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

Happy Birthday.

And Happy No- More- Chemo.

And really lots of well wishing for the Radio Therapy, which I read  you've just begun.  

How many have you got to have?  All in all.

Do you have to go every day?  Is it far from your home?

Brachytherapy and dilaters and vaginal shrinkage sounds like a real ball !! (strane pun?)  Poor Lorraine.  There's not much dignity in this is there?  But good sex sounds like a nice thought to hold on to through it all! Good for you.TOP LADY LORRAINE.  (even sounds quite, porno doesn't it? good)

I finish RT Friday!!!!! Finally!!!     I've been going every day since August 5th and I am exhausted. I live in bed these days. It's fine. It's my decision. If I try to move around, I get white as a sheet and I feel rotten, so to avoid that I just rest up. ( And dream up great plans for the immediate future).

Either Sergio, or my eldest son Sam pick me up on their motor scooters at 7.45 and we get to Radio by 8!  Italian style (phew!). Radio Therapy schedule is usually punctual and so I'm often home by 8.30 in the morning - and Sergio and Gwyn manage to get to work on time.

Your birthday sounded wonderful.  We get lots of spoiling now don't we? The love is very  beatifuI isn't it? My family have told me I'm going to be spoilt rotten on my birthday too - on 8th November!!!  (I'll be 62) Sam and Daisy (who is pregant more than 5 months now) are coming down from Milan.They'll be staying at Gwyn's flat (because I've got a cat -and Daisy can't be near cats because of the Toxiplosmosis thing).

- We want to have a Thanksgiving, so they will be stuffing and cooking the tukey (and the lasagna)!!  Josefin (who is Gwyn's Swedish girlfriend) is bringing the cakes from the cake/ bar shop she works at, in the centre of Rome.  She knows my soft spot.

I lost my appetite on Radio, but the really bad news is that my sweet tooth truly developed. (so like you, I'm gaining weight instead of staying as nice and trim (?) as I was after the op).

(Note: For the cancer recovery notes here: I do try to eat my food..but it takes cunning on everyone's part...spinach, uck. meat.'oh no'...but I do get it down somehow)

On another note altogether, my sister in Hereford, Ruthie, sent me a 7 minute video of her house and garden in the rain in Hereford and now you tell me about your trips round the lovely English countryside. pub lunches (oh boy!) and I can almost feel how great it is. England is so beautiful isn't it?   I'm homesick. But again, its OK.

I bought a ticket to go and stay at Ruthies on December 8th till  -13th. I'll convalesce in front fo her fantastic fire, with her dogs and cats and kids and I'll see my other sister Teresa and one of my brothers who lives close, Matthew.  And I'll see a few old friends too. AND I want to buys some Christmas decorations at Wyevale Nurseries, buy a few things at TKMax and Marks and Sparks..oh it's just so exciting, dreaming about it.

It's been good making all these plans.  I am much brighter, thanks.

Did I tell you I'm off to California in January, for a month?  To see my mother .  She can't fly any more because of a heart prob, so she's going nuts to be together again.

The depression is a thing of the past.  I learnt a lot through it, more than anything, I did learn I could (with help from so many different places), pull myself out of it.

I have an appointment with my oncologist when I get back from Ischia so until then,I'm going to set aside all the medical business and get on with the getting better stuff...

And I'll be pulling for you.  I'll remember, and I will pull.

Take it easy, take care.

Lots of love

Penny or Penelope  (I get caled both, just as you wish!)

Hi Penny

Congratulations for tomorrow.  No more radiotherapy and no more doctors messing around with your body.  You can actually take ownership of your body again.  That is the bit I have struggled with most – the fact that I feel my body doesn’t belong to me anymore but a whole bunch of medics continually prodding, probing, zapping etc.  Basically I'm not in control anymore.

You should be incredibly proud of yourself the fact that you have come out the other end in one piece, hopefully a better person for it.  

I can’t believe you are going to California in January – absolutely brilliant.  California is one of my favourite states and I would go back in a heartbeat.  The weather should be fantastic in California then – just think of me in New Jersey where it will bitterly cold and snowy.  You’re certainly getting out and about and I bet you are really looking forward to seeing you family in Hereford.  It will do you a world of good being with your family again even if it is for a short time.    

I normally do all my shopping in the States and I don’t think I have gone so long without buying an item of clothing.  I have been here since May 3rd and haven’t bought a single thing – now that is a first.  I’m sure I will make up for it when I go back.  In the States they have TJ Max and not TK Max – I’m sure it’s the same store and I have bought some great stuff from there, especially golf gear.  

4 radiotherapy treatments down – 16 to go and then brachytherapy booked for 24th November.  No side effects so far, but not holding my breath as the radiologist tells me that it is more than likely I will get side effects, probably middle to end of treatment.  You have had such a lot of radiotherapy and it no wonder you feel dreadful.  I really feel for you having to stay in bed.  I guess we have to listen to our bodies and do what it tells us to do.  

Sarah, our middle daughter moved house today and we helped her move in.  The house is right near the Christie Hospital where I am having treatment so after treatment we helped her to get straight.  I was on kitchen duty and think I got the short straw as there was sooooooooooo much stuff to put away.  After that we had a lovely lunch in a Vietnamese Restaurant and had a delicious Pho.  I spent the afternoon on the sofa watching a great romantic comedy with Amy (my youngest daughter).  

Tomorrow we are eating at an Indian restaurant with some friends and Saturday we are on Chinese, haha – what happened to good old British cooking.  Good job the radiologist told me to keep my diet exactly the same until I get side effects.  I also think I’m lucky having a cast iron constitution and am very rarely sick (I’ll probably eat my words, now after saying that).  

The weather here is still good  – a true Indian summer.  Maybe not as warm as Rome, but nevertheless, beautiful.  

It seems that you are in a good place right now emotionally and mentally.  It takes so much strength to get through something like this and I feel confident that we will get there in the end.  Cancer is still the last thing I think of at night and the first thing I think of in the morning and to be perfectly honest I can’t remember what I used to think about before……weird isn’t it?  I don’t try to analyse it and certainly don’t feel life isn’t fair because like you I have left an amazing legacy in my 3 daughters  – now Penny how many people can say that?  

Again, well done on completing all your treatment.  I will raise a glass in your honour.

Cheers

Lorraine

X

Hi Lorraine,

Thanks for the cheers, you're a love.  How is it?

I thought I've be over the moon, now that it's all over with - but suppose that'll have to wait till the last effects of Rt fade..instead I feel like the Yultide log, inanimate and wooden.  Something everyone esle is so excited about! (BLESS THEM)

Weird.  Thought I'd be so excited.

As soon as I can tell it's really all over and it gets to be excting, I'll drop you a line.But pinch pinch my arm here, then there, and there's no feelings at all. I turned the light out at 8 last night, sent everyone home, I just could'nt cope.  Sleep was the best thing and even that did not come easily.

It's ALL TOO MUCH.

How bizarre.

It'll pass, of course it will, maybe half an hour afer I get this posted off to you! but just wanted to let you know now.

Thinking of you and hoping you can still enjoy all those Eastern exotic foods.  Take care.

-bye now

All the best, please let me know how you are,

love

Penny x

Happy November 1st Penny,

A bit of anti-climax is it?  After all you've been through I suppose you expect to be elated and so happy.  I can see why and how you feel because I felt exactly the same way when I completed chemotherapy.  Everyone around me was so thrilled that I reached my first hurdle but I didn't feel anything.

During my low moments I think "Why am I going through all this when the chances are really high that it's going to come back".  All the treatment would be worth it if I could be sure it was a cure but deep down I know that mine is grade 3 and aggressive so the chances of a recurrence are pretty high.  I talk to John and tell him my feelings and he just says that I need to be positive.  If someone else tells to be positive I will scream.  

I would describe myself as a realist mingled with a large dose of optimism and 99% of the time think I'm going to win this battle.  I've been an athiest for many years and my only god right now is my oncologist, haha.  I believe in live and live and I would never push my anti religious views on anyone.  I feel happy that I live a good and moral life because it's my choice and not because a supposed higher power says I should.  It's just plain old bad luck that I have disease but I will do everything I can to regain my health.  

3 more weeks of radiotherapy and then I really will be able to see the light at the end of the tunnel.  John takes me every morning and luckily we only live about half an hour away from Christies so we are usually done and dusted within the hour and back home for breakfast.  You will probably laugh at me but I make sure my bladder and bowel are really empty before radiotherapy so that they are as small as possible.  I figure that way the radiotherapy may miss them and not cause permanent damage.  

We've had a very busy weekend as we were out with friends on Friday evening, furniture hunting on Saturday, and then all the family round for Sunday roast today.

Tomorrow and Tuesday John and to go into the Manchester office for machine acceptance trials so I will be on my own for most of the day.  I will rest and take it really easy as I think I probably overdid it last week.  We have the decorators in right now and they are doing the dining room and stairs.  It will look so different as it's been nearly 12 years since we decorated last.  After being in America for the last 5 years the house looks so tatty and really requires a lot of tlc.

Keep that chin up Penny and relish the extra time you have now that you don't have to trek to the hospital.

Love and hugs

Lorraine

x

Hello Lorraine,

It's good to hear from you; to  hear what you say about how you sometimes feel -

which mirrors what I sometimes feel and worry about too - deep down.  "How can I be the one to make it?",

or since chatting with you

"How can WE be the ones to make it?".

In other words, the treatments are over with but the fear of the illness returning isn't .  

GOT TO DO SOMETHING ABOUT THAT, if i can.  

But I think I'm still too close to the treatments - so  emotionally and physically weak  - and I just haven't got there yet.   The 99% statistic is not mine this morning.  I'd be more 75% I think.   It varies! (Doesn't it?)

Just to let you know a bit more of myslef and hope this isnt too personal, I've usually been a very tough nut. (- the eldest of 7 children! Plus I brought my own two children up without their father, who commited suicide and to top up the dramas, my brother was murdered...life's been a tough ride so far and I've managed fine.)

- but NOW the side effects of RT are not over with!  So being a tough nut collapses quite a bit!

(I was vomiting all Saturday night and there's something wrong with my intestines so I have to see the oncologist and the radio therapist again this week!).

I'm hoping as the week goes along though, things will begin to feel better.

They've got to!

It's my party on Sunday. We're having it at Gwyn's house, did I tell you? Sam and Daisy are coming down from Milan.  And the six or seven friends who have been the closest and the most supportive and loving are coming.  I'd like to go shopping for it, so cross fingers this intestines thing will be over.  (Also I need  a couple of polo necks and some trainers  for my Ischia trip- I've just GOT to be better for that!)

Boy ! do I identify with your grgrgrgring about people's furious making comments like "you've got to be positive"..if i hear it one more time I'll go mad.

And if I hear one more person tell me to eat steak, or olive oil, or ginger or whatever it is 'they believe' will make me better, i'll go nuts.

I think what infuriates me more than anything is the easy advice, the carelessnessof it, yet handed out as though they  DO care. But they  COULDN't care enough to find out what is really wrong with us Grade 111ers., that we are often frightened of more cancer - and yes, heaven forbid, but yes, the niggling thought of an earlier death, from time to time -and that no amount of steak or olive oil or  'being positive' will make us KNOW we are going to be OK.  

Oh, a real heartfelt moan here this morning.   Why does it make me so MAD? Why do I give it so much mental energy. But I do.  Now that's not very helpful is it? But it doesnt stop me you know.  I tell Sergio about it all the time and thankfully, like your John, he understands.

But would I be any different from them (the 'well wishers'); probably not, honestly.   It takes experiencing it first hand to understand it doesn't it?

Which is what is so helpful about blogging with like minded people.

Anyway, I better put a lid on all this frustration this morning and start enjoying making the lists of things to do for the party..

Hope you really rest today, decorators or not (that sounds like a lovely thing to do. Will you see the house finished before you go back to the States?)

Take care, be well and lots of love

Penny xx