Well done amazing Clare! A voice for us all! Sounds like it was a great day at the conference and also a good day with the Plastics team. Its great you are getting the options sorted, all choices are completely personal and as we have all learned from this crappy journey.. everyone is completely different too and we all respect each other's choices and opinions. As I've said before.. if you need some donor tissue... my thighs have an abundance for use (if only I could ). I have heard of the BECCA thing but haven't used it, might have to give that a look, thanks for the reminder.
Michelle - hope you are feeling a little better today. I watched the blogs by Victoria Derbyshire the other day, she made little films following her treatments etc and it was good to see her going through all this and coming out the other side. She is still in the clear and enjoying life and she even says that the demons do raise their heads from time to time but she is focusing on the here and now and enjoying life...
Feenix - thanks for the heads up on the discount on Asda bras...am waiting for my prosthetic boobie after xmas and then will be shopping again. How's the hooping?
No. 6 Radio today.. all going fine, another accident causing hold ups on the way to hospital yesterday so took ages and ages to get there but I did it. Getting very tedious now but every time I walk past the entrance to the chemo unit I just thank my lucky stars I'm not heading in that door again.
Have a good day all
Clare .. hopefully the uk will be proactive in screening .. keep up the good work. The 100000 genome project (hope I got that right) was mentioned on tv this evening (the One Show) ... thought of you. Will you get any feedback in the near future? Sorry your feet are giving you gip still. Good that your surgeon gave you the option of recon instead of the usual approach. Anyway you know you want recon and that’s good. Plus ...Respect works both ways ❣ You just have to decide but, as you say, your scan results will hopefully help you along. You have the right attitude for having reconstruction...you have said you understand it could fail and would go flat. However, flap surgery failure is very small especially with the DIEP. If they do TUG they will obviously be proficient at that too as I’m sure such an establishment will do many such ops. Fingers crossed for good ct scan results...good circulation. Gosh, Clare, nearly at the end of all this cr@p... the time will go over quick as well, especially this month.
Have a good night
Honestly it is totally natural for you to have fears about it returning but honestly with time those fears will lessen, however it is early days yet my dear and the trouble is that when the anxiety monster gets in your head all ration thoughts go out the window, but I promise you will be get better.
Juat wanted to send you some hugs
Sorry to hear you’ve been feeling low Michelle. think it’s very understandable to have down days after treatment- I’ve talked to my BCN and also therapist about how I might feel once I’ve been discharged from the hospital. I think whilst im going through treatment it feels like i’m actively doing something and the numerous appointments certainly do take my mind off thinking about the ‘what ifs’. I can imagine I might feel rudder-less once I finish too. I was very surprised to hear that I will no longer get screened each year after I have my double mastectomy but I suppose there isn’t really anything to scan after the op. That’s what I was told at Barts. Maybe the Marsden will have a different view. Have any of you tried using th BECCA app that I’ve seen promoted on the BCC website as offering support after treatment?
The conference yesterday was so interesting. The talks by Nick Robinson and a couple of patient advocates were incredibly moving. All three talked about how important it is for the professionals to actually listen to their patients and not just focus on the physical aspect of treatment. All mentioned the need to take care of the mental health aspect of their care. I was pleased that there were delegates, including a couple of MPs willing to hear about the issues around dense tissue. Cheryl Cruwys is amazing and even managed to talk with some of the MPs there and the CEOs of so,e major charities. Those without direct reasons to listen, ie Men! took the leaflets to show to their partners and female relatives. It was very encouraging. I had a particularly good discussion with some people from a Cancer Collabarative in London who are looking to improve early diagnosis and I have been asked if I would consider joining a patient panel to share my experience. It’s estimated that around 3500 women a year are unfortunately diagnosed at a later stage because the tumours were ‘masked’ by the dense tissue and they have, like me, then needed more aggressive treatment. One of the patient advocates for the All Party Parliamemtary Group on Cancer said that after having to wait a long time before being correctly diagnosed with chronic myeloid leukaemia he felt a ‘determination to be part of the solution’. I think this is how I feel which is why I am so passionate in supporting Breast Density Matters’ campaign for education. The research has been out there for 40 years and other countries have instigated ‘inform laws’ and screening procedures for those with very dense breast tissue. I do hope the UK will follow suit in the near future.
I had my first meeting with the plastics team at the Marsden today. I was pleased that they did say it’s entirely my choice if I want a reconstruction or not. I know that I have a one off opportunity for the particular reconstruction I would like using my own tissue and if it does not work I think I’ll be fine being flat. It’s such a personal decision and I have the deepest respect for all of you who have chosen not to have recon. Interestingly, I have a second option that I was not offered at my previous hospital and now have to decide on a tummy DIEP or a TUG using my inner thighs. I naturally put on weight on my thighs and not so much on my tummy so I am wondering if the second option would be better for me but it’s a slightly more complicated op and a longer recovery. I have a couple of weeks to think about it and the results of my abdominal CT scan will hopefully help me decide on the best option based on which area has the best blood supply.
My neuropathy has been getting me down. Hate the feeling that I have something permanently stuck on the balls of my feet which makes walking and standing for any length of time awkward and sometimes painful.
I’m going to put my feet up for the rest of the night as I have been traipsing around a lot today..
Wishing everyone a restful night xx
Michelle, all that you are feeling is normal. Going through the hospital based treatment gives you something to focus on, expend energy on and then suddenly ... that’s it. I felt ‘odd’ after getting off the surgical rollercoaster and having nothing else. The Moving Forward course enabled me to say how I was feeling/what I thought etc and I did have a bit of a wobble but just because I was actively “thinking” about what ‘it all means’ again ...but it didn’t last long. The course is good, mainly because you meet others who have gone through treatment and that it’s a safe place to say how you feel and everyone gets it. There was also a bcn there who you can talk to, ask q’s and the course facilitator and volunteers were great, as were all those giving talks. On the last day 6 of us were able to stay for lunch (it was in a hotel) and are meeting up again next week for Xmas lunch in same hotel locally. We are waiting for the contact list to be sent to us and we’ll have everyone’s details who want to keep in touch and meet up. You’ll find it very helpful...get booked on..get a place. You too Kip. Your friends say the same as mine ... it gets better with time, but I do think the gremlins will niggle on at times, probably at yearly follow ups, tv adverts etc. It’s still early days so the what ifs will pop up more often but it will get better...that’s me being positive 😊 Hope your rads were ok today.
🌟 Asda post op bras have £2 off ... just been online. ⭐️
Oh Michelle ni think that's par for the course... Ive heard a lot of ladies get very emotional and worries at the end of treatment.. i think its the removal of the safety net you are in when under gojng treatments And then you have to find a new you and a a new way to feel. Ive been having some down days too with the what ifs! Some days i dont worry some days i do. Not sure how you move on but it seems (from friends j have who have been there) that as time stretches out uou think about it less and less,.. unfortunately i think it will always be there. I try to tell myself that nobodh knows if they will get C its just we are in that world already. If you look on the other forums i tthink there is a moving forward bit and it has positive survival stories on there.. ive ive them when feeling down.
Clare ... just seen you were taking part in a conference yesterday. Hope it went well ... can imagine that it was emotional and tiring.
I’ll certainly let you know about the Nicola Jane bras Kip. The 2018 catalogue finishes this month so there are discounted bras. The Fleur lace elegance bra was really nice, very feminine, when we had a look at bras last week on the moving forward course, although still about £32 in sale but I wouldn’t mind an odd one at that price if it felt good. I’m still going to try another Asda bra... I’ve not tried all styles yet !! I certainly would like a couple of good bras and some everyday soft ones that are good to wear flat or with KK. Good to stay in vests during rads ... cooler for the area and not so irritating. Pleased your skin is doing good. I’m ‘flat’ a lot of the time. I did wear Boudicca bra and foob the other day as I had a few twinges around my chest and that sorted it. I’m still knitting a foob..the same one 😂. I actually sent away for another one, better size, and also an aqua one... they came really quick.
Oh let me know if the Nicola Jane ones are good.. I'm in vests at present to protect the skin during Rads, not that its sore yet but don't want to take chances... not a good look with one flat side.. but actually I don't care!
Kip ... know what you mean about surgeons and recon. It’s ok if you know you want to go down the recon route. OH was telling me that there’s a trend for women to go flat (he’d been reading a Bmj article about the latest implant problems). Well done on keeping up the hooping and walking in spite of everything... and weight loss is good 👍 I need to up the ante 😂... and get more will power. I’m hitting the online shopping ... bras yet again but trying Nicola Jane (have discount code) and an m&s one that someone recommended.
Might get out for a walk although it’s quite cold today ... brrr....
Thanks Feenix, what a great article. A shame she felt she had let her surgeons down by not having reconstruction though. I get that, my surgeon kept pressing for recon too and I knew I didn't want it. I am quite happy with the flat one. My aches and pains are more annoying that the flat boob I think. I am still hooping though, and .... drum roll..... have lost 4lb in the last 3 weeks.... just trying to cut out the sweet stuff and eat a bit better, although Christmas goodies are starting to roll in so it may not last! I'm still out walking most days although the hips nearly sieze up when I get back.. but I won't let it stop me.
I haven't done very much xmas shopping yet.. have loads to buy and spending every morning working and afternoon having radiotherapy isn't helping much! Must focus and shop on line I think.
Interesting article online.
Clare ... pleased your mood started to lighten and I do hope that has continued. Losing finger nails always sounds ouchy but you should have new nail growing. Keeping the old nail on as long as possible would have helped the new one grow straight. I’ve never been told I had dense breast tissue, and I am now older and through the menopause so won’t be of use to the campaign. Even without dense tissue things obviously aren’t always ‘seen’. Hope things go well at your plastics appointment on Wednesday .... things are definitely moving forward for you and that’s great.
Kip .. hope the rads go smoothly for you this week ... ✅ I’m going to get some Epsom salts just for the benefits of absorbing magnesium which is good for bones/muscles ... soak my feet at least...may even have a bath. Better than taking a tablet.
Michelle ... hope your skin is continuing to improve and you have had a good weekend.
Sally ... hope you’re getting your reply done.
Well, need to get hooping like mad as the ‘middle’ needs lots of work ... probably should stop eating chocolate !!! ... have also had Christmas themed sweet pastries 😈
Trying to decide what to cook for Christmas Day ... fancy something different so might try a nut roast (never made one) or it’ll be Biryani again. If it didn’t cost an arm and a leg I’d go out to eat. Hope you’re all getting on top of any Christmas shopping you may have yet to do.
Thanks for all the information CDC, I will definately take a look and see if I can add my support. Sorry to hear you have lost a nail, mine still look dodgy but so far not lost any and none loose, I'm hoping I can just grow them out, but they do look horrible.
I'm still suffering the aches and pains, I'm so stiff when I get up on the mornings and if I have sat for any length of time. I think the Tamoxifen is partly to blame too, that apparently gives you muscle/joint pain. I'm hoping it will go with time, my husband and son both do Yoga so am thinking of giving that a try after treatment is finished, and my arm allows me to. Anything worth a shot to losening these joints.
I am feeling slightly brighter today, I’m hoping that with my experience I can support my friend through her treatment,
i’m glad thee rads are going ok Kip but so grim having a long jourmey
i’m very interested to read about the mammograms and scans people were offered and what follow ups will be. I recorded a video today to send to Cheryl Cruwys- co-founder of Breast Densuty Matters. It’s part of the charity Breast Cancer Now’s 55 000 reasons campaign, it’s worth googling and adding your voice. Cheryl is taking my story and those of others whose tumours were missed on mammograms to share at the Britain Against Cancer Conference on 4th Dec. I know I bang on about it but I’m aware of so many people now who were not given information about dense tissue masking tumours on mammograms and increasing the risk of breast cancer. I remember laughing when a concultant told me a couple of years ago that I ‘have the breasts of a much younger woman’ I almost took it as a compliment! . What I now know is that he meant that women’s breast usually get less dense and more fatty as they get older and mine were full of fibro-glandular tissue. - this is the stuff that shows up as white on mammograms and as the tumours show up as white they can be impossible to see. I hope that I am amongst those at the forefront of getting an ‘inform’ law passed to ensure women are told this vital information, please do contact Cheryl if this issue has affected you. She also has a petition on change.org but I’m not sure if I’d be allowed to post any links on here, The last letter I received from my Breast surgeon recommended a bilateral mastectomy due to the issues with follow screening and a worry that even my MRI hadn’t picked up everything. I suppose I’ll only know once I get the histopathology report after surgery but it has made me glad that Ove had chemo even with all the grim side effects.
im feeling desperately tired today. I’ve lost a finger nail and the neuropathy in my right foot/toes is annoying but I am just so thankful to be having a break from treatment, Sounds weird but I’m ‘looking forwar’ to meeting the plastics team at the Marsden next Wednesday and the medical oncologists next Friday to discuss which hormone therapy I will be going on to. It’s just a sign that my treatment plan is moving forward. Once I have the info I need I’m hoping to put BC to the back of my mind over the Christmas holidays!
Best wishes to everyone and thinking of all those that are currently undergoing radio or recovering from it.
lots of love