66920members
353193posts
cancel
Showing results for 
Search instead for 
Did you mean: 

After all the stuff

31 REPLIES 31
Highlighted
Member

Re: After all the stuff

Awesome Lexilou! yes you have summed up well what I was trying to say with dx and tx being "half the picture", and also what a brilliant resource this forum is:)

Fatigue, ugh. Recovering sufficiently quickly? Do you think we are rushed into being "all better now"? I hear docs used to prescribe 6 months recuperation in the south of France for less:)
I think we may have the same bcn...

Thanks for the advice and support, take care
x x
Highlighted
Member

Re: After all the stuff

Hi Songbird,

 

I have found the most support from those that have *been there, done it, had the diagnosis & really know how frightening it can be".

 

In Berkshire we are very lucky and have a very active closed facebook group run by 2 fantastic ladies.

 

I have posted around the forum sharing alot of all i have learned. And have nothing but praise for the likes of the forum, Macmillan, the Penny Brohn Centre ( but there are similar such as The Haven - in Fulham and Hereford i think) and Maggies Centres.

 

As on other posts i have found ACAS an amazing resource for employment issues.

 

The diagnosis & treatments are half the picture, after *active* treatments of surgery & rads had finished - i became incredibly fatigued. I was not improving from this sufficiently quickly & it felt almost at that point my problems started. For me - my breast care nurse sadly was not the resource i had hoped for & I found some of her comments insensitive.

 

Thank goodness for great friends & the support groups I have found. Hope you too find such groups / support.

 

LL xx

Highlighted
Member

Re: After all the stuff

Hi after reading all your posts, that I can totally relate to, I find the biggest question that popped out for me was "why?"
Why do we beat ourselves up over not being all bouncy and happy now that we've had treatment and there's no evidence of cancer? Why are we supposed to be back to normal?
Well I'm sorry, but I am not back to normal, by a noncancer persons definition. I am not the person I was before cancer, and I never will be again.
I am not particularly grumpy about it, just realistic.
I think in answering why, we should look to the care we have received. I say there is a complete lack of compassion for our emotional states by our surgeons and bcns etc, moving forward after treatment. They do not know how to treat us when there is nothing to cut or inject.
We should all be opted in automatically to Maggies centres and moving forward courses, as opposed to feeling self-doubt. Okay, some people may cope really well and just get on with life and won't need the service, but from the people I know with bc, and from reading these forums, a lot of us don't.
All I'm saying is that we should have more emotional support as part of treatment, and that having to ask for it is part of the problem, because it adds to the feeling that there is something wrong with us when we do need it.
I have never heard of a Maggies centre, or a moving forward course, my bcn's have never mentioned it. How did you hear about this? I was referred to the mental health team by my GP! wth?
Highlighted
Member

Re: After all the stuff

Hi there

I didn't have the time, energy or strength to go to any support groups during treatment or to seek out any psychological help  - was just concentrating on getting dressed each day and making it to appointments... I am now trying to cope with everything that my head is trowing at me and sometimes I feel this is just as difficult, if not worse than the physical side of things. In short really appreciating the forums as I don't feel that I am so alone in my way of thinking, reactions and self-doubts. Going on the Moving Forward Course soon and so hope that that will help me also. 

Highlighted
Member

Re: After all the stuff

There is actually a Maggies Centre in Nottingham. Yes, good idea to just visit for time out when I can fit it in. Thanks for suggesting it.
Bex 👱
Highlighted
Member

Re: After all the stuff

Hi Bexy1 again,
I too did not do the moving forward course due to work commitments, but have completed a 2 day Living Well course at the Penny Brohn centre in Bristol. I have also visited the Maggies Centre in Oxford and i found that a very inspiring and restful place for the hour or two i was there. These may be other avenues with similar events perhaps to explore ?? i hope you find something to help you along the path you follow at the moment x x
Highlighted
Member

Re: After all the stuff

Thanks for those links Lucy. I'm 43 (eek!) and 10 years ago I attended all the relevant BCC events offered in Nottingham. I also took part in the London fashion show 7 years ago. All fantastic support when I really needed it. The one course I haven't been on is Moving Forward so was excited to see Nottingham hosting one but...I work every morning as a TA and can't take time off during term time. Aaaagghhh!
I worked as a peer support volunteer for 5 years which i enjoyed feeling i was giving something back. But then MS relapsed and 2 young children and teaching job just became too much so I stopped. Last year I changed my job to TA and finally was managing much better. Until February when cancer developed on the other side and stopped me in my tracks again. As i am BRCA2 it wasn't completely unexpected, i just wasn't really prepared.
i don't like to say "why me?" but i can't help feeling hard done by and quite rubbish 1for bringing it all upon my hubbie and kids, the innocent parties. Anyway, i have accepted that I'll never overcome my emotional issues but want to learn to live with them instead of constantly battling. At the moment I'm trying to get used to seeing my patchwork body in the mirror without being self-critical and angry. Even my husband hasn't said it looks alright so i definitely am not convinced!
I seem to have gone on a bit now......sorry, thanks for listening, time for a cuppa eh?
Bex 👱
Highlighted
Member

Re: After all the stuff

Hi Bexy and welcome to the BCC forums

Along with the support you have here have you read about our 'Moving forward' support? This may help in coming to terms with what you have been through, here's the link:

https://www.breastcancercare.org.uk/information-support/support-you/local-support/moving-forward-aft...

I am not sure of your age but BCC offer specialist support aimed at younger women, you can read about our 'Younger women together' events and more here:

https://www.breastcancercare.org.uk/information-support/support-you/local-support/younger-women-toge...

Take care
Lucy BCC

Highlighted
Member

Re: After all the stuff

Good to see you on here Bex, I have found much comfort on these pages, it's reassuring to know that you're not the only one having certainly thoughts, feelings and difficulties after all the surgery etc. I will be checking out Sheena's thread too. Always good to share, no matter how big or small the problem.
Highlighted
Member

Re: After all the stuff

Hi bex
Not sure if it's your kinda thing but I started a thread in surgery section called surgery/results over - next steps treatment. Lots of lovely folk there who can totally understand how you are feeling right now. Talk to us and share your thoughts and feelings, both Jill and I have been signed off work for a while because it all caught up and left me feeling so tearful all the time
come and join us x
sheena xx
Highlighted
Member

Re: After all the stuff

Hiya. I've just spent a couple of hours reading these posts. I had a 2nd mastectomy with LD flap 12 weeks ago. No spread and lymph nodes not affected this time as it was caught earlier. No need for chemo or radio or tablets (despite me saying to my consultant I would elect for it as a 'belts and braces' measure). I feel like I'm wallowing in my own emotions that no-one else can really understand. I can't expect non-cancer people to get it so I've stopped talking about it really. I just paint that smile on and say I'm fine, thanks, when people ask. I also have MS so there's a lot going on in my fuzzy head if i think for too long. Anyway, it's true that writing it all down does cleanse the mind temporarily at least. I'm glad i decided to take the plunge and use this forum. Thanks for that and remember to keep telling yourselves how amazing you are to be dealing with the dreaded C in whichever way you can.
Bye for now, Bex xxxxx
Highlighted
Member

Re: After all the stuff

Hi Sheba

 

I have had the same treatment as you except that I take Anastrozole and I am just approaching my first post-surgery mammogram.  I am a very positive, optimistic person but even I have the occasional 'wobble' now and then but I think that it is quite natural in the circumstances.  I had twinges on and off for hours one day last week and felt a bit panicky but I think that my breast had just got squashed when I had been laying in an uncomfortable position in bed because I haven't had any since. Another lady who lives near me told me she feels the occasional  'twinge' too and gets worried.  I take the following practical measures - I exercise every day without fail (the exercise DVD is filmed on a beach and has jolly upbeat music) and I make sure I get out and about and have plenty of fresh air and sunshine and I have an early bed if I feel very tired. Yoga calms the mind and meditation tapes are helpful too. I do agree with you that it would be good if someone could check the results at the hospital to prevent the agony of waiting but I suppose there must be a reason for this. 

Highlighted
Member

Re: After all the stuff

I too had op and rads last July. I consider myself 'lucky' as I had no chemo, so the delayed after shock and depression caught me off guard. Then the joy of night sweats and hot flushes really got me down. I have had two cysts drained recently and suspect a third one is in need of attention. Am trying not to 

think it could be a reoccurrence so soon after December rads. I have found that my induced menopause has been made easier by drinking lots more water (I was getting regular sore throats and they have stopped), and my onc gave me permission to take sage, it has kicked in after a couple of weeks and has improved the severity of the flushes and practically finished off my night sweats. Also the Lady Magnet available at Boots comes highly recommended. It is nearly £30 but receiving fantastic reviews on forums.

Highlighted
Member

Re: After all the stuff

Hi ladies. I've not been ignoring you, I've been away on holiday. Thank you for all your helpful suggestions this is just a great place for mutual support. I've got to say I've come back from holiday in a very different and positive frame of mind ready to move on, all be it with my anniversary mammogram and a little bit of reconstruction to face. The tamoxifen side effects are still there but now my head is in a better place I can cope more easily with them too. Hoping my positive post will help others realise there is light at the end of the tunnel. Thank you again xx
Highlighted
Member

Re: After all the stuff

Thanks fairy lady and thanks to Sheba for your thoughts and support.
Highlighted
Member

Re: After all the stuff

Smiley Happy

Highlighted
Member

Re: After all the stuff

Great post fairy lady x x
Highlighted
Member

Re: After all the stuff

Hi Wemblo, there are various national Face Book groups:
UK Breast Cancer Support
Breast Friends
Breast Cancer Chatter
Breast Cancer Buddies UK
Breast Cancer Support

 

You could join those and then ask about a local group.

I found a Breakthrough Breast Cancer Facebook group Breakthrough Staffordshire and a Derby Breast Cancer Support Group on Facebook. Hope that helps.

Highlighted
Member

Re: After all the stuff

Hi all

I've just re read through this thread and you know what struck me and it is something I have seen on lots of other threads lots of us are writing a short snippet of what treatment we have had and then we put -I've had it easy compared to some...... While it is often true that there are people who have more problems/different treatments I think it is fair to say none of us have had it easy. Being diagnosed with BC is not at all easy. It is terrifying and life changing. I think we are so pushed into being 'positive' that we all try to downplay the situation.

Yes we do get on with daily life. We do grin and bear lots of unpleasant side effects and pain and we quickly learn that life carries on and for most of that we are ok But we are still terrified and the need for reassurance is never far away.

Highlighted
Member

Re: After all the stuff

Hi Wemblo, I'm not that far from you, I'm in Derbyshire, would join if you wanted to start a Facebook group. You could always PM me. Thanks Nicola x
Highlighted
Member

Re: After all the stuff

Lexilou the FB group sounds wonderful but sadly I'm in the Midlands, Staffordshire to be exact. I'd be happy to form a group if there's any interest
Highlighted
Member

Re: After all the stuff

if any of you are in Berkshire there is a fabulous closed group on facebook,,, Berkshire Breast Cancer Support Group for ladies living or working in Berks. If you are not in our county you may find you too have such vibrant groups within your county. Best wishes all x x

Highlighted
Member

Re: After all the stuff

It's so good to read your posts and know I'm not the only one feeling like this. I feel abandoned after all my treatment,(double mx with recon, no radio or chemotherapy) I had it easy compared to some but that doesn't stop me worrying that it will come back..or is still here somewhere. People see me at work with that fake smile plastered on and presume all ok...'well you're over cancer now aren't you' was a comment the other day...

I don't know if it is the menopause or the tamoxifen but by golly those sweats are not fun!!!

xx

Highlighted
Member

Re: After all the stuff

Hi All, just wanted to say I can totally identify with what you have all said. Although my treatment (Single mx with immediate recon and Snb followed by tamoxifen ) has been shorter than most of you have endured, now I am back at work (I'm 10 wks post op) I feel that people think that's it, I'm fine, yet I find I'm still constantly thinking about the bc and very frightened of it coming back in the other breast. Also have the hot sweats at night! No fun but possibly better than in the day! I think when you're going through treatment you just face it and get on with it but now there is more time to stop and think about it which is not really a good thing!
Highlighted
Member

Re: After all the stuff

Hello Leanneclaire71

 

Welcome to the forums, this must be very difficult for you.  I’m sure other users will be along to support you soon. 

In the meantime, maybe you would like to talk things through with a member of our helpline staff who are there to offer practical information as well as emotional support. The free phone number is 0808 800 6000 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 10.00 to 2.00.

 

Best wishes

June, moderator

 

Highlighted
Member

Re: After all the stuff

Hello just wanted to agree with your post. 

 

I am feeling the same and it is 3 years ago today I had my last chemo.  I was diagnosed at age 40 in Nov 2011 with triple negative bc which had spread to lymph nodes and I finished treatment in Sep 2012.  Not a day goes by when I don't think about a dreaded recurrence.  I thought it would get easier as time went by but I am finding it more of a struggle now!  I think my downfall is that I hate making a fuss and didn't express my feelings when going through treatment.  On the outside people think I am brave and strong but inside I am not!!

 

I also had my chemo at home and I think now that was a bad decision as I was totally in my own bubble and did not meet anyone in the same position.  I wish I had chosen the option of having chemo in the hospital and perhaps I wouldn't feel so isolated like I do now.

 

I know it will take time and hopefully I will be able to go longer and longer without thinking of it but wishing my fellow fighters lots of love and strength to get through. xx

Highlighted
Member

Re: After all the stuff

Hi ladies , wemblo i can so relate to your nights with the flushes ,so many early mornings spent watching catch up tv!! It's hard sometimes and now back in work everyone thinks you're back to your old self ,but you're not!! I find myself putting on an act a lot of the time and feeling so down some days and having wobbles ,generally I'm trying to move forward but as you say in the night it's a time to reflect and I finished my radiotherapy in september , last week my breast was too sore to touch so I contacted my breast care nurse who said the radiotherapy is still working ,also I've had a really sore tongue and dry mouth apparently that's a symptom of menopause so I can put that down to my age and tamoxifen!! So from never swallowing a pill ,I'm now taking something every day so that in itself is strange ,then all the side effects I've had , like you I feel something else different every week!! I don't think it's being a hypochondriac I just think it's readjustment after what can only be described as a life changing event , it takes a lot of getting used to and I think it's going to be years rather than months to get back to the old me and I seriously think I will never be quite the same , it's so good to share feelings on the forum and have the support from everyone who is going through the same journey, sending good health wishes to you all xxx
Highlighted
Member

Re: After all the stuff

Hi All

I am still having herceptin injections but had my first mammo last week since surgery, chemo and rads. I cant believe how frantic I am waiting for the results. I've convinced myself they are going to be bad and have started trying to plan my final few weeks/months. I know this is over the top but I can't seem to help it. I am keeping busy but black thoughts are never far away. I dont want to spend my time doing this but just don't seem to feel confident any more. When I was waiting for the mammo I was reading the Be Breast Aware poster, I check myself every morning in the shower and again when I get undressed at night. Each time I feel something different and really wouldn't know if there was anything to worry about. I had a lumpectomy and Sentinel node biopsy my breast is tender and painful with an obvious lump where the clips are and scar tissue.. I think I could drive myself mad with this. Waiting for the results of the mamogram is so difficult I think they should have someone at the hospital who could check them at time and let you know. 

Highlighted
Member

Re: After all the stuff

Hi Ladies. I can identify with all your comments and am finding it difficult to come up with a coping strategy. Not helped at all by the fact that friends now believe I should be back to normal now I've had clear scans and finished treatment. Being woken every night with Tamoxifen induced hot flushes doesn't help as its then when my mind is most active. From being someone who only ever visited the doctor routine checks I feel I've turned into a hypochondriac. I'm hoping to be able to do a Moving On course but locations and timings are not looking hopeful. This forum is a great support and helps me feel more normal talking with like minded people. Hope my ramblings help you feel you're not alone

xx
Highlighted
Member

Re: After all the stuff

Hi
I am posting a link to the BCC moving forward information and support which you are welcome to access:

http://www.breastcancercare.org.uk/moving-forward

Take care
Lucy BCC

Highlighted
Member

Re: After all the stuff

Hi Roloted,
I have found the post treatment phase a very tough place to be for multiple reasons. Frustrations at nor being where i thougt i mught be regarding my resuming my life, to fear of what ifs. My onc has disvharged me to self care with access to the clinuc via the breast care nurses, and i have just had my first post treatments mamo - all clear.
I am trying to revise expectations, be gentle with myself and trust the new normal will become that.
I have re-engaged with the forums, and joined a local closed facebook group. I need the support of others who have an inkling of my feelings and emotions. I wish i had taken a Moving On course, but none ran locally as i became aware of them ir fitted with my return to work.
A long posting -sorry, just wanted to let you know i believe this is the new normal, and in time it will have less focus as life reasserts itself.
Thinking of you x x
LL
Highlighted
Member

After all the stuff

After a diagnosis ,surgery, radio , and the all clear from the oncologist, since july there isn't one single day that I don't think that the cancer is still with me. I do appriciate that my ride has been an easy one compared to most so far, but there is an anxiety of knowing that it has gone. Next Mamo October and taking the tablets and getting used to to the changes