I’d love to hear from any women in Edinburgh who have young children and are recovering from a mastectomy. I got through it all last Xmas - I have two kids 2 and 5. Though I was very lucky just to have DCIS and no spread into lymph nodes and therefore no further treatment I still would love to just meet or talk to someone else locally who has been through the same kind of thing. Please do get in touch anyone!!
L xx
Hi L
I live in Falkirk but work in edinburgh, last year i had left mastectomy then 7 months chemo, 1 month rads and now on tamoxifen. I have 2 kids but slightly older than yours, they are 10 and 13 both girls. Id love to talk to someone local as i have been trying to find a support group to attend as I find talking to family and freinds difficult as they dont know how you feel.
Ails x
Hi Ails,
Lovely to hear from you. Where are all the Edinburgh women with one breast!?! I’m so sorry you had to have chemo and rads - I do hope you are coping okay. I was very lucky and got away with just a mastectomy - even though they misdiagnosed me and I had this apparently for 2 and a half years! But I still feel stressed out by the whole thing. Have you visited the Maggie’s centre in Edinburgh? They have a young women’s group there on Weds evenings I think. I thought I was coping fine but I think it hits you most almost (not talking about he horrendous stress whilst in the midst of it all) after treatment has finished. So I went a couple of weeks ago to see a very nice woman there called Isobel who listened to me for an hour. She was very sympathetic and I would highly recommend her. Even though the risk of return is fairly low, 20% I think in my case, my biggest challenge is the fear I feel about the future. After all the risk was even lower first time round and I got it, so why should I feel reassured? It’s not rational, I know but the fear just won’t go away. Every time my youngest comes and hugs me and says: I love you mummy I have a stab in my heart. I feel this has really tainted my absolute joy in having my kids because of the anxiety for the future. I wonder if you feel the same? Certainly, none of my friends understand nor seem to care. I do feel very isolated by this experience.
Much love to you,
Linda X.
Dear Linda and Ails
I thought you may be interested to know that Breast Cancer Care runs Telephone Support Groups for Younger Women with breast cancer. These groups meet for an hour a week for 8 weeks over the phone, up to 8 women take part in these free, confidential groups and they are facilitated by a therapist and a nurse.
If you feel you would like to talk to other young women with breast cancer please either call the helpline on 0808 800 6000 or e-mail <script type=“text/javascript”>eval(unescape(‘%64%6f%63%75%6d%65%6e%74%2e%77%72%69%74%65%28%27%3c%61%20%68%72%65%66%3d%22%6d%61%69%6c%74%6f%3a%74%65%6c%65%70%68%6f%6e%65%73%75%70%70%6f%72%74%67%72%6f%75%70%73%40%62%72%65%61%73%74%63%61%6e%63%65%72%63%61%72%65%2e%6f%72%67%2e%75%6b%22%3e%74%65%6c%65%70%68%6f%6e%65%73%75%70%70%6f%72%74%67%72%6f%75%70%73%40%62%72%65%61%73%74%63%61%6e%63%65%72%63%61%72%65%2e%6f%72%67%2e%75%6b%3c%2f%61%3e%27%29%3b’))</script>
I do hope you find this of interest.
Kind regards
Lucy
Hi Linda
I know what you mean about the feeling isolated especailly after all the treatment, I managed to work through all my chem and rads but have now been signed off sick due to stress. Just cant seem to cope with anything - crying as i write this and i dont know why - I always thought i was strong but through this I think you need to be extra strong !!! I agree its dealing with your kids that is the hardest, I have been very open and up front with mine at all times so they dont feel that im hiding anything from them. But when my 10 year old asks about what music i want at my funeral it just makes me fall apart. I havent been to any sort of support at Maggies or anything like that - I think its a pride thing want to be seen as coping - but i know im not now - just dont know if I could muster the strength to ask for help which i know sounds silly but iv always been very independant and headstrong.
I hope a few other one boobed edinburgh gals join our thread lol
Sending you love and hugs
Ailsxx
Hi I am a young one boobed Edinburgh gal but have no kids, nor am I likely to any more, so can I still join in his thread. There seems to be a lack of threads for people from Edinburgh. I suppose I could have started my own. I should maybe head down to the Maggies on a wednesday night. I spoke to Isobel there aswell and she was lovely made me feel totally at ease. I had chemo, rads and herceptin. Dx in Dec 05. Hoping to have recon in the autumn. Single, working full time and self sufficient so I basically have to get on with it. Also it is difficlt to get to these groups as I work shifts. (I should stop feeling sorry for my self and make an effort)
Hi Imlauder
Welcome to the thread - the more the merrier!! I know what you mean as I work full time and have two kids so tend not to make the time to go along to any groups. I know I should make the effort but its all a bit scary !!
ails
Hi girls!!
So glad we have a little group of our own going now! You two have been through such hell with all your treatments - you are fantastically strong both of you.
My weakness is that though I only had a mastectomy I have been ill all my adult life (long story, but basically my immune system got shot while getting a weird virus on my year out travelling after uni. So I’ve struggled so hard with that illness (ie. - horrendous bedridden years etc) and felt I had scraped back some kind of life with my beautiful kids and then bam - this and so I’m just not as strong as I should or could be in coping. I’m feeling incredibly hateful and jealous of fit old people at the moment!!
I’d quite like to make the Maggie’s meeting but by the evenings I am SO knackered. I can force myself out on a good day in the evening but not feeling too hot at present. I too am crying at strange moments. I found going to Maggie’s very difficult as I felt that I didn’t have a bad enough diagnosis - but the truth is on top of my main illness I feel weak and vulnerable. Ails, I agree it is SO hard with the kids - that’s my main struggle. I don’t care about the statistics:I feel a stab of pain every time I have a lovely moment with my kids as I can’t get the fear out of me for the future. It is definitely not something I can control which is odd as I have battled through immense difficulties before.
Imlauder - what kind of reconstruction are you having? I was told I was too thin to have the favoured diep thing by the p. surgeon (I’ve put the weight back on now) but dont’ want to go under general again anyway as I was badly affected by the anaesthetic during the mastectomy and don’t want to spend another night away from my youngest. I’m looking into the option of having something done under local anaesthetic - I have no idea if this has ever been done. Something simple maybe like an implant. I had thought I would be okay with one breast - and on one level I am - but on another level I hate it. So …
Sending love to you both,
Linda
Hi LInda,
Despite my gruelling treatment and a bad infection which included a 3 week stay in ward 2 I felt a bit awkward at the Maggies some times as I did feel really well for the firs few months and then when I felt unwell I was either working (my own business at the time) or too ill to go any where. I feel nackered alot aswell but I have to keep going as there is only me (boohoo)
You seem to have had a rough time so make use of the Maggie centre thats why they are there. I felt guilty getting money from the McMillan but I had no choice as the business folded and I had to clear all the business debts which left me with nothing.
Any way luckily for me I have plenty of spare flesh on my belly so they can use that for my recon. It will be done at St Johns. This will involve a weeks stay and some time in ICU.
Take care
louise
Hey Gals,
I think with this horrible disease everyone is brave in their own way, and I think all three of us are proof in that. Im hoping to have recon at a later date and being only 38 and currently seperating from my husband of 14 years, Ill prob need two boobs to bag another man lol.
Im sorry you are too exhausted to head out at night Linda, if you ever want to meet up in edinburgh just for a coffee or lunch just let me know !! And Louise if you work in Edinburgh the same goes to you too !! its good to talk as they used to say in the BT ads
keep strong and positve
Ailene x
I am not in Edinburgh but I live and work in Grangemouth so fairly close to you ladies. If anyone fancies a meet-up I would be interested.
Hi Lilac
Im in Denny and trying to set up a local support group if your interested??
Ailene x
Hi there,
Sorry to hear about your business Louise - what a nightmare. That’s what people don’t realise - other things have to be coped with as well as the actual disease and treatment. Ailene - do you know what kind of reconstruction you might have? I don’t know yet if I can cope with being like I am now for ever though I am very lucky that I have been with my husband for a long time. I wouldn’t want to be dating without two breasts so I sympathise! Although my husband thinks that if guy really likes you he won’t care as much as you think. From our point of view though it is such a loss.
I’ve now decided to tell one or two more people but I don’t know if I have made the right decision. Now probably everyone in Edinburgh knows I have only one breast (the school run grapevine…) which I hate. But I sort of felt that maybe I was isolating myself by keeping it quiet. I don’t know.
Would love to meet up. Centre of Edinburgh anyone? I’m free morning next Tuesday or then the week after sometime (though not Monday). What do you think? Any suggestions of where?
Linda x
Im off on Tuesday but busy at work for a wee while after that. Im up for meeting in town.
Tuesday in Edinburgh would be good for me too!! we could meet at the costa coffee in Waverly Shopping center opposite princess street !! or if you know of any where better ??
Ailene
Ails - sorry to take so long to get back to you. I would be interested in meeting with ppl but I don’t have transport so would need to find out about a bus service to Denny. I also work full-time so if you were planning day time get togethers I would have to pass.
Hi Lilacblushes
I also work full time, so I was thinking of evening get togethers!! I was thinking of trying to set something up in falkirk as its easier for everyone to get to!! As you can see a couple of us are thinking of meeting this tuesday morning !! dont know if you would be free !! hope you would be !!
Ails
Sorry I can’t make Tuesday as I will be at work. I’m off Thursday through to the following Wednesday but I am going away up north Thursday and returning Monday.
Hope you have fun meeting up with the others and I would be delighted to come along another time or meet in Falkirk one evening. Let me know if you get a group together.
What about Oloroso at 33 Castle street - they are open for coffee from 11am. It’s got a nice view (in case you don’t know it it is next door - one or two doors down - from Cruise and you have to take a lift up and then some stairs up to it. There are nice sofas opposite the bar area. How about it? 11am?
Linda x
Sorry to butt in on your thread, but cant help having a giggle at the title, there are two ways of reading it. ie children recovering from mastectomy.
Have a nice day when you meet
Mary
xxxx