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Surgery May 2018

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Re: Surgery May 2018

Michelle ... hope today has been a bit better for you.

Kip ... I’ve fallen off the hoop 😂... must get back on. I too could make donations aplenty to Clare. I’ve got the Becca app but haven’t used it much.... only had a look to see what was on it. Not done much walking today... hopefully tomorrow as I’ve got to go over to GP to get bloods done, then back out later to get hair cropped. Apple trees finally getting pollarded tomorrow ... hope it’s not too windy & the guys have to cancel.... doubt it 🤔 

xx

Kip
Member

Re: Surgery May 2018

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 Smiley Wink).  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

Kip

xx

Member

Re: Surgery May 2018

Thanks everyone you’ve been really kind, although that sets off the tears too!! I know I will get through this as we all will.
Claire I am in awe of you going to the conference and pushing for better scanning, your passion is inspiring
Xx
Member

Re: Surgery May 2018

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 

xx

Member

Re: Surgery May 2018

The someone like me service will be very beneficial Michelle ... sending hugs  Jean xx

Highlighted
Community Champion

Re: Surgery May 2018

Michelle

 

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

 

Helena xxx

Member

Re: Surgery May 2018

Hi all

 

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

 

 

Member

Re: Surgery May 2018

Thanks so much Jean, that is really useful, I will get myself booked on the course in February. I have also been in contact with the someone like me service and have someone calling me next week so that will hopefully help too. X
Member

Re: Surgery May 2018

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. ⭐️ 

Xx

Member

Re: Surgery May 2018

Thanks Kip, I’ve also heard it’s quite common at the end of treatment. I don’t know why I thought I would be different but I did! I think during 9 months of pretty intensive treatment I have just been going from day to day and focusing on finishing each treatment and I think now the ‘big 3’ are done I can reflect on it all more and it just feels so massive.
I’ll have a look for the moving forward forums I could do with some positive survival stories. X
Kip
Member

Re: Surgery May 2018

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.

Take care

kip

Xx

Member

Re: Surgery May 2018

Hello
Sorry I’ve been AWOL for a little while, my emotions have been very up and down, with lots of down. I think finishing rads has really hit me. I’ve found myself getting very upset wondering if the cancer is going to come back. I know this isn’t helpful thinking but once those gremlins get in the head it’s very difficult to get rid of them. I have also been feeling very alone as im the only person I know who has gone through this. I have an appointment at the hospital to see what counselling they can offer me next week so I’m hoping that will help. I’m also really interested to hear if the moving forward course has helped you emotionally Jean or if it is more practical help? There is a course here in Feb that I will sign up for and a session with family (my OH is coming) in January. I'm usually or used to be quite an upbeat and happy person and I hate feeling like this. Sorry to pour it all out here.
CDC the conference sounds very exciting and must feel empowering that you are making a difference. Let us know how it goes.
Glad rads are going ok for you Kip and well done on losing 4lbs. I lost 4lbs but have put 2 back on with my recent low mood = chocolate. X


Member

Re: Surgery May 2018

Clare ... just seen you were taking part in a conference yesterday. Hope it went well ... can imagine that it was emotional and tiring.

Jean xx

Member

Re: Surgery May 2018

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. 

Jean xx

Kip
Member

Re: Surgery May 2018

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

x

Member

Re: Surgery May 2018

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.... 

xx

Kip
Member

Re: Surgery May 2018

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.

Kip

x

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Re: Surgery May 2018

Member

Re: Surgery May 2018

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. 

Xx

 

Kip
Member

Re: Surgery May 2018

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.

Kip

x