?                                    Hi  Linda

                                                 Sorry havnt been in touch been having problems with my computer, hope your doing well, I hope that i have 10 extra years (iv'e had two) so got a few more to go yet!! I find that a positive attitude helps and a good sense of humour' i to try not to think to much about my own cancer( i hate that word) but try and help others with there's and i find that this helps me a lot, knowing that others are in the same place as you and i feel that im the lucky one not having to go through any chemo.

                                                 We had a few new faces in our thursday group  two lady's and an 18 year old girl, even though it's nice to have new people it's not if you know what i mean and it's never nice to have younger one's, how lucky am i  iv'e got two lovely children and a family who would walk to the end of the world for me.

                                                 I'm glad to hear that you celebrated your 50th by goin away, what part of America did you go? and i know what you mean about insurance we went to spain a few months after i found out and my insurance was more than the holiday it's so wrong, I hope your all doing well and hope to hear from you soon

                                                                                                                                                                                                 Allison.

Hi Allison

I know what you mean about computers, I'd only had my laptop 6 months then must've downloaded something that didn't agree with it so had to have it all reset. When I reply to posts I always tend to do it in my draft email first, as I have a tendency for hitting the wrong key and everything disappears so I don't want to send something I'm half way through, which has just happened with this and am retyping it. Give me a normal keyboard any day, trouble is I can't even work out what I've pressed.

I am keeping fine, still having my blood checked for the Warfarin to keep DVTs at bay.  I now have a stupid thing called Trigger Finger, my index finger gets stuck when I grab hold of something or make a fist and have to wait for it to spring back and is getting very tender, so am waiting for Cortisone injections (I have heard some not very nice things about those, but suppose there's no gain without pain).  When I first started on the Megace tablets to treat the ESS all of my fingers started doing it and after a while stopped, so was a little bit concerned when this started in case it was related in some way to the cancer, but the GP I saw, not my own, looked at me as if I was a bit mad. Nothing like putting your mind at ease, I should have gone to see my own one as she is very understanding and if ever I have had any worries in the past, like stomach pains etc she is always reassuring and doesn't dismiss it without checking it out.   So, 1st March I'm off for the first injection. I think my body must be anti hormonal or something, as with my second pregnancy I got sleep epilepsy and still have it, when I went onto HRT I was all over the place and the DVTs are due to the Megace.

Your group sounds interesting, I understand about seeing new people having to deal with it, but to be able to talk to somebody in a similar position, even if a different type helps, but 18 is such a young age to have to deal with something so awful. The people that I met at the hospital were more understanding and we built quite a strong bond.  I don't know of any meetings around here, although with the silly hours I work I doubt if I could get along to anything, now I do miss working part time, I could get so much more done.

Hi runnerduck123,

Read your posts and I was also diagnosed 6 weeks after a TAH/BSO . I had my hysterectomy because my gyne told me there was a latge fibroid and could shrink but I elected to have total hysterectomy.Probably saved my life.. Told all was well after the operation until the phone call out of the blue to tell me there was Endometrial Stromal Sarcoma in the removed womb. A CT scan confirmed there was no spread I felt relieved,then only 3 months later after a routine CT scan to be told it had recurred.

All blood tests for fine but a further CT scan andMRI proved I needed some treatment. My oncologist put me on Aromatase inhibitor tablets but I felt I needed to research and decide for myself the way forward.  This was of course with the cooperation of my oncologist.

I went to the Royal Marsden cancer hospital in London where there is a specialist sarcoma unit and saw an amazing Professor Judson, I also met other doctors in his team, all were brilliant and I felt in extremely capable hands. Another CT scan showed the tumour and a smaller one higher up in the vagina, pelvic area. I am now waiting to have surgery on 6 March to hopefully and successfully remove it all.  Then 7-8 weeks of radiotherapy, every day, Mon - Fri, my husband and I are staying in hospital accommodation in London as we live in Yorkshire.

I feel extremely grateful that I have this wonderful team of people around me and feel positive I can now hopefully look to a brighter future.

I am thrilled that you are so well and you sound a very strong and positive woman. I didn't know of any of this until 6 weeks after my hysterectomy and until now apart from one contact from a lovely lady in Norwich via this web site ( which is wonderfl) I hadn t heard of anyone else with ESS.

It is great to be in contact with other women in similar situations, it gives such encouragement when quite often it can feel like being in a very lonely place. Even with loving family around us, there are often difficult times, up and down days, don't you think so too, but by reading posts it becomes not quite asd aunting situation and encourages lotsof hope.

Please keep in contact I was so interested to read yor posts, to feel we are all here for each other. .

I look forward to hearing from you.

Sending lots of huge hugs and best wishes

Love from Susan X  (mumthumb, my grown up children call me this as they are very tall and I'm 5 ft 4 in.)

Hi Allie,

I couldnt find anyone with ESS when I was diagnosed 6 weeks after an hysterectomy because of a large fibroid , 25 July 2011.and now there appears to be 3 of us and I also have contactvia this site with a lovely lady in Norwich, so thats 4 of us. I was also told that ESS is extremely rare but my oncologist says, treatable.

I've just posted my back ground when answering 'runnerduck123'. please read my post as I would love to hear from you. Thank goodness for this brilliant web site so as to put all of us in this similar situation in touch with each other.  It certainly helps such a lot to feel there is someone who knows exactly how we feel.

Sending lots of huge hugs and best wishes

Love from Susan X (mumthumb)

Hi Susan

It is lovely to hear from you, isn't it strange that you can be searching around seeking people in the same position and think that nobody is aware of it then all of a sudden it all comes together, thanks to Lucie for putting us all in touch.  I'm not quite sure what the initials TAH/BSO mean,  I'm not great with all these medical terms, is it something to do with total hysterectomy?  I must admit when I was going through the stages of constantly being at the hospital and having tests etc, I was a bit more up on things, but as the years have gone on and have had less to do with it I am losing touch.

Good for you for taking things into your own hands and seeking further advice. I'm sorry to read that you are still having problems and hope everything goes well for you on 6th March.  Will you have to stay in London for the whole period of radiotherapy or be allowed back to Yorkshire? (I'm down in Devon by the way).   Not having been through it myself I have no experience, but that sounds like a gruelling session coming up and I will be thinking of you.

As you say, this is an amazing site and the best place to be when you are feeling down and in need of a bit of love and encouragement. Family and friends can give so much, but there is nothing like talking to somebody in a similar position, regardless of type of cancer it is like a special sort of understanding. I worked in the same building as a girl who I passed the time of day with but never really conversed. After me getting ill, she got breast cancer, I went to visit her and she was so grateful. The girls she worked with talked with her but she said that they could never really understand how she felt and I totally agree, we are good friends now.  It is as if you join a club, perhaps not one people wish to be members of, but with no choice you have to  make the most of it.

As you say, it is lovely to be able to talk with people in a similar situation. I know I am further ahead and feel a bit of a fraud as I am not experiencing yours, Allison's and Janeyhay's worries and concerns.but I will always have an inkling of concern, especially when told it will more than likely will reoccur. That is how I was able to have my colostomy reversed, once it was confirmed it was cancer I was told it would be permanent but having problems with it the bowel surgeon agreed to reverse it as it would probably have to be re-sited when ESS returns  so have had freedom from it.

Anyway, take very good care of yourself and please do let us know how things are progressing, as I said I will be thinking of you on the 6th......

Love Linda x

P.S.  love the reason for mumthumb.We have more in common, I am 4'11", I was 4'11 1/2", so not only losing my lady bits but my height too it seems

P.P.S. Perhaps I should change my login to the waffler

You're more than welcome runnerduck123! In fact I have a confession to make, putting people in touch is my favourite part of the job! Makes me feel happy and useful so thank you too! .

I am so glad you all found each other now and I think it is a great help to the others runnerduck123 that you are further ahead in treatment as you've been through it all before too!

Lucie

Hi

It is so brilliant to read a message from such a wonderful, strong woman and you gve so much hope having gone through all this yourself and now helping others, you don t know how good  is to talk to another woman about all this and so many years on, well done, you certainly must t a special person.

You are and sound so very positive the ESS wouldn t dare raise its ugly head again.

I could have gone to my local main hospital which would have been Leeds but with Yorkshire, sadly being below the national average for cancer treatments, I feel I am in the best place and with Professor Judsons amazing team ,I don t mind having to stay in  London. e are booked into hospital accommodation, my husband says he feels much more confident that I have my surgery and treatment at the Royal Marsden. They are keeping the oncologist inLeeds infirmed of everything, so thats ok.

I am sp pleased that we have our group  and this is a brilliant site I feel very grateful to Lucie and her colleagues , theres no where else we would get such help and make friends in similar situations, and as you say, it does make a huge different in coping.

I don t think you waffle, your message was greatly appreciated, helps not to feel in such a lonely place. I m still having good days and not as often now, bad days.

I m used to be 5' 5"   I was 1uite shocked when a nirse measured me and said 5'4"   I d like to know where that inch has gone.

My husband is 6' 1" and my son is 6'3"  so when next to them it must look like 'long mop and bucket', a Lancashire saying, I grew up in Lancashire.

Very different sense of humour to Yorkshire!

We always went to Devon and Cornwall for holidays when our children were little, beautiful part of the country.

Looking forward to hearing from you soon,

Sending hugs and lots of love

Susan X

Hi Susan

Don't get the wrong idea, if you read my last message to Allison you'll see how wimpish I am being at the thought of having a cortisone injection next week and compared to what you are facing that is very embarrassing and puts me to shame.  I'm certainly not special, just very fortunate. I did had my down days, but fortunately they were few and far between and when I had mishaps with my stoma bag I used have friends in fits of laughter, in fact my hospice nurse wanted me to write it up so she could show it to new patients but couldn't, it's one thing telling somebody face to face and seeing them laugh with me, but reading it, I could imagine the horror somebody who wasn't in the right frame of mind to read it.  As I have said previously, without  a sense of humour I would have gone nuts.

You are very lucky to have such a great team at the Royal Marsden. My Oncologist went for a meeting there back in 2002 to see what he could find out about it, not a lot at that time it would seem.  I had a tremendous team nurses and doctors alike and do feel that goes a lot way to help if you can put your trust and faith in them.

I agree that this site is so good, I really do wish I had had something similar back then, just to be able to say I am having a bad day. The doctors told me as much as they were able, in fact the only question unanswered was How Long?, Obviously this was never going to have an answer and would I have wanted to know? I always thought I did, but am not entirely sure.

My mum passed away 2 years after diagnosis, I felt that I had taken a couple of years from her with the shock at the time, but in a way, not being able to work I was able to pop down to Cornwall more often to see her and have quality time together. It was then that I started a new part time job and was brought out of my shell again. Unfortunately with all the medication I am on it didn't leave much room up there for taking in information and retaining it,  still I get by..... just.  I work with younger girls so put it down to my age.

Just keep the messages coming until you head off for London and do keep us informed of how things are going.

Love

Linda x

Hi Linda

You sound an absolute gem, Linda, and to have such a brilliant sense of humour after all you must have gone through is remarkable, so don't you dare put\ yourself down, !  Seriouly , it is so reasurring to hear about the progress you have made and still doing so well.

I was diagnosed end of Sept 2011, so I did wonder if I would stll be here at Christmas.

I have no idea why the above part is in block letters,  my laptop does these silly things  I really have no knowledge of computers, my moble is strange and does daft things, Sorry, I'm rambling on a bit.Its so brilliant chatting as I m quite nervous about the surgery and the radiotherapy but I know it has to be.

How often do you have the cortisone injection, does your gp do it or is t a hospital visit.

Sending more hugs and looking forward to hearing from you again

Love Susan X