Kip
Member
Posts: 801
Registered: ‎27-04-2018

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
Posts: 656
Registered: ‎25-03-2018

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
Posts: 88
Registered: ‎22-02-2018

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
Posts: 549
Registered: ‎30-03-2018

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
Posts: 801
Registered: ‎27-04-2018

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
Posts: 549
Registered: ‎30-03-2018

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
Posts: 636
Registered: ‎30-03-2018

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
Posts: 801
Registered: ‎27-04-2018

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
Posts: 636
Registered: ‎30-03-2018

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
Posts: 801
Registered: ‎27-04-2018

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
Posts: 636
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: 656
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: 801
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: 549
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: 801
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: 549
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: 656
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

Highlighted
Kip
Member
Posts: 801
Registered: ‎27-04-2018

Re: Surgery May 2018

Hmmm, thanks will definately look at BECCA.

Kip

x

Member
Posts: 549
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: 636
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