Thank you jencat,
that all sounds promising, the tablet are twice a day and to be honest seem a bit of a faff..i.e. Taking on an empty stomach keeping upright for at least an hour then taking another one in the afternoon (!) imagine going away and having to factor it in? Along with the hormone inhibitors..... the thought of going in and getting it out the way is rather appealing! Xxx
Hi Jencat, thanks for getting in touch re being TN and supplying me with some extra information . Like you I haven't got the BRCA1 or 2 gene either. Don't worry I haven't googled anything since my diagnosis last December. I don't know if you've read any of my posts but it's less than 2 weeks since it was confirmed I was TN. Original biopsies couldn't confirm and my tumour was checked both here and overseas before being confirmed so it's only recently that I've looked into TN. My onco hasn't mentioned bone meds yet but I will be asking at my meeting with him next week. Zolodronic acid is what I'm minded to ask for. As I'm on the ROSCO trial I'm continuing with chemo, 4 rounds of CT, before surgery I had 4 rounds of FEC which shrunk my Gremlin but wasn't so good at destroying the cells in my lymph nodes. I had full ANC which was always on the cards along with a lumpectomy.
2nd mammogram the day before your 60th I can sympathise with you on that one. I spent my 62nd birthday last December sweating on my biopsy results that were due 2 days later.
All the Best, Susie xx
Hi Marlyn, yes of course. I wasn't offered a choice, so I don't know how the infusions compare to the tablets. The infusions have been fine and I haven't felt any side effects, apart from the last one where I did feel a bit achy afterwards. To be fair though I had it only 10 days after my Dad died, so I think I was already tired and run down before I had them, so it might not have been the infusion at all. The only downside I've found is that I have to go to the chemo unit to have them, which makes me feel a bit emotional. On the plus side, you have to have a blood test a couple of days before you have them,which could be a bit of a pain, but I find it quite reassuring to know I'm still being checked.
You do have to have regular dental check ups as it can affect your jaw, but when I had to see a consultant at the hospital about my teeth, he said that it was better to look at the bigger picture and to have the Zoldronic Acid xxx
can I ask how you're getting on with the infusions? I've opted for the tablets twice a day....but am now actually considering the infusions just to get them out the way xxx
Hi Susie B, I'm from the Oct'17 group. I'm TN and like you, don't fit any of the usual criteria for why I had that type of breast cancer. I also haven't got the BRCA1 or 2 gene. I haven't googled it because I was told the information is now out of date. My oncologist said that the risk of recurrence is higher in years 2&3 and by year 5 the risk of recurrence is the same as other bc's, but the good news is that by year 8 the risk of it recurring is low. I've got my 2nd mammogram since diagnosis next week, the day before my 60th birthday!
I'm having Zoldronic Acid infusions every 6mths for 3 years (I had 3 every other chemo and I've had 3 so far independently-I have to go back to the chemo unit for them) I don't know if your onc has mentioned them to you, but they are bone strengtheners and help to stop bc spreading to the bones. and they're for post-menopausal women x
Loads to catch up on since I was interupted mid-post by the offer of an ice cream🍦 from my hubby.
Deano, great news regarding your post surgery results. I didn't think to ask if I was cancer free but the surgeon and my bc nurse both explained that everything was out and that continuing with chemo CT and rads were both an insurance policy and part of my trial. I wouldn't have minded seeing what was responsible for making 2019 such a 💩 year but my Gremlin and nodes are currently spread around between an NHS laboratory in the UK, Prof. Bartlett's laboratory in Canada, and Edinburgh. My blood samples are held in Cambridge and Edinburgh universities. For me the overriding factor was discovering 9 nodes were positive and that I was highly likely to be triple neg which for me took the wind out of my sails so I couldn't take in that Gremlin and his family had been evicted. Totally understand your initial reaction.
Edinbird, sorry you're having such a tough time at the moment. I know you probably don't want to hear this but please, please, please start to put yourself first. There are times throughout our lives when, much as we love our friends and family we have put their issues to one side and deal with them at a later date when we are strong enough to cope. Lecture over. xx
Daisydi, I'm the same as you in that I don't want to read or know too much, so I just keep to the information within the Breast Cancer Care website. I do know the chances of recurrence during the first 5 years is higher than the other b cancers then it reduces. I also know statically my chances of being trip neg were pretty low, I'm not black, I'm not under 40 and most definitely not pre-menopausal, but that was the final conclusion. So basically even with odds in my favour it didn't help. As you say there is nothing we can do about it and just accept that we will all respond differently to our treatment plans both now and in the future.
Rosina your Biography of Cancer book sounds intriguing. Sorry things don't seem to be going to plan regarding a trip to Norwich. A break in a Boutique hotel is the kind we go for. So, are you going camping and walking by yourself?
Implausible thanks for the warning regarding off the cuff comments to medical staff about putting on weight and diet. I won't mention cheese toasties and pizza again🧀🍕🍕😃. Loving the photos of the Bristol artwork. The one of Greta is a very good likeness. My favourite has to be the girl and tiger.
Trixielady good to hear from you and that things are improving and going well for you.
Right, that's it for now. My tummy is telling me it wants food so I'm going to have some freshly picked lettuce and tomatoes with whatever is lurking in the fridge. Love to you all xxxxx
Edinbird so sorry to hear about whats going on omg unfortunately life is **bleep** at times and sometimes we want to see the best in everyone they always say innocent until proven quality and no smoke without fire, so please think about yourself and try not to worry unfortunately only your friend and his EX will truly know and sometimes we can't see the wood for the trees when its people we love , like always we're here for you sweetheart but please don't make his pain yours, bestie or not xx I know its probably not what you wanted to here xx
Morning ladies , hope this will be a good week for you all xx Wishful thinking xx
I back at the hospital for injections number 6 and bloods waiting for heart scan appointment to check all is as it should be!
Doing well so far remembering to take the letrozole. Still suffering with side effects but learning to unfortunately take regular pain relief.
Lovely photos Implausible ,I've still got limited eyebrows & lashes but hair in coming in on head and legs
MBJ love the sound on the walk & Castle but I think 245 miles is a bit far for a walk haha so we went to Richmond to visit the forbidden garden and enjoying a slow walk and lovely lunch absolutely shattered by the time we arrive back home but it felt lovely.
Stay positive and brave my lovelies for the next moves xx
Morning all xx second week back to work and I’m exhausted. Barely slept maybe 4/5 hours if I’m lucky? Got dentist first so I should stay later too to make up the time but not sure I’ll have the energy.
I was still a bit sweaty but that’s not really the issue. My head is spinning constantly as my bestie is currently in prison 😢 an ex has made various allegations against him, pretty serious stuff. I don’t want to go into it and shouldn’t really. So I’ve been pretty down since Thursday since he was arrested and it’s hard to think of anything else. We’ll find out if he’s getting bail on Friday but if not that means he’s not going to be here for my operation, my birthday, all sorts. Knowing some of the chats we have had on here about domestic issues I feel awful that I’ve to tell you this, but I have to believe he’s innocent and my heart is broken that this has happened. Sorry if I’m quiet but I’m just trying to manage each day without getting too upset. I’ll speak to you when I can xx
I love the street art, can I ask what is probably a silly question but are they actually painted on the buildings and if so are they there for ever or do they wash off.
We have been out walking with our grandchildren in the country park adjacent to Craig y Nos castle made famous by Adelena Patti the famous opera singer and reported mistress of King Edward VII. It's a lovely walk quite wild with a river for the dog to paddle in, and grandson who got his trainers wet. Dog is so tired tonight have not heard him bless him.
Sarah, my son is in the process of buying an apartment in Central Bristol. When I go down there to see it, I’ll check out the street art. Pretty amazing. xx
in answer to your question:
“Have you ever been to the Old Operating Theatre museum near London Bridge? It is well worth a visit.”
No I haven’t and I know exactly where you mean. I will have to add to my ‘ must visit list ‘ .
Re. Weekends , yes everything has blurred a bit into revolving around hospital appointments and I would often ask H1 ‘what day is it ?
Walked again today 9 miles. ( easy for me) , legs good, not puffed out so I decided for my birthday to book this Wandering Wild Weekend
as it really appeals .
H1 annoyed me today on the walk today, we argued about going to Norwich ( where to stay, how to get there , how much time to spend there etc) once rads have finished.
He wanted to drive there, and go to a number of places on the way up and around staying for a night at each place ( premier inns) . We have done this in the past ( all the way to Cornwall with the kids averaging 2 National Trust places each day) and when I suggested a train journey plus staying in a boutique hotel he wasn’t interested (boring) he wasn’t interested in walking and camping either (no soft bed) , so basically it was his way (which I have done in the past) or nothing. I was prepared to pay for the boutique hotel too 🤯. He once left me in the British Museum , to see a special exhibition on Indian Art by myself when he heard the ticket price. He literally ran out of the queue with his arms spinning like windmills. This is what growing up in the East End does to you.
So I have simplified it by going off by myself walking and camping.
He can do what ever he wants.
We met back packing in Thailand and I think he needs reminding that I am quite capable of taking off and doing things myself.
SusieB, I did ask him about the blueberries and acid soil. He said pine wood chippings, sulphur and something else ( can’t remember- will ask again) to acidify the soil.
Good night to all
ps drummer boy is at it next door 😬
Where'd everybody go?? Did my weird eyebrows freak y'all out???
Here's a pic of me and my buddies having fun today in Bristol:
And here's some street art as promised:
I had a really good day today but I've noticed something today and yesterday. Whereas with chemo tiredness you just felt sleepy all day, rads fatigue is different, at least for me. I can feel absolutely fine and lively and awake for a couple of hours and then Boom! I hit a brick wall. No warning. No gradual slipping into tiredness. I'm more like I'm driving along happily at 70mph and then I suddenly do an emergency stop! Weird.
So, yes, I left Bristol about 3 hours after getting there because I just couldn't stand upright for one more second! But until that point I was having a whale of a time
Hope everyone else had a nice Sunday too x
Hope we are all enjoying the weekend
For those of you who have been off work for a long time, do weekends still feel special? Or just like any other day?
Deano thanks for the compliment my eyebrows didn't disappear completely, so what you can see in that photo is what is left of my brows following chemo, there hasn't been any regrowth yet. They are a bit scraggly as you can see from this close up, but it's better than nothing
I do miss my old brows though. They were naturally quite dark and full, I never needed to add pencil to them or anything:
(Best example pic I could find of no make up me with my old brows is this charming post op selfie )
Hopefully they will come back to me one day! At least I have had a welcome couple of months break from plucking them
And my head hair isn't growing back as well as the photo on my previous post would have you believe, either. The hairs you can see in that pic are the ones the cold cap saved which are now over 1cm long. Actual new growth is still barely 1mm long and only happening at all at the back and sides, nothing yet on the crown or the front of my head. But hey, I'll get there eventually
Anyway, much more important than me whinging about slow hair growth, your news from your meeting with the consultant was amazingly fantastic!!! Very happy for you!
Such a wonderful feeling to know that there is nothing malicious left in your body trying to do you harm.
I totally would have wanted to see the lump in the jar though too I always assumed they were sent straight off to the lab to be sliced up and examined, didn't realise they kept them!
I'm also glad that they drained your grapefruit and it is now behaving itself a bit better, and that you got an apology for how you were treated before.
And from a personal point of view it is reassuring to hear that your legs are wanting to walk again now. Gives me hope that eventually mine will liven up a bit! I'm now 8 weeks post chemo and still really struggling to walk long distances and up hills. But I don't know how much of that has been exacerbated by radiotherapy (which I started 4 weeks post chemo) as that also causes fatigue. Hopefully now that that is also behind me things will start to pick back up.
Edinbird, definitely keep on keeping on with those exercises, boring as they are, they will take you healthier into your next op. I still do mine twice a day (it has been over 6 months now so they are just part of my daily routine), only takes 5 mins, and they really do help. I notice increased stiffness in my arm/shoulder almost straight away if I do forget them for a day or two. And they are also good practice for rads because like Daisydi mentioned, you do have to lie there for ages with your arms up...
It is so difficult when you see worrying stories from other people in forums. It's easy to say "just don't look", but I get that you do need extra info about the triple negative stuff so will be drawn to communities where they share more specific and relevant experiences.
I guess all you can do is remember that the more people in a group, the more likely you are to see sad stories. But that doesn't mean that you are any more likely than before to *become* one of the sad stories. Eg if there is, say, a 2 percent chance of recurrence within 12 months of treatment (I've totally made that statistic up!!!!). Then if you are in a group with 500 members, you'll see 10 people pop up in that first year with early recurrence and it will suddenly feel super common or inevitable. That's just how the human brain works, it is very quick to panic when presented with even a small amount of anecdotal evidence. But your own odds are still 98% likely - ie almost certain - to NOT get a recurrence within one year.
So yes, the bigger the group, the higher the chances of enough bad news to become worrisome. Just try to count all the people who are happily in remission too, to balance out the fears a little....if you can. I know it is hard
You can tell I have a masters in statistics when I start ranting on about odds and psychology
I really hope that your sweaty nights will start to ease up soon, it has been so long since you got a decent night's sleep Have you asked the doc if there is anything they can do re the hot flushes? Or if they can at least give you a clue how long they might drag on for? If it was chemo that brought them on, then I'm sure the onco has seen it happen before with other patients so should have a view? Sleep deprivation is the worst
Daisydi, hopefully you will get through rads with minimum side effects. They said the same to me about how the boob might harden or swell - that hasn't happened. And I've had no soreness on the skin at all. Just a slightly stiff shoulder and a little tingling on the skin that I can only describe as the feeling you get when you've caught the sun a bit, but before it actually hurts...
As for the arm positions, you do get used to it. I reckon yours is so uncomfortable now because they kept you there for so long on day 1. 45 mins is a LOT of time to stay in position. Once you settle into a rhythm with it it is just 10 to 15 mins a day which is much more manageable. So fingers crossed it will get better for you over the remainder of your treatment.
Like you I try not to read toooooo much outside of this group. So many horror stories out there. But sometimes I do wonder if I ought to try to be better informed!
Susie I like your relaxed attitude to chemo this time around. I guess you have the wisdom of a veteran by now! Sorry to hear that the side effects have picked back up though. Must admit with T mine lasted a fair while too, especially the taste bud thing. Hope you can find some food that still work for you. Mine were cheese and fruit.
Talking of my love of cheese toasties throughout chemo, I mentioned this as an aside to my surgeon as I was trying to explain why I had put on so much weight, and she ratted on me to my GP be careful what you say out loud to doctors
As for Bristol, you can reassure your son, I'm there all the time! It's only 40 minutes down the road from me. And it is kind of equidistant from my house and my other half's house (we don't live together), so we often meet in Bristol at the weekend. Much nicer than hanging out here in Swindon
I'm very familiar with all the street art there. In fact I may have contributed to a few walls there myself
Daidydi, snakes in the sand dunes?? Is that a thing??? Eeeek! Hiw often do you see them??
Rosina - on my last rads appt they gave me permission to swim as soon as I want as long as my skin is still behaving. I'm hoping to reactivate my gym membership for August and be in the pool on August 1st!!! (Next Thursday). Can't wait!
And totally agree that we are very lucky to be going through treatment nowadays! My onco told me that even fairly recently (1950s or so) a mastectomy was incredibly painful, they would remove everything right back to and including part of the ribcage. He said women never really fully recovered. And rads were so much more dangerous before they had modern computers to precision aim.... they would often "miss" and cause serious heart and lung damage.
Having said that I am sure that they will eventually cure cancer with a pill and do away with all the stress and discomfort of chemo etc. And then people will look back to our times with horror too
I will have to check out that book, I find the history of medical technology fascinating. Have you ever been to the Old Operating Theatre museum near London Bridge? It is well worth a visit. Ditto the Surgeons' Hall museum in Edinburgh. I love all that stuff
Right, I'd better get up and showered and off to Bristol!
Catch up with you all later. No doubt I will bore you all with street art photos!
Take care all
Good afternoon Ladies,
Deano , very happy for your good news. Re. Tamoxifen I have been prescribed it once rads are done.
Which brings me to Edinbird, I read up on the drug and got myself into such a state it affected my sleep that night. So I agree with Daisydi, the medics are doing their best to help us so winding ourselves up is counterproductive. Keep doing those arm exercises. Rads can also lead to shoulder stiffness so it’s not a waste of effort.
It’s a month on from my last chemo and I am checking my hair, eyebrows, eyelashes- and then I say stuff it.
Implausible you make me laugh, I had two men for one of my rads sessions and there I was standing in my son’s dressing gown ( the story continued as the female radiotherapist said yesterday ‘oh, you have remembered your sons dressing gown ‘ she remembered it 🤪) which is then used to keep my legs warm . They all look so young in the radiotherapy Center. I feel like something out of ‘Alice in Wonderland’ they all seem amused with me especially as I chatter on about how nice the place is ( it’s only 5 years old).
So far no reactions from being zapped and the cooling gel was fab in the heat. Cold showers too.
Seasidesar bike riding!!!! I must drag my bike out.
Swimming , oh boy , hope that I can go as soon as rads are over.
I feel like I have turned into a donkey with the walking and just keep going head down one foot in front of of the other.
Left the car door open on Friday night so H1 sat in a wet drivers seat this morning, he patiently listened to me say ‘ not guilty - haven’t used the car’. Completely forgot about yesterday.
As I said , through the rabbit hole.
Seeing bunnies on my walks 🐇
Also have gone back to reading my ‘Biography of Cancer ‘ book - I couldn’t during chemotherapy- we are really lucky to be living now and not in the 19th century. The chapter on ‘radical surgery ‘ used to treat breast cancer meant that the whole of the chest cavity would cave inwards as major pectoral muscle was cut and complete loss of movement in the arm 😱 I am on the use of X-rays now . It is an excellent read.
As I said we are lucky.
Done a bit of hoovering. The house needs a really deep clean. Have been out of serious action since October last year. Will have to do a little bit at a time.
Sarah your hair and eyebrows are doing really well. I only seem to have one eyebrow growing back and lashes are still very sparse!
Glad I'm not the only one still with no leg energy. Problem is my knees and ankles and feet still ache quite a lot along with my calf muscles. Did a bit of a better dog walk today especially as it has cooled down a bit and Ive had to take my chances with the adders on the dunes.
Have a nice weekend everyone x
Pleasantly warm and sunny down here in Somerset today⛅☀️☺. Well day 8 after CT and feel as though I've taken a step back although just been for a short walk which seems to have perked me up a bit. My tongue is still a bit sore and my lunchtime BLT tasted a bit like cardboard, well the bacon did🥓😝. As I still can't face normal sandwiches I had to ask my hubby to remove the crusts. How sad is that!? Guess there'll be no red wine with my steak tonight🍷☹ as that won't taste nice either. Anyway on the chemo front I seem to be a lot more relaxed about it. Sleeping absolutely fine, apart from the hot nights, as in temperature not bedroom action🤣😄😅. Not checking for any hair loss, nail discolouration, all that sort of stuff so just taking each side effect as it comes, if it comes.
Good to hear from you Implausible, complete with growing hair and eyebrows. Love the ice lolly warning. Now I know what NOT to do with the Calippos in the freezer😄😆. As for the PICC line and swimming I have got a couple of waterproof covers, one that I could swim with but I'm not 100% sure about it. I did use it in the hotel spa in Aix but that was just in the hot tub and hamam (steam room). I know what you mean about automattically stripping of to the waist. I'm sure when I had my last draining done the nurse could have managed it if I'd kept my bra on. I didn't think to ask. It's funny that you mentioned Bristol as only yesterday you came up in a conversation I was having with my son about music festivals. I reminded him you were the one that told us about the container paintings and he said "She really needs to go to Bristol for the street art". Hope you got there today and had an enjoyable time.
MJB, good to see work underway. Blue slate sounds lovely but sadly impractical for where you wanted it. Perhaps you could introduce it around some planted areas or in raised beds, I'm sure it would contrast beautifully with your grey patio.
Hubby's just asked if I want an ice cream so I will love you and leave you all for now. All the Best, Susie xxxx
Good to hear from you Edinbird. I was a bit worried that you were so quiet. Not too long to wait now. I had to wait from November to January for my 3rd surgery so know exactly how you feel. I only use this forum as I really dont want to read too much. There is nothing we can do about it so I find its easier not to read rather than read and worry myself sick. Think I read my fair share when I was diagnosed and one thing I do know is that every single one of us is so different, reacts differently, responds to treatment differently etc. I remember my surgeon saying I was cancer free after the 3rd op but I didnt react as I couldnt quite believe him. I'm now stressing about my rads. Ive only had 2 and they have said that my boob will swell and I will probably get sore under the boob and in the armpit. I think my arm has already swollen a bit but both of my arms have been so so painful due to the position of them during treatment. I would recommend anyone to try and pre-empt this with exercises that really stretch your arms out backwards and I mean really stretch. In fact my good arm is much worse than the bad side due to the position of the machine and they have to position me slightly off centre so it really has to be pulled up. Are you back at work now? At least that can take your mind off things.
Must try and do some housework now in case it gets too hot again. Hope everyone else is ok.
Hi Deano xx so glad your margins are clear and you can move on. Getting a bit fed up of doing my exercises knowing I’m going to be back to square one soon. Not soon enough... it’s still 12 days to wait feels like forever knowing that there are still cells in there that want to get me! I’m having other forum worries as there’s someone on there who had a partial response to chemo, lymph nodes involved and has just finished her oral chemo and she has just been diagnosed with a recurrence... I know each case is different but when things look similar it’s hard not to feel it.
So tired after too many hot nights. I’m able to fall asleep at the moment but I still wake up boiling and sweating. I know I hated being cooped up but I’m almost looking forward to the surgery again so I don’t have to get up in the mornings! Although when I do the sweats seem to stop. Can’t have the window open for the foreseeable since it’s forecast to rain every single day for 10 days!!
Implausable you look beautiful darlin and your hair is longer than mine and you’ve got eyebrows mine are yet to come and I’m now 7 weeks post chemo. For some reason it doesn’t let me post photos I’ll try and get one on of my hair.
Well got my results it was good news my cancer lump has been removed with good clear margins and out of 19 lymph nodes only one infected I asked if I’m now cancer free and surgeon said yes it’s now in a pot down the corridor ( oddly I would have liked to have seen it wished I’d asked...) my arm was drained again and it seems to be going down as it not filled up again after last weeks issue with my arm pit I burst into tears. I put a complaint in and they weee bending over backwards on thurs but it shouldn’t have to be this way....
I was so shocked with the good news as I was prepared for the worst as every time I saw the surgeon it was doom and gloom and he initially told me I had cancer....I couldn’t think straight oddly more relieved than ecstatic with the good news and I did not know what to ask him it seems a blur!!!!! I’m now waiting to have radiation therapy which he said is a preventative and I start tamoxifen on Monday for 5-10 yrs (anyone else on this)?? So I’m nearly there with treatment but not yet so phewww
i had a great holiday in Skegness it was hot hot hot my legs have improved and I’m walking more and once my arm is better I’ll be happier
Love you all and I hope whatever your dealing with it will get better and remember if they are treating us they can cure us and we are all worth it...,,,
You all take care and keep the updates coming 💖💖💖💖💖💖🙏
Finally, a do-nothing day (or at least do-little) with a nice lie in Time to catch up with my lovely ladies!!
Looks like I haven't posted substantially since Tuesday! I missed all the excitement of sticking body parts in yoghurts to stay cool That's almost as bad as this! :
Also giggled at the thought of Marlyn frozen stuck to her freezer have any of you seen Dumb and Dumber?
Seeing those runner bean photos really reminded me of being little when my dad used to grow all sorts of fruit and veg in our tiny postage stamp sized garden. I never did enjoy eating them but I used to like helping my mum pick them. Pity your taste buds were playing up by the time you came to eat them Susie Hopefully next time they will taste better.
Rosina glad you are getting on well with rads. Never occurred to me to take a dressing gown! I just brazenly wandered around with my boobs flapping about
In fact one day I went for my reflexology appt straight after rads, went into her room, took off my shoes and socks and then started to take off my t shirt and she was all "what are you doing????!!!!" Just became second nature by the end to strip to the waist, I was doing it without thinking
It was freezing in my zapping room too, they are a little bit over aggressive with the aircon....
Trixielady sorry to hear that you are still suffering so much from chemo after effects. Hopefully you will feel a little better every day and will be feeling up to going back to work soon. The normality of the work day does help take your mind off all this nonsense.
Susie you and I are so different. You typed "it's way too hot to be indoors". On hot days I am the opposite...."it's way too hot to be OUTDOORS" I'm definitely not much of a summer person.
Seaside, I'm very impressed you've been managing bike rides during rads (lovely view of the lake). I've been keeping up my daily walk most days but it has been a real slog! Have only been hitting 7k or 8k steps a day which I guess is better than nothing, but that has felt like running a marathon! My legs feel like they have been weighed down with concrete. I don't even think that is down to the rads, as I felt like that even before zapping started. I think it is a hangover from chemo. Looking forward to getting back into the gym and working my muscle strength back up a bit....
Rosina deffo do the Jurassic Coast walk, such a beautiful part of the country! My ma in law used to run the gift shop and cafe/ice cream parlour down at the beach at Lulworth Cove. We took many a walk from there, in one direction you could walk up over the hill right over to Durdle Door. In the other direction there is the petrified forest and the army range clifftop walks. Love the place. Hoping to get down there soon although I know I'll struggle this year with the uphill parts!
Your point about babies needing general anaesthetic for rads had never occurred to me, but obviously they need to lie still. I did see a thing pop up on facebook about body cast type things to keep older children still. It was probably one of you guys who shared it! They were all painted to look like superheroes or Disney princesses. They were cool. I'll try to find a photo....
Even better, here's the article:
Edinbird great news re your best case scenario. And I'm glad you now know what is happening when This year has been such a long slog for all of us and I'm so sorry that you still have so much more to get through. But get through it you will. We all will. And we will look back on 2019 as our "annus horribilis" (to quote her maj), but also the year that made us stronger.
Daisydi, how are you getting on with rads? Sorry to hear that your first session was such a faff. Longest I've been on the bed with my arms up was about 35 mins the day the machine was being temperemental, and that was long enough. Usual sessions only took 10 to 15 mins thankfully.
I haven't felt a hot/burning sensation in the boob skin from rads. Did that calm down as you progressed? If not I'd raise it with the radiographers...
Deano that fluid swelling under your arm sounds horrid grapefruits are big!!! Glad you managed a trip away though despite the discomfort.
I guess I half understand the point that the body needs to reabsorb the fluid but that is no excuse for the nurses to be arsey with you! How would they like to be in your position?? And also they need to help your body learn how .... with lymphatic massage etc. Not just send you away to get on with it when it clearly isn't yet figuring it out on it's own.... grrrrr.
I'll have to look into that Biotin 5000 stuff as I wish my hair would hurry up and grow out a bit! But as you say, it is cooler to have short hair in the hot weather.
How did your op results meeting go?
(Trixielady, Skeg Vegas = Skegness )
Susie glad to hear that your T side effects didnt drag on too long. May it continue to not batter you too hard.
Nettie I like the wet flannel look! I'm lucky that my house is old (ish, 1930s) and has thick walls so it stays pretty cool even in really hot weather, and I've mainly stayed indoors this week (either at the ice cold rads hospital or at home), saving my daily walk for about 8.30pm when it had cooled off a bit. So I've survived the heatwave pretty well.
Daisydi hope those power cuts sort themselves out! And that you get your dip in the sea soon. I've also been given the green light to go swimming as soon as I feel ready as long as my skin doesn't break out (actual weeping or peeling etc) which touch wood so far it hasn't. My gym and pool membership is currently frozen till September but I might put it back in action August 1st and start my swimming again. Have missed it so! Breast stroke is supposed to be very good for lymphedema prevention too.
And talking of swimming, Sonia that is the loveliest, happiest photo ever!!! Looks like you thoroughly enjoyed your swim!! PS happy anniversary
Great to hear you are also nearly at the end of rads. The time goes quickly doesn't it
Susie.... would it be possible to swim even with your picc line if you wrapped it up super well with something waterproof and then wore a wetsuit over the top?? Although I guess with chemo there is also a general infection risk to consider. But swimming in the sea is fairly germ free I'd have thought compared to a public pool?
Rosina, I have never had notification emails from this forum, I didn't even know you could? I have a short cut directly to our Feb group thread on my phone so I can easily check in regularly and see what's new... and I can promise that I do read all the posts, I'm here at least once or twice a day, even when I don't have the energy to reply. I can't imagine going through a whole 24 hours now without checking in on my ladies
Sar it's interesting that you don't have to breath hold on your boost week, I still had to. But then again you had the markup and I didn't. From what they explained to me it's because my boost was an electron boost and yours was proton. It's all very science fiction isn't it!
The boost bit is supposed to be the hardest on your skin as it is more concentrated in one spot. But I'm happy to report that , touch wood, my skin is still fine , thanks to the Aveeno. So I'm sure yours will sail through the last week too.
Enjoy your weekend in Kent!
Very jealous of those of you who got to see the big storm on Wednesday night. I slept tight through the whole thing!! I was so annoyed when I woke the next day and facebook was covered in gorgeous lightning photos. I love a good thunderstorm, me! Even the cat didn't come looking for comfort, so I assume she slept through it too Sorry to hear it upset your dogs though Daisydi and Nettie
MBJ you have rather extensive "grounds" there! Hope the work is all done quickly and to the satisfaction of the lady of the manor Can't wait to see more photos when it is all done. Love the doggies too
Rosina glad you had a good day at work yesterday. It really is good how it takes your mind off everything else, isn't it. Kind of shows how much the cancer stuff has been dominating our lives this year, as a few hours not thinking about it is so refreshing! Recuperation time at home is obviously good to help out bodies recover, but I sometimes wonder if it has the opposite effect on our minds, too much time to think isn't always a good thing....
Thanks for the link to the "garbage warrior homes" thing. My sister would probably say I already live in one!!!
Phew! That is me caught up. Only took 2.5 hours
As for my weekend plans. I'm going to a local "zine fair" this afternoon. Zines are kind of home made little comics or magazines , sometimes political, sometimes about music or art etc. It is the second one they have had but I was too poorly to go last time, so I don't want to miss it again as I know the young girl who has organised it and I don't want her to feel snubbed
And tomorrow I'm hoping to get to Bristol for a street art event if I've got the energy....
For those of you who haven't already seen it on Facebook, here is my current sleepy face:
Hair is starting to emerge
Love to all I've mentioned and even more to the rest, hope the quiet ones are ok
still no messages coming to my email ( inbox or otherwise) don’t know why so like SusieB I guess I will have to access this group via the website.
Maybe this is a good thing as they were coming to my work email.
Anyway, I went into work today after my rads appointment. I got a fair bit done ( prep for September) and it just so happened that one of my colleagues also came in after lunch ( as I was thinking of going) so I ended up staying more as I am inheriting students from her class and I had missed out on the so called ‘transition ‘ meeting where information gets passed over to the new class teacher. I have to say I actually enjoyed myself as I didn’t think at all about bc.
Got home at around 3.20 pm and did my stretches ( as I hadn’t done them in the morning).
I have convinced my colleague to sign up for the Jurassic Coast Mighty Hike.
Have got my 10,000 steps in this evening.
Gorgeous House MBJ, we walked past many a gorgeous house on the Thames path.
I think my ideal home would be a light house.
I also like the ‘earthship’ homes made out of car tyres, glass bottles and other recycled items. I first saw them in the film ‘Garbage Warrior ‘ . There is an ‘earthship’ home just outside Brighton ( visited with my students couple of years ago) it is very beautiful.
Well done Sarah with finishing rads, Seasidesar you’re almost there too👍
Enjoy your weekend everyone 🍉
PS the full film is worth watching , just to see how the ‘establishment ‘ in the profession of Architecture tries to steamroller a creative member of their profession ( in the USA but I would expect here too if somebody came up with good ideas 🤪).
We should have sold our garden to Persimmon or Redrow instead of building our new house on it! I think they would have put up about 6 houses with tiny gardens 😃, and I would be rich.
Daisy, those storms have a lot to answer for but I guess it gives you some respite.
Sarah! Great to hear from you, was getting a tad worried. Rads all done, yay! Hope the next 2 weeks are minus complications for you. Enjoy your nap.
MBJ, how exciting to see the work in progress. Cute doggy photos too 😊
I've just returned from my 15th zapping. They were running late which is unheard of as I'm usually one of the first people through the door in the morning. No more breath holding next week as I'll be changing over to proton beam radiotherapy for my booster sessions. Woohoo!
I'm off to Kent for the weekend as it's my aunt's birthday so I might be offline until Monday.
Have a lovely weekend everyone.
MBJ, wow how lovely to have such at lovely large garden and driveway, won't it be lovely if they could do tarmac in a better colour than black or can they?? Xx
Here are some photos of the progress in the garden and drive. Tarmac going down tomorrow, not my first choice I wanted blue slate but told it would go to dust after being driven over numerous times. It's a large area so I suppose the Tarmac will be clean. Chosen my patio tiles they are very pale grey almost white with a little sparkle in the sun. Probably next year's sun but at least it's a start.
No apologies required, just happy to know you're ok. Can't believe you've finished with rads. Where did that time go🕛🕧🕐🕐🕜🕑🕝? Enjoy your nana nap🛌🏾😴😴 xx
Apologies for being AWOL for a little while. I've been reading all your posts but just haven't had the energy to join in.
I definitely want to reply to everyone properly when I get the time to go back through the posts, but until then, hello!!! And much love to everyone.
Very pleased to report that I'm now finished with radiotherapy. And I can honestly say that it has been no bother, apart from the travelling to and fro. I've been very lucky with my skin, no redness or soreness at all yet - although I do appreciate that the worst 2 weeks are to come. Literally the only sign that they have done anything to me at all is that I have a few new freckles in my cleavage, and a kind of tingling feeling like I've caught the sun a bit. The Aveeno definitely seems to have done its job.
I am feeling the fatigue, however, this last week. And again, that is likely to get worse for a couple of weeks before it gets better, but I can live with a sleepy head and legs that feel like they've been filled with lead for a little longer...
I'll get back to you all properly after I've had a little nana nap!
Due to storms, power cuts etc. etc. my r/t session for today has been cancelled. Feeling quite relieved to be honest as I am so hot .....
More bearable here in Stafford today thank goodness. I can ditch the wet flannel on my head now. Rosina, I have been having trouble with the site too. A few days ago I suddenly realised my email notifications from the forum were going into “junk mail”. I kept marking them as not junk but it still happened. Then today they are appearing in my inbox again. Weird!
We had the thunder and lightening on Wednesday night. Two terrified dogs. I ended up having to give one of them diazepam (vet prescribed) as she was in such a state. Quiet night last night apart from rain.
Sonia, I love the pic. You look so happy. I hope everyone has a better, cooler day today. Xxx
Hi Susie, its like living in the tropics at the moment. Thought it was meant to be cooler today but it is still HOT. All my appointments were originally 2pm but when I got there the other day they had changed them all to evening ones to fit in people that obviously need day appts more than I do. In some ways I think it will be better as I will have the whole day to do stuff, parking will be easier, not so hot and shouldnt be away from house for so long. If it was dark in the evenings I wouldnt want it but think it should be ok. Will let you know x
We were writing and posting at the same time. Last night's storm sounds pretty bad⛈⛈🌩🌩. Hope you and the dogs have a better night tonight. Will the evening appointments be better for you? I'm wondering if I'll be able to request evening zapping as my hubby will be driving me in every day. If the travelling is too much after going to work he has the option of working from home sometimes. Can't fault the MOD for the support he's getting but as many of them are ex or currently military they work very much as one unit so help each other during difficult times. xx
A bit cooler today after yesterday's blistering heat. CT side effects seem to be subsiding since their peak on Wednesday. Tongue still feels a little swollen and sore so will continue with the mouth wash. Also not getting full flavour experience of coffee, cheese or wine☕🧀🍷☹. We poured some wine from a small bottle into last night's risotto and I drank the rest, less than 1/2 glass☹. So all round CT side effects haven't been as bad as on FEC so perhaps things were worse for many of you as it was given on the back of FEC. Who knows?
Seaside Sar, glad to know your cat is recovering from yesterday's heat. As for how the skin reacts to rads I'll be able to test the theory of daily moisturising as like you I've been doing that for many years too.
Rosina, glad you found us again and hopefully caught up with everything. To be honest I only use the website to access our fantastic group.
I'll be thinking of all of you who are having rads today, I think there's quite a few of you now.
Have a good day each and every one of you xxxx
Morning, well we had the storm from hell last night. I have never ever seen lightning like it and the wind! Oh my god. Needless to say our power was off from about 10-2am, dogs were terrified and it was so so hot. I have hardly had any sleep. Got number 3 rads today and then for the next 2 weeks all my appointments are in the evening. Hopefully will be quicker as the last 3 days I have been out of the house for 4 hours and finding it really hard to keep on top of everything as when I get back about 4.30 Im too tired and hot to do anything. Skin is ok so far but they said I will probably take a couple of weeks to react if I am going to. Maybe, just maybe I wont react to this treatment. That would be so nice. The review team yesterday said I should have started on the Anastrazole so will have to chase that up but I want a bone scan first to measure my bone density.
Seaside and Sonia you are so nearly there and Sarah you must be having your last one today. Someone rang the bell yesterday. Felt very emotional for them.
Speak later x
Good morning lovely ladies,
Never thought I'd say this but thank goodness it's not sunny today. That was soooo uncomfortable yesterday and last night, I was in a mega grump because of it. Nettienoo, your photo made me smile. It was impossible to stay cool yesterday. I almost stuck my head in the freezer but then thought of Marlyn when she got her tongue stuck so I changed my mind. I was actually glad to go for my rads because it's lovely and cool in there. Even my poor cat was completely out of sorts due to the heat. She didn't eat or drink all day and looked in such a sorry state this morning. Thankfully I tempted her with some special treat food this morning and she has perked up a bit.
So the one day where I could have a lie in because my rads are in the afternoon, and guess what, I'm awake at 6.20am. Typical!
Sonia, I'm glad you got to go in the sea, you lucky thing. Must have been lovely. Thanks for the tips on rash vests.
Daisy, good to hear your second session went well. Did your skin feel any better this time?
Glad to hear you're feeling a bit better, Susie. You're kicking its butt, well done 😊
I have got my last breath hold session today and then 5 days of booster next week. The end is in sight. Yay! They said my skin is looking really good and they asked what I've been using. Other than Aveeno in the morning and some aloe vera gel at night, nothing really. Maybe it's down to years of moisturising? Who knows.
Anyway, I hope you all have a good (cool) day.
for some reason your post are not coming into my inbox ( initially I thought everyone had gone quiet because of the heatwave) , when I checked again this morning ( again nothing) I decided to access via the breast cancer care website and then find the February thread.
I have missed lots of posts l😦
Glad that you are all still out there.
Great photo Sonia28.
Feeling much happier now, that I have been able to check in .
Daisy, I tried a scarf on Sunday, I was so hot, it make me really uncomfortable.
A rash vest usually goes under a wetsuit, but they have a uva factor in some, just been checking them out on mountain warehouse, they have some on sale, I saw a really nice roxy one but it did have the roll neck, they are very fitted but I think It might be my best bet on the beach, I’ve bought a small sun umbrella too, roll on next year XX
Well done Sonia for making it into the sea🌊🌊🏖☺. You look as though you enjoyed the experience. Oh to be without my PICC line☹xxx
Sonia what's a rash vest and where do I get one. Im having real trouble trying to keep my neck out of the sun. A scarf was mentioned but I just cant bear it with the heat
Well I had another med review after radiotherapy today and asked about sea swimming, she said I could try it, I said I would have wet suit, rash vest and will shower as soon as I leave water.
Never enjoyed the water so much, jumping waves, well being drowned by waves more like it 😂😂
No soreness yet, showered and dreamed up.
Also thought my rash vest is good at protecting my neck area from the sun, so am going to get another one, as not sure the sun factor hasn’t been worn out in this one. I’ve only got 3 more rads to go 🎉🎉
hope everyone one else is doing okay 😘😘😘
Nettie such a good look but needs must hey?
Just returned from my no 2 rads. Bit quicker today and I took painkillers before I went in. Had a review also. Have got them all discussing about whether to go in the sea or not. They agreed I could go in as long as moisturised well beforehand kept my skin covered up and showered straight after as the sea water does dry your skin out. Cant be bothered to go today as its too hot. Yesterday got back and we had a power cut and today got back put the fan on and it fused the whole house but I thought it was another power cut so now grumpy as too hot and have no fan. So looking forward to some cooler weather.
Hope everyone is coping ok in this hot weather. Not the best time to be having rads!
Love to all x
I am still getting issues too Trixielady, mainly under my arm not exactly my arm pit but more where the bra fits sort of extension of the boob area. My reconstructed breast often feels swollen too. I must say it's not the most comfortable of feelings. I think mine must be down to some lymphodema now as my last surgery was December. I am exercising and dry brushing daily, and my friend who is a qualified reflexologist is giving me four days of intensive treatment just for lymphatic drainage. After that I will have weekly sessions. Also thinking of doing aqua aerobics and possibly Tai Chi as I have read that it's really good. Can't do stuff like yoga or pilates as I have had a knee replacement and I am not allowed to kneel on it.
Deano your underarm must be so uncomfortable why don't you try them again and say how much discomfort you are in. I had a drain too but mine blocked after about three days so had to come out. Hope you feel better soon.
I have escaped the workmen and the dust outside my house. Will take some pictures of the progress when I get home. X
Hot and sunny again🌞. I'm feeling much better today. I have a couple of aches and pains in my back and legs but not too bad. A couple of paracetamol soon sorted it. Generally feel better than yesterday, may even take a little walk later so long as it's not too hot.
Edinbird, I'm glad to hear that your surgeon has come up with the best case scenario. It's such a shame that she made you feel bad about the questions you asked. No matter what she thought about them they were obviously important to you. I must admit when I go for appointments I go armed with a piece of paper with trigger words on so if something isn't covered I'll ask. Never done that before. As for the armpit scar I was shocked when I first saw it as it was about 3 inches (8cm) long, then logic took hold and in reality when the arm is relaxed it's less than 2 inches (4-5cm) long and well hidden. My scar, although still red is relatively flat and I'm currently happily wearing a sleeveless top.
Daisydi, hope you have a better rads day today. I wonder if I'll have boosters too as I was lumpectomy and full ANC. On the plus side my rads won't be until Oct/Nov so should be much cooler weather.
Have a good day everyone. xxxx
Glad to hear you managed to get away for a while☺, not such good news about your underarm swelling☹. I can't understand why your nurse was reluctant to carry on draining the site. Where I am it's a case of if it's too uncomfortable give us a call and we'll sort it. They are happy to keep going until your body sorts out what it needs to do. It seems as though each hospital, surgeon, oncologist, etc have their own way if doing things and sometimes it's sheer luck that we are happy with the path they set us on➡️⬆️⬅️⬅️. Hope you receive the news you are hoping for today. Let us know when you feel ready. xx