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

Good evening Penny,

Sorry the weather wasn't kind to you on holiday but it looks as though you made the most of it.   I can remember the days when if the sun didn't shine on holiday and I was thoroughly miserable because I used to spend far too much time sunbathing.  I am surprised that my skin doesn't look like leather and I have already had 2 pre-melanomas removed.  I have turned over a new leaf now and don't sunbathe at all, although I still love the feeling of the sun on my skin.  

The Teotonic Tubbies (love it) seem to spoil the fun for the rest of us Europeans as they seem descend in large numbers and irritate the hell out of everyone.  My friend has just come back from a Nile cruise and she told me that even the narration was in German and he wouldn't speak in English at all - I thought that was disgraceful considering half the boat was English.  She even asked when he was going to speak in English and it was then obvious that he had a joke at her expense in German because all the Teotonic tubbies were laughing.  

How did the party go?  I was thinking about you being the centre of attention and looking absolutely radiant.  It must be wonderful not having to go every day for radiotherapy and actually having your life back.  

I have 3 radiotherapy sessions left and to be perfectly honest I think I have got off very lightly.   Unfortunately this week it has really hit me and I'm very nauseaus and spend a lot of time on the loo.  I have the medication but I only have 3 days treatment left so have decided to try to do without.  The tiredness is the worse and I find that I sleep for a few hours every day and don't have much energy.  I was going to rake the leaves in the garden today but decided that they could mulch in this year, haha.  I have my pre-admission appointment on Friday and then get admitted on Tuesday at 8pm.  I also went to see the nurse at the gynae clinic to discuss the procedure and I'm really not looking forward to it as the rods are inserted under general anaesthetic, stitched in place but removed without any pain relief - she said they had gas and air available if the pain was too much - yikes! I said Honey you're not really selling this to me and she laughed.  She then demonstrated the vaginal dilators (not on herself) which was quite funny and told me I had to use them for 3 years.  Apparently it becomes part of your routine just like brushing your teeth - as if!  Anyway, I've informed John that's his department!!..........moving swiftly on............

My best friend in America (Donna) who is also my next door neighbour had to have emergency surgery on her bowel on Friday and had 4" removed because it was diseased.  She has been very ill and won't be allowed home until she starts eating and drinking.  What's so scary is that she is also losing her job at the end of November and she will lose her medical insurance - how scary is that.  They can't refuse to treat you in the ER but the level of care you receive is nowhere near as good as the care with insurance.  Unfortunately the co-pay she will still have to pay is phenomenal.  The lady she is sharing a room with has recurrent edometrial cancer.  She had it 10 years ago and it's resurfaced in her lungs.  What a coincidence but at least it's operable and she is recovering well.  Are you covered for your trip to California in January?  

Well Penny, we are definitely coming back for good.  John has been given notice and will no longer be the General Manager of Harland America in the US.  They don't want us to renew our visas in March which really doesn't come as a great surprise to me.  I am sure John has not been able give his job 100% whilst I have been undergoing treatment but I also feel that maybe me having the cancer is one of the reasons (now being a bit of a liability).  The company have been very good and paid for John to be with me for the past 7 months so I really can't complain.  John has been offered another position based in the UK but with periodic travel to the States, although the salary will reduced accordingly.  He has been with the company for over 30 years so it's good that they recognise his loyalty.  I am extremely happy about coming home as my heart isn't in it anymore.  I would have been ok going back for another 2 years but deep down I wanted to stay in England permanently.  Amy and Adam will move out in March and get a place of their own which will be a good thing.  We have got along extremely well for the past 7 months but I am struggling coping with their untidiness and long for John and I to be on our own again.  That sounds really bad but I think you know what I mean.  I love all my daughters but they are adults and need homes of their own.  Jenny has taken the news quite well and we have promised to drive up to Toronto in January and February before we fly back permanently.  I would love to play more golf when we return and if I can get a part time job that would suit me fine.  

Well my dear it's time to call it a night as it must be like reading a chapter of War and Peace and you must have nodded off a few times whilst reading this.

Continue resting and recuperating and hope to hear from you soon.

Love and hugs

Lorraine

x

So much going on!!!!!    Riveting reading!! Thanks.

Firstly, My best and kindest and  loving  thoughts go to you for Tuesday. Sounds pretty traumatic Lorraine sweet. I know you are hainging on to the knowledge that you're so nearly at the end of it all now.  Oh so nearly.

(I do hope the side effects of RT are better. Awful, right?  Last day??  X fingers.  )

Promise you Lorraine, and this of course will sound boringly trite but anyway,  here I go with it - It gets better after the first two weeks after the treatments.  

At least it is feeling this way for me. I actually woke up this morning with some verve and kick!  Almost as before.

Secondly, in responseto your blog, John's change of job and place news sounds as though it's what you really want, so I'm pleased for that for you...and you'll get your house back (touched up and new looking!) soon. Something to look forward to.   And those sorts of changes can only help you feel better.   Great.

My CD's arrived yesterday, (the oncologist  from California Seminars and Meditations to help cancer patients CD).

I'm finding them amazingly helpful and the good news is that now, finally, after ages of floundering with depression and semi depression, I'm finally emotionally well enough to be up for listening to them.

They have made me determined now do everything I can to be well and stay well and survive this cancer.   So they work!  Good.

Until now I've been tortured with the secret thoughts "why would I be the lucky one"?  (truth be known)

But honestly now, I do feel as though there's a way to survive.

Because of what this oncologist says that is SO HELPFUL AND SO VERY VERY KIND...... his words are so incredibly helpful, (truly!) that I've already come to the conclusuion that  if I don't survive, there's a way to feel OK about the life and the death that I have.   Now that's such a change round isn't it?

They have helpedme realize that I've got to change a few things in my life (and I dont know what they all are yet), in order to find a way to be happy with it...really at peace with my decisions.

For a start I think I'll have to go and live in the old farmhouse  we've been hanging onto for 25 years ( a sort of National Trust property that's a  Vatican owned thing we rent). It's in Maremma in Tuscany and it's in the middle of a quiet vally about 10miles from the beach.  Basically because it's the only place I can afford.I can't be worrying about moeny now. Though money is a problem since I never bought into pension funds and husband's estate was a real mess!!

I've been renting a super apartment in Rome through my illness, in order to be really comfortable and close to the doctors- my kindest, oldest  friend has been financing it all for me.  I have to pay her back, of course which means selling a small investment property I have in Hereford (which means not having much income from now on, drat!).

Anyway, the very idea of change worries me a bit, but I think it'll be a decision that will be alright especially since I dont intend to put it into place till the spring...(and I'll sublet this apartment for 6 months as a trial period).

It's great there in the summer!!!

And it's peacfeul...and my family LOVE it.In fact it feels like home...And it's less than 2 hours from Rome by train from the local village, so I'll be able to pop down to see Sergio and my friends every week...spend a night or two.

I prefer it to thinking of going back to work ( I teach English to company execs, though actually I like writing poems).

But basically I'm telling you all this because it's news to me!  I'm having to look at things differently in order to find a way to  live without stress and worry -

In a way, this is also what is happening to you and John isn't it? CHANGE.  I'm not good at change, but now,with the help of these CD's I do believe I can do it, with the right frame of mind (less fear), though it'll take regular working on it...but this cancerdoes mean doing things differently from now on doesn't it?

I better get up now and use some of this new energy. The sun's shining and I want  to pack because Sergio and I are going up to the farmhouse for the weekend.  The weather is beautiful.

We'll sit under the olive tree in the garden and read our books and listen to the birds and look at the stars in the sky at night and the heavenly views all around  (a lot different to the street and traffic sounds of this city apartment - beautiful though it is)

I do hope you'll be comfortable soon. Soon,soon, soon.

Huge hug for the next few days love

Rest and rest and rest and take care and lots of love

Penelope xxx

Hi Penny - what a lovely blog.  I actually feel quite peaceful after reading that.  I would love to be sitting under the olive tree listening to the birds singing and sipping ice cold lemonade.  I have read some of your blog to Amy (my youngest daughter) and I have tears in my eyes because you sounds so happy.

You sound stronger Penny as though something has just clicked with you and I am taking so much positivity from your words.  That's my girl - keep it up.   Very few people like change but personally, I feel it does everyone good to occasionally go out of their comfort zone.  Your farmhouse sounds idylic and although you have to sell your investment property, we can't put a price on our health and peace of mind. John and I have worked it out that we don't need much to live on and as long as we can cover the bills etc and have a little left to fly over to see Jenny in Toronto we'll be happy.  

Talking of being out of one's comfort zone the past few days have been hell.  Just imagine this scenario:

1. You have something that looks like a medieval torturing device placed in your nether regions so big and uncomfortable that it must be a hard act for any man to follow.  

2. The device they use is stitched into place in 4 areas and far too tight so that your skin is pulled as though you are hanging on a washing line by your vag.

3. The catheter is put in wrong so everytime you need to wee it feels like hell

4. Not being able to move for 16 hours unless a nurse comes to turn you as though you're pig on a roasting spit.

5. Needing morphine for the pain.

........but today I feel much better.  As they say onward and upwards.  I can actually joke about it today - yesterday it was still a nightmare.

I have finally finished all treatment and not sure how I feel.   We are having a cozy dinner party just for the six of us tomorrow evening - it's supposed to be a surprise but we were invited to friends for dinner and John had to tell me why we had to turn it down.  

The flights are booked and we will be back in New Jersey on Monday afternoon.  I need to keep up with the medication because I could have a few problems sitting on a plane for 8 hours - I made sure I booked an aisle seat.  I have lost quite a bit of weight, as the past week or so I haven't had any appetite - hey after trying every diet going I am finally under 10stone - not sure it's a feasible marketing strategy though is it?  Hey, get cancer - lose those extra pounds!!!!!!!

I am actually looking forward to going back for a few weeks and I am going to just rest.  John has to fly to Kentucky and Ohio for a week so I will get to spend lots of time with my best friend.  She is the one who has undergone bowel surgery so it will be good for us both to walk a little and talk a lot.  I can't wait to see my little Siamese cat (Mia).  Donna has been looking after her for me and I hope she hasn't forgotten me.  

I haven't even bought one single Christmas present yet and unsure of what to get everyone.  I will be taking all my neighbours Cadbury's Roses back because they can't get decent chocolate of there.  Hershy's chocolate tastes vile, as though it's been regurgitated and they really like Cadbury's.  It's already manufactured by Hershy under license but it's just not the same.

Oki doki my dear will love you and leave you.  I would like to end my blog in a similar way to yours but unfortunately it's pouring down with rain here and there's no olive tree in sight, just a very bare grapevine and a load of soggy leaves, haha, bet that makes you glad that you are in sunny Italy.

Love and hugs

Lorraine

x

Lorraine, just in case I don't get back to you before you go, hope you have a comfy flight.

And a wonderful time in New Jersey with old friends.  

Envy your weight loss!!!  Oh such envy.

I kept on eating though I hated food, (just to keep the failing blood counts up) and now the therapies are over with and I'm beginning to like food again, just this week in fact,  guess which food I love?...cakes!  and All the wrong stuff...tastes so wonderful....So I'm putting wieight on again.  (I'd lost a stone after surgery!).

And now it's going to be Christmas...so it''ll just keep going on.

Anyway, just a quickie. So nice to hear from you and hear your news and developments.    It's ALL OVER with, (sounded utterly horrendous you poor woman - and I am so very sorry).

Have you asked your airline company for wheelchair assistance?  worth it.  It'll help you not to get tired standing in line and walking airport miles (or having to deal with a sharp loo left). When I go to Hereford and then the States in Jan I've asked for it.  My friend (who had the bowel cancer two years ago keeps telling me never to under estimate how very tired I am and will be this coming year.  She said "Get the assistance!!"

Thank goodness for friends who know all about it.  It's a richness all its own.

bye for now and love and a hug Penny xx

Hi Penny,

Back Stateside and everything is ok.  Bowel and bladder a bit dodgy but pretty good considering.  It feels very strange to be back but it was lovely seeing my best friend and my little Siamese cat.  The 8 hour flight was fine even in economy.  Normally I whinge a little at not being able to move much during a transatlantic flight but after last weeks brachytherapy it was like a feather bed, haha.

I have been very low for 3/4 days and was very emotional - crying at the drop of a hat for absolutely no reason.  Today that grey cloud has lifted a little and I can see the sun peeking out through the clouds.  

I'm looking forward to going for lovely long walks with my best friend and seeing all our great neighbours.  No work for me though.  John has left for work already and I am going to call in for an hour or so this afternoon to say hi.  We were all pretty close so it will be good to touch base again.  I may go in for a couple of days before Christmas to update the company website as it hasn't been touched since April.  

Well Penny, we survived to fight another day and who knows what 2010 will bring.  Let's make a promise to each other and not worry about cancer coming back.  We will get stronger together.

Lots of love and hugs

Lorraine

x