That would be great!
I'm following the training plan from BCC here: https://www.breastcancercare.org.uk/sites/default/files/files/pink-ribbonwalk-training-guide_0.pdf
I started at the beginning of April, so not that long ago.
They do also have shorter walks (5 and 10 miles) if you didn't want to commit to the 20 miler - I think they all start at the same place so we could meet up before the walk even if you're not doing the 20 miler with us.
Let me know what you decide to do so I can send you the details if you'd like to join us.
Well, it's a bit strange coming back here, it all feels very distant now, though looking in the mirror is an easy way to remember that it wasn't really that long ago! My hair seems really keen on growing upwards, not so much on sideways, so I'm sporting a rather weird 'dome-top' hairdo. Hopefully it'll calm down soon.
Anyway, I just wanted to pop in to find out if anyone is doing the pink ribbon walk in London? I've signed up for the 20 miler (arghhhh!) to try and get myself fit again, and just wanted to see if anyone else might be there as it would be lovely to say hello in the flesh.
Hope you're all doing really well and that normal life is gradually returning...well, the "new normal" anyway.
Hugs to you all,
It's good to hear that you are 'back to normal' after all your treatment.
I had 6 months of chemo before a mastectomy in order to shrink the tumour - the mri after chemo showed that the tumour was almost gone, but had broken into small parts (which is what they expected to happen) and the pathology report following the mx last week confirmed that the cancer was more than 90% reduced. Proof, if any is needed, that chemo works. The team seem to like seeing the evidence as you don't see that if chemo is given after mx or rads. My oncologist said the time is not far off when chemo is all the treatment that will be necessary......
I'm now waiting to hear if I need radiation and in the meantime recovering from the mx.
Keep well all.
just checking in for news of you all! I'm fine, physically & mentally back into normal life. It's lovely! I have a few more cancer-related follow-ups: an MRI to make sure nothing is lurking behind the implant (margins too small for complete comfort), and probably elective prophylactic surgery on the other boob (to get a matching set, as my neighbor says).
I'll keep coming back every other month or so for news of you ladies. Hope you're all feeling mostly better! What a summer we had, but you really helped me through it.
It has gone very quiet on this thread. I assume that means that most ladies are finushed with chemo?
I can finally join you having had my last taxol on Friday...yippee!! Can cross this hurdle off the list
and on to the next......mx and radiation in the New Year. Really glad to have a few weeks to enjoy xmas
and feel 'normal' for a while.
Take care everyone.
Thanks Bagpus, I might try one of those courses.
have a lovely holiday, and do let us know how you get on with Tamoxifen!
I think it's very common to have these sort of feelings after treatment. I'm not quite at the point that it's hit me yet having just had my mx and also my Mum's just been diagnosed with bc, so I'm still feeling that I'm in 'cancer world'. But I suspect that in the new year I'll have a chance to take stock and let some of the realities sink in and that's when I'll start to feel the impact of it.
It also doesn't help that you always hear about people who have passed away from cancer, but you don't really hear about those who are just getting on with their lives as normal years and years after their treatment, so I think it gives us a slightly distorted view.
Also, you can't judge your situation by anyone else's situation. No two cancers are the same and no two bodies react in the same way to treatment.
It might help to see if they do a 'moving forwards' session near you, they're organised by breast cancer care and are aimed at people like us who are trying to get back to normal life after bc. I'm hoping to go to one early next year.
I'm worried about the tamoxifen se's too. I'm putting off starting mine until after my holiday next week, so I'll let you know how I get on. If you do find you have problems with tamoxifen give it a few months (apparently it takes a while for your body to adapt to it) but then go back to your onc as there are alternative treatments they can try if you're having a really bad time.
just thought I'd pop in to say 'hi', cause I've been getting back to 'normal' life lately.
I'm finally starting to feel a bit more like myself again, as if that chemo fog is lifting! I'm getting motivated again, and am reading up on juice detoxes etc (not yet put into practice, lol).
I've been given 2-3 months to get back to feeling fit again, before I start Tamoxifen (which I really REALLY dont like). Still getting my Herceptin every 3 weeks too.
Hair is starting to grow back! (In all places - razor had to come out again, lol).
I thought I was fine, mentally, untill last week I was told by a friend how her best friend had just passed away from breast cancer, and I read her blog. She had a very similar diagnoses and treatment plan as myself, but it all came back, all over her body. Not much older than me.
It finally hit me. That this was a possibility. I look at my kids, and I am terrified... there are moments where it hits you like a brick in your stomach. And there's so little you can do to change your life's path.. (unless, I suppose, take all treatment available).
Anyone else have the same feelings?
Hope you're all feeling good and getting healthier every day!
Glad your rads are finished, hope they didn't tire you out too much more. I had some great news that my chemo was so successful (I had it pre-surgery and when they did the mx there was no disease left) that I don't need rads after all. So just a diep flap to do sometime next year - though I'm now considering this 'cosmetic surgery' and nothing to do with cancer! Hopefully it can shift a bit of belly fat because, like you, I have quite a bit of weight to lose.
Unfortunately my Mum's currently waiting for biopsy results for BC. It's a disease that just keeps giving, isn't it?!
Fingers crossed it will be benign and I can finally relax and look forward to Christmas.
Take care everyone xxx
The tax (docetaxel) causes a massive amount of water retention - so you will be heavier even if you have been watching your weight! My feet and ankles were hugely swollen and 5 weeks after my last dose I still have lots of water retention.
glad to hear radiation & surgeries going mostly ok. My mother also makes the strangest comments, but fortunately she was quite impressed with my new fake boob, and started wondering if she could get my surgeon to fix her double chin! I said only if she wanted a fake boob as a replacement - that's all he does.
Terri, I also have lots of muscle aches in legs & shoulders, like I've been hiking a big mountain rather than going for short & slow walks. I think it's because of the Taxotere and being stuck in bed with pain & fatigue for so long (2 weeks): the muscles are bound to start deteriorating by then. So hopefully it's a question of building them back up bit by bit. Yesterday I even got out and did some tennis against the garage wall! For all of 10 minutes, but I think getting back in some sort of basic shape helps.
Just in case you were wondering when the best time is for your mother to start telling you that you need to lose weight, apparently it's 5 days after your mastectomy.
If you don't hear from me for a while it's because I'm doing 20 years for matricide!!
I had a snorer next door too!
If you haven't already heard about them, you can get wonderful mastectomy pillows from this brilliant charity: https://www.facebook.com/Jensfriendsmastectomypillow/
I didn't think I was uncomfortable until mine arrived this morning and now I think it's going to be a permanent attachment! They only charge £3.50 and that's just to cover their postage.
Hope they get the TV working if you're in another night.
Thanks Terri. Weirdly looking forward to the surgery tomorrow, just so nice to be getting another thing ticked off my list.
I wonder if your body's just taking longer to recover because of the pneumonia? Fingers crossed the aching will ease off soon, if not perhaps contact your chemo nurses to see if they can suggest anything?
Totally sympathise with you, I have been having similar thoughts. I am going for surgery on Wednesday (like you I had just a few days notice!) & it will be a ward situation & I have never had my head uncovered before. I am thinking of leaving wig at home & just wearing my little caps as much as possible & hoping others will be too groggy to notice! I will not be in long, as reconstruction will definitely be separate & next year, which I am also getting my head round.
It just means we are feeling quite vulnerable & self-conscious at the moment. However, as you say, surgery will be another stage ticked off for us in the whole nasty process.
Wishing you all the best & hugs for Tuesday
Thanks for the link to that paper - interesting read. I certainaly wasn't told all the side effects!
Am now nearly 3 weeks since last T, and took a lot longer to recover this time, from the body aches and tenderness, and stomach bloat!! Feel i've been full of wind for these past 2 weeks.
Also have watery eyes which i assumed was due to the fact i don't have eyelashes, but can see that it can be an effect of T - am hoping it goes when eyelashes grow back, which i'm hoping is very soon, as feel very bare without them.
I hope your swollen feet, ankles etc get sorted and 'go down' very soon
I have the most horrendous swollen feet, ankles and legs too. I also have a swollen face and abdomen, make sure it is not the docetaxel because mine is:
When I started on blood pressure medication - years ago. They gave me a low dose and said to take them at night after a month the GP wanted me back and asked if they were ok and they were so he gave me a bigger dose because the original was not quite there with the numbers. Again come back in a month and this time everything was OK and the dose was the right one. I take lisinopril and have never had any symptoms.
I am on omeprazel and I only took mine about 3 days before and after the chemo because I have never had heartburn other than when on chemo. I have loads of it as you can imagine.
Finally got my surgery date sorted for...Tuesday! Lots of notice then!! I'll be having an implant initially then a tummy-flap reconstruction thingy either in the new year if I don't need radiotherapy, or in a year's time if I do.
Sorry Popkit, but I seem to be beating you to it by a couple of days!
My main concern is that I thought it was going to be at my local hospital which is all private en-suite rooms (which was soooooo lovely when I had my baby there last year) but have just found out that it's at the sister hospital which is mainly wards. Hate, hate, hate that idea as I feel like a bit of a freak show at the best of times in my less-than-hairy state. Have asked them if they can prioritise me into one of the few private rooms they have, remains to be seen if they can. I know it's a small thing in the bigger picture, but when you feel crappy about how you look the last thing you need is to be sleeping with a load of strangers!
Anyway, at least I should be rid of any remnants of this hideous disease (fingers crossed)...though I'm of course hoping that there won't be much to find if the chemo's done its job properly.
Hope you're all finding the radiotherapy OK.
Terri - I hope your cough is finally subsiding and that you've been able to sleep a bit better.
Thanks for the advice re: Lansaprazole. I saw my GP yesterday about the Amlodipine and she said that the swollen ankles/feet/calves are a recognised side effect as well as the weight gain, which makes sense as I didn't put on any weight throughout chemo until I started taking it in August. She is reluctant to make any adjustments before I have surgery next week so will have to wait with my fat cankles for a few more weeks. Dreading putting those surgical stockings on though!
I also was on Lansoprazole all the way through and was not advised as when to stop it. So I trialled it.
Hence I would suggest, if I may, to keep taking it for at least 4 weeks post chemo and then stop it. It takes a while untill our 'inners' adjust themselves again. I am now nearly 7 weeks post last chemo.
My stomach is back to normal. Fatigue and chemo brain still pretty bad.
Oh Terri really sorry to hear that you've been so ill. Just so unfair after getting through the chemo. I hope you will be allowed home today and that the cough wasn't so bad last night. Did you manage to sleep any better?
General question - Was anyone else taking Lansoprazole the whole way through chemo? If so were you told when you could stop taking it?
Also I am taking Amlodipine as my blood pressure was so high during chemo, although the cause of it wasn't directly attributed to the chemo. There is a horrid side effect with this medication which is swollen feet, ankles and lower legs. Combined with the side effect from Docetaxel of skin peeling off my feet this is very uncomfortable and making it painful to walk too far. So a catch 22 situation here; I can't exercise enough to lower my blood pressure as the medication to lower my bp is preventing it. I've been advised by my bc nurse and surgeon to talk to my GP about it. The last time I spoke to my GP about it they advised - wait for it - doing nothing. They are not even monitoring my bp. I am going to GPs tomorrow to have a flu jab (will have to have in my thigh as both arms are unusable, one with PICC line which is staying in place for surgery next week and the other arm because of lymph node removal) so I shall ask the practice nurse for her opinion and get her to do my bp. Do any of you have any experience of this medication or any advice? No worries if not it's just good to sound off!!
I hope everyone is well and Terri - get well soon!!
I'd ask the make up lady and see if she can provide them, I'm sure she'll have had this type of request before (lots of people wear them just to boost their own lashes).
Alternatively, most Boots have a MacMillan sponsored make up adviser, which is tied to their No7 brand. But I wonder if you can get an appointment with one locally they would be able to advise on false eyelashes as well, as I think they do sell them in Boots. I went to one before chemo and did get some great advice from them, though not specifically about false lashes.
Hope this helps. It would be interesting to know if you do get recommended a good brand as I might invest in some myself!
It sounds like you've had an awful time, I'm so sorry it wasn't just a cold.
Don't worry about the herceptin delay, I'm sure it's not uncommon to have a change of dates because of ill health or other things (eg if your injection was due at Christmas).
Hopefully you've beaten the pneumonia and it's just the remnants of the cough to get rid of. Perhaps they can give you some sleeping pills so at least you can have a better night's sleep?
Oh Terri, I'm so sorry you've had all this on your last chemo, what a nightmare! At least your body will only get stronger and more able to fight infections from here on in, but that's probably not much consolation at the moment.
I find that hot lemon and honey helps me with coughs and colds, even if just to soothe my throat a bit (and lemon's are great for vit C). If it's a chesty cough, the other thing you can try (if you have the energy to do it) is to put some vicks ointment in a bowl of hot water and lean over it with a towel to make a little 'tent' over your head, breathing deeply. This should loosen the gunk a bit which will make it worse initially but get rid of it more quickly.
Lots of fluids (when isn't that a good thing?!!) and my Mum always told me to avoid drinking too much milk with a chesty cough, though I think that's probably and old wife's tale?!
Most importantly, take good care of yourself and don't try to do too much, even when you start to feel a bit better. Lots of rest and tlc.
just being pyjama woman in bed with bone pains as usual, but catching up on reading. I went and checked Belle's excellent blog and her post on secondary breast cancer made my blood boil. I highly recommend it.
So many of the medical and care advances (including this forum!) we have benefited from came through militancy from previous generations of cancer patients, and it now it seems the next step is not treating secondary breast cancer patients as though they are "less" deserving of proper communication, statistical follow-up, bespoke nurses, appropriate medication etc. So definitely worth learning about and trying to do something to improve it.
The Breast Cancer Care "Moving Forward" course that I will be attending can also be downloaded here: lots of stuff on menopause, bone health, ongoing issues and getting better.
so that might help if you don't have one running conveniently close by.
Thanks Belle for your words and actions, you're amazing.
Well done on getting through it Julia, so sorry you had another hideous reaction to deal with on top of everything else.
All the best for the next week or so until you start to feel better and can really appreciate that chemo is DONE!!!
well, so I'm "done" with chemo, as in the last of the poison went in. It was suitably dramatic for a finale: I had another allergic reaction to the taxotere, and the whole process took from 10:30am-5:00pm, because they had to take it extra slow! And me with a cold cap on my head the whole time, my partner running to & fro with hot water bottles so the rest of me wouldn't freeze too. I'm starting to fill a bag of medications I won't need anymore to bring back to the GP or pharmacist: leftover steroids, anti-sickness, empty filgrastim injections! Goodness I'll be glad to be done with all of that.
At the same time, I know I still have a nasty week of joint pain ahead, I got oral thrush (3rd time!) and then another week of being extra careful of infection. And then the long road back to some kind of health: I've been needing SO MUCH SLEEP! Napping before lunch indeed. I'll be starting on the "Moving forward" courses they have here at Wythenshawe Hospital in Manchester next Friday, do they have them elsewhere? Are any of you going? And maybe signing up for some kind of holistic therapy, who knows.
In other news, I most likely don't need radiotherapy (hooray?). However, the bone density scan came back with bad news: I'm osteopenic and need to start taking calcium supplements. Also makes me yearn for being able to do more exercise then walk 2 miles and take 1 hour nap! Still waiting for the full genetic test results, but thinking I want to ask for 2nd mastectomy for prevention reasons anyway.
I know it's not over but a big piece is done. I have so much to thank you ladies on this forum for: so much companionship and good advice. You helped me through SO MUCH, so thank you. It seems like a lot of us are facing more chemo, radiation, surgery, etc, so thinking of all of you. Don't know what else to say.