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

Hi there

Thought I would respond to your blog as I feel I can relate to your story.

When I was first diagnosed I searched high and low for positive information that would give me a good prognosis but everything was negative.  I finally decided that nobody else has exactly the same body as me and the survival prognosis tables were just for each specific stage of cancer without taking into consideration health, fitness, age, etc. so I was going to ignore it.  

Apparently there is a 1 in 3 chance of getting cancer in our lifetime - well the odds were on our side there but we weren't so lucky, were we.  Moving swifty on............

I certainly have down days, especially when my husband returns to our house in New Jersey and I am on my own again for a couple of weeks.  I took him to the airport yesterday again for the 8th time in 4 months and it really got to me.  I really want my life back.  I am due to have a CT scan next Friday and then start a course of radiotherapy on Oct 26th, followed by internal brachytherapy.  

Talking is the best way of getting through this.  Voice your concerns and don't try to be happy and positive all the time - because it's just too difficult.  .  

We are supposed to be spending another 2 years in America and flying back every 3 months for checkups but everything really is up in the air right now so who knows where we will be next year.

You can use me as a sounding board anytime and if there is anything I can do to help please shout.

Love

Lorraine

x

Thanks Lorraine. Hope the CT scan OK. I'd like to know how it went for you.  I'm so sorry your husband is off to NJ at the moment.  It doesn't help to have real sadness to deal with does it?  What a terribly tough time.   Yes, I'd like to be your sounding board too.

Are you any better today?  I do hope you can find a way to rest or relax or have a treat or be loved lots by friends and family.

It's good to hear you being sensible about 'voicing concerns' and disagreeing with the  forced 'being positive and happy all the time'. (the stiff upper lip thing).

I can be brave and have a handle on it all for quite a lot of the time, but I found myself wandering off into some gray areas during Radio Therapy . Before it actually. Ages ago actually.   And secretly feeling that I was giving into 'feeling  illness' too much.

Anyway, one of my friends last night suggested I pick up my spiritual readings. She'd heard I'd dropped it. I felt furious.  I do love my friend a lot so I was able to tell her that I can't do what people 'tell me to do' - that I need to find my own way of dealing with things when I can. I found myself explaing that sometimes I havent been able to do much that's extra helpful, because I'm ill.  DUH!  ( It's as simple as that.) and,  Sometimes I can.

Perhaps it is a good idea to blog about this.  Perhaps it's a kind of weather report on how I/we/one is.  If things feel dreadful or good or whatever and we blog, it'll  actually help to talk about it, deal with it - or not (as we feel or can).  Again, thanks.

One thing I thought yesterday was this."If I can just sit with myself and tell myself slowly while I sit (and get hold of what's going on with my feelings), that I am whatever I am, feel whatever I feel, suffer or not suffer whatever is going on with me at the time, I'll know it's OK.  Because this IS WHAT IS GOING ON WITH ME and if there's a way to deal with it or not, at that time, I'll be able to find a way, or not".

Brave talk isn't helpful to me at all.True talk is.  Humane talk.

All the best with today, this lunch time and

OH!! my youngest son just popped up on Skype.

I told him what I was doing and he said "Say hello to Lorraine".

love

Penelope  

Hi, did you get my last posting to you.  not sure how things work...don't want to be a bother, but if you didnt hear from me, please let me know thanks Penelope Hart

Hi Penelope

I have just spent the last hour replying to your blog and then my computer died and I lost the lot - drat.  

I love your idea about sitting and being yourself, letting yourself feel whatever if maybe that's going on at that time.  Even if it means going out into the garden and screaming, haha.  

Maybe your friend was just trying to help when she suggested you pick up your spiritual readings.  My sister came to visit last Wednesday and she had brought lots of stuff to do an Indian head massage for me but all I wanted to do was to sit and chat.  She didn't mind at all. Family and friends try to offer advice but to be perfectly honest I would probably listen to people on this site more than family and friends right now. We can actually emphasise with each other.

I totally understand the concept of brave talk because when I was first diagnosed I tried to hide the horror of how I really felt from my 3 daughters and my husband but they made me promise to tell them honestly how I feel.  Now they now that when I say I'm ok, I really am. At the end of the day I am realistic about having cancer and tell it as it is.  

The last couple of days I have felt much more energized and have actually cleaned my house from top to bottom - boy did it need it.  Just as well because Jenny, our eldest daughter has flown in from Toronto with her boyfriend for 2 weeks.  It's so tough for her being so far away.  Even though we talk virtually everyday - you can't hug a phone can you?  It will be nice for her to catch up with her sisters as well.

Have you had any side effects from the radiotherapy?  John, my husband flies back next Friday ready for my CT scan and then wants to stay for 5 weeks because he reckons it may affect my bowel and bladder and wants to be here for me.  

Hope you are having a good weekend.  I notice that you live in such a beautiful part of the world - how lucky are you in that respect?  Manchester just doesn't have quite the same appeal somehow.

Take care and keep those sunny thoughts flowing.

Love & Hugs

Lorraine

x

Dear Lorraine,

How good it is to hear from you - you have children!   And a nice clean house this evening!!!mmmm, now that's nice.  

I hope you don't mind if I ask how old your daughters are?  Do any live at home?

I have two sons, one is Gwyn and he lives round the corner from me (he and Josefin returrned from Australia a few weeks ago thank goodness.  That virtual talking was wonderful but, as you say, I couldnt hug the phone); my youngest Sam lives in Milan (he tries to get down a lot) and in March he and Daisy will be having a baby.

Gwyn spent the day with me today, crashed out and had a sleep right next to me and I stopped being so maudlin!  They are what life is all about aren't they?Mine are so brave. I'm fumbling about today with how things are (and bless him, he just loved it all away.)

I'll get to that in a minute, since it's what we were speaking about (moods and feelings), but I do want to tell you what it's like to be having the radio therapy on the pelvic area.  

Sorry not to be able to say its a doddle; oh, it's far from that, so it's really good your husband will be with you.  You'll hold on to him so tight.  Bless him.

It hurts to go to the loo, a lot, in fact your rectum and bottom become inflamed (there are meds for it all, so you'd be wise to ask ahead of time for them and have them ready, instead of suffering the pain while you wait to see the doctor...anyway, a good idea might be to try to have as lengthy a talk as possible about the effects with your radio therapist and ask him to give you the prescriptions for the meds you need BEFORE instead of when it's terribly uncomfortable).  Daily, you do need to take the floral bacteria replacement meds and the best multi vitamins you can find, so it would be good to ask him for the names of those too. And creams for your sore parts.  My sister sent me KAMILLOSAN which was great and I used savlon when I got overly sore.

Of course nice comfy cotton nicks.

Your diet is crucial. You probably know.The Radio Therapist will probably give you a complete list of yes and no foods - but this is what my list was, so you can compare!

No greens, no salads, no raw veggies, or nuts ordried fruits. No milk or cream or ice cream.No cereals or wholegrains or white bread, but white bread toast is good. Nothing fried. No pulces like lentils or beans.

Apples OK, (baked very good), bananas OK, pears sort of OK.  a little  yogurt. Boiled Carrots, potatos, courgette and fennel OK.

Basically, it'd be good if you treated yourself like a 5 month old infant.  mashed potatoes, creamy rice and semolina, a soft boiled egg, a piece of .steamed/poached fish. A liquidizer helps to mke the food soft.  When you eat meat, (NO PORK) which you really must try to eat in order to keep your red blood cell count as up as possible, make it something roasted (but NO fat), or else, say, you could cook a filet steak in a small frying pan which has been heated and lightlly sprinkled with salt.

A homemade sponge cake is a fine thing.  Yes!!!  Toast with marmalade is nice too, cups of tea with rice-milk (really not too bad).  Spaghetti with olive oil and grated parmesan   But as you go along, feel free to tell me how its going.  I'll share more with you if you like.

The first week is not so bad and you will wonder what on earth I am talking about.  But it does change so it's a good idea to keep to the diet so you wont have to suffer digesting problems on a day you went and did something different (as I did!).

The discomfort lasts a few weeks.  It will end, I do absolutely promise you, (please rememebr this all the time, it does go away after a few days after the RT - as quickly as it came on.)  But you will need as much love and caring as your loved ones can muster, (and privacy, cos those times in the loo must be just for you and you could go at any time, so it has to be just for you!).

Another thought. Again a very private and personal one, but hey this cancer doesn't leave many private stones unturned does it?....  Because your bottom becomes inflamed, and you are constantly having to go to the loo unfortunately, you'd be wise to buy nappy wipes and use them instead of paper all the time because loo paper is too hard, (besides which it contains bleach which will irritate).  Then have a little bin by the loo to dispose of the wipes, which is JUST for you.

Personal hygene is a so much of a MUST. So, nice soaks in a bath with bicarb of soda, and some baby johnson bubbles once or twice a day (if you dont have a bidet).  I washed my private parts every time I went to the loo with intimate hygene soap (not ordinary soap) and also with bicarb.   The thing to avoid is an infection which is easy to get apparently.  I didn't get one.

I did get a slight temp for a few days, but I dont know if everyone gets it.  I spent most of the time in my house. Often in my bed.

But briefly, about the maudlin feelings.  Yes, of course my friends only ever try to help, you are quite right, it's just me being overly sensitive (at least I've made that progress in the last 48 hours, oh Lorraine!)  -  and to prove it I had a wonderful email from an old friend of mine today.  I'd written to tell her I was depressed (because, honestly, I havent been until now, not really) and that I was not sure how I should be dealing with the future - since I finish a second lot of RT in three weeks. (I'm coming to the end of it all now, all the treatments post op - after 10 months ).  That the promise of a future  being so very bleak (with this Grade 111C business) is doing my head in.

She was brilliant!  She suggested I I took things on in little chunks.  Perhaps I'll tell you more in another letter.  This is long enough for tonight isn't it?  In oder to describe the little chunks I'd have to tell you more about my life in general.  Slowly slowly.It's just too much to rush into things isn't it.  It's just important to know how we deal with things the very day we are in touch, not the whole of life.

I'm enjoying talking with you.  I think it is beneficial.  I think since reaching out, having you on the other end, talking about how things really are with you and a few loved ones, I am pushing into new ground and liking how I feel better.

I do hope it can be the same for you.

Happy weekend with your family!!  In that nice clean house!!

Love and a hug to you too - a wopping great sunday lunch with too much of everything.  

Penelope xx