Hello Susie,
So good to hear from you . I'm glad to hear that Rollercoaster is moving along in the right direction and that the issues she had with her mum and dad are sorted. She seemed a very nice person with a big heart.
How are you feeling after your reconstruction? Did you have a full reconstruction or partial? I'm really interested in this procedure as I'm waiting for mine. I had my mastectomy in May, had chemo and radiotherapy six months later and told that I can't have mine as my bmi was too high. Told by the nurse that I needed to lose 5 stone in weight, felt my world had fell apart.
I'd be grateful Susie, if you could keep me posted on your progress, and how you find it. Anyway my lovely, take good care of yourself and give my best wishes to Rollercoaster.
Love
Rainbowrosie xx
Hi Gill,
I too am going to try and enjoy my Christmas this year . Have started to do some shopping, but get so anxious when I'm on my own. I'm getting a few niggles but my gp is trying to sort me out
. To be honest I'm not very good at Facebook either and I keep meaning to ask my daughter to set it up, but when she's home from uni other stuff gets in the way.
Anyway, my lovely it's good to hear from another member of the gang,take care of yourself and enjoy your Christmas shopping!
Big hugs
Janine x
Hello Gilly Rainbowrosie and Lois
So good to hear from you all am going to try to enjoy christmas this year as last year just passed me by. Going into Preston this a.m. to do a bit of christmas shopping, like everyone just so scared when i get any twinges or pains and god if i get a cough i get so paranoid but just keep on trucking Dont know how to access facebook so miss out on lots of people but think of them all regularly love Gill
Thanks for your reply Gill. I be it was alot more fun than the first time. I'm glad that everyone had a wonderful weekend and who knows, next time I will come . So here we go, onto the Christmas rush, take care.
Janine x
Gill, good to hear from you too and to hear that you are doing ok xx
Good to hear from you RainbowRosie. We had a wonderful weekend away, full of fun and laughter. You will have to try and come to our next one xx
Good to hear from you lols , say hello to everyone for me at the weekend. That will be some reunion, especially when you think of the situation were all in last year. Sorry to hear that you're having pain in your shoulder but please, once the weekend is over, get it looked at. What do they say, nurses and doctors make the worst patients!
I had an ultrasound 3 weeks ago because I was experiencing pain around my mastectomy scar and upwards. Was so scared about it. I saw the oncologist and she told me everything was clear and that the lymphoedema I have doesn't help the pain. Also, the radiation scar and mastectomy site is still healing, so it'll take time. It was a relief and reassuring that the cancer hadn't returned
Anyway, lols, have a super weekend, I hope Coventry are ready for you all!
Love Janine xxx
Hi Gill,
Oh, I'm so pleased you replied It's good to hear that you're finally finding your way through all the trials and tribulations that was a long journey for all. I was signed off by the oncologist last week until next year and feel really scary about losing my security blanket.
Anyway, I actually spoke to Chezza in June and she was taking part in one of those race for life thingys. She told me that alot of the girls from our forum were on Facebook and gave me a way of joining. However, I'm not very good at those things and suffice to say that I haven't done anything about it yet . As for Rollercoaster,I don't know whether she is part of the Facebook group or is getting on with life without the group. I hope she is alright as she had alot on her plate and I admired her for the way she got on with her treatment and dealing with all her family issues at the same time. Whatever she's doing I wish her well,as with the rest of our girls.
Don't be a stranger, take care of yourself
Love Janine xxx
hi rainbowrosie
do you ever here from chezza or rollercoaster x
hello Rainbowrosie
I do remember you.You will remember me, I think, as I was terrified of everything really struggled with all treatments and need constant reassurance. I am back at work now after many setbacks and complications after chemo but like you I feel tired and have joint pain due to hormone therapy but I can manage that. But we are here and am positive things will get even better over time. I will look into if we have anything like Hope in my area sounds really benificial. lovely to hear from you love Gill x
Hello Gill,
I don't know whether you remember me but it's lovely to have someone on the forum I hope you are getting along alright my lovely. To be honest I'm still struggling with the whole thing, however, I've just finished my herceptin injections, so all main treatment is done. Seeing the oncologist this week about a large build of fluid at the mastectomy site. Still suffering with extreme tiredness and really want to move on. To add insult to injury, I've been told that I can't have a reconstruction as my bmi is too high and to come back when I've lost 5 stone!
Anyway, on the bright side I have been fortunate to attend two writing therapy courses, which were really good. Also, a course called Hope and is part of Macmillan. It ran for 6 weeks and it brings you together with a small group of people who are or have been in a similar situation. I found it a godsend. They help you with dealing with emotions, stress, relaxation, relationships and much more. I would recommend this to anyone if it can be accessed in their area. I have met some wonderful people and a bit sad when it came to an end. However, saying that, as we're all local, I'm arranging for us to all get together soon.
So, there you have it, my past 12 months in a nutshell! Hope it hasn't put anyone off replying.
Best wishes Rosie xx
Hi I miss all you Maises hope you are all doing well and getting on with life
much love Gill
Hi Chezza,
I'll join you in the toast to our amazing maisie tonight. I, too, have been looking through the posts and it just reminds you of this wonderful person. Remember when my mother in law died (bowel cancer) her beloved dog died the day before, I truly believe our pets know and often leave us too. At least she'll have her friend with her, by her side.
I have sent you a pm as I didn't think it was appropriate to do so on this particular thread.
Take care my lovely
Rosie x
Hi Chezza,
Can't comprehend this sad news. My thoughts are with her family and friends, I feel it was an honour to be one of the amazing maisies and that Christy May was one of us. God bless and be at peace Christy May.
With love x
Dear chezzap,
I am sorry to hear that christy has passed away. I'd like to offer my condolences to her friends and family on behalf of the moderators.
Very best wishes
Janet
BCC Moderator
Hi my lovely Maisie friends, back from Malta, had a good restful time but don't feel too jealous because weather wasn't great. Swam every day and it was fine, such a relief. I think I'm as ready as I'll ever be for teaching on Monday!
Had my hair, all 1cm of it, dyed and it didn't take! Ggrrrrr! Might be too many chemicals still in my system, or new hair not so receptive, or sensitive dye not strong enough, but I really don't want to be grey yet.
Roller, hope all is well with you, you deserve a break from all you've been through. Glad Dad is settled now. He sounds such a dear man, still caring so much about your mum
Chezz, sorry you've had to cope with Sergio's chicken pox on top of everything. Has your other little boy got it too? Chico's death is so sad, I know exactly how you feel.
Rainbowrosie, sounds as if therapy was tough but good. Yes, we must think of ourselves as the lucky ones, though it's hard sometimes. I couldn't get any insurance firm to insure me for any illness realting to breast cancer, but had no problem getting general insurance. You're fairly safe staying in the EU because you've got your EHIC
Lols, the Japan cruise sounds amazing and really exciting. When do you go?
Lots of love to you all and anyone else I''ve missed.
Fran xxx
Hi Chezza,
Sorry to hear about the lymphoedema, carrying little boys doesn't help the condition, but what can you do. My arm and shoulder is killing me at the moment due to the lymphoedema and I'm not seeing the specialist nurse until 11th April arggh! Do you do your massage?
The writing therapy is organised by Macmillan here, it's run in one of our local hospices, so maybe you could find out from your local Macmillan centre.
Pagets disease is a cancer disease of the nipple, with underlying cancer (invasive carcinoma and or DCIS) of the breast. At the time I was diagnosed I had both invasive carcinoma and DCIS, following my mastectomy they found the cancer within the nipple. I didn't know it was called this or I had this until a routine visit to my GP a few weeks back. It's quite scary that no-one told me at the hospital at the time, just want to know more information from the oncologist tomorrow.
Look after that arm hun.
Hope all other Maisies are doing okay
Rosie x
Hi Ladies.
Rosie that writing therapy sounds really good. sometimes easier top write feelings down than say them. Wonder if they do it near me? Good news on the money front thats great. What exactly is Pagets???
Sergio back at nursery now hurray!!!! My hand was really suffering with lymphodema with carrying huim all week.
Fran hopw you had lovely holiday and are all geared up for next week.
Ju Im still jealous of a size 14 I could prob just about squeeze one leg in them!!!
Morning all,
Wow Lols, how fantastic, a trip to Tokyo! Now that is something to look forward to. I know how you're feeling regarding your mammogram, i'll have mine then too. However, I visit the oncologist on Thursday and I have a few questions to ask. One being, why wasn't I told that I had pagets disease, which is a rare form of breast cancer! One piece of good news though, was that my esa benefit is going to be reinstated and backdated. I've been chasing this for four months and was finally told the news on Friday.
Writing therapy is run by Macmillan but taken by a psychotherapist. I was in a small group of five people, who are going through cancer or have had cancer. Catherine, our therapist, gave various activities to do, from writing words to describe ourselves to writing sentences off the top of our heads and extending on one in particular. My sentence was about the effect of my mastectomy and going swimming for the first time. We then read back our chosen sentences, we all found it quite emotional, I actually broke down when Catherine asked me if I felt ugly, and I knew I did. But at the end of day I felt that I had faced a demon and was told it's a type of bereavement and it takes time. I was told it was still early days and to be kind to myself, which was applicable to the rest of our group too.
So, England won the Triple Crown, what about that then! Poor old Wales, they worked hard but couldn't pull it off. Never mind eh. Enjoy the weather and your walks!
Fran, when you're all unpacked and sorted, could you tell me how you got on with travel insurance, did you take any? I'm off to Cyprus in June and have started to look around.
Chezza, hope you have the nice weather where you are and you managed to have a lovely weekend. I also hope that your heart isn't too heavy. Big hugs to you.
Roller and Susie, hope you're doing okay, thinking of you both.
That's me Maisies, off to get dressed, I'm so lazy!
Rosie x
Hellooooo,
Thank goodness for you Chezza, as it's a case of 'is anybody there?'.
Sorry to hear your little one has chickenpox, it can be quite a nuisance for them and I hope it's not giving him too much distress. My mum lost her westie yesterday and she's absolutely bereft, she lost her other one a couple of months back, so I do feel for you my love. Pets are like our children, we feed them, care for them and share their pain, emotions and experiences. They are so much part of us, that we are so lost without them. Go ahead and sob, do whatever it takes to help you get through it.
I'm okay, plodding along, still have very little energy but doing what I can. Went for writing therapy Tuesday which is organised by Macmillan, I found it really useful and met some nice people. Mind you it put my situation into perspective as two of the ladies have terminal cancer and I never met such inspirational women.
Fran, by the time you read this you would have returned from Malta and I hope you had the most wonderful time.
Lols, Susie, Roller and Nicola, are you all alright, it'll be lovely to hear from you
Have a great weekend, the weather is meant to be good!
Love & hugs to you all
Rosie x
hi ladies sorry have been awol. Wish could say its cos have been doing lots of exciting things b ut alas no. Sergio been off nursery for a week with chicken pox so have had hands full to say the least. Also unfortunately I had to have my cat Chico put to sleep the other night. We did it at home and it was very peaceful but it still ripped me apart. He was 15 and had a wonderful life and was much loved. Just cant stop crying though. I understand now why some people say they cant have pets again as they cant go through that pain again.
Hope everyone here is well.
Ju size 12 you lucky thing!!! Are you back at work yet???
Fran hope you have liovely holiday and work will be good for you.
Wendy how is the move going??
Rosie are you ok my lovely???
Hello Maisies,
Really hope you're all ok and not overdoing things. That's probabably why we're not on the forum so much now, we're getting our lives back/ trying to get healthy if possible/ going back to work and we're too knackered!
OH and I going to Malta next week- our late Christmas pressie to ourselves, then back to work on 17th. The hotel has a pool and gym etc so I'll also be doing my first swim in months. Not sure about the gym!
Rosie, sorry you're having to cope with lymphoedema, no wonder it get you down. I'm really glad you had a lovely time in Suffolk, it must have done you good.
Chezz - well done for finishing rads - that's fantastic!!!
Lols,really hope you enjoyed Somerset and feel revived
Roller, glad you're getting there with your Dad - as you say let's hope he really is beginning to settle in now. Hope you're not over-tiring yourself.
Susie, take care.
I'll be in touch when get back from hol.
Love to all and look after yourselves.
Love Fran xx
Hi maisies,
So, got back from Suffolk yesterday and it was wonderful to get away and chill. We took a few short walks around some quaint villages, but energy levels got the better of me at times. The spa in the hotel was lovely, I had my first swim for over a year, it was tough going but I really enjoyed it. I didn't get to do it again as my skin from the radiation went pink and very itchy, so didn't want to risk it. Found myself enjoying the cooked breakfasts too well, absolutely loved the sausage. Back to reality and I find myself wanting to get away from here. Going out soon to have some lunch somwhere to try and keep the chilled out feeling.
Hope you have a superb time in Somerset Lols, it's good to spend some quality time with your partner, away from day to day worries. Knowing you, you'll get a few long walks in! I have been guilty of looking at past threads and you're right it can be really scary. I still find myself doing it though, because it's a trusted site, but I know that my experiences are different to some, so that helps. Good luck with the size 12 jeans, I forget when I was last a size 12!
Chezza, well done my lovely, rads have finally finished! Whoo, Whoo x Don't forget to carry on creaming .
Hopefully all maises are okay and looking after themselves.
Take care and have a lovely weekend.
Rosie xxx
Good morning all,
Thanks Susie for your kind words about swimming, it's reassuring to know that it'll be okay to try. Mind you I didn't think about changing rooms, hopefully it will be fine . I hope you are taking your own advice and looking after yourself too, cramming everything in during the day means feet up at night, surely
. It's great to hear from you x
Chezza, helloooo, forgot it was half term last week. As I've not been at work I forget the dates, being a teaching assistant you would think I'd remember! Hope you enjoyed your time with the kids and what with rads too, you managed to get some rest. I assume the skin is hanging in there as you haven't mentioned it and great news it'll all be over by Wednesday! Don't be a stranger
Going off to Suffolk now,
Rosie x
hi
Sorry been awol. Been half term so ahd rafael all week plus rads. Went to Southport with the boys for the weekend to Pontins so am shattered now!
Hope everyone is doing well.
Rosie enjoy your few days away and hope the swimming isnt too traumatic. Am with you on that one!
Lols how you doing my dear? Hope you are getting more energy as each days comes.
Fran know you are due back to school soon so just remember to take it easy.
Wendy bet you are exhausted after the move with your dad again take things easy and have some time for yourself
Nicola - good news re tests being clear and hope you quench that thirst!! Have you gone back to work yet?
I am due to finish rads on Weds yippee
Hello, hope everyone's okay.
There doesn't seem to have been much activity this week on the forum. Hopefully this means everyone is busy getting on with day to day life and not because of side effects. I went to the lymphoedema specialist on Thursday and I do have lymphoedema on the under side of my upper arm and on the side of my trunk by the mastectomy scar. This means that I have to continue with my exercises I did after surgery, manual lymphatic massage and compression garments. Just another thing to deal with and it gets to me. It's a condition that doesn't go, but can be managed so it doesn't get worse.
Well, tomorrow my husband and I have been treated to 3 nights away in hotel and spa in Suffolk. It's the first time we've been anywhere in 2 years and I'm glad that it gives my husband a chance to relax. He's looking so tired bless him, he won't have to do a thing. I'm looking forward to having a swim, although I haven't worn a costume since my mastectomy and I'm feeling very apprehensive. I've bought a new swimsuit that takes my prothesis but I'm still not sure, I'll just see how I feel when I'm there. But I'm certainly not going to let that spoil anything.
Anyway, Fran, it was good to hear from you. Well done for persevering, with your post, it would have given me the hump!
Lols, another win for the Welsh! Glad thar your skin seems to be settling, mine started to bleed the middle of last week and was sore, but thankfully is much better.
Rollercoaster, glad you've managed to settle your dad and that he finds his new home more comfortable.
Chezza, are your rads finished now? Hope your skin is holding up!
Nicola, hope you're feeling better now.
If I've missed anyone, apologies. Hope you all have a good week and look forward to hearing from you soon.
Rosie x
Dear Maisies, thank you for your lovely supportive and reassuring texts. Hope the technology is working for me now. I think I'm coming out of the worst of the cold now, still sniffing but much better in myself. It must be the support of you lovely ladies!
Roller, I'm glad your Dad is in his lovely flat at last. It will take a little while for him to settle. but now you know he's safe and don't have to worry about him all the time. I hope you haven't overtired yourself and that you can soon start to rebuild your strength. You've been through one hell of a time.
Niicola, its a relief the tests have come back all clear but the raging thirst sounds awful, and it sounds as if you've just been passed from pillar to post which is just not on.I would go back to GP and explain problem with onc and ask him to sort it.I can't believe your onc wouldn't speak to you - I have another appt with mine in August and am not discharged yet. Are you sure it's not just your onc's secretary being awkward? I know how you feel about the treatment being finished - that whole safety net disappears and it's really scary.
Ju, thinking of you -- sometimes it seems like oene step forward and two steps back.and the whole body imaage thing gets you down. Sometimes I feel I look 70 not 60 - and it wasn't great being diagnosed just before my 60th birthday!
Rosie, I had a wide excision removal of tumour so I have some boob left, but as I'm really tiny in that department they might just as well have taken the whole thing off. I really understand how you feel about getting clothes. Try not to worry - we'll all get through this together.
Much love to all, Fran xx
Hello Jo (Moderator) Still having the same problems with copy and paste - as it always seemed to work before I wonder why. I'll wait before I type the whole message direct onto reply box, because that didn't work at first last time). Many thanks
ps Maisies if this gets through thank you for your lovely thoughts and I'll try again soon with longer personal; messages xx
Good evening Maisies
Hope everyone is doing ok, lols and Rosie hope the skins not too bad, sounded like a close call with hospital lols dont blame you for not wanting to go in, cant believe how well your doing with your walking but dont over do it, cos you know we only suffer after.
Chezza keep using the cream and it will be over soon.
Fran sorry your feeling down and know it does take longer for us to recover when we pick up colds etc, we expect to feel better straight after the treatments but sad fact is it is going to take us a long time to get back to our normal selves (if you can remember what that was) and for our energy levels to come back.
As per my thirst, got all the results of blood tests back and chest xrays and all clear, but still really really thirsty gets worse as the day goes on, by bed time i am bone dry, trying really hard to monitor amount of fluids and careful of amounts but can do 5/6 pints easy in a day been careful, looks like im stuck with it in the hope that it just disapears the same as it came, nobody seems to want to help, gp says speak to onc,they say been discharged from onc go back to breast nurse who says go to gp, who was very thorough did tests but found nothing, feels like banging head against wall sometimes, it seems like chemos done so off you go, get on with it, sorry for moaning but just seems like theres no answer to this one, and if it is tamox its a long time to be like this.
Hope everyone is ok take care and have a good week.
Hello Fran,
I did start to wonder if you were okay, but I couldn't remember when you were back at work and that maybe you were just worn out at the end of the day. Obviously, now I know, that you have been quite poorly and too think the immune system must be under strength. I hope you're taking good care of yourself and know how much the weather can affect your mood, so I hope that there's some form of sunshine soon.
Try not to get too stressed about work, I will be very scared when it comes to my turn. I don't know whether you had a mastectomy, but my biggest worry with clothes is finding something suitable and I feel comfortable in. Also, being a size 24, it's extremely difficult to find clothes that look nice but don't emphasise size and lack of boob.
Fran, I just want to say that you are never alone and that you have come so far and that every new start is an achievement! Believe in yourself and stay as strong as you can.
Big hugs
Rosie x