have a couple of charity concerts coming up one in aid of our Oncology Health Centre and the other for Macmillan and my wife is so looking forward to these so hopefully she will be strong enough and thankfully she is so full of POSITIVE defiance against this terrible decease.
I admire her and all of you so much I can only imagine what you are going through. But I am doing my best.
PS Hope you don't mind me being on here as a solitary bloke! - you know what i mean.