Miss Me, But Let Me Go

A poem, found by Jane by an unknown author that she wished read at her funeral......

When I come to the end of the road,
And the sun has set for me,
I want no rites in a gloom filled room,
Why cry for a soul set free.

Miss me a little, but not too long,
And not with your head bowed low,
Remember the love that once we shared,
Miss me but let me go.

For this is a journey we all must make,
And each must do it alone,
It's all part of the Master's plan,
A step on the road to home.

So when you are lonely and sad at heart,
Go to the friends we know,
Bury your sorrows in doing your deeds,
Miss me, but let me go.

Journeys End

Jane passed away this afternoon.

She looked so peaceful after months of so much pain. I just wanted to take her home and care for her all over again. People say that I was so good to care for her the way I did but I loved her so much it was an absolute pleasure. I would do the same again tomorrow if I had the chance, now all I have left are memories. There is a huge void left which I am not going to be able to fill. She was my life, in sickness and in health and I will miss her with all my heart.

Rest in peace Jane.

Jane Catherine Thompson
18th January 1959 - 30th May 2010

Tears and goodbyes..

I am sitting here typing in the early hours of Sunday morning in tears and yearning for my Jane..

I received that phone call from St Mary's last night... "Mr Thompson, Jane's condition has deteriorated, we are trying to make her comfortable but you might want to come in.. "

I gathered up the James, Ed and Catherine and together with Caroline we made the worst car journey you will ever have to make.
St Mary's staff were their usual efficient self in such circumstances but then again they have had a lot of practice, unlike us. I stuck by my guns and reiterated Jane's wish for me not to take her to any more hospitals and then agreed for her to be sedated as she was becoming agitated and distressed. As the sedation was administered we just had a moment to all say goodbye. Jane managed a smile and squeezed each of our hands before settling down into a controlled sleep.

Oh Jane I love you so much, you are so brave. You have kept your dignity throughout this terrible decease I just want to take you home and keep you there forever.

James sat with her last night and now I'm going in to keep her company as her journey ends..

Martin

Update.. just when you thought it was going smoothly

Nothing goes smoothly with cancer, I've learned that the hard way.

Friday night/ Saturday morning Jane developed an infection in her chest. Her temperature rose to dangerous levels and I just sat with her in despair. I phoned Caroline who came up straight away and together we put together a game plan. We contacted everyone and with Jane's wish for me never to take her to hospital again, we pushed for a return to St Mary's. Jane was in a semi-conscious state, sometimes crying out for God to help her. She hadn't eaten or drank anything in 12 hours and was not taking anything orally, including her MST. I feared the worse..

The on call district nurse was marvelous and soon had St Mary's on the phone and by 2pm she was in her own room, anti-biotics inside her and fans directed to keep the temp down. She looked so vulnerable but by 5pm I was so tired and had to leave her in the capable hands of the nurses. She was still in her semi-conscious state and I felt real guilt in leaving her.. still fearing the worse.

Martin

Homeward Bound ?

22 days Ive been in St Marys now - doesn't time fly ?And what a lot has happened too. In this time we have apparently elected a most unusual government - run by twins. And Edward had his 17th birthday.

Happy Birthday Edward !!

I measure the passage of time now by how much I can move my toes/knees/thighs. And any improvement seems to have come to a halt now. It takes a good half an hour of massage to 'wake' my legs up in order to get the smallest movement out of them. And that is very hard work. It can be a bit depressing.

'Home' is planned for Wednesday 26th - all being well. Everything is in place now. All the equipment I need and a care package which includes 3 calls a day and for most nights a sitter. Its very comprehensive and I must admit Ive been quite overwhelmed by the amount of help Ive been given - and will need. I'm going back to a very different life indeed.

How do I feel about going home? Things are so very different - I left home able to walk, move around, look after myself more or less. Now I'm virtually paralysed from the waist down which has a huge impact on the amount of pain I'm in. Lying in bed makes it much worse, I get stiff as a board. Martin is brilliant at sitting me right up with pillows so I can wriggle about a bit at least on my bum, relieving the pressure.

Despite all this I want to be at home, in my house, my home, with my family - and I know they want me home too. Its a bit daunting at the moment but we will be getting loads of support and I'm sure we will find our own level after a while.


Wednesday Afternoon

I'm home !!
Not without incident of course. The paramedics had a bit of a game getting me in the house on the stretcher and I provided the afternoons entertainment for neighbours and passersby, clad in a little blue nightie being lifted and twisted and turned in order to get me inside !

At one point I thought we were auditioning for 'Britains Got Talent' !!!

And the winner is........

....... well, we don't actually know yet. But 'Kidney Cancer - Jane's Journey' has been shortlisted for 2 awards, one of them a major PR award.

I don't know any more details yet apart from we shall know in July if we have won !!

How exciting !!

Pain xxxx Pain

Mostly, when pain starts creeping in and making itself at home, dealing with it swiftly and firmly is enough. Pain killers taken, position altered , then just try to relax and wait maybe 10-15 mins for them to start to work. And the blessed relief when they do.

But sometimes, and I'm not sure why, this doesn't work. No relief forthcoming. Pain intensifies. Wait maybe an hour and take some more. Maybe different ones. Wait again. A small bubble of panic starting tiorise. Wait again. Still nothing. Fear takes a grip now too. There is nothing worse than lying there in the dark in agony.

Distraction sometimes helps. Watching the TV or reading. Deep breathing, like we did in child birth, helps me a lot.. Swearing very loudly can be satisfying !!

But sometimes nothing helps - like tonight. It is now 2am, Ive had an extra 50mg morphine plus some other stuff and it hasn't worked. I cant even move around and position myself more comfortably in bed because of my right arm, so it becomes a vicious circle.

Pain + tension = Fear + more pain.

Ive always been an advocate of 'counting your blessings' - usually I can find dozens to make me smile. Last night I barely managed a couple, and that's hardly a smirk !

The pain is still there, digging its claws into me, holding on fast with its vice like grip....

It will pass. It will. Eventually. And I can relax at last. Till the next time.

My Man

I'm really worried about Martin. Terribly worried in fact. He is under such strain at the moment - and for once I'm not talking about me. Its his job. A short while ago there was a big change in the department in which he works - and in fact runs. His workload increased dramatically - unfortunately his workforce didn't. And the burden has fallen on him. He hasn't even been given basic staffing levels and has been told there will be NO new staff employed in the near future.

So - he has this terribly stressful job without the staff to do it with and he is trying to cope with the children and the house and everything that's happening to me. Poor bloke. I'm worried for HIS health now. He needs to take care of himself. Ive told him to go and see our GP and have some time off work - but hes a man....and men don't 'do' GP's apparently.

I love this man so much and its tearing me apart seeing him like this - I cant help feeling guilty too - as if some of it is my fault.

When my legs stopped working and I was admitted here 2 weeks ago it was blatantly obvious Martin wasn't prepared for my dying. Not at all. He has since admitted as much himself. So he needs time to do this. And talk to someone. A close friend maybe.

Update........
Martin went to see our GP this evening and has been immediately signed off work. Dr A. said he was amazed Martin had coped for so long.
I'm SO relieved.

Reality Bites

Getting though this isn't easy....this time it's taking more than a smile and positive attitude. Now it's a grim determination to see this through to the bitter end. No matter what lays in store for me along the way.



I still smile of course, and crack a joke and see the funny side of things where possible, but surviving this time is taking something deeper and more primeval - almost a type of anger/hate I can direct at my cancer psychologically, like a weapon.



Choosing 'anger' is a good thing as I found out the first time I was hoisted into my wheel chair. I couldn't believe the amount of muscle wastage and loss of sensation that has occurred in just 10 days. All I have left are tiny spasms in my feet and legs. I just burst into tears completely devastated. Clare the physio calmed me down. She explained there is still a lot of inflammation caused by the radio therapy which should go down and the fact that 'messages' - the spasms - are getting through to my toes is a good sign. I'm yet to be convinced. But there is an awful lot of hard work to be done - and this is where the anger comes in. I can direct it at my useless, pathetic, chicken legs right now and get on with my exercises. And it sure is hard work. Who would think that wriggling your toes can make you out of breath ? I kid you not - it does. After half an hour I'm sweating !

So reality bites. I was ridiculously over optimistic at the beginning - oh yes I would walk again no problem. But then I saw, and felt, for myself the damage that had been done and it hit me hard. I have a very long hard road ahead to climb - yes, another one, with no guarantee at the end of it and goodness knows what may happen along the away.

I have adjusted my goal too - at the moment it will be enough to have my legs shaved - and maybe some pretty pink nail polish ?

A Life Before

I did have a life before cancer - really I did - although at times its difficult to remember it now. Out of my 51 years only 3 1/2 have been blighted by Rcc. The rest were 'normal' - woman, wife, mother, homemaker - nothing to set the world on fire but a happy, secure and above all healthy life. As exciting as the past few years have been, all the travel and experiences I've had - how I miss my old life. How I yearn for it now. The simple routine of kids at school, Martin at work and me just running the house - cleaning and shopping etc... I loved it ! Every single moment of it especially when the children were little.


I've always worked, but only very part time. When James was born Martin and I made the decision that primarily I would be a stay at home Mum. Both of our mothers were the same and it was something we wanted for our children. I remember a glorious sunny '1960's' childhood so vividly. Mum always at home, Feeding the ducks, trips to the park and the swings, helping Mum bake cakes, swimming - it was wonderful. Me, my 2 brothers and Mum - Dad was away a lot because of his job but Mum was always there.

It was something I tried to recreate for James, Catherine and Edward - and I'm really happy to say I succeeded. Together with Carol and her 3 sons.

I was always lucky enough to have something my Mum never had - a car, and we would pile it high with provisions/pushchairs/nappies etc.. and take off for the day. The Nature Centre, the seaside, country park, Zoo, visiting friends etc.... Nothing phased us with 6 small children. Camping in Devon for a few days. We even went to Tunisia for a week when James was only 3 !!

The children became incredibly close in those special years before school, even Catherine being the only girl, and now consider themselves more cousins than friends.

I am now often asked what I consider my greatest achievement to have been?
Being involved in the fight to get Sutent funded?
Making the film about Kidney Cancer?
Going to Brasil?

No - none of these.

My greatest achievement has been to give my children the kind of childhood I had. I couldn't have done this without Martin of course. So it was very much a joint effort which gave them the happy, secure, contented first few years that I have seen them use as stepping stones to grow on and become the 3 amazing, wonderful young people they are today.

And I'm SO proud to have played a part in that.

Night Angels......

I'm still not sleeping too well.. For some time I've been waking in the early hours, unable to get back to sleep for ages.

But recently things have changed - I wake because of the very strange, very vivid dreams I've been having lately. For a good few moments I'm very disorientated - unable to distinguish between dream and reality..

This was quite frightening the first few times it happened. But by now the night staff are used to 'them' and 'me' and 'bring me round ' gently.

Thank goodness they are here. It would be horrible at home on my own! And not to say dangerous as the first thing I try to do is get out of bed - with legs that wont work !

The cause of these dreams is the heady cocktail of drugs I'm taking, especially the steroids plus all the stress I'm under.

The night staff are wonderful - they sit and talk to me quietly, make me a coffee and some toast and when I'm ready to sleep again they give me a lorazepam and watch whilst I nod off.

But what would I do if I were at home with no one watching me at night? For the first time ever I am happier and feel safer here than at home. For the first time ever I don't want to go home. I want to stay here, safe, with my night angels.

On my knees but still staring at the stars

Once the decision had been made, things happened very quickly - very quickly indeed for the NHS which usually saunters along at the pace of a constipated snail.
There was little time to waste if we were to try to stop the damage currently being inflicted on my spinal column. In fact it was so swift that i was still reeling and trying to come to terms with what WAS happening when i found myself, the very next morning squashed tight into a huge Smarties tube, surrounded by the most amazing building construction site noises which a pathetic attempt to distract me from them was being played - '70's cheesy disco music. It was a long uncomfortable hour having every inch of my spine being scanned in very great detail.
But i had no pain. Dr S had seen to that. I was quite calm and relaxed during the whole process.
An hour later i was back on stretcher, having taken a few More pain killers, and being wheeled up to the MRI centre for the results. Still flat on my back of course, until we knew if my back was stable.
Being Thursday it was DR P's big clinic day too and one of the nurses told him I was in the waiting room. Bless him. Out he came for an informal consultation there and then.
I am starting back on Sutent tomorrow (Friday) highest dose, all guns blazing and fingers crossed! I've had so many bits and pieces crossed now for so many people I certainly don't have any fingers left!! (Makes mental note to purchase a troop of African Juggling Octopii - lol) A very short time later I was called in to see Prof James for my MRI results. And oh my goodness - they were good. I have 2 areas of soft tissue deposits right nest to, but not involving, my spine. One where my bra strap is, the other in the small of my back. Both compressing the spine and causing the paralysis but not damaging it - yet. And both treatable with deep radio therapy and sutent. And yes - I can sit up and use a wheel chair!!
No sooner said than one appeared and with the help of three nurses i was soon sat in it. Heaven to be upright again!! I couldn't weight bare, had limited sensation in my feet and muscle wasted, especially in my calves which causes quite a lot of pain. But after transfer I could sit upright quite comfortably and safely.
Prof James exhibited the same positive confident aura as Dr Steve and Dr P had and I was soon signing the consent form for more radio therapy which would begin immediately - this afternoon!!
I was whisked upstairs to the planning department - and this is where I met the first problem of the day. A radiographer who didn't bloody listen to me. I told him that I couldn't weight bare, that I needed a lot of help transferring from chair to bed and visa versa. But his mind was obviously elsewhere and as i struggled to stand with only the help of Hayley, a lovely st Mary's nurse who had accompanied me. He just watched as my legs buckled under me and I fell to the floor, HARD. Fortunately though on my knees and not my delicate back. But the shock and the pain was enough and i was soon crying and screaming at him "Bloody idiot! Weren't you listening when I told you I couldn't weight bare??"
I had to be hoisted up off the floor, no apparent damage done except to my ego!! But the fright and thought and thought of what might of happened if i had landed on my back had been enough. I didn't trust him, didn't feel safe and i wanted to go back home (st Mary's)
In floods of tears, angry and anxious, i took another dose of the strong pain killers Dr Steve had prescribed for my use during the day. Then settled down to wait for the ambulance with Hayley. If i had landed my back it would of been broken in two places - and that would of been the end of that. So I returned to st Mary's still in a bit of a state, being comforted by Hayley. Once back I was checked over. A few bruises. A badly wrenched right arm where i had tried to save myself from falling - just when it was starting to get better too!! But my spine was ok thank goodness. What a horrible end to what had started out as a very encouraging, positive day. I was still angry - very angry though - but agreed to return tomorrow and finish the treatment as long as that idiotic muppet radiographer wasn't involved!! He wasn't. I reckon he had seen me arriving at the department and made a run for it.
Needless to say the rest of the planning went a head beautifully and i was soon my way downstairs for the first treatment (There will be 5 altogether - including weekends too!)
My tummy and sides and now covered in tiny black tattoo markers for the machine to look in on. Never thought I'd see the day when i was covered in tattoos!!
The treatment took just over 5 minutes and we were all back in st Mary's by 5:30 pm - tired and hungry - but all in all one piece

1 down - 4 to go!!

Just a glimmer...

You are in a long dark tunnel and its absolutely pitch black. Suddenly up ahead there is a tiny speck of light... just a glimmer.. but it makes your heart leap with hope.

Well, as I said before, what a difference 24 hrs can make. Dr Steve, St Mary's consultant,came to see and examine me. After just 24 hrs of high dose steroids I can move my legs again ! Up and down, side to side and even raise them off the bed. This is apparently a remarkable response and I sign that radiotherapy could indeed work. I can only stay on the steroids for a few weeks because of the problems they cause and so the problems with my legs would return. With radiotherapy I would have an 80% chance of shrinkage lasting for maybe a few months !! I will have to have an MRI scan to see if my spine is stable and if it is I can at the very least use a wheelchair again. He is going to discuss changing back to Sutent with Dr P too which if Ok, should reduce the need for blood transfusions plus (fingers crossed) start shrinking my tumors again since I've had an 8 month break from it.
So another huge shock.
And another big decision.
How brave am I ?
Can I grow through with awful radiotherapy again ?
The side effects will be very worse as my whole spine will have to be treated. Dr Steve has promised he will dope me up with mega pain killers for each session and they will keep me here at the hospice throughout the treatment.
Am I strong and brave enough to keep fighting ?
One look at Martin's face gives me the answer. Whilst there is a glimmer of hope I can't stop fighting, not even now. Even if the radiotherapy works this is no cure of course but it may make my final weeks/months much more comfortable and would possibly mean I wouldn't be bed bound. The change back to Sutent may work or may not but if it does may slow the progression of my disease elsewhere again.
There are no guarantees, I know that, I have been treading my own path fighting RCC for some time now in the hope it may help not only me but those who find themselves in the same position as me. The one thing I have learned is that you deal with one problem and another pops up straight after.
The most important thing with all the operations, procedures and drugs is to remain steadfast, strong and positive. Smile and laugh with those around you... even if there is precious little to smile about.

Jane

PS. Reading all the comments and thoughts from those following my journey has left me quite emotional and even more determined to fight to the very very end. May I thank all of you from the bottom of my heart especially those who have taken comfort from my words to combat their own personal grief.

Almost the end of my journey

* Written by Jane at St Mary's.. typed and posted by Martin.

What a difference 24hrs can make. Its almost unbelievable really. I'm sure I'm still in shock, I know Martin is.
As I've said before on my blog, I was getting quite a lot of pain in my legs. But I was still managing to potter around on my frame. In fact I was making cakes on Thursday ! The pain in my back, which spread like a tight band around my middle was no worse and being controlled quite well by Ibuprofen. By Sunday my legs were much more painful and I felt quite unsteady when walking so I was quite happy to spend Sunday afternoon and evening with Martin having a blood infusion in the QE Hospital. That for once went well, 3 units in no problem. At 2am we got home and I walked into the house.

Monday morning I woke in agony and... well you know the story from there.

So now I'm back at St Mary's where they are trying to get my pain under control, which isn't easy. My back especially is very painful. I've been catherterized to avoid any accidents as my bladder control is going.
I was offered treatment, radiotherapy or an operation but neither would be curative and would involve a lot more pain and being messed around. I'm not sure my body could take it. So I'm having my pain control sorted and then I'm going home... to die. Its the right decision.
Everyone has been fantastic. Martin, the kids, Carol all the nurses and Doctors. I can't praise them highly enough. 'Team Jane' at its very best.
As I said, I think I'm in shock, but when I feel a bit more settled I will write again.

PS. My hair is still falling out.

Jane

There are no words....

I really don't know what to say...
Janes's condition has deteriorated suddenly in last 24 hours. She can no longer move her legs without severe pain. We had all and sundry here this morning, McMillian, district nurse, carers and two ambulances.
She was in so much pain that the decision was made to go straight to the Hospice. A simple line like that cannot decsribe what we all went through for 4 hours this morning..
She has a compression on the spine which is either the tumor pressing against her spinal column or a tumor eating away at it. Either way, the Dr said 'its serious' and gave her four options, two of which involved hospital and two paluative care only. Jane in a clear and concise voice stated, 'I'm not going back to hospital, please just make me comfortable, I just want the pain to go away !'
She is so brave, I love her so much.
She requested that they manage her pain and then she wants to come home...
I hope there's time for her to get wish.

Martin