Im done and home. Much better tonight. quickest its been for treatment so I feel much better now. Still want to try and change some of the late ones though. Spoke to breast care team today and they are sorting my DEXA scan and said I should really start on the Anastrazole so will get prescription tomorrow hopefully. Much go and cream up now. Thanks for all your support and MJB your hair does look fab xxx
Rocking the new look MBJ,
thanks for the hugs SusieB.
I asked H1 again about the 3rd ingredient for acidifying soil and he said ‘peat’ . The wood clippings are very important though. Off to walk, feed the ducks and eat some blueberries. A friend came round this afternoon and H1 made sure she was fed and watered, as I said practical. I do appreciate this.
Re. the hiking in Dartmoor it is a guided group of 6 of us.
Sorry I forgot to say you can crop your photos on your phone if you go into edit mode, mine then save in edited photos in my file. I have to do this every time I post one.
Firstly thanks for liking my hair. Susie B the colour I used washes out and has no bleach in it so hopefully won't harm my new hair. Will be a while before I use anything more harsh if ever to be honest. As for the bras I think you might find that you will need to wear a good support if you have had your lymph nodes cleared as I find that's where I get most of the swelling and discomfort on my bra line under my arm, the firmer bra seems to keep it in control a bit more. But of course this might also be due to me having an implant.
Hope you are all having a reasonable day. I am off out in a bit to take Isabel (granddaughter) to have her nails done, we are all off to an engagement party on Friday and my sister is having a big party on Saturday for her Pearl anniversary, retirement and birthday WAW.
Firstly quick post surgery/chemo update. My swelling from surgery has definitely reduced since I can now wear my normal size 34c post surgery bra without an extender☺ and my size 36 ones are are at the smallest they can go. Just wondering when I can wear my normal bras again🤔. As for any lasting chemo effects, food still doesn't taste quite normal but otherwise everything else seems to have settled down☺ until the next round☹. I went out for a walk around our village yesterday and took some photos on my phone. Unfortunately I can't post them as they are too big - I forgot to reduce the number of pixels - so I'll try again when the weather improves. Didn't feel as tired following my walk as I did 11 days after FEC. Hubby has suggested taking me to Iceland, the country not the shop Implausible😅😅, when all this is over with the aim of seeing the Nothern Lights. I've today been looking at the website of the company we've used in the past and ordered a brochure for inspiration. Talking of holidays I've also taken out a new multi trip policy. Our current one expires next month. I used one of the brokers recommended by Macmillan. They came up with fairly reasonable quotes and the questions asked online weren't too bad so it wasn't quite as traumatic as I was expecting. That's enough about me. Onto the posts.
Daisydi sending you ❤❤❤❤❤ as you sound as though you could do with a few. All that travelling, having rads and getting home late is bound to reduce you, and let's face it, any one of us to tears. I know I was feeling guilty about my hubby driving me when it comes to my rad sessions but as I hear how tiring it can be I'm not so bad now.
Love the hair colour MBJ. Might try that before I commit to something a little more permanent in pink once all this nonsense is over and I can start to colour my hair again, which won't be for ages yet😭😭.
Rosina, hugs coming your way too❤❤❤❤❤. This Barrying bc seems to catch us out emotionally when we least expect it. Wise advice from the nurses about doing the things you enjoy. As for couples counselling I don't think many men would contemplate it. I think it's in our nature to talk about anything and everything but men don't seem to be so open. From what I glean from what my hubby tells me there are 3 of them whose wives have been diagnosed with bc, one recently diagnosed and the one who passed away last year (not bc related) and me. They will ask after the wives but not ask each other directly how they're (the men) coping. Men, in general, just don't seem to talk about personal stuff. Glad your Tamoxifen meds have been sorted.
Hope all of you out there having a rough time at the moment see some improvement soon. Think of each and everyone of you in this Feb group all the time. We will get off this rollercoaster eventually and enjoy a ride on the Lazy River. xxxxxxx
We used L'ORÉAL Colo Rista this is light pink lasts a few washed but just bought medium wear now as it looks brighter. But I did not need all the tube as not enough locks yet. Easy to do just squeeze the tube and rub it in. Isabel knew to put vaseline on my forehead and around my neck though. 15 year olds know all the beauty tricks.😃
This is aimed mainly at you but girls I hope it cheers you up. My granddaughter gave me a colour makeover yesterday. It's lighter than we thought but I like it!
totally empathize with you on the crying.
I am on rad #6 (today) yesterday when the radiologists (lovely girls) asked me how I was I welled up and told them my life history !!! They were excellent, didn't leave yesterday till 1pm (more off loading at the Macmillan Cancer Centre). I didn't feel like posting as it was all too much.
Much better today , a better night's sleep - I am sleeping in our spare room, nurses checked in with me again today. I was told to do things that I enjoy, spend about 30 minutes per day on school prep and continue to prioritise myself as even though it does not look like radiotherapy has an impact on the body it does.
In my review today , I discovered that I should have started on tamoxifen 3 weeks post last chemo.
So I got my tablets today and have taken one. H1 has been warned that I could get even more emotional so he thinks its best that he does not talk to me at all
I did suggest couples counselling but he is not having any of it. He does practical.
Re. driving I have driven myself up today and yesterday. Twice last week, 1 bus, 1 with H1.
It's OK Daisydi, hang in there on the rollercoaster (I HATE rollercoasters). We are all with you.
I can imagine how relentless having radiotherapy every day is. It was a big factor for me when deciding between a lumpectomy or mastectomy as I did not need it with the mastectomy choice. When I had to make up my mind it was only 6 months since I had cared for my 93 year old mother in law who had had radiotherapy for a cancer in her neck. They kept her in hospital for eight weeks for daily treatment. At her age it was cruel, and I think she would have been better off spending her last few months at home. Which never happened. So I made a decision mainly from the heart rather than head. But whatever we choose has its sideffects. The implant is not the most comfortable thing to live with. Why anyone would have them for vanity I will never know. Hope you feel better now. Get some ready meals from M and S in for after treatment and bu..er the cooking.
Hi Trixielady, I have 17 sessions left! I am not a good passenger in a car as I get car sick so I thought I would be better driving myself if I was able to. I will go on for as long as I can manage. I am currently chasing up my DEXA scan before I start those hormone tablets.
Love to all x
Morning lovely ladies
Daisydi, I feel for you its still so emotional and obviously the rads carry side effects having a good cry really helps , is there no chance of any company to make the visits easier how many apps do you have left?? Xx go girl you can do it xx
Implausible how it going with your rads?? Xx
can totally empathise with you on the emotional front, although rads is nothing like chemo I found it unrelenting....it all just builds and builds.....in the first week I managed to drive myself twice...after that I just didn't have it in me, driving needs too much concentration and I wasn't capable.....I would sit there in a zombie state.....on the last day ( had to go in twice) I cried all the way home......
do you have anyone that can drive you? Xxx
So Ive had my 3rd rads. Left home about 5.20 and got back just before 9 and then had to cook dinner! Was on table for about 40mins again. They had trouble setting me up. Different room, different machine. They were running 40 mins late which I was told doesnt happen for the evening appts. Lets see what today brings appt is a bit earlier at 5.45, yesterday it was 6.30. I am driving myself and not sure if I will be able to continue if I get too tired. Sarah would you have been able to drive yourself every day? When I came out last night I was texting my sister to let her know I was leaving, walked into a wooden post, got to my car and then couldnt find the ticket. Thought I must have dropped it when I hit the post so went back and luckily found it on the floor. I was laughing with 2 ladies who were watching me then I burst into tears and ended up crying all the way home. Dont know what is happening to me. I am an emotional wreck!
The immunotherapy trial sounds promising Edinburd. I don't think I could have done that because I had surgery before chemo and I responded well. (I was meant to have 8 at first, but it was reduced to 6) I suppose they can't just tell us to take asprin as a matter of course yet, but as you say, you don't want to take a placebo if there's a chance of asprin making a difference xx
I have had the one infusion, I felt flu like for less than 24 hrs a fine after that. Then every 6 months for 3 years.
I have just started the aspirin trial, I was told it have to be started within 6 weeks of my radiotherapy finishing.
Well I feel the tiredness has kicked in, I’m with you Sarah with the difference between the chemo fatigue and chemo tiredness, I slept for an hour this afternoon, and yesterday haven’t done that in a long time.
Only one more to go, I’m slightly red on my scar line, but no broken skin.
I have been reading but we are up and down to the caravan so signal isn’t great, I can read as it loads but then I move the phone and not enough signal to reply 😂 kids hate it 🤪🤪
I can’t get back on the site to catch up with everyone, it keeps taking me back to our first posts.
I’ll try again later,
i did remember Sarah asking what weekend feel
like as not working, they are different as hubby is around, i still look forward to them, it’s strange being off with the kids this year.
hope your all keeping well xx
I’ve been offered the aspirin one and C-TRAK where they monitor your blood for DNA from your lump and if they find any you might be randomised into having an immunotherapy drug every three weeks by IV for a year. You need to have not had a complete response to chemo for that one unless there are samples they hold from biopsy. I won’t go onto them until I finish all the rest of my treatment so I’m not sure why it was too late for aspirin for you since it seems you start that trial after treatment? If I can do both I’m minded to do the monitoring period for aspirin and then pull out as there is a chance you’ll get the placebo and if there is any chance of aspirin helping I’d rather have it since there’s so little else for us. I know that’s not especially fair but bottom line TN is nasty and I’ve got to think of myself.
Hi Edinbird, it sounds like your dad had horrible side effects after the infusions. Personally I've found them to be ok.
No, I wasn't offered any trials. I did mention the asprin trial, but that was near the end of my treatment and my onc said it was too late to do it and she didn't suggest anything else. I don't know if that was also because of my age-I was 58 when I finished chemo. Zoldronic Acid was the only thing that was offered to me. What trials have you been offered?
I thought I was going to be monitored more, but my onc discharged me when I saw her in Dec, so now I just have the yearly mammogram and check up with the consultant.,which I've got next month xx
Re the bone stuff - my dad had infusions for osteopenia. The first one gave him flu symptoms for about 6 weeks! He only needed three infusions though and the other two were much better. No idea if he was offered tablets he never said.
Jencat are there any trials you can do? I’ve been offered two once my surgery, rads and oral chemo are finished. Seems forever away... but I’ll gladly take whatever they can give me for TN
I know Marlyn, I'd rather that they didn't give us a choice!
Assume Clodronate is the same as Zoldronic? Taking the tablets for 3 years is quite a long time. I was told I could only have Zoldronic for 3 years, but if you were told 5, I might enquire about that as I'd rather have it for longer if it's possible-I'm TN, so the Zoldronic Acid is the only thing I can have post-treatment. Someone else I know as had it-not for cancer, but a problem with her bones and she was also told only 3 years, but i can't remember why.
I suppose if you'd prefer to have the infusion, you've got nothing to lose if you can revert back to the tablets if you don't get on with them xx
the tablets are clodronate....2 tablets everyday for 3 years....the nurse told me the infusion would be every 6 months for 5 years...she said it was absolutely up to me but it would be easier to stop the tablets if they didn't agree with me....and when she said if it was her she would be opting for the tablets first...I thought...well so will I then! But I'm now having a fe think.....oh eck!
Marlyn, did the nurse say why you were going to have tablets rather than having the infusion? I'd not heard of the tablets before and wondering if there's any advantage to taking them daily rather than the 6 monthly infusion that I have xx
yes i can, the nurse wanted me to go on the tablets first saying if I couldn't get on with them I could stop immediately have a wee break then infuse....xx
I think you're right Marlyn, the tablets do sound a bit more of a palaver! I'd probably forget to take them half of the time!
The infusion itself only takes about 30mins and then a quick line flush afterwards. If you changed to the infusion, but didn't get on with it, could you change back to the tablets? xxx
Hi Susie, yes I have been reading your posts and so sorry to hear that you've got more chemo to go and surgery still to come. Thank you for your sympathy re mammogram. I've got to wait until I see my consultant on the 20th before I get the results! I must admit I am feeling a bit more anxious about it this year!
When I was told I had TN bc in June '17 I hadn't even heard of it and the two consultants I saw didn't make a big thing about it being TN. It was only my oncologist who seemed a bit more doom and gloom about the TN diagnosis.
However on a positive note, my daughter works with a lady who had TN over 6 years ago and is fine and I've friend who had it about 10 years ago, so I try to remember that when I have a wobble! xx
Am leaving in a minute for number 3. I will ask them today. Not looking forward to it. Im hot and tired ...
yes, I had one during rads....found out I was osteopenia .....said I would be getting another in the next couple of months....
i must admit...the more I ponder it the more appealing infusion sounds....I'm going to be ruled by tablet taking! Just about remember my anastrozole at 7 pm.....
im surprised you haven't had you density scan yet, you need a bench mark at least...xxx
Maryln my friend has the infusions and has no trouble with it. That is what I will opt for whenever they decide to offer it to me. By the way did you have a DEXA scan before you started on the hormones to measure bone density? I have not been offered one although they want me to start Anastrazole now which I am resisting at the minute.
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!!