Member
Posts: 634
Registered: ‎30-03-2018

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
Posts: 652
Registered: ‎25-03-2018

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
Posts: 794
Registered: ‎27-04-2018

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
Posts: 547
Registered: ‎30-03-2018

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
Posts: 794
Registered: ‎27-04-2018

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

Member
Posts: 547
Registered: ‎30-03-2018

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
Posts: 652
Registered: ‎25-03-2018

Re: Surgery May 2018

[ Edited ]

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
Posts: 794
Registered: ‎27-04-2018

Re: Surgery May 2018

Hmmm, thanks will definately look at BECCA.

Kip

x

Member
Posts: 547
Registered: ‎30-03-2018

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
Posts: 634
Registered: ‎30-03-2018

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
Posts: 794
Registered: ‎27-04-2018

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

Highlighted
Member
Posts: 547
Registered: ‎30-03-2018

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
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Registered: ‎30-03-2018

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
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Registered: ‎30-03-2018

Re: Surgery May 2018

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

Community Champion
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Registered: ‎16-11-2016

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
Posts: 652
Registered: ‎25-03-2018

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
Posts: 547
Registered: ‎30-03-2018

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
Posts: 634
Registered: ‎30-03-2018

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
Posts: 547
Registered: ‎30-03-2018

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
Posts: 794
Registered: ‎27-04-2018

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