Lily, Italy, how lovely, I’ve always wanted to visit but never got round to it. Make sure you take plenty of painkillers for the head but hopefully you won’t need them. Himself is in bed with a stinking headache at the moment, he never gets one usually. I was most unsympathetic, I just said welcome to my world, now you know how I feel for a few hours every day. Bless him, he has so many other problems I shouldn’t have said that, I felt so mean when he said he didn’t know how I could stand it and looked so sad. Hope everyone is having a restful evening. I’m off to bed now, reading a good book, much better than telly xx
Evening all! Lily you do know we go everywhere together virtually!! Have a fabulous fabulous time in Italy. No offence taken on the job front, but very welcome support. I have always loved my work but would definitely bite the hand of anyone who would say I can stay at home and I’ll sort the bill’s and mortgage!
I’ve been reading around Cowden syndrome and if I have it, I think I will be using the NHS budget in annual tests!. Mum is okay now but my daughter is in a bit of denial.
With a willow in the back garden and the magnolia in the front I have fluffy thoughts in the garden! Thinking of all of you and especially you Beth. Rubycat I think you are probably consumed with family stuff but adding to the collective hug xxx
Look we’re on page 200 and nearly 4000 posts…
Haha! I checked today, I haven’t won the Premium Bonds this month, so work tomorrow! I want to go to Herculaneum- my sister said it’s fabulous but lots of men’s bit mosaics!! Xx
She said the mosaics led to the brothels!
Good morning ladies!
Hoping you are all well. Those of you who are struggling - MASSIVE HUG!!
Yesterday I attended the first part of the Moving Forward course, which is being held in Brighton by the BCC.
Anyone of you - in your first year post active treatment - if you can - find one and attend. You can access them via the main BCC website or ask your Breast Care Nurse for a referral.
It was great being with ladies, who had all sorts of differing treatments and diagnosis - but somehow we are, of course all the same.
We covered the difference between physical and mental wellbeing from diagnosis to completion of active treatment and through recovery - fascinating! And very helpful - I am very normal, things that happened to me emotionally are the norm, rather than the exception.
We also covered menopausal symptoms and what can be done to lessen them. Surprisingly most ladies suffered more in the early stages of their hormone treatment, rather than on a long term basis - all 8 of us reported that our hot flushes had become very managable. All 8 of us reported that they got better and settled down. There are two ladies, who are, like me, only 3-4 months post active treatment, so very good news. And we discussed the challenges and how to overcome them with respect to sexual activity.
Not to harp on - should anyone wish to explore a challenge many of us face - here is the link to a booklet from BCC, which you can download
breastcancercare.org.uk/information-support/publication/your-body-intimacy-sex-bcc110
Another subject we went into depth on was lymphedema - very interesting and very important.
It did not give definite answers, as still too little research has been done. They could not say, who is more at risk than someone else, and why. However they did tell us about all the things, which are more likely to trigger. The way it was described: Imagine each one of you is a bucket of water. For some of you that bucket is half full, for others 3/4 full, for others the water is at the rim. One extra drop of water and the bucket runs over. Unfortunately neither you nor us know how full your bucket is.
We may already know avoidance of injuries, insect bites, restrictive clothing, carrying heavy weights/bags or using our affected side for vigorous repetitive houswerk or tasks, heat, sudden drastic temperature changes, massage on that side, unless by a person, which has specific qualifications. I shall ask next time what they need to be. Two surprises - long haul flights! They need to be carefully considered and only done if the reason outweighs the risk. Everything up to 4 hours is ok though.
And compression garments - thinking…well they have socks for long haul flights, so what is if I put a compression sleeve on my arm for hopeful prevention? The sleeve, which is required is actually quite special and would need to be prescribed and cover part of the hand, too. Any compression sleeve or garment commercially bought is actually a risk, not a help! And, of course, even if you had that sleeve, there is no guarantee that the flight might not kick off lymphedema. Rock and hard place comes to mind, lol.
Next part of the course is next week - really looking forward to it. Wonder what else i am going to learn?
Have a great day all
Hugs
Sue x
Thanks Sue! That sounds so helpful and being able to share experiences would really help.
Sue, that is so helpful, thank you. No one has told me anything about how to avoid lympthodema except no injections on that side. I’m attending a lympthodema clinic next Tuesday morning as the nurse at the BC support group I attended thinks I need checking as my breast is still swollen and hard following rads. It seems to me that, that information should be given to all of us, so thank you again xx
Hello oh lovely ones! Sue we have a sort of Moving Forward group here but difficult to access now I’m back at work. I did have good advice on lymphodoema after surgery i.e. gardening with gloves, no bloods or bp taken on lhs. Occ Health have also said I should keep my sleeves down when at work to avoid. If you have an iPhone, you can update your medical id, for emergencies. That said Mum tells me she had no info at 49 and has made it to 76 without problem. I was told SNB procedure I had minimised the risk.
Lily I think I’d prefer the ice cream too - but that’s a whole different thread!
Anyway, today 2 lots of good news - firstly I finally have IT back and therefore some work mojo. Also for the first time in my life I’ve had a health appointment where being overweight has paid dividends! My dexa scan shows I have fabulous bones ? My spine is a bit bent over due to my wonky leg lengths but that’s nothing new!
Thank goodness it’s Friday but eurgh the weather! Hugs to all of you - including the intrepid travellers!! Xx
I probably did Sue and got rid of it along with the other stuff as I found it all too depressing to keep catching glances of. A woman at the BC group wore a bracelet. I’ll find out more on Tuesday at the lympthodema clinic.
A while ago Himself told me one of his old friends wife had been diagnosed. I’m not that close to her but did send her a message asking if she wanted to talk, revived a message back saying yes and she gave the impression she would be phoning that evening. She phoned lunchtime, had an hour chat. Apparently she was diagnosed and had her surgery before Christmas but kept it quiet until recently, starting rads on 22 Feb. On anastrozole and not in a good place. Was able to give her some reassurance, tips etc and told her to get herself on this site, Also to come along to the BC support group. Not sure she’ll do either.
Glad work was better today Janey, hope the same case for Clair and Beth xx
Worst job …cleaning the oven and cleaning old shower grout, which won’t be a problem for a keen (but crazy) DYI lady. Lovely that you could talk to your husbands friend, info from someone going through so similar experiences helps. We have an information/exercise 8 week course here but it is midday on a Tuesday and I’m only working two days/three days a week and yep one is Tuesday. I suggested they think about either a morning or arvo one cause middle of the day makes it hard to get away for workers. Sounded good though.
Just thought my absolute worst job to do in the entire world is cleaning the top of cupboards and wardrobes, I end up getting so covered in dust and every time I think I really should do this more often but then don’t
H xx
Ooh things I don’t like doing?! Loo cleaning has to be up there with the worst jobs. Now that’s in my head I can’t think of anything I like doing less, other than painting ceilings and cutting in - I’m rubbish!
Lesley, how lucky your friend is to have you and hope she finds her way here too. Xx
Sue and Charys
I have just checked the booklet my onc gave me and he definitely crossed out the lymphodema side effect as he said I was not having rads to my underarm because there was no node involvement, but he did say about being careful not to have bloods or blood pressure taken from that side because I made a note of that in the back of the booklet.
Helena xx
Charys, I LOVE you, you always get things into perspective! So true, The oncologist frit the life out of me before rads telling me that as I was a leftie possible heart damage etc, lung damage… I decided at the time, one thing at a time you ahole. Not going to worry anymore, wasted enough of my life worrying about what if. Drink the wine, eat the cake, Im Not going to get out of here alive whatever I do xx
Now that is a good idea
Hi all
here is the ‘lady of doom again’ lol
This is a quote from the BCC booklet
QUOTE - People who have a sentinel lymph node biopsy (to identify whether or not the first lymph node/s is clear of cancer cells) have a reduced risk of developing lymphoedema compared to people who have surgery where a greater number of lymph nodes are removed. Most people who have had the lymph nodes under their arm removed don’t develop lymphoedema. However, it’s important to be aware of the risk and quickly deal with any swelling that develops. - END QUOTE
I think it is more about awareness and taking care with speciic things, rather than an impending disaster for thos of us with an SNB. I hope Lesley can report back, too!
And, as I am a coward and had enough of being between a rock and a hard place - I rather be careful and not run the risk, lol.
Trips to far flung places to see relative is regarded as more important than the risk it poses. Our lady says - just to be aware, that it might happen and there would be squiddly dot we could do about it. HEce the story about the bucket, lol.
Hugs to all
Sue x
Where do you get the bracelet? I love bracelets, you can hear me coming with my jingle jangles, one more won’t hurt xx
For my Willows, when you feel “broken” look at this xx
Evening lovelies!
it’s Friday night and I’ve made it through another week in work!! Phew. I don’t feel as tired tonight which is great. Long may it continue.
So much to catch up on again on here - two pages from today! I miss the day time chats.
The weather is crazy here now and it’s currently chucking it down with huge snowflakes. I don’t think it’ll stick as its been raining all day but I wasn’t expecting the snow.
Apologies but I need to rant now. An ex colleague called in to the office late on this afternoon. Usual chit chat, asking how I am, how’s work I going etc. Then she proceeded to tell me about her friend from darts who has been diagnosed with cancer. “It’s in her breasts, and spread everywhere, she’s got months. The cancer is going to kill her”… OMG. WTF??? Why would you say that to someone who’s been through cancer themselves so recently? I couldn’t believe it. I just replied that that sounds terribly sad and left it at that. People just don’t think. I don’t want to be told about situations like that. I think it enough everyday.
THEN I went to pick up my tamoxifen prescription from Boots, and it was handed to me in a dispensing paper bag that was plastered in ‘what do you know about cancer’ and ‘contact Macmillan’. REALLY?? No Sh*t Sherlock. it’s tamoxifen. It’s given to ladies who have had breast cancer. It was the final straw after that earlier conversation!!! I suspect that the pharmacists are blind to what’s written on their bags but come on!!!
sorry rant is now over!!
chinese for dinner tonight!!!
catch you all later
xxx