you must be very proud of them Madam. I asked my older boys if they would like to some fundraising for cancer research and they looked at me blankly...i guess not!
Date for anyone who can meet in London is 17th June btw. ping me on facebook if you think you can join in x
Hi Junash, that's great news that you are nearly at the end of your rads marathon...soon be done and dusted. I hope your skin is holding up too xx
Madam sent you a message on FB, might have gone to your 'others' folder. If anyone else is nr SW London over the coming weeks do give me a shout as well!
LainieG, such pain and sadness but somehow yes, something to be thankful for. It certainly is a mixed bag of emotions for you and you certainly have had a very very long journey. You will surely soon be through the tunnel of treatments soon and properly moving on. Hugs xx
Hi Madam, you are having SUCH a tough time of it .... still, so absolutely no wonder to me that you are miserable and crying...who wouldn't be. I've not been through half of what you and other posse girls have, but my brain is mush, add the fatigue and I get sooooo fed up and miserable (in fact like I was yesterday)! You've been juggling lots of other life stuff too....it all adds up! As Jingo says, the stamina required to get through this. So please don't be hard on yourself and just believe that you will get to the end and the podium soon xx
LainieG that's pants. Fingers crossed you can get an appointment presto pronto xx
Madam, sorry to hear you are still slogging away with healing. I remember last year when I went through 6 weeks of not healing and it is mentally draining and I would say perfectly normal to cry all the time, at the drop of a hat. Mind you I still do that! Maybe they suggest anti-depressants just as a quick fix to help you get through a few weeks?
Next week it is one year since I first went to the GP and at times it feels like the longest year of my life, and then at other times I feel like I lost a year in the blink of an eye, but one thing is for sure, we all need a huge amount of stamina to keep going at this point.
You will get through all of this and you will heal and get on with your treatment. In the meantime if you are still in London or at the Marsden and feel like a visitor or meeting for coffee then let me know. I'd be happy to come and meet you and let you have a rip-roaring moan-up at someone new! I'm only a couple of miles away.
So well done Jingo_x for loosing all that weight and still up for loosing more...I take my cowboy hat off to you as i find it such a struggle. On a 5:2 fasting day today and I could eat my way through the fridge right this minute! lol. (p.s. that last comment of yours about cheating really gave me a chuckle 😉). xx
Great that we all seem to be healing: mind, body and soul.
Hi Peta, the Eurotunnel policy is just a normal worldwide travel policy, not just for travelling with Eurotunnel. It was so simple that I kicked myself for wasting time with all the others.
Re the weightloss I lost a stone after diagnosis, then didnt try and lose weight during chemo as I felt it was so important to eat well. Have lost 1.5 stone since end of chemo. So it has been over 10 months really but hoping to lose another 2 stone by the end of the year as soon as I can do some exercise again. Of course by boobs weighed 2kg so I have cheated a bit
I'm not sure that we're not that similar bettypoppit. I still have to stop and have a breather and I'm still paying for my complete overuse of spoons at the weekend! My legs ache hugely still, I think it was wearing heels for the first time in two years, and I'm still tired. I got up at 10.30am today, lazy me. And you've done a eight miler, flat or not! I'm feeling much better than chemo time, but I'm maybe at 50-60% energy now maybe? Everything I do I get some sudden tired payback from it, there's no way I can just do what I want. So don't be too frustrated with yourself? We'll get there, slowly slowly! :-)
Jingo I'm glad to hear that your latest surgery is recovering well. Thanks for the info on travel insurance too, do you have to travel with Eurotunnel to take out the insurance do you know? And congratulations on your hugely successful diet! Did you lose weight during chemo and radio or has your weight just plummetted afterwards? I must go on a proper diet again, I need to lose my chemo stone, but I've been too tired and too busy so I've just faffed around the issue so far. Maybe next week... ;-)
Mystery Mouse well done on the race for life! It's so good to hear of people doing positive things again now. :-D
re travel insurance, I had problems back in March as I wanted to go away 2 weeks after rads. All the 'pink' insurance companies rejected me or put a clause in to say anything related to BC was excluded. Finally I called Eurotunnel travel insurance and they have the simplest process - all they want to know is that all your conditions are stable and no one in the family is terminally ill. Cheap too. Wish I started with them!
Well done on doing Race for Life...makes my 'noob' sore just thinking about it
I am in the fatigue group as well and my familly now getting used to talking about spoons - thanks Peta. I budget my energy when i can to make sure I can do thr things I want to. Just back from a 3mile walk to the shops and back and I know thats me done for the day so will stick to paperwork this afternoon, but going out tomorrow evening so will do less during the day and keep some spoons back!
My mastectomy is healing very well (touch wood) and little fluid so far - been wearing a compression vest given to me by my lymphoedema nurse. Its hideous but I think its helping....wish I'd had one last year! Have ventured out a few times completely flat now and quite like the feeling and the way it makes me walk, but also like taking the stuffing in and out of my comfies and choosing which cup size I want to be. I have now lost 2.5 stone so really feel like I have a completely different body and need to get all my old clothes out soon and start working out what I can and can't use with this new body!
Good luck Lainie with the mri - I hate the things as well. When I had my breast mri they put me in face down with a hole in the bed and a little mirror underneath and I found that much easier than my head going in the other way up. Perhaps they could do it face down for you? The nurse said most people cope better with it.
How are you doing as well Madam?
love to the rest of the posse, sorry if I haven't mentioned you but I am thinking of you all!
Sorry to hear that you have more tests to come LainieG I hope it goes well for you.
Has anyone looked into holiday insurance at all? If so who would you recommend if any? Would welcome your thoughts on this as thinking of going away in the summer
Very achy today after taking part in the 'Race for Life' on Saturday. I think I overdid things big time still my own fault. It was a lovely day though and the weather was good and the experience was so empowering and uplifting so I am so glad I was able to take part. Thanks everyone for your support
Just back from walking 'Monty' and now feel like I need a nap! Think it was Bettypoppit who is worried about feeling tired? I just think we all started from different fitnes levels and it has affected us all in different ways. I don't need need naps during the day anymore but have to go to my bed by 9pm as soooo tired. I do still get out of breath sometimes though. Just listen to your body we will all get there in the end!!
Onwards and upwards posse!!
p.s. I did manage a slow, steady, flat 8 miler on holiday in the Cotswolds....but was pretty much good for little else for the rest of the week!
Hi PETA, great to hear that you have been 'giving it some' on the dance floor 😀 and enjoyed yourself. Way to go Posse girl lol.
Thanks for all the info re your energy. I finally had my final review with the onc consultant last Thursday and she is so convinced I'm doing great and the lack of energy is residual se's still, that she doesn't want to blood test me yet. But if no improvement, do some in 3 months 😕. Anyway, I'm getting out with Betty every day now - usually in the morning for about an hour, but on the flat and only 1.5 miles I guess. I usually need to rest a couple of mins when out! Then I need to rest when I'm back. Then I get on with an hour or so of housework or gardening.... then rest again. Usually apart from fiddling about that's me done and a snooze needed. Every few days I'm back to sofa surfing for a day - like today! Sounds like I'm doing OK, but not in your league although I would think you were much fitter than me, before all this started. It does put my frustration into context, thanks xx
I've been catching up on all your posts as we went along, but couldn't really post from my phone. I've just got back from a wedding in Scotland and I had a good time. I was good and even wore my magic sleeve and glove on the flight, the one I'm supposed to wear all the time but don't. I managed to find the energy to throw some shapes on the dancefloor which made me feel great and young and well. I felt deservedly awful on Sunday though. :-/
Bettypoppit, I'm sorry to hear you're so tired. Linzz has the right idea with the blood tests, its a good place to start. Do you manage to be reasonably active and go for a walk in the morning, or are you really tired all through the day? I get tired in the afternoon if I go for a walk in the morning, I can do 3 miles happily now in an hour, that's uphill some quite steep bits and through the woods etc. - I'm giving you distances etc so that you can compare how you feel. If I've done a good brisk walk then I have to sit down and rest a bit in the afternoon, but I don't fall asleep. How does that compare with you? You might just be doing quite a lot? I have visions of you romping over the moors with Betty! I don't have little kids either now and I'm not working so I might be a good comparision stick, I found that the regular morning walks really helped me, plus loads of sleep at night and I lie-in often too.
Junash and AMDriver I hope the radiotherapy is going well and your skin is holding up well. Junash I started taking Tamoxifen after radio and I'm fine so far, no real side effects. A few hot flushes. My hip joints are a bit stiff too, but they were a bit stiff before all this so just I'm ignoring it. I was most worried about 'libido' but I'm not affected by any libido issues, so that'll keep me happy. I think sex-related positive endorphins are medically good for me, or something like that. ;-)
Lainie, its really good that they're investigating you so promptly, I can't beleive that you have another new 'thing' to cope with on top of everything else. I hope they sort it out really quickly.. I'll be thinking of you.
I hope all of the ladies have a good week and everything goes smoothly for everyone. xxxx
Really sorry to hear that you are going through more horrible stuff LainieG, you certainly have had more than your fair share! Fingers tightly crossed that they can find out what's wrong and get you treated. Hugs, xx
Thanks Murphy, if it is better I may have another go at asking. How long have you been on Letrozole? I am only just starting 3rd packet so hoping things may still settle but really don't want to put up with aching and stiffness that I have at present.
Thanks again Sue xx
Morning Murphy, just browsing from November Starters and noticed you had managed to get Femara on script. I asked my GP for it as have been taking Letrozole for 9 weeks and very stiff especially in the mornings and painful knees, hips, fingers in fact most joints. She said No as Letrozole costs £4.20 per month and Femara £90 per month so said she would get into trouble fro prescribing it!! Well done...hope it makes things better fro you. Sue xx
Thanks Linzz, my mum thinks I ought to be getting checked for an under active thyroid, given that I've been 'on the tired' side for years. Think a few blood tests might be a good next step. Good luck with your office move xx
Bettypoppit, I expect fatigue is like other side effects, in that affects some more than others, for no apparent reason. I wouldn't describe myself as fatigued but I fall asleep every night on the sofa and then go to bed really early. My poor OH is a bit fed up as I never manage to see the end of anything we're watching on TV and am always asking "what happened?". Yet here I am up at 5 am today (stressed about moving offices today - great timing).
I know you will be asking your onc about it today, but I've read about people who were struggling with fatigue in the months after treatment and eventually found they were anaemic (or had low levels of other things I'm afraid I can't recall) and after getting that minor condition sorted they felt so much better. If your onc tries to reassure you it's "just" fatigue you could at least explore whether there is anything they can check for? (For instance I later found out that during treatment I had been mildly anaemic but they did nothing about it as I wasn't bad enough to need a transfusion. I'd have appreciated some efforts to make me feel better, or even an explanation of why I was so darn tired all the time would have helped!).
Good luck today x
Great, great news Jingo_x, time for another beer 🍻. xx
Debtex, it's good to hear that your feet are improving albeit sloooooowly. Fingers crossed it keeps improving. Oh my word... how astonishingly crass and insensitive of your boss! Hope you have a while yet before you have to face any more of that xx
I've got another attempt at meeting my onc for my final review in the morning...fingers crossed, but I'm half expecting that she won't be available again 😕. Short list of ongoing se's. In fact just the fatigue thing that's really bothering me. I just don't know why I seem to be struggling so much more than other posse members! I'm not working and I don't have children, yet the tiredness defeats me every day 😕. I'm doing more than I was just a month back, but still getting exhausted and falling asleep most afternoons. Any ideas???
Great news on all fronts Jingo!
Murphy, that really did make me laugh. I don't see why we should put up with pain if we don't have to. I've got emla cream on my repeat script and last time I put it on 2 hours ahead of time and didn't feel a thing. The CT I'm getting next month is with contrast which I think will include a cannula. Tempted to put some cream on ahead of that too!