Endometriam Cancer Grade 111C; coping with low survival rate info

Good morning,

Well today is Canadian Thanksgiving and Jenny and Steve are cooking a Thanksgiving dinner for us.  The girls and their boyfriends will be here and John's sister.  It a shame that John is on the other side of the pond but we will skype him later and at least he can feel part of the family.  Today is for Steve (Jenny's Canadian boyfriend) and to make him feel at home.  

Our 3 daughters are Jenny - 27 living in Toronto, Sarah - 25 who lives with her boyfriend about 10 miles away and Amy - 24 who lives here with her boyfriend.  It worked very well when we were living in New Jersey because Amy and Adam looked after the house and the cat and we also had a home to come back to every 3 months.  Now I sometimes feel I am in the way - although they would never say that.  Still it;s only for a few more months and then after Christmas we should be trying to get some kind of normality back into our lives.   Because I haven't been really ill whilst undergoing chemotherapy I have still been able to do all the shopping, cooking, laundry etc.  I have actually quite enjoyed being in England for the summer because Amy and Sarah are teachers we were able to spend all summer together, walking, talking, blackberry picking and even doing  jigsaws together.   See - every cloud has a silver lining and if I hadn't come back to the UK for treatment I wouldn't have had this summer with the girls.

Thanks for all the useful info on diet etc for when I start radiotherapy - not very glamorous is it - haha.  Did you need brachytherapy?  It sounds as though you have had 2 long courses of treatment.  Mine is 20 sessions over 4 weeks.  I asked the consultant how do they know where to zap when the uterus isn't there anymore and she told me that they tend to zap where it used to be!!!  Seems a bit vague to me and the reason the bowel and bladder is affected is because it is so close to the area and cannot be avoided.  

Anyway some good news today - 2 weeks post chemo and I can actually feel some stubble on my head - yeh, hopefully should have hair by Christmas - what a great Christmas present.  Did you lose your hair through chemo?

John called me yesterday to say that he had spoken with our insurance broker in America.  We were concerned as we have Amerihealth over there and because they don't even know I have had cancer, that they would not cover me when I returned.  To cut a long story short he told John that Amerihealth should take us out for a slap up meal as we have saved them thousands of dollars by having treatment over here and there will be no problem with contuing coverage.  American health insurance is so expensive and even when you have insurance the co-pays are ridiculous.  

You are going to be a grandma - now that is really exciting.  The most upsetting part of my diagnsosis for me was thinking that I might not be around to help my daughters with their children.  I wouldn't have such amazing daughters if it hadn't been for the help of my mum and John's mum and I believe grandparents play a vital role in children's development.  

Great advice from your friend about dealing with things in bite size pieces - that is true to anything in life.  Whenever we feel overwhelmed, regardless of what the task is - break it down and deal with it bit by bit.  Depression is normal for cancer patients but I also have a lot of friends and family on anti depressants which is really sad.  A lot of people I know struggle with everyday life without having serious health issues - a bit worrying really.  

Oki doki, I am going to make a chocolate guinness cake for dessert.  Have a wonderful Sunday.

Love and hugs

Lorraine

x

a lot fed up!!!! lost the whole page to you...at least I think I did....

in a nut shell..envious of cake...shall just have to put up with ice cream at tea time with Sergio (my companion of 20 years) instead. oh dear.

spent the whole day looking up a holiday on Ischia for when I finish the last treatment!  Off on Nov 9th for six days (with doc permission)....it'll be wonderful.  Blow those dreary cobwebs out to sea on the funky ferry boat out of Naples.

no didn't have brachytherpay. not sure what it is.i had 30 days of zapping on the pelvic area and am having another 30 zappings on the area higher up (corresponds to where the stomach is).  

the RT kills any random cancer cells around the cancer area we had that have a mind to multiply, (nasty littlecritters) that the chemo didn't wipe out in its general, through the blood stream, kind of way round the whole body.

- am extremely pleased with Italian national health scheme for cancer patients. - had excellent care and am pleased I wasn't living in Hereford at the time of diagnosis because ffrom what I read on the blog you contributed to, about national Health and cancer versus private etc, well, it sounds a bit dismal in poor old England at the moment.

You mention silver clouds. you are wise. On my good days I spot them too. I'm getting back to being in a better place now.  If I hadn't have been in such a bad spot the day I blogged,well, I wouldnt be enjoying our conversations so much. Thanks a lot for turning up Lorraine.

- or looking forward to going to Ischia.

Maybe next week,when I know more,I'll tell you what other bight sized moves I'm making to help deal with this next bit. I've got something cooking.  I think.

This afterwards bit.  Looking forward and making helpful moves and creating plans, even little ones, towards being mentally well and not being obsessed with the idea that I might be getting cancer again, or dying soon.  Like you,I don't think that anti depressants are a good idea, generally.

Again, thanks for being there...lets hope this goes xx

Good morning from a very sunny Sale, England.  We are definitely having an Indian summer here as it's beautiful.  I have just taken Jenny and Steve to the station as they going to London for 4 days.  Came back home after sitting in an hour's traffic and thought I would send you a quick message to see how you are doing.

I read your blog with interest and think you are incredible.  You are far stronger than you think and you will get through this even if it seems as though it's one step forward two steps back.  The only way I deal with my prognosis is to compartmentalise it and try not to dwell.  It doesn't work for everyone and it doesn't work all the time for me but I made the decision that I was not going to sit around and worry about the cancer coming back - hence going back to America in the near future  John and I have talked about what we would do if I have have a recurrence and quite frankly we will deal with that when it happens and accept whatever treatment they recommend.  Cancer is treated more as a chronic disease now and can be controlled for many years.  

You have done so well lifting yourself out of your depression, reaching out and not internalising it.  Wouldn't it be lovely if you lived round the corner and we could have a lovely cup of tea together and a chat.  Not to worry I am having a cup of tea whilst I write this to you.  

I am going to visit a friend in hospital this afternoon who has just had a hip replacement.  Knowing him, he will be up and doing cartwheels round the room in no time. He is in a private hospital and has invited me for lunch so it will certainly be different.  I am then going look for a housewarming gift for our close American friends who have just moved into a beautiful new home.  They have a 2 year boy and 9 month old triplet boys.  Can you just imagine that.  I used to help out with the babies and they even offered me the job of nanny - pins in eyes are preferable, haha.  I love babies but 4 under 2 - never.  .I actually had 3 babies myself  in 3 years which turned me into a robot for quite some time!!

Have a wonderful day and be gentle with yourself.

Love and warm hugs

Lorraine

x

I do wish you were round the corner too - and we could have a really nice natter.  I'm enjoying this blogging with you very much and feel that you are very warm and 'true'.  Thank you.

We might end up meeting mightn't we?

My computer crashed on Tuesday so it's taken me a while to get back to you.  And there are so many emails to reply to. My family have all been writing (there are lots of us!) and loose ends to do with my holiday in Ischia etc.  So this will be extremely short for now.

I did want to comment on your move back to USA after your next set of treatments.  It sounds like a very good idea.  I noticed a few days ago, fomr something that you mentioned,  that you did not always feel as comfortable as you'd like to sharing your home, even with your most loved ones. It's hard to be around loved ones and for them to be around us. So to be with John sounds better. Somehow our partners are close in a different way. A more equal way.  They don't parent us and we dont parent them!!   I can lean on Sergio as much as I need, fortunately.   He comes and go's from work, makes sure I have what I need. Listens to my moans and changes, (up or down) basically what he does is he holds my hand, as a good friend and shares the emotions and i don't spare him a thing, like I didn't when we shared bringin up my boys, and before that, when we were passionate lovers. and he doesn't expect anything of me, other than 'me'.  It's an easier dependencey that  with/on our children (who, obviously, we dont want to see suffer or be burdoned by our illness beyond what's kind) isn't it?  

Can you have somoeone come and help you with the chores if you feel weak at some point later on?  That would be perfect. We don't always feel up to everything.  At least I don't.

I'll write again,; thanks so much for your well wishes, I wish you well too, and lots of gentleness too, all around,  Lorraine.

Love Penelope x

Hi Penelope (do you prefer Penelope or Penny?),

Good to hear from you and to hear that you are feeling much better.  Your holiday sounds amazing and I bet you can't wait.  We had a wonderful holiday planned this year as it was our 30th wedding anniversary in July but because of all the treatment we have had to postpone it.  Not to worry I am sure there will be plenty more opportunities.

My CT scan was cancelled last Friday which infuriated me as John's flight was scheduled to land on Friday at 9am so that he could accompany me to the hospital.  The only time they could rearrange was Tuesday 20th which was my 53rd birthday.   I am all set now for my radiotherapy to start on Monday 26th at 4pm.  I also have an appointment with a gynae advice nurse in 2 weeks time because of the brachytherapy. I was told by my consultant that this cancer tends to recur at the vaginal cuff so brachytherapy prevents it happening (hopefully). This is where they give you radiotherapy internally and can cause shrinkage of the vagina etc. Apparently you have to use dilaters indefinitely after this treatment - yuck (hey, maybe plenty of sex will do the trick instead, haha).

We've had a wonderful week with Jenny and Steve and have taken them all over looking at the beautiful English countryside and had quite a few pub lunches - I seemed to have gained a few pounds since my last chemotherapy - drat.  I quite liked being slim.  I had a lovely birthday and it was nice having all 3 daughters together to celebrate.  They cooked a lovely dinner for me and spoilt me rotten.  It's also great to have John here for a while as he will be staying until I finished radiotherapy.  

Right now I feel absolutely fantastic and don't have any side effects from the chemotherapy (apart from hair loss).  I hope I handle the radiotherapy just as well - fingers crossed.

So what have you got cooking dear - anything exciting?  It so sounds as though you have something up your sleeve!!!  

Hope you are continuing to get stronger every day and feeling much brighter.

Love and hugs

Lorraine

x