Hi I'm new

Welcome to What Now. There are indeed a lot (unfortunately for you all) of BC patients on here, and I know that they will be along any minute to offer you assistance. I am surprised that you have not been offered any emotional help, as it is one heck of an experience to go through unsupported! Are you in the UK? If so, please do contact the Cancer MacMillan nurses (via hospital or via gp surgery). Everyone else also seems to mention a "BC Nurse" of their own.

I want to wish you all the very best with your recovery and recuperation. Lotsd of love and hugs (gentle ones) xxx Penny

Hi von
like you i only found this site a few days ago[thank god] i had lumpectomy and lymph biopsy 4 weeks ago.
thought that i was going to have some radiotherapy and that was going to be the end of it.
Was taken aback when they said i needed the chemo aswell.
Made me sit up and want to change my life for good get rid of the STRESS thats for sure.
I felt quite issolated when i was diagnosed myself. As a nurse myself i think everyone just assumed that i knew everthing there was to know, they couldn't have been more wrong.I found i got most of the support i needed from my best friend [who lucky for me is a cancer research nurse]Together we researched everything possible.
Hope we can all help support you.
lol

Hi

Thanks for your reply.

I have been in contact with a BC nurse, but she just seems to offer medical advice. Its really nice to be able to talk to people on here who've had similar experiences, I find it helps a lot, just having someone to talk to is great.

I had a problem the other day with my self esteem, which shook me, as it was so unexpected! Do other people have the same problem?

I may have to have a skin graft, some of the skin has died on my boob, has anyone had the same?

Once again, thanks for your reply.

Von xx

Hi

Thanks for your reply. Its so nice to have someone to talk to!!

Von xx

Think they are all on their hols, so I shall write again in the meantime. Although I'm not a BC patient, I can imagine you being assailed by sudden self-image/self-esteem doubts. This must be very much intensified for BC, although I had it a little bit because my treatment sent me hurtling through the menopause, and I put on weight and got loads of wrinkles almost instantaneously! I also lost my job, so it's very much a question of "Who am I now?" So sorry that you aren't being offered emotional support as part of the package with your treatment: it seems that this is another part of the postcode lottery, as some people seem to get quite a lot of regular support, and some of us just get some intermittent sessions after finding our own way there through the maze.

Have you been offered any complementary therapy sessions? I got six sessions via my Cancer MacMillan nurse booking it for me, and they really turned me back from an NHS patient into a human being. I had a choice including foot massage (reflexology), and aromatherapy, and found the latter very soothing and emotionally detoxifying.

I also recently sent off for a free DVD from the Penny Brohn Centre near Bristol. Their therapies do NOT claim to cure, but you might find the self-help suggestions and listening to users talking very helpful for a way forward: tel 0845 123 23 10. They discuss diet, various self-help measures and also coping mentally/emotionally with our illness.

Lots of love xxxx Penny

Hi

Thanks for the info re complementary therapy, I will ring my BC nurse to see if its available. I'll also ring for the DVD.

Sorry to hear about your problems, especially loosing your job. I applied and got a new job with the NHS where I already work, before my op. I have not started the new job yet, so I hope they'll hold it for me!! I think they should do, as they knew about my surgery when I had the interview. Its quite a manual job, so I'll not be able to take up the post until I'm fully fit.

Thanks again for the info!

Cheers

Von xx

good luck with that one, and it's lovely that they will be understanding about you not lifting/carrying heavy things. xxx Penny

hi von

hope you are feeling a bit sunnier today.
Good news about your job. Likewise i work for the NHS and so far my sick package is pretty good, so one less thing for us to worry about.
I think i will need to retrain and become a BC nursse myself fill in the gaps that we both have experienced so others don't have to go through it feeling alone.
take care
Denise

Hi

Like you I've recently had a mastectomy, not breast cancer but a cancer in the breast. So although a lot of the treatment is the same, there are differences, e.g. I'm 10 days into RT but won't have chemo as it isn't very effective.

I didn't get any support. The day after the op (8 weeks ago) the doc asked if I'd like a shower. When I said yes he told the nurse to remove all the dressing, find a carrier bag for my drains and let me get showered and dressed and go for a walk. There was no talk of support for the first time I saw the wound, how I felt or anything like that. I saw a BC nurse once, 10 days post op, but not heard from her since.

I've been advised not to have a reconstruction for 3 years as I have a high chance of recurrence. That wouldn't have been so bad but I didn't realise I could wear a softie straight after the op, didn't get one for 10 days (when the nurse mentioned it). Once I got the softie I was fine, I'm back at work in London and unless I've told them, no-one realises I've had a mastectomy.

Anyway, all this was leading up to me telling you that I've got my confidence back and am getting on with life. The lovely folk on this site have become friends and have helped far more than anyone at the hospital.

I hope all goes well for your
love n hugs
Sharry xx

Very shocked by your experience with the doctor and the shower, Sharry. Honestly, can these people not have any imagination about how their patients might feel? It's great that you've got your confidence back - but no thanks to them. Lots of love xxxx Penny

Hi

I am shocked too! I wasn't able to have a shower until a week after I got home. Its quite frightening, seeing the scars! some of the nurses in hospital were great, but some were quite rough with me and some of them kept pulling my attached drains by accident!!!

Thanks everyone for the encouragement. I think my confidence will come back, when my scars etc have healed, I am worried at the moment in case people bump into me! I guess the hardest part will be returning back to work after a long break. I am going to talk to my manager, when the time comes, to see if I can phase back to work slowly, so as not to over do things at first.

Cheers

Von xx

It was good to read your message. On Monday I am having a double mastectomy and I had been wondering about looking at the scar, showering etc. I can well imagine that I might not get much emotional support and I would rather go in prepared. It is good to know you have your confidence back - keep going!

It is so helpful to read of other people's experiences. I am having a bi-lateral mastectomy on Monday and have been wondering about showering etc. It seems as if different hospitals do it differently. My hospital have said there is no problem with showering or bathing - just do it! I wonder if they will actually prepare me for looking at the scars though. They haven't been wonderful on the motional side so far. Even when I have spoken to the Breast Care Nurse about my feelings, she has been very matter of fact. I have had to weight 6 weeks for the op and four weeks ago she wanted to spend time with me. She described (in gruesome detail) how they would operate on me. She then gave me some prosthesis to take home with me - stating I might not like to leave the hospital flat chested! This was far too early to be talked through all these things and I have had to control my thinking ever since.
You can only take so much on board at a time. I am nearly there though. This time next week I will actually KNOW what it is like and will probably realise many of my fears were groundless!

Seems like to this BC nurse it is just another routine day - whereas for each and every one of her patients it is life-changing. Seems we need to put that one up for a What Now Tactlessness Award.

I'm so glad that you are recognising that a portion of the worry you are feeling is The Unknown. Yes, I agree that one needs to adjust gradually to radical changes, and I really think that you should have been offered more emotional help. I suppose this is why every hospital trust so desperately needs a Maggie's Centre. They are trying to raise money for one in our city - think they need about £3 million. I know that I'm an artist, love going to look at art, and have friends who are hoping to exhibit there, but my city is having TWO new arts centres, and there doesn't seem to have been all that much trouble raising tax-payers' money from various pots to fund them. Well, my artist friends would kill me for saying that, but I do wonder if any city really needs two of the same: surely some of the money could have gone towards a Maggie's Centre?

Lots of love and very best wishes for next week. Thinking of you. xxxx Penny

I contacted my BC nurse to ask about any emotional support, I(and my husband) can have, and any complimentary therapies. she told me they were available! Why is this information not just given to us, why did I need to ask?

I agree, that some nurses don't seem to realise what an impact BC can have on people and they should be more supportive!

My experience was, I was told I couldn't have a lumpectomey and my only option was a mastectomy (all matter of fact!). Then I was given a video of different reconstructive surgery, from which I had to make a choice. there was no emotional support at all.

I must admit everyone was nice to me, but it was all medical information and no emotional support before the op at all.

And even afterwards, although staff were nice, there's no emotional support unless you ask for it. My BC nurse is sending me some info in the post, so I'll see what they have to offer.

So my advice is to ask what's available, as they don't seem to offer unless you ask first!

Von xxx

Hi Von,

I hope you are finding everyone on here of great support to you.
I too had the cancer in my milk ducts. After lots of biopsies (I dont know why they done them when they were going to take the breast off) and no definite sighting of cancer they decided to get on with the mastectomy. They did then find cancer present also in 1 of my lymph nodes. This was followed up by a course of FEC chemo therapy. I went through all the hair loss and roller coaster emotions. That was all 3 years ago. Unfortunately I was not into computers then so didn't get into this site.
Since then I have got on with my life and this year decided to have a reconstruction. You have done one better than me, I was not offered breast reconstruction let alone given video's about it. I wont bore you with the facts as I have written blogs about it. In short, that went a bit pear shaped but i am due to go and have it sorted in November. All in all I look back and find it hard to believe it was me that went through all of which you are going through now.
The emotional side is so different for each person. What I found hard is that all of my bc friends had tumours and no one new what I was talking about when I said that mine was not measured by size. The reassuring thing about it, is that it is still in the very early stages so quick operation and treatment offers the best results. I found mine by chance as i was too young for mamogrammes.
We had a monthly meeting at my hospital, organised by a former bc patient. They were really lovely people. But after my first visit I decided it was not for me.
I wish you all the very best with your ongoing treatment. Please e-mail or pm me if there is anything i can help with.

lol and hugs

Debbie and Aprilxxxxxxxxxxxxxxxxxxxxxxx

Hi

Thanks for your encouragement. It is hard to beleive it when told you have BC, especially when there's no lump or any other symptoms as in my case. All I want to do now is recover from the op, and hopefully get the all clear, so I can get on with my life! I must admit, I was lucky to be able to have the reconstrution and the diep flap, there seem to be lots of people who didn't have that choice.

I've a portion of dead skin on my reconstrucion, which the Dr's think will grow back. It does seem to have pink around the edges, so I am hoping this is a good sign. I see the surgeon on Monday, so fingers crossed!!

Good luck with yours, I hope it all goes well for you in November!

Its so nice to have someone to talk to!!

love

Von xxxxxxxxxxxxx

hi von :)
i am also new to this site,just found out about it today
i also got diagnosed with ovarian cancer in march this year and had my ovaries removed,i am now having chemotherapy to make sure it hadnt spread elsewhere or makes a return,well thats what my consultant told me :)
i hope all is going well with u
i find it nice to chat to peaple who are going thro or similar things to u as they understand more about it :)
i have a friend that is on here and shes the 1 who introduced me to the site. I think it is great as we are all here to support each other :)
takecare hun xxxxxxxxxxx

Dear Von,I joined ages ago while going through my second lot of BC,I had forgotten lol.My second lot of BC was 2 yrs ago,and Im on a waiting list for a Diep flap.I dont know anyone who has had one also dont really know how expert my plastic surgeon is,everyone is always talking of Elaine Sassoon.They say she is amazing at Diep recons.Ive read a few of your posts,ive just come on for the first time so getting the hang of it.bear with me.Hope that your self esteem is on the up,would love to hear from you and talk abit about the op.Im terrified of having it done,mainly because I dont want to be in hospital for a whole week.Look forward to your reply,best wishes Debz

Hi Von, I just joined tonight. I have had BC twice. First was two years ago this month, Invasive Ductal Carconoma, had Lumpectomy, chemo and radiation.Last year at my one year I had DCIS. At that time I decided that I would have a double mesectomy. Yesterday I went in for my one year again and this time my oncologist said that all looked well. I guess I am still nervous.

Hi joanieG...you wrote to Von,my posting was to her from me `Debzz1`im new so thats why I got mixed up lol.Anyway thanx for your reply,my second lot was a recurrance on my scar site,but still scared me to get it after 10yrs being free.Congrats on your `one year free!`Lets hope things carry on this way for us both-im in a dilema about being on the waiting list for a recon uasing Diep method-im hoping someone from Glasgow will write back and give me some support.Take care Joanie from Debs

Hi Debzz

I am really glad I had the diep flap reconstruction. The op is quite long, about 7 hours, but I think its worth it. I now have a flat tummy and a new breast! The breast shape is excellent, and no one would know by looking at me, that I've had the reconstruction. I had mine straight away after the mastectomy, so they used most of the skin from my breast, and used the fat from my tummy to 'fill' it.

You do need a week in hospital, as it is a big operation. Also you'll need someone at home to look after you for the first week after leaving hospital. I had mine three weeks ago, and I can potter around the house and go for short walks. It does take time to recover, but I think its worth it.

Hope this helps

All the best

Von xxxx