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Surgery May 2018

Kip
Member

Re: Surgery May 2018

Oh Jean that must be a nightmare sleeping sitting up.. you'll end up with a stiff back like me.   Can you have a soak in the bath.. good ole Epsom salts?

Kip

xx

Member

Re: Surgery May 2018

Hi Kip ... good your arm is a bit better. Whatever you’re doing is working. I’m still trying to sleep upright ... need superglue on bum tho. I take codeine at night which helps a bit. I’m better at managing movement without making things worse. It is gradually improving. I’ve noticed I’m expanding/weight going up ... good job there’s no biscuits around. Shame I can’t hoop ☹️ 

have a good weekend

xx

Kip
Member

Re: Surgery May 2018

Hi Jean,  sounds like you are having a week of it.   Must be difficult to keep up the arm exercises when you are in pain.   Its bad enough without extra things to deal with.   How are you sleeping?   Ironically my arm feels a bit better today, still haven't seen anyone so will still continue with that (whenever the appointment comes). 

Hope you can get some pain free rest today.

Kip

xx

Member

Re: Surgery May 2018

Michelle ... druids we are.... great climb to do on your birthday. Pleased the someone like me service was some help to you. Enjoy your weekend with your girls. Kip ... hope you get an appointment soon and get your arm looked at. Ticking off those rads .. it will soon be the 19th and you’ll be there with your family to ring that bell. You’ll have enjoyed your time with your daughter instead of being in for rads. Great picture. Clare ... hope your feet are improving. How’s the no screen time going? Today has been a bit better than yesterday. I find sitting upright minimises the pain but it’s really hard to keep that upright in bed. I’ve not had as much analgesia today but Im still taking codeine at night. I’m not able to drive .. again. It’s getting easier sitting/standing etc but wish I could just move around and do things without worrying about pain...maybe next week 🤔 I’m making myself do a few gentle ‘week one’ post op exercises now as I don’t want to seize up. Stay warm Jean xx
Kip
Member

Re: Surgery May 2018

Hi CDC, yes they did call me before I left so I didn't waste a journey thankfully.  They have 2 machines and both out of order yesterday.   I know I wish somebody would just look at my arm and tell what to do with it, I keep massaging and stretching but am worried I'm doing it wrong.  I should finish my rads on 19th December so all done for Christmas, although expecting the tiredness to kick in once its done.  So far feeling fine.   Have you started your Tamoxifen yet?  If so how's it going.  I started a new pack yesteray (2 month) and its a different brand so bit worried it may make me feel different.. will have to wait and see.

Oh and managed to update the profile picture... its a bit of a cheese one.. I hate my photo being taken!

Kip

x

Member

Re: Surgery May 2018

It’s incredible nobody has actually looked at your arm Kip!  Good you are being referred to the lymphodema clinic.  A friend of mine has a specialist nurse who comes once a month to do a therapeutic massage.  Did you find out about the broken machine before travelling all that way for radio yesterday?  Hope not!  Annouomgro go in on a Sat but I’d probably do the same.  Will you finish next Friday? Hope you’ll get a good break over Christmas.

 

Hope you’re getting better after your nasty fall Jean. Xx

Kip
Member

Re: Surgery May 2018

Morning, now being referred to the lymphodema clinic for some physio and help with my posible cording.  Still nobody has actually looked at my arm, hope I don't have to wait too long for an appointment.

Didn't get the radio therapy yesterday as the machine was broken so have to go on Saturday.   They did offer to add it on to the end of my treatments but I don't want any more days disrupted next week as have so much to do.

Feenix - how are you now?   Still sore?

Kip

xx

Kip
Member

Re: Surgery May 2018

Well no further forward with the arm issues.   Asked at radio yesterday and the lady I saw was very short with me (I could see in her face she was thinking "why would we be looking at it for you") and she said they were too busy to look and that I should just gently massage it and if it doesn't improve self refer to physio.  No luck there then!   I don't know what type of massage and how hard etc to be doing, and whether its cording or not. So this morning I called my BCN again, she was off but spoken to another who has said I may get an appointment quicker via the physio department rather than the breast clinic so have to call them in a minute to see what they say... more chasing but I really want sometone to take a look.

Michelle interesting you said your arm aches, I've been messaging someone who has just finished (well about 2 weeks ago) and she said her arm aches and she couldn't work out why either.   I still ache all over so another arm won't make much difference to me.

 

CDC - Sounds like your counsellor is doing you the world of good, deffinately think thats on the cards for me after xmas.  Its my daughters birthday today and I so wished I could give her the ultimate present, i.e.. the old me back... bless her.

 

Anyway ladies, Rads No. 10 today so 5 more to go... so far so good, no soreness as yet.

Take care

Kip

xx

Member

Re: Surgery May 2018

Oh Jean I do hope you’re not feeling so sore today- sounds like a horrible fall. Did the hospital offer any advice? I did something similar years ago, tripped on a rucksack strap as I was getting out of the car. It’s a frightening experience isn’t it? I landed on my elbow!

Michelle glad you got to talk to someone from the someone like me Service. I have had my therapist for some time now as I started seeing her when my Dad was ill. I found her privately via a friend who had just finished working with her so she was highly recommended. I have tried cognitive behavioural therapy as well as other types of counselling but these didn’t work particularly well for me. The lady I see is a ‘traditional’ psychoanalyst. I even lie on a couch! I was surprised that I’ve found this approach the most effective for me. I had very poor self-esteem and on reflection, she helped me realise various experiences during my childhood contributed to this. It’s helped me accept myself. I’m also far more resilient now and this has really helped with coping with my BC diagnosis and treatment. I know talking therapies aren’t for everyone but I feel a sense of relief whenever I’m due to see her as I know she’ll listen without judgement. Do you have the iCope system in your area? In London your GP can refer you to this service and they then help work out which services would be most helpful. I had 6 free counselling sessions before seeing my private therapist and they were helpful but I needed to see someone long-term. What I would say is if you dodecide to see someone, if you don’t feel you ‘gel’ don’t be afraid to walk away and find someone else. I’ve made the mistake in the past of sticking with a counsellor out of guilt and I’ve learned you really need to trust your gut feeling.
Well I’d better head to bed.
Sending good wishes to everyone x
Member

Re: Surgery May 2018

Hi Michelle21

I've read through some of the threads on here and I think we may have had treatment at the same Cancer hospital. I was just wondering have you contacted them again regarding Counselling etc? I only contacted them a couple of weeks ago as I heard other ladies were having advice/help from there. I spoke to some lovely people there and they are arranging one to one Couselling and other things for me. I was just wondering if it would help at all. I took it upon myself to ring them rather than being referred by a professional.

xx

Member

Re: Surgery May 2018

Oh no Kip that sounds awful, although the appointments are annoying you need to sort this out. Although I feel the same as you the appointments are a reminder of it all. My arm got very stiff by the end of rads, and I have to say it’s only just starting to feel as it did before rads. Weirdly im starting to notice the numbness again which had kind of been overridden by the stiffness if that makes sense?! I wish when I’d started rads they'd told me it would take 4 weeks to recover from. Hopefully the radiotherapy dept will refer you today. Almost forgot to say I saw your lovely picture on your chemo thread! You look great and your hair is growing thick and fast!
CDC I agree it is so important to look after our whole selves, head and body. I spoke to the someone like me lady yesterday, she was lovely and I think I feel better having spoken to someone who also has had BC but I guess she can’t tell me what I really want to hear, as no one can. Is your therapist someone who you found privately or through your hospital? Was it someone you have chosen to see because of BC. I have thought if I don’t get referred for counselling then seeking some privately but I don’t know how to go about choosing someone who will understand what I have been through.
I haven’t been told of or heard of any HER2+ trials, presumably this is something your onc suggests?
I am impressed with your no screen time hour, how is it going?
Jean I’ll join you as a Druid, my birthday is 21st June, summer solstice! Last year I climbed Pen y fan at 3am,!it was great. It was pitch black and you could see everyone going up with their torches. There were about 30 people at the top and we watched a beautiful sunrise. Quite different to this years birthday, in chemo. You are right my OH also is probably aware when I am low, but they’ve been through so much too haven’t they? I’m not back running yet, waiting for the last couple of blisters to heal. They aren’t painful now but I don’t want my sports bra to rub on them, basically I’m not taking any chances! I really hope you aren’t aching too much from your fall, it’s the last thing you need on top of everything.
My girls are home at the weekend, I can not wait!!! I’m really so excited! Hopefully they will take my mind off the rubbish stuff.
How everyone has a good day xx
Kip
Member

Re: Surgery May 2018

Oh dear Feenix, sounds so painful.  I have finally spoken to my BC nurse today about my possible cording and seroma which seems to be getting bigger again.   My arm is definately twanging all the way down to my wrist when I reach out, may need physio she thinks or some more instruction on how to twang the cording away!   Got to ask the radiotherapist today to take a look and then see whether I need to see the breast clinic, the lymphodeoma clinic or the physio.. or possible all 3.. more appointments.. grrrr.

Hope the mini mince pies were good!

Kip

xx

Member

Re: Surgery May 2018

Oh Jean you poor thing, that sounds painful. I hate falling over ive done it a few times running and I always cry! I would definitely hit the mince pies at least, maybe treat yourself to a tub of hero’s! Hope it’s not too sore and you feel better soon xx
Member

Re: Surgery May 2018

If only there was a biscuit to be had Kip. Might have a mini mince pie instead. Ended up in A&E this evening to be checked over as had horrendous pain. As bruised ribs and rib fracture are treated the same I didn’t need an X-ray... no heavy lifting but I don’t do that anyway. Will have to take it easy as my side/chest doesn’t half twang when I move certain ways. Trying not to shallow breath as don’t want to develop chest infection. Takes up to 4 weeks to settle. I’d just started to do hooping as well. OH is still traumatised... bless him. 

 

Kip
Member

Re: Surgery May 2018

Oh no Feenix you poor thjnk, look after that arm and the rest of the sore bits..  better have a biscuit to cheer yourself up!

Member

Re: Surgery May 2018

Kip ... I booked on through BCC direct as my Bcn was off sick at that time. Bcn will book you on I’m sure.

Well.... I took a dive out of the car this morning. My foot caught on bag strap and out I flew. Landed badly on my ‘bad’ side... scrape on hand, face and knee but really clattered my ribs/ chest area where had mastectomy although don’t think I’ve broken anything. (OH had a look and did exam) . Really sore but can do exercises. Put myself on anti inflammatories and have cleaned and dressed wounds.... fingers crossed. Really tearful after as first thing I thought about was lymphoedema, just because I’ve heard of it developing after injury to arm although there are those that have had ops on arm and have been ok. So I tell myself that I’ll be ok and as OH tells me it’s mainly to do with infection. I’ll be using a tube of salon over next few days  !!!

Gave OH a real fright ...and the woman who thought he’d run me over 😂 Hoping for no more mishaps.

Kip
Member

Re: Surgery May 2018

Morning all, thanks for the lovely comments.  

CDC - when my daughter said she wanted her old mum back I could have just wept and wept.  Like you said, that old Mum is gone, but not necessarily for the worse.   Its just so hard explaining everything to her and remainign positive when all I am thinking is what if!   My children are coming to my last Radiotherapy so that they can ring the bell with me and I'm hoping they will feel some relief from that.   I think I always feel worse when I am physically going to the hopsital.  It just brings it all home and when I am going every day and sitting in that waiting area looking around me.. its just so surreal.   I am going to see if I can find out about the Moving On Course today whilst there, so I can get that booked. 

Kip

xx

 

Member

Re: Surgery May 2018

Morning ladies

What an emotional time you are having, but seems par for the course and especially now Christmas is pending. 

Kip ... your daughter saying what her Christmas wish is ... so heart wrenching. I hope you are have a good day and rads go ok + no traffic probs 🚗.  Just thought ... put a positive mantra on your fridge....I used to do that and probably should do so again.  Good you’ve got your tree up.... mine is a foot high, one my mam had ... takes no time at all 😂 Can’t believe Christmas has come round so quick. Tbh honest my favourite day is December 21st, the winter solstice, because I know that once that’s over the nights will be getting gradually longer and spring will be on its way. I should have been a Druid 😂.    I’ve now got 2 bras from Asda which are ok. I’m still deciding about which one I’ll order from NJ but really got to decide today. Info .... If you sign up for sale alerts etc with Nicola Jane you’ll get discount off your first order. 

Michelle .. hope you have positive contact with the Someone like Me service today and you get input from the psychology team to help you with coping strategies. It’s good you have spoken with your OH about how you are feeling although I know what you mean about not wanting to offload on him. I tend to refrain from saying how I feel when I’m have wobble thoughts even though OH has told me he’d prefer me to... he can probably tell by behaviour/mood changes anyway !!!! I do however mention it “in conversation” after I’ve got my head round it. I don’t have very frequent  active wobble thoughts but they are probably there subconsciously just waiting for a chance to pounce. (You can tell I was watching Dynasties last night ... tigers 🐅). It really is good you are planning though and have booked a holiday. Russia will be good. Are you getting out running?

Clare ... pleased you are enjoying prep for Christmas. Dedicated No screen time is a really good strategy for more interactive family time. The Someone like me service will certainly have contacts for you regarding your surgical options and there will be many threads on here. I remember I had a time of very low mood after I started Letrozole but it was the time when I was struggling with the question of recon although it did get better pre op ... might have been a combination of both as I was definitely soooo less stressed after my mastectomy. 

 

As you know I didn’t need chemo but I did get my hair cut short before my first op ‘just in case’, plus it would be easier to manage post op. I’ve kept it short ever since and it’s so much better. I started using lush shampoo bars but yesterday thought I’d use simple shampoo that needs using up but it made my scalp really flaky and itchy. I think I’ll look for some tea tree or aloe Vera shampoo from health shop. Any recommendations?

The apple trees got their cut too... well pollarded. 

Got to find the lights to put up today and I may get out into the garden and make that Christmas wreath. Forgot ... need to post overseas cards and get the rest done. 

 

Hugs xx

 

 

Member

Re: Surgery May 2018

Hi Kip, Hi Michelle
It’s so important to look after our mental health in all this. I wouldn’t cope if it wasn’t for my weekly sessions with my therapist. Such positive moves contacting the ‘Someome like Me’ Service and the psychology dept. Michelle.
I hope you find your chats with them useful
I have spoken to a lovely lady from the Someone Like Me service who had a therapeutic mammoplasty so initially we would chat about that but then I started chemo and she’d already been through that too so it was good to share experiences. I think that knowing that she’s been clear of BC for years now is very encouraging, I’m thinking of trying to find some people to talk to who have had a DIEP or a TUG as they’re big procedures and I’m nervous, My dear friend who is 8 years clear went for no reconstruction and admitted today that she’s worried for me. However, I do have a lot of faith in the Marsden surgeons though so glad I got transferred there,

I’ve been enjoying Christmas preparations when I can manage to put the ‘what ifs’ to the back of my mind, We’ve all been through all this c***p treatment not just to remove the cancer we had but because it should preventi it coming back. Kip I can imagine it being a lump in the throat moment when your daughter said what she wanted for Christmas. What did you say when she said she wanted her ‘old Mum’ back? I’ve changed forever since my BC and not all in negative ways thank goodness. I try to enjoy the little moments. We have instigated a no screen ‘golden hour family time’ between 7 and 8pm and my husband, daughter and I are tying to spend that time playing games or doing activities together. It’s working well at the moment. I think it helps my daughter feel that I do have time for her. She gets upset when I’m fatigued and can’t ‘play’.

With regards to the BC I’m certainly going to be extra vigilant and won’t hesitate going back for a private ultrasound if I’m ever worried. I’ve been invited to join the Monarch E trial which is to take another drug in conjunction with the tamoxifen. This has been shown to work well in people with secondaries but the researchers now want to see if it also helps prevent recurrence for those with primary ER+ But HER 2- BC, The good thing is that I’d be much more closely monitored however, the side effects look like they can be pretty horrendous! I don’t have to decide for a while and I wouldn’t be able to start until 14 days after my MX and recon. Are there any trials for HER2+ I wonder?

I’m sending everyone huge hugs. It’s horroble when the low mood hits. I’ve been told tamoxifen can cause mood changes too. Oh well I’ll soon find out as I’ll be taking my first pill tomorrow!

Take care xxx
Kip
Member

Re: Surgery May 2018

I agree Michelle, time will be the key.  I have 3 friends who have been through this and they all said as time goes on it gets easier.

Ive found the tamoxifen ok, just hot flushes, although i have achey jojntj and muscles which could be the tamoxifen or chemo SEs... Otherwise so far its fine.

Kip xx 

Member

Re: Surgery May 2018

Hi Kip, at least we know that our thoughts are a normal part of this horrible place that we find ourselves. I am hoping to learn some coping methods but deep down I think the only thing that will make us feel better is time. I suppose by trying to keep positive and arranging lots of things to look forward to will hopefully make time pass ‘ore quickly. That’s my plan anyway!
Had an on ok day today, had a chat with OH and told him how I was feeling, a problem shared.... I did feel better having had the chat but I also feel bad loading my worries on to him.
How are you getting on with Tamoxifen? I haven’t really noticed any difference apart from slightly more regular flushes. Hope you have had a good day too x
Kip
Member

Re: Surgery May 2018

Hi Michelle, wow what you've written could be me!  I am feeling the same.  We got a xmas tree yesterday and had a lovely time decorating with the children but all the time at the back of my head is "what if im not here to see this next year" .im too scared to look too far forward to and want to book a holiday but feel scared to tempt fate!  Ive been feeling really positive lately but today could cry.  My daughter told me the only thing she wants for xmas is me not to have cancer and be her old mum again!!  Breaks my heart and i try to brave it out for her but inside ☹️.   Must try positive thinking again...  Hope you are ok today?

Cdc when your consultant said the 1st year is the hardest he wasn't wrong!! 

Kipxxxx

Highlighted
Member

Re: Surgery May 2018

Hi Claire, I don’t think my hospital offers an open invitation for follow up, that sounds like a great service, however I am going to see someone from the psychology dept on Tuesday so I will find out what they offer then. I also have ‘someone like me’ calling on Monday. I’m really looking forward to that because she was also HER2+ which is what I am currently worrying about. I thought I was feeling better as we went out with friends last night and had a good time and woke up in a good mood. I have booked a holiday this morning to Russia for us next June, I was really excited then I started to think what if it’s come back by then and now I feel really low. It’s difficult to pick yourself up from those dark moods isn’t it?
You must be so pleased your hair is coming back quickly! Like you Jean I’ve just had a crop. I’m not happy with mine its too short to try and get all the re growth to blend in. Having said that I have had lots of compliments. I plan to keep my hair short but not this short!
Jean id never heard of pollarding and have heard of it twice this week! We love watching escape to the chateaux with Dick Strawbridge and they have had their trees pollarded! Hope you got yours done ok.
Kip I hope you are enjoying the weekend break from rads. It all seems to be going ok for you apart from the journey, you are almost halfway now.
I hope you all enjoy the weekend xx
Member

Re: Surgery May 2018

Hi Michelle How are you doing today? The Becca app looks interesting, I saw the medical onc registrar today, She said that the first year after finishing treatment for BC is known to be especially hard. I will be able to have open access to follow up appointments. She told me I should just ring if I have any concerns including low mood and said that they offer counselling,  Does your hospital offer something similar? 

Thanks for all the offers for donor tissue for my DIEP or TUG  but I think I already have plenty of my own. Sorry!
I’ve put on a stone after changing from AC to the T part of chemo. Haven’t been this heavy for a while! The onc said not to worry at the moment but just keep trying to walk as much as I can when I’m up to it. She did also say that I really am not long out of chemo so bound to still be having problems with side effects.

My hair is growing back quickly! I think I’ll keep mine short from now on anyway. I’ve been told it suits me by various people. Hope you like your new crop Jean. Did you manage to get the trees pollarded?

Kip I had to have some blood tests taken next to the chemo suite at the Marsden and, like you, I just felt so relieved not to be heading in for a cycle. So glad that part of treatment is over!

Have a good weekend everyone,

C xx

Kip
Member

Re: Surgery May 2018

Hmmm, thanks will definately look at BECCA.

Kip

x

Member

Re: Surgery May 2018

I’ve got the Becca app too. Forgot I had until reading here reminded me. I went on it yesterday and there were links to a couple of positive survival stories. I don’t use it day to day. I think it has make up advice and mindfulness links. It’s worth downloading. X
Member

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

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
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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

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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
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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


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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

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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
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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

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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
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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

Member

Re: Surgery May 2018

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

 

Clare 

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Re: Surgery May 2018

Sally... my routine mammogram was reported normal July 2017 and again in March of this year at Breast clinic, as was the uss although that did pick up ? “debri” in duct which was biopsied as it was where I had felt small lump and of course came back positive IDC. I did have an MRI because I thought I’d had dimpling and needed to check extent. The small IDC showed up on MRI but the extensive dcis was occult on all scans/mammograms and it was that which necessitated a mx. The dcis was only picked up on histology.  A friend had Lobular and had to have an MRI as it can be difficult for it to be seen on mammogram. I think it was the same for her with the uss ... not seen (occult). She did ask about having MRI as follow up but she will be having mammograms. “Screening” is so dependant on us being able to spot any changes but this isn’t always the case.

Kip ... hope you have a quicker journey today.

xx

Kip
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Re: Surgery May 2018

SallyG - yes its a minefield to get diagnosed at all isn't it.   I could feel a lump, so could the consultant (even though he said he thought it was a cyst) the mammogram wasn't clear as I am young(ish) so had a scan and a biopsy to clarify what it was... good job they did.

Kip

x

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Re: Surgery May 2018

And I've still not replied to the complaint report. I'm off Mon, Tues and Weds next week so I'll do it then. I may copy NHS england in my reply.