sorry I meant to say Maggie, your day sounded wonderful yesterday, my head is all over the place!!!
Carol xxx
Oh Carol…thats was the last thing you wanted to hear…I hope you can get some peace…you are right life is so precious…Hugs xxxxx
Carol, Big {{{{{{{hugs}}}}}}… awful sad!! It’s horrible hearing news like that… I’m still a bit wobbly myself this week but a lot better than I was… I’m a bit up and down. Trying to look for all the positives in everything…Telling myself off if I get too down!! don’t know quite how else to deal with it??? I’ve heard it said that it can be difficult when treatment is over and a lot of people can get very wobbly, so I think that’s where I’m at, at the mo… I was very good emotionally when dealing with treatment even though I was quite ill…big jibbering wreck now!! so I hope it passes soon…I haven’t ruled out counselling in the near future if it doesn’t lift but in the meantime I’m trying to keep busy!!
Maggie… great to hear you went to Girvan, so pleased that you’re out and about and not holed up in bed!!! Dunure is one of my favorite places, my kids love that wee beach… The weather is awful today though… the kids were so lucky getting a dry night last night.
Ciaran is 16 today…he had a great time in town yesterday!! like a dog with two tails!! met his hero Noel Fielding from mighty Boosh…He’s pushing for an eyebrow tatoo now!!! oh God!! My once conervative strict instincts are now replaced with “oh well, you only live once!”…I might get one!! (NOT!) maybe this is a new chilled me!!!
Well going out for tea tonight so no cooking… then glass of vino and Xfactor… oh and a big chunk of Birthday cake!!HeeHee!!
Hope you are all having a nice weekend!!
Love to you all
Fiona xxxx
I said eyebrow tatoo didn’t I??? well meant piercing!!! chemo brain!!
Hi girls
What a time we are all having!!
I went up north to Tain as it was my uncles funeral on Frid, he died of lung cancer, got another funeral this Thurs but nothing to do with cancer.
I was told that I was going on Lapatinib if they could get the funding but when I went to Onc after op they said I’m not getting Lapatanib as they can only apply for it if I had Secondaries, they are treating me as another Primary.
Oh girls I don’t think I’ve told you all that I am a very rare case for the West Scotland (theyre not sure about rest of country). Apparently they have never seen a case like mine at all, they are having discussions about me at Beaston all the time, don’t think they know what to do with me.
I am getting Rads and chemo together starting 30th Nov, chemo for 2 weeks which is Capcitabine tabs along with Rads for 4 weeks.
I went up to get Herceptin this morn but they couln’t give it to me as the lines of communication failed and they forgot I would need have a hickman line put in, now scheduled for Thurs afternoon!!
I just feel like this is an ongoing saga, everytime I go up to hospital it’s always something nothing seems to go smoothly any more.
I am so sorry Fee and Carol to hear of your news, that’s all I seems to be hearing/thinking about at the moment. I just wish to god they could find a cure, as I am typing this tears are running down my face its all just not fair!!!
I really would love a good rant but I don’t think my fingers are upto all the typing I’d need to do.
Signing off now
Oh and I signed petition and sent it to friends
Hugs Sharon xxxx
Sharon, nice to hear from you again, good that you have a treatment plan in place.
take care and im sending you a big hug
I cant face going to my neighbours funeral so I have offerred to watch the youngest as she is only 2!!
love
Carol x
Hi Girls
Where do I start, what a time we are all having …
Carol – I’m so sorry to hear about your friend, its just so awful to hear news like this, especially when there are wee ones left without a mum. That thought of anything happening to me when the kids are so young terrifies me – as you just want to be there to protect them. I’m sure your friends family and husband will be really grateful that you’re looking after the 2yr old - thats a lovely thing to offer to do.
Sharon – I’m sending you a big hug, it really isn’t fair that you have to go through all this again. You must have been really frustrated turning up for your heceptin today and not being able to have it. I’m glad you now have a treatment plan in place so you know what’s happening. What time are you at the Beatson on Thursday? I’m really sorry to hear about your uncle.
Fiona – I’m sending you a huge hug too. I know what you mean about the worry of all your treatment being over, I know I’m starting to get a bit worried about things too. I think whilst we’re having chemo and rads we have this ‘safety net’ reassuring us that everything is being done to fight the cancer, but when all the treatment is over that safety net is whipped away and we are left to worry about what could happen. Apparently in my area you only get follow up mammograms every 2 years, which I don’t understand as my sister who is being monitored because of me has been told she’ll get a mammogram annually as a precaution; she lives in Wales. Happy Birthday to Ciaran – I hope you had a big glass of wine to celebrate.
Maggie – I’m glad you managed to get out over the weekend and had a good day. Take it easy.
Annie – How did your rads planning session go today. I was looking out for you (not that we’ve met yet) outside the planning room as I walked past to the rads treatment room – I was wearing a blue flowery top and smiling at everyone in case it was you!!. What time are your appointments scheduled for? How are you coping now?
Sheila – How are you feeling now? Are you going to be able to make it out this week for a belated birthday celebration?
I’m now half way through my rads, 15 down 15 to go. Driving isn’t too bad although I’m really tired on the way home. The se’s from tamoxifan haven’t been too bad either - so far, I get the occasional ‘hot flush’ (well, thats what I think they are) but nothing else – so fingers crossed it’ll stay like that.
Pauline, Yvonne and everyone else, I hope you’re all keeping OK.
Lots of hugs to everyone tonight I think we all need them!!!
Helenxxx
Evening All,
Just a quickie!! getting to the letters round the wrong way stage with tiredness… will be heading to bed shortly…
Helen, can’t believe you’re half way!! seems like it’s flying in, not for you maybe… but I found it really quick with me. I see you’re into keeping fish now!!! very addictive!! next you’ll be having a farm and then a cafe… you wait and see!!! all the peeps on facebook will know what I’m on about, everybody’s into it!!
Carol, how you feeling today? I don’t blame you for not being able to go to the funeral…I think all our emotions are all over the place at the moment…it’s going to be a while before we are on an even keel…
Sharon, BIG hug Mrs!! you are having a really tough week this week but you just come on here and rant all you want…do it in stages if you want!!! don’t be hurting the poor fingers!! we are all here for you, don’t let things build up…I know sometimes we spend most of the day keeping a lid on things and trying to act normally, but coming on here and letting it all out really helps… I can do wobbly big style now!! everybody seems to do it at the start, but no!! I had to be different…
Annie,Sheila,Maggie,Yvonne and Pauline hope you are all doing fine.
Hugs
Fiona xxx
P.S Any ideas for a Xmas lunch? where, when ect?
carol can completely understand your reasons for not going to the funeral and im sure it was really appreciated by the family for you to look after the little one. sending big fluffy cyberhugs.
helen the SIGN guidelines suggest follow-up mammo should be once or twice a year for 5 years following DX… most unit prob wont go for twice a year but i think you can clearly argue for annual mammo as sign guidelines are evidence based clinical guidelines for the nhs in scolatnd.
sign.ac.uk/pdf/sign84.pdf think its on pdf page 31 doc page 29 section 7.1.1
its still current although it was published in 2005, however they are considering updating it but this hasnt happen yet so this is the standards your unit should be using.
fee i know totally how you feel in that post treatment limbo-land when everybody expects you to be back to normal because physically you have recovered but the psychological worries do take much longer to resolve.
happy farming & baking & fish tank cleaning etc lol
hi to maggie, sheila, pauline and all
love lulu x
Hi girls, thanks for all your support, it is appreciated.
I am booked to go on the lgfb course at Maggies on 30th November, hopefully it does what it says!!!
take care everyone
love and hugs
Carol xxxx
HI Carol
The lgfb course is great, I went on it with Fiona at the start of my treatment.
Take Care
Helen
Another Saga for me today, went to get flu jag, they couldn’t give it to me as they didn’t know where else would take!! Apparently the needle was only 1cm long, they will have to get longer needle ordered to be able to give it in leg or bum. Honeslty you’d think I was the only person to have a double Mastectomy
Take care girls
P.S Carol, you’ll love LGFG, makeup you get is great to
Hi Sharon,
Can’t believe they didn’t have another needle to give you the injection… honest to God!! I had to have the anti sickness given with the IM needle in my bum!! oooch! Are you allowed to have flu jag when on treatment? I need to run it past my Onc but my BC nurse has said in the past that he doesn’t like his patients to have it whilst on any kind of treatment…
I was in the wig shop on Monday… had a good time. Think it’s going to be an interesting job, fingers crossed…
Big hugs
Fiona xxx
i had my flu jag last friday… was a bit of a debate as to which side to do it but i requested my left side as im right handed despite it being the most recently operated on… but no evidence of lymphoedema so just went for it.
i asked onc team when was best to have it and they said was the day after chemo as they knew you bloods were good enough at that time… otherwise chemo would be postponed.
iv had no real problem with it except and achy arm where it went in but thats a really common SE and its starting to feel a bit easier now.
iv never had flu jab before but did get flu last Xmas… for the first time ever so didnt wanna chance it this year.
Lx
Hi girls, we are all very quiet this week, hope you are all ok, I would love to meet up with you for a christmas lunch, that would be great.
Ive started to pack, well seen im no working, we go next Sunday, looking forward to better weather!!!
hope you all have a fantastic weekend
take care
love and hugs
Carol xxx
Hi all, sorry to hear of the tragedies that have happened and all the problems you all have being having. It’s terrible when this happens but we have to remember there is light at the end of the tunnel it’s just no one comes and tells us how successful it has been for them, nothing to buck us up, so we need to buck each other up.
I can’t come up with anything poignant at 6 in the morning after chemo.
So this is the best I can do because all the other jokes I have would be barred on the site because some jokes need the bad words to make them funny.
A plane is quickly losing altitude and all the passengers know its going to crash and start saying their goodbyes
A woman stands up, rips off her blouse and shouts “Someone make me feel like a woman again for one last time”
A Scotsman stands up, rips off his shirt and says “Here hen, iron this”!
Been in Birmingham for 6 days chilled out, last chemo next
friday morning anyone at the Beatson then?
Start radiotherapy on 7 dec
Pauline haven’t seen any posts on how you are doing?
Yvonne x
Hi There,
Ha Ha Ha Yvonne!!! That’s a good one! Had a good old chuckle…good to hear from you again and I’m glad you had a nice chilled out break away…can’t believe you’ve got last chemo coming up… well done you!! You’ll have to get on facebook…we do a bit of chatting on there also…
Hope Everyone is having a good weekend? X Factor here again!! If those numpties make it through again I’ll have a fit!!!
On a more shitty note!.. Looks like I’m not getting Herceptin for a while, Will know more on Tuesday but my heart ejection fraction is way down again so It’ll be a break and possibly some heart medication. well at least I might be able to get flu and swine flu jags now and dentist wants to replace a filling so nows the time to get it done…
well running eldest to excape to cinema…have a nice weekend everyone.
Big Hugs
Fiona xxxx
Helen… I’m in Area 2 on Tuesday… what time are you there
Hi Everyone…
Hope everyone is doing ok tonight.Just chilling out with a nice bottle of red.Started work last week and doing two days at my new job…head and neck outpatients this week.Phased return is not quite going to plan but what the hell will get on with it.
Thinking of you all going through your various treatments.
Big hugs and stay strong girls.
Lotsa Luv
P
XXOXOXOXO
Hello my lovlies!!
Yvonnne and Pauline, so very good to hear from you again. You both are as bouncy and feisty as ever, I see, thank god! How is work going Pauline, you seemed to have gone back awfy quick. I still can’t walk the hoover over the carpet, so returning to a normal life seems such a long way away.
So much pain on the thread, news of cancer deaths cut you to the bone, especially when the victims are young women with children. It’s the unfairest thing. And, of course, it throws our condition into the sharpest focus too. Cancer is a scary thing to live with.
Sharon, pet, I hope you are feeling better, you have had TOO TOO much on your plate for anyone to face, and the medical screw ups must make you so bloody frustrated. I am beside myself with fury that you are denied a potential life saving drug because of NICE criteria. Well we get Herceptrin because of a woman’s brave battle, so we will have to get our thinking caps out to see how we can highlight this. Apart from that, how are you feeling?
Fee, what are they going to do about the herceptrin/heart situation? From what I been told, they will continue the Herceptrin once they get the heart under control. Jeez, we don’t need ANY of this. I am getting my first echo on Monday (had to be postponed because of rads planning) after my Herceptrin. I have been so ill the last couple of months, I am worried. Oh well we’ll see.
Feeling much better, Saw Dr D on Monday and she is convinced that problem will resolve itself once the chemo leaves my system and that I was just hyper sensitive to TAX. Things are getting better and I am getting the banding done on Thursday. Might need more than one wee op, it seems but they will know more then. Baring my bum now … oh the indignity of it all!!!
Helen, the planning session went well. Aren’t the staff lovely? They answered all my questions (but then we are all forewarned by you wonderful trailblazers), got my tats etc. They had to position my arms as i can’t move the right one over my head! It’s so embaressing having to explain the restricted movement and sore moving it into an unnatural position.But not too painful holding it there. My sessions start on Nov 17th and my times are generally 1.30pm. It would be great if that co-incides with any of yours.
Anyway that’s the (scant) news from the front. I truly hope you are all having a lovely restful and side effect free weekend, especially Shiela and Maggie. How are you both? Holding up ok?
Christmas lunch sounds awesome, but I would have to join you late after rads as I will be frying all through November and December,inc Christmas and New Years Eve. If I may make a suggestion, we went for the Christmas Lunch at Cafe Andeluz 2 years ago and it was one of the finest meals any of us had ever had. And not too expensive either
With heartfelt cuds
Annie xxxx
Ok guys new update!!
I have now been told no chemo for me as there is nothing there to treat, I will just get Rads as planned. Also I will only get Herceptin for my original treatment so only have 5 more left.
They say what is the point in putting me thro Herceptin when this one isn’t reacting to it, I’m only 35 so they don’t want to go down the road of putting me on Herceptin for life when I don’t need to.
They said if it was Secondary cancer then I would be on it for life.
So girls it is good news that I don’t need to go thro a whole year of grouling treatment again
I hope everyone had good weekend, I was out Frid night and Sat night my friends son made us a gorgeous meal
Take care for now lovley lassies xxxxxx