RECOVERING

Well, I had the operation four weeks ago and returned home five days later, where I have been recovering.
It will take a while to post it all on here, my eyesight is quite good considering but I can't spend too long in front of a screen of any sort.
I can't believe how quick it's all been, nor now fast it's working, DH and I had a rushed trip back to London just 3 weeks after the operation, to be told that the blood vessels feeding the tumor have already gone. My consultant showed us before and after photo's, and it's clear to see the change, even the heart shaped hole in my iris has gone, (that's what caused the hyphema, or bleeding, way back in May).
My thanks to everyone for their messages of support, and to Bear for updating this blog.
There are plans in the pipeline to get a support network up and running, so newly diagnosed patients can talk to someone who has 'been there, done that', sort of thing.
More to follow:)

Hopping eyes, bear hugs, Italian food and guys, and most importantly big smiles and laughter all 'round.

Hello follow-ersss!
:)
Middle child again aha, hope you're all doing good.
Well straight to it, I was able to see Mummykins yesterday!
:D
Thanks to m'lovely Aunt.
:)
and I must say Mum looked wonderful, she got a glitter bug from Lush before she went to hospital, and decided to sparkle her-self up for us tehe, so when she hugged us we got sparkles all over us.
:)
Mum is looking very well, she had her dressing changed and I saw her eye, it's not bruised at all, it's blood shot but that's all, and she wasn't in any pain while having it changed, she has two different eyedrops put in her eyes, and has an eye patch which is taped on, but it doesn't hurt when they take it off which is always good.
:)
She's enjoying the food there, I must say it did all sound really nice, but not as nice as the Italian meal me and Auntie had, it was lovely, as was the view tehe.
;)
Mum has a nice view from her window you can see the trees, which made Mum happy, her and her nature haha.
:P
The staff there are so nice!
They always greet you with a smile, stop and chat with you, and they have such a good sense of humor, Aunt got a hopping eye for Mum as a joke, and Mum said about scaring the doctors by winding it up opening the door and letting it out!
The nurses were in hysterics!
It was a funny mental image but Mum couldn't really do it, because she's radioactive woman aha, otherwise she most probably would've gone for it.
The room she's staying in is quite nice the bed is more amazing than it sounds and so comfy!
Mum wants to roll it back home with her haha, I wouldn't reject to that i'd steal it off her, but the nurse said no.
:(
Her bathroom is nice and clean and her shower has a seat in it haha, the T.V. which Mum made sound huge, was tiny haha, and so far away but aye atleast she has one, even tho she bought a million D.V.Ds and a portable D.V.D player with her so she doesn't really need the T.V. aha.
She has another operation tomorrow hopefully to remove the plate, and fingers crossed she'll be home on Monday!
YEY!
Will be so good to have her home, she gave us bear hugs good bye yesterday aha, it was lovely to see her.
:)

Well that's all folks.
;)
Will let you all know how the op' goes tomorrow.
:)
Have a lovely night.

Middle child.
xx

I see golden, I see er...blue things swimming across my eye when a light is on.

Hello my Mummykins' followers, I don't know what she calls me on here soo lets just call me the middle child, until I find out what she calls me aha.
:)
Glad to say Mum is being treated well at the hospital, she has her own bathroom, fridge and a flat screen T.V!
:O
She is quite impressed with the bed, she can make it go up down, and apperently it vibrates(?)
She told me she hopes she doesn't roll on the buttons in her sleep, otherwise she will most probably turn into a human sandwich!
Made us both giggle for quite a while.
Oh and she took her own pillows.
:)

Mum has had her operation today, but she's not in severe pain which is really good news, she's just got a light stinging.
:)
Mum explained that when she is looking out of her left eye (the one with the golden plate on it) it kind of looks like she's looking into a kaleidoscope all the time, which I guess just sends her back to the 70s, which isn't too bad teehee, but when she goes into the bathroom and switches the light on, all she sees is a lightish blue colour and it's like things are swimming over her eye, but that is much better than being in severe pain all the time, i'm very proud of her for being so brave, and just getting on with it, what a wonderful woman she is.
:)
Well that is all for now dearys, I will hopefully be seeing Mumsy tomorrow.
:D
So there will be gossip on here about hot doctors and all that jazz, well if we get home early enough, and if not you will have to wait until Friday, sorry.
Teehee.
Have a wonderful day, hope the weather is better tomorrow!
Good ol' England.
From the middle child.
xx

Hi, just to let everybody know, lunar has had the op this morning, all has gone well and she is feeling okay.

Silver Linings

I have been given more gifts to help me through this difficult time, so many silver linings. I hope everyone recieves such gifts, both the physical and the unspoken...

A gift from one of my oldest friends, (well, she's almost older than me), a pretty eye patch in healing lavender and magical sparkles, and a cane to match. If I bump into anyone at least I'll look nice;))

This lovely handmade bag from my good friend Rowan, to hold my latest knitting project. Rowan saw the fabric and thought of my saying about thinking like mushrooms. Wasn't that kind? I love it!

This is an inside view of a little book TW made for me when I was first diagnosed with iris melanoma, I sent her a wobbly e-mail and she kindly made this to help me out. The little cube says "Why Not?", a slogan that makes for an interesting life!

Winnie The Pooh speaks for so many, I'm taking his friend....

.....Eeyore, since I can't take DH. His nickname is Eeyore because he often appears gloomy but those whom he lets in know far better, he's a softie really:)

A Wise Owl Once Said...

My clever friend TW gave me this little owl scrap book she'd made for me to take into hospital, a beautiful reminder of those who are rooting for me. Isn't he sweet?
There's space for me to fill with photo's.

Words to make me laugh....









Inspiring words from a wise man......

....and true words from a gifted woman, missed by many.

Thank-you TW:)

Fund Raiser

A while ago I mentioned to a friend of mine, L, that I would like to raise some funds for Harbour Cancer Support, they are a priceless bunch and lost their lottery funding this year. Every one's feeling the pinch.

My problems were that I couldn't be sure I'd be well enough on the day, my house is small, and I didn't, at that time, know when I'd be going into hospital for the op.

I fancied doing an all day coffee 'morning', using some of the raspberry jam I'd made a few weeks ago, to fill cakes, sandwiches,etc, and name it after this blog.

L came to the rescue by suggesting we hold it at her house, much bigger with more rooms, much better for encouraging larger numbers, we hoped! That way if I were unable to, she could take over.

A wise move as it turned out. I was able to be there but all the preparation along with sorting of stuff out for hospital, would have wiped me out! I couldn't even remember when L's birthday was, (just a couple of weeks ago), let alone that I had given her a gift!!

L and her family worked very hard, her two teens helping with the baking, cleaning and posting over 150 invites around their neighbourhood!

We had a steady trickle of guests at first, getting busier towards the late afternoon and evening.

L met neighbours she never knew she had, as well as many she did, all a wonderful and generous bunch of people.

How much was raised in the end I have yet to find out, but anything helps.

I thank L and her family, and her fantastic neighbours and friends for their generosity and loving best wishes for my (hopefully), returning good health.

It's a Date!

1st of September to be exact, plaque therapy operation on the 2nd. Not long, but then again, too long and all too soon!

So much to think about and organise.

My wonderful sister has offered to take me there, yet again, (I don't know what we would do without her).

Poor DH has to work, they aren't a sympathetic lot at his workplace. He's managed to juggle holiday for just after the operation though so will be there for when I come home, hopefully a few days later! Less than a week in hospital for a cancer operation, not bad eh? Wish they could all be like that.

I won't lie, I am scared, it has occurred to me that any number of things could go wrong, (not exactly positive thinking)!

But it's not worth worrying about such things unless they actually happen, otherwise I will be a quivering wreck and no help to anyone, least of all me!(Positive thinking sort of)!

The one thing I try to focus on more than anything is the rather handsome surgeon telling me that this operation is very successful, (definitely positive in more ways than one)!!



I'm making some washable cleansing pads out of old flannels to take with me, Ive been meaning to make some for a while, to save using cotton wool all the time. I'm also knitting to keep my mind, and hands busy.


Sadly I will be away as the girls start their first new day at their respective colleges, I'm sure they'll be ok, they may only be learner mushroom thinkers, but they learn fast!
I however, will be worried for them, because that's what I do.


The boy is starting back at studies today, a unit on bears, quite detailed, it should keep him busy whilst I'm away.
He's keen to look at Darwin too, and science v creationism. We have an outing booked for the end of September, to attend a debate on whether or not evolution and ceationist teachings can co-exist, so I had best be a good little patient and beat this tumor as well as heal quickly!

Quite apt when you think on it, I have lots of lovely people praying, (in a variety of ways), for me, and science will be doing it's big bit too.

Perhaps I will be a walking example of how there is room for both?

And before anyone tells me off, I don't believe in telling anyone what they should or should not believe, nor do I wish to belittle any ones belief system, and nor do I believe science is either wrong or infallible.
Phew, think I covered the lot there!

Jelly, Butlins and Positive Thinking

Today I went for the last of my tests checking for secondary cancer before having my operation. I was feeling very anxious during the trip over to the 'not-so-local' hospital, (I told you they'd be sick of the sight of me).
The clouds were gray, my husband seemed grumpy about everything, and I was remembering back to exactly twelve years ago when a dear friend and neighbour lost her fight with cancer. The panic, the emergency vehicles, the stunned disbelief, the grief.
My tummy was grumbling loudly, (scans demanded a starving victim), and I started to feel quite 'wobbly'. "What if...", my head kept saying.
I looked at the view out of the windows, fields and chalk cliffs in one direction, sea, boats and houses in the other.
I looked at a little book that I have hanging on my backpack, a gift from a friend who wants to be able to lift me up during my wobbly moments, even if she can't be there in person to do it. TW has titled it J's Little Book Of Thoughts. Bright colours and cheerful ribbons adorn it. It's full of positive thinking quotes. I thought of TW. I thought of my friend and neighbour, of how she fought every day and didn't seem to let any of her pain get in the way. The day before she died she took our daughters to Butlins for the day. That's what they remember, even now.
I don't have any pain.
I thought of the daughter she'd had to leave, of how that daughter is now a vibrant, fun loving and beautiful mother herself, a reflection of my friend.
I looked out and saw sunshine on a town in the distance.
The wobbles got smaller.
I looked at my husband, quiet instead of grumpy, intent on watching the road. He's worried I thought, not grumpy. A smile crept into the corners of my mouth.
At the hospital's x-ray and ultrasound department I was introduced to The Doctor. Sadly not 'THE' doctor, but a thoughtful man who reassured me that he'd tell me if he found anything as he scanned. He found gall stones, lots of them, but tiny and I already knew about them. He said my liver's a bit fatty. So's the rest of me I thought happily. The wobbles evaporated.

Nothing else, nothing but ultrasound jelly to wipe off my skin.
Not even David Tennant himself could have topped that:))))))))))))))))

Healing Hands

Today I went for a massage. As someone who spends every day trying to make ends meet, massage is one of those things on my 'wish' list. It's something I strongly believe help us to heal.

I don't believe 'complementary' therapies are better than 'conventional' treatments, but I do believe the two go hand in hand. I also believe in positive thinking, it's got me through a lot in life so far.

I'm lucky, we have here a local support centre for cancer survivors, their friends and families. It's hard to see from the outside, being hidden above the bus station which is not a beautiful looking place!

Once through the doors of Harbour Cancer Support Centre however, you are greeted by people who should be strangers but aren't, such is the welcome. The decor is cheerful with views across the Solent, comfortable and casual, you can't help but feel relaxed.

I found it surprisingly easy to sit down at the big kitchen table and tell a lady I'd never met, about my cancer and some of my concerns. I didn't have to worry about upsetting anyone there and that alone was really helpful.
I was offered refreshment and told something of what was on offer there. You aren't bombarded with info and suggestions and there's no pressure of any sort.

I don't know what I had expected to find there but I certainly hadn't expected to be offered free massage!
I have received one weekly since then, the lady who gives them, (her time and skills are donated, like many who go there), leaves me feeling relaxed and somehow happier, even though I'm not aware of feeling different before treatment.
Stress is a funny thing, often well hidden.
Now, if I can just work out how to fit her into my holdall for hospital....

Cancer is a scary word, how do I tell people?

This was my biggest problem.
How did I tell people? Telling family was ok, I knew they'd be upset by the news, worried for me etc, but they know me, some better than I know myself.
My biggest fear was upsetting others. When you meet, the first thing usually said is, "How are you?".
I understand that people will be concerned for me, it's the pain my news may drag up for them that worried me. Many people have been affected by cancer, maybe they lost a family member or had a scare themselves.
I went to the local cancer support centre and chatted to people who have been there and done that. All our situations are different but these people know how to help:) I can't praise any of them enough. Macmillan Support do booklets which have helped. (Links are at the bottom of this blog).
I've decided the only thing I can do is just answer as I feel is the best at the time. If I think someone needs to know, I'll tell them but emphasize that it's not as scary as it might first sound, and tell them I have no pain and can be treated. If they want to know I'll tell them what I know about the treatment .
And I smile:)

Warning Signs?

I have no way of knowing whether or not any other health niggles are related to my cancer or not, but I'm hoping they will fade away after treatment. I'm a lot kinder to myself now!

• Extreme tiredness; Understandable now but before I got my diagnosis I was beating myself up over being so tired, trying to work out if I was eating badly, did I need more exercise, maybe it was just my age?


• A sudden deterioration in my vision; After having perfect vision, I suddenly needed glasses to read, work on the pc, see the tv. Before the year was up I needed another prescription for distance and close up work. I gave up cross stitch and taught myself to knit. I put this down to age, but perhaps it's not;)


• Joint Pain; Now this has me baffled. Some years ago I got recurring discomfort in my neck which would lead to migraine, I just wanted to take my head off because it felt so heavy! It was suggested I might have a touch of arthritis. More recently, starting earlier this year, I found my hands throbbing and then seizing up. In the morning especially, I'd feel stiff as a board and found I having a shower and gently flexing my joints would help get me moving. This is still going on. I've had blood tests for a variety of things but they have always come back clear. The pain is being treated with painkillers which help a great deal. Every time I try and cut back on them I'm ok for a day or two and then the pain kicks back in big time. I walk like John Wayne when I first get up from either bed, the sofa, any chair etc! I click and grind so loudly I can be heard approaching! Perhaps this is just down to my wild living when younger, too much falling out of trees, falling off my bike, running around and leaping over things pretending I was a colt! Maybe I should sell the Rollerblades:/


• Cold; Despite being pretty active, (walking the dog, idle fishing, oodles of never ending chores such as house decorating to do, cycling because I can't drive, baseball pitching with the boy, trying to keep up with the garden/jungle), I often feel absolutely freezing, usually in the hands and feet. A lovely friend knitted me a pair of fluffy fingerless gloves, such things help lots. I have plans to try my own but am only a beginner, I'm good at knitted squares though!

What Does My Cancer Look Like?

For as long as I can remember I've had what has just been referred to as a birthmark, or brown freckle in my left eye. This is what has become the tumor.
Brown freckles or marks on the iris are very common and rarely become cancerous. But it is worth keeping note of any you may have, just as you would for moles and freckles on your skin, so that any changes can be checked out. And wear sunglasses!

Secondary Cancer

Before I can have treatment for the eye tumor, secondary cancer and other nastie's have to be eliminated. London did a chest x-ray whilst I was there and collected enough blood to fill a vampires bar I think! The nurses took a swab to check for MRSA, and I met my cancer nurse who kindly but with great strength, gave me her mobile and pager numbers with STRICT instructions to call her for anything, anytime. I entered her into my mobile under ICE, (in case of emergency contact...), just in case:/



Yesterday I went back to our 'not-so-local' remaining hospital to have a mammogram. I was extremely anxious about this, having heard some well meaning but none-the-less nerve racking tales of how much it would hurt, on top of being just plain scared of what the doctors might find!

I'm pleased to say that it didn't hurt at all and nothing more sinister than a small cyst was found in the left breast. This will need watching as a matter of caution for a few months but I'm reassured it's unlikely to develop into anything else.



Next week I'm due to return yet again, (they'll be sick of the sight of me very soon), to the same not-so-local hospital for a couple of scans, one upper body and one lower body. I'm not at all sure how that works, but will keep you posted.

Treatment

Radioactive Plaque
I'll be having an operation to stitch a radioactive, small, metal disc directly onto my eyeball over the tumor which will keep the radiation localized to just that area.
This will stay in place for a few days and then I'll have another, quicker operation, to remove it. I can opt to have the plaque removed under a local anaesthetic but I'm afraid I won't be able to handle that, so will be opting for a general anaesthetic again!!
Once the disc is removed I should be able to return home, and, all being well, safe in the knowledge that my tumor will be loosing the battle:)

I'll be able to have visitors whilst in isolation, but not young children or pregnant friends, and visits will be timed for safety and so as not to tire the poor patient out! I'm hoping I'll be sleeping for most of my stay! Use of a Geiger counter will no doubt entertain me a lot.

What Happened Next

When the second attack hit I asked my middle daughter, (Bear), if she could photograph what she could see in my eye, a sort of dark line in the lower part of the iris. Above is one of the photo's, the red bit at the bottom of the iris is the blood slowly filling the lower part of the iris.
Bear got some good close-ups and when I went to see my GP, by which time my eye was again back to normal, he could see 'something', but was baffled as to what. Light reflecting off my eye and his glasses didn't make his job any easier, but Bear's photo's helped and he made a call to the hospital and referred me there and then.

At the hospital, one of the eye specialist team numbed my eyes with drops, dilated them and had a good look. He took detailed photos and gently explained I had a very rare cancer called iris melanoma. His boss had a good look and agreed, and I was referred to a London hospital for an even more detailed look and 'plan of action'.

London was a day trip to the hospital, the staff in Ocular Oncology were fantastic and I met some amazing patients in the waiting room. Most of us were very bored as well as anxious, we couldn't use things such as mp3's, mobiles etc due to medical equipment and none of us could read as we'd had our eyes dilated. My sister decided that a game of I-spy was in order, it certainly broke some ice!

I had my eye examined with ultrasound, (totally painless), but came up with nothing in my case. I found it impossibly hard to look up, down, etc, with my eyes closed!
Various pictures were taken from both the front and behind the eye, using all sorts of machines, all painless.

Happily my tumor is not behind my eye in the socket or anywhere else. Only the iris is so far affected.

My Symptoms

Absolutely NO pain!

Temporary hyphema, (bleeding), in the iris of my left eye.

Temporary sight loss in the left eye.

The above symptoms lasted for about 12 hours in the first attack, (bank holiday at the beginning of May), and about 60 hours for the 2nd attack, (bank holiday at the end of May)!

The optician noted that my pupil was slightly misshapen, (instead of being all round it had what looked like a small v shape protruding from it). He wrote to my GP.