Monday, 31 August 2009

The 'thigh's' the limit !!

The letter was waiting for me on the door mat when we returned home. From the Royal Orthopaedic Hospital. I had an appointment with Mr Grimer, a bone cancer consultant, on Thursday afternoon. That's soon. Very soon.

The weekend and early part of the following week I spent resting as much as possible - I had no choice. I felt so unwell. Terribly tired and with awful pains in my legs and feet. It probably had a lot to do with the fact that I had built myself up and kept going for the big launch last week - and then Ive come down with a big bump. Resting definitely helped. Plus sleeping as much as possible although not always at night. Ive given up trying to get back into a routine of sleeping through the night and just sleep whenever I can. And not worrying about it.

Thursday afternoon Martin and I arrived at the ROH, a new hospital for us, on time for our appointment at 2.30pm. To find the clinic was already running 2 hours late. Its not really a problem - you just have to accept it, relax and wait. In a way I find it comforting, it means the consultant is doing a thorough job with all his patients and not rushing through them with his eye on the time.

We finally were called in to see Mr Grimer and his specialist nurse at 4.45pm. He was really nice and friendly with a lovely smile which put me at ease straight away. We chatted a bit about my treatment over the past couple of years, my new found 'fame' (Martin had found another article about me in a local free paper in the waiting room) and then he put the recent x-rays of my legs up and things got serious.

In my right femur the tumour is in the bone marrow right in the middle, and it only extends a little bit into the bone so far. So that's ok for the moment.

But in my left femur the tumour extends right into the bone on all sides, in fact in one place there is only a thin piece of bone left. He looked me in the eye and said 'I'm really worried about this'. Now when a consultant says he is worried then you worry too. A lot.

The bone needs supporting - and now. Basically it could break at any moment and that could cause me real problems. A broken femur is pretty serious at the best of times but when its weakened by cancer there is a very real risk it wont heal again. I could end up in a wheelchair for the rest of my life. So it needs two rods inserting, one on each side, and then pinning at the top and bottom. He asked his nurse to find out if I could have an MRI scan now - this minute - and if not as urgently as possible. They need a scan to see the whole of the bone all the way round to find out where to pin it.

I'm waiting for a last minute cancellation MRI this week and then the operation will be carried out at Selly Oak Hospital, where I used to work, because they have the specialist kit and surgeons there. And that could be any day after the scan.

This may all sound very depressing but actually it isn't. Mr Grimer spoke of follow up treatment like radio therapy and then an infusion of Zometa, a bone strengthener, regularly afterwards. And keeping a close eye on my right femur.

Like Dr P. he is still treating me with the aim of fighting my cancer - he isn't giving up on me. So Mr G. joins Team Jane and a very welcome addition he is.

I left his clinic quite happy (well as happy as I can be!) and positive still - but with his words of warning ringing in my ears. NO weight bearing on my left leg. AT ALL. I have some elbow crutches to hobble around the house with but if I go out its in a wheelchair only. Basically to rest as much as possible. Which I am doing - it will only be for a week or two and then Ill be back on my feet again. With my bionic leg !

The next day, Friday, I went to my local Hospice for the day. Ive been putting this off for a while now but thought now was the right time to gently introduce myself to it. I had a really nice day - not at all what I was expecting. Each Friday I'll be going there, to the Day Unit. It will be a day when Martin wont need to worry about me at home on my own - and when the staff can make sure I'm resting.

They have computers with internet connections there so next Friday Ive decided I shall be blogging live, from St. Mary's Hospice in Selly Oak !!

Wednesday, 26 August 2009

Radio - Sky - Global News !

Kate was there at 8.30am with a taxi to take us, Martin, Catherine and I, to the radio studio. The boys had decided they would rather have a lie in - lazy toads.

As usual Kate was really concerned about how I was feeling, making sure I was ok and felt up to the day ahead. I knew little about PR work before I met the girls Charlotte, Kate and Heather from RedHealth. The only impressions I had of the job was of the 'Absolutely Fabulous' kind - and that couldn't be further from the truth. They have all worked so hard on this campaign and have been so kind and considerate to me and my family. They are all a credit to the company they work for.

Ive never been to a radio station before so had no idea what to expect, but I did expect it to be busy and bustling with a lot of people there. It wasn't. In fact we were the only ones there apart from the producer and the man who twiddled the knobs and made everything happen. We sat in the main reception area which was very plush with big squashy sofa's and coffee and croissants and the papers and waited until my first 'slot' which was to be at just after 9am.

The list of interviews I was to do was a bit daunting - actually it was blooming scary - 11 altogether. And 4 of them 'live' (eekk!!) All were for local radio stations and covered the country from Jersey to the north east and Wales.

A few minutes before the first interview was due to start I was shown into a teeny room with a desk, a set of headphones and one of those big microphones that hang down in front of your mouth. One side of the room was a huge window into the room next door where all the technical stuff was, a long desk of knobs and buttons and screens and the producer sat and could talk to me. And at the back of this room sat Martin, Catherine and Kate - grinning at me like Cheshire cats!

I put the headphones on - and waited, my heart thumping away. I'm sure they must have been able to hear it next door. All of a sudden a voice in my ears said 'Hello Jane' - and we were off.

The morning passed in a blur of me chatting to various DJ's from up and down the country about the kidney cancer awareness campaign, Jane's Journey and the signs and symptoms and importance of early diagnosis. My early fears melted away and I found it much easier than I expected - really enjoyable - I think I must have a face for radio!

I had a couple of breaks during the morning and was allowed out of my 'cupboard' for a coffee and it was during one of these that Kate told me 'Jane's Journey' had been rolling news on Sky News all morning - and I had missed it !! We found it online and watched it. What a brilliant piece Eleanor had done. It was everything and more we could have hoped for - and on Sky rolling news!

Just after 1pm and we had finished. The pains in my legs and exhaustion I now felt, I think I had been running on adrenaline up to then, drove us back to the hotel where I took to bed for a rest. Martin and the boys went out to explore the West End, Catherine stayed to keep an eye on me.

We had an early dinner, caught the train, and were back home by 10pm. It had been a long couple of days - but so enjoyable for all of us. Most important of all I felt I had done my very best in representing kidney cancer patients in raising awareness of this horrible disease.

Early the next morning the press/media coverage started to come in - the following are just a few that were aired/published.

Sky News

Lack Of Awareness About Kidney Cancer In The UK: Sufferer Stars In Short Film About The Disease - Sky News Video Player

'Jane's Journey' makes it onto a US news station!!

Ebru News Kidney Cancer On The Rise

And my local news paper....

Birmingham Mail - News - Birmingham News - Selly Oak nurse's battle with kidney cancer to be watched by millions

Sunday, 23 August 2009

"Jane's Journey"

Wednesday 19th August was the launch of the kidney cancer awareness campaign and "Jane's Journey", a short film which highlights the importance of the extra time which can be bought for terminally ill patients by the use of the new kidney cancer drugs.

What a day !! I hardly know where to start - except it was early, 8.30am to be precise, when we were picked up from home and taken to the train station...complete with 3 cases for an overnight stay !! We were being delivered virtually door to door so I wouldn't need to walk very far. In fact the furthest I had to walk was out of Euston station into another taxi which took us to our hotel, The Shaftsbury, right in the heart of theatre land.

The event itself was due to start at 3.30pm but the press would be there from 2pm for interviews so we didn't have long to get ready. After Catherine had the usual battle with my hair, its far too long now and really needs a good cut, we set off on the short walk to the Curzon Cinema. It was a beautiful, sunny day and really warm and my legs wern't too bad so I managed to walk there with just one stick.

The Curzon Cinema is small and painted black on the outside - in fact it looks like one of those that show 'X' + rated films in foreign languages. But inside its lovely, spread out over 3 floors and there was a bar and refreshments set out for our launch on the 2nd floor - the cinema itself was on the 3rd.

We met up with the ladies from Red who were very busy organising things with Sky News and AP - the two film crews who were already there. Eleanor, the reporter from Sky, was lovely - really friendly. The lady reporter from AP was terrifying to say the least - very bossy and demanding I'm sure she is really good at her job but she scared the life out of me !

I did a quick piece with Eleanor in the cinema itself with the film playing in the background which went really well - then it was Cruella's turn (I call her that for a reason as you will see) She wanted footage of me and my family walking down some stairs and into the cinema. Hmm...ok. I really cant 'do' stairs because they make my legs hurt too much and I end up going down them on my bottom at home. Buy I thought Id grit my teeth and have a go - trooper that I am ! So we did it. And again. And again. Because she wasn't happy with the results. By this time I was waddling like a penguin such was the pain in my knees. Still, she got her footage but if you see it notice the fixed grimace on my face !

I then went into the cinema with her and her camera man where she barked questions at me for a few moments, then thankfully she said 'thats all' and swept out. Phew....

Time for the screening. I didn't realise there were so many people there, the cinema was almost full. I sat there clutching my speech (more of that later) my mouth so dry my tongue was stuck to the roof. Nick Turkentein, from the James Whale Fund, Nicholas Owen and Pat Hanlon from UKKC introduced some of the shorter clips with lovely, witty, off the cuff speeches and then it was my turn.

I'd been working on my speech for a week. I'd had to write it down to make sure I covered everything and to stop me gabbling which was a distinct possibility anyway.

I stood at the lectern and looked out at the sea of faces - my family, friends, Rose and Clive, Dr P, Daniel and his team, the ladies from Red - and a huge lump appeared in my throat. This was the culmination of such an emotional event for me. Oh Lord... don't let me cry now. Then I saw Grace waving at me "Hello Nanny Jane!"

So 'Nanny Jane' gave her speech and didn't falter - not until the very last few sentences where she explained that her disease had progressed and noticed several people sniffling on the front few rows.

'Jane's Journey' was shown but to be honest I watched it through a film of tears. This was such a gift - not just to every present and future kidney cancer patient, but to my family. Something so very special they will be left with when I'm gone.

The rest of the afternoon passed in a bit of a blur - hearing the very kind comments from everyone and discussing where to go in the future. With me trying to ignore the increasing pain in my legs. Id been on my feet all day and was really noticing it now. Id taken my MST that morning but like a dummy had forgotten to bring my Oramorph out with me.

At 7pm some of us, family, friends etc.. went for a meal to round off the day. It was nice and at last I was able to sit down and relax a little. But the damage had been done and it wasn't long before I had cramp in my hands and across my middle and all over my legs and feet - and I had to admit defeat and go back to the hotel. It had been a very long day.

At 4am I woke in agony. And stumbled to the bathroom where I sat on the loo sobbing the pain was so severe. I took 20mls of Oramorph and sat groaning and crying waiting for it to work. Which it did after what seemed to me was an hour but in reality was about 5 mins.

Like I said earlier - what a day. And I had to be up early the next day to go to a radio station and record some interviews. Fortunately I woke feeling much better and it was a bright and breezy Nanny Jane who set off that morning - this time with her Oramorph in her hand bag !

Thursday, 20 August 2009

Press Release 19/8/2009

New Survey highlights shockingly low public awareness of kidney cancer, despite more deaths each year than road accidents

20 August 2009
New Survey highlights shockingly low public awareness of kidney cancer, despite more deaths each year than road accidents
Kidney cancer is the least heard of cancer when compared to a range of other types of the disease1, even though it is the eighth most common form3
Worryingly, over one in ten (11%) people who have experienced blood in their urine, an early symptom of kidney cancer, have not had it checked out by a medical professional.

The James Whale Fund for Kidney Cancer and Kidney Cancer UK are launching a series of impactful films to help raise awareness of this cruel disease.

London, 20 August 2009. The James Whale Fund for Kidney Cancer, with support from Kidney Cancer UK, today announces new research that shows a shockingly low awareness and understanding of kidney cancer amongst the Great British (GB) general public. The YouGov survey of 2,145 GB adults shows that kidney cancer is the least heard about form of the disease, with only 2% of GB adults having heard much about it when compared to a range of other cancers. Interestingly, over half of GB adults (54%) claim to have heard most about cervical cancer and 42% for leukaemia, even though there are fewer cases of these diseases than kidney cancer each year. According to the survey, only half (56%) of GB adults have ever even heard of the term „kidney cancer‟.

“The results from this survey are concerning. Every day in Britain, around 30 people find out they have kidney cancer,” said Professor Tim Eisen, Professor of Medical Oncology at the University of Cambridge. “If caught early, surgeons can remove kidney cancer and cure the patient.

This survey shows that most British adults don‟t know what the symptoms of the disease are. Perhaps as a result, early symptoms such as blood in the urine are being missed. We have developed effective drugs to control advanced kidney cancer, but the only way to cure the disease is to destroy the cancer before it has spread.” According to the survey, only 5% of GB adults correctly identify smoking as the probable main cause of kidney cancer. This is particularly concerning given that cigarette smokers are thought to be twice as likely as non-smokers to develop kidney cancer.4 Over a quarter (27%) of GB adults mistakenly cite alcohol as the main probable cause.Kidney cancer accounts for around 3,700 deaths annually, which is more than die on the roads each year.

In the UK, the number of people diagnosed with kidney cancer has increased by 22% over the last ten years.The findings of this survey coincide with the launch of a series of new films that aim to help increase awareness of this devastating disease.

The main film entitled Kidney Cancer: Jane’s Journey, was commissioned by the James Whale Fund for Kidney Cancer, Kidney Cancer UK in co-sponsorship with Novartis Oncology, Red Health and Day For Night Films. The film highlights the personal journey of 50 year old Jane Thompson, a mother of three from Birmingham, who was diagnosed with advanced and incurable kidney cancer in 2007. James Whale, Founder of the James Whale Fund for Kidney Cancer, and himself a patient having been diagnosed with Kidney Cancer in the year 2000 describes Kidney Cancer: Jane’s Journey as “an impactful and incredibly moving account of the reality of living with advanced kidney cancer and the unquestionable importance of extended time for these people thanks to medical advances in this area. Through Jane‟s strength and determination, the film conveys a sense of hope as viewers watch her "squeeze the most out of every minute‟ that she has left with her family. In the film Jane successfully attempts to break down the "taboo‟ of death by showing the fantastic things that can be achieved in life, even when you‟re confronted with a terminal diagnosis.”

Jane Thompson herself says: “When I was diagnosed a couple of years ago I knew very little about kidney cancer, so I feel very passionately about anything that serves to increase awareness both with the public and the medical profession.”

Kidney Cancer: Jane’s Journey is available to view on You Tube. Jane also keeps a blog, which can be viewed HERE . The film is housed alongside other educational clips intended to showcase the plight of those living with kidney cancer and highlight the importance of hope for those who have been affected by the disease. BBC News presenter, Nicholas Owen, Founder of the James Whale Fund for Kidney Cancer, James Whale, Kidney Cancer Trustee, Pat Hanlon, Professor of Medical Oncology, Tim Eisen and carer and Kidney Cancer UK member, Jackie Lowe, all share their experiences in the educational clips that accompany the film.

The survey and launch of the films have been funded by an unrestricted grant from Novartis Oncology, a division of Novartis Pharmaceuticals UK Ltd, to the James Whale Fund for Kidney Cancer.

Saturday, 15 August 2009

The way forward....

It was difficult to imagine there would be a way forward at one time. It felt like everything had come to a full stop - with nowhere to go.

I'm not actually due to see Dr. P. until 27th of this month so it was quite a surprise when he called me on Wednesday - with The Plan.

How many doctors would do that? How many doctors would call and spend over half an hour discussing options and putting your mind at rest that there were still treatments out there which could help you....... plus the fact he had already put these plans into motion? Not many I can tell you.

Firstly, my bone scans and x-rays have been sent to a Mr.G. who is a consultant oncological orthopaedist (bone cancer specialist). The main areas of concern are my femurs. Mr G. will decide if they need any artificial strengthening in the form of a rod inserting, or plating, or some concrete stuff injecting into them (sounds lovely doesn't it?) Because where the tumours are the bones are weakened and at risk of fracturing. So we are waiting to hear his opinion now.

Secondly, I'll be having radio therapy on my legs which will help with the pain and could slow down the growth of the tumours at the same time. Apparently it is really good for pain relief which would be great as I'm still taking 100mg of MST a day to control it. Id really like to be able to lower that. It's not a real problem but I do feel permanently 'tiddly' - like I've had a couple of glasses of red wine !

Thirdly, every 4 weeks I'll be having an infusion of a bone strengthening drug. Dr P. has used it before with his prostate patients and there is every reason to believe it could work for me.

Fourthly - to stay on Sutent.

Finally - Dr P. pointed out that until we hear back from Mr G. I really need to rest my legs. And stay off them. Which is easier said than done because it's totally against my nature - as I'm sure he knows !

So thats the plan - and I like it !

Attack my cancer from all sides - don't give it a moments peace - blast it with radiation, drown it in drugs and give me bionic legs if necessary !!

Tuesday, 11 August 2009

BURSTING with pride !!!

Well I made it !!

I was so determined to be there.

James' 'Passing Out Parade' with the RAF today.

It was a wonderful day, the sun was shining, and James - well, I couldn't have been prouder.

Saturday, 8 August 2009

Reeling and regrooping

I havn't slept for 2 nights. I don't think anyone else here has much either. The shock of my scan results hit us all like a tsunami and left us gasping for breath - not quite sure what to do next. Martin was in a dreadful state, unable to go to work yesterday, wanting to talk and yet breaking down when we tried to. It was like when I was first diagnosed all over again, the shock, the fear, all those feelings of being out of control washing over us.

Caroline and Sarah rush round on hearing the news and wrap themselves around us like a big fluffy blanket trying to comfort us - their words don't help but their presence does.

I feel this enormous sense of guilt as if it's all my fault - I know it's not, I know it's the cancer and it's not me, but I can't help feeling like this. It's my fault and I have to put things right somehow but I don't know how. I don't know where to start.

I know what happened - we became complacent. Martin especially. He had settled into the routine of Sutent working, maybe a little blip here and there, but generally everything going along fine from month to month, scan to scan. The longer this went on with me being well the more he became seduced by the idea that this could continue ad infinitum. He even comments on this in the documentary.

It's not a bad thing of course. In fact it's the only way to live rather than being constantly anxious, permanently fearful, but it does leave you wide open to the shock when things DO change.

Slowly we surfaced, calmed down and took stock.

Essentially nothing has changed. I'm still the same as I was a week ago. Ok so I have a few more tumours in my body but I'm still Jane, 100% Jane in the bit that really counts. The bit that will never give up fighting because it simply can't.

So I did what I always do and starting searching online for information about the treatment of bone metasteses. And yes, there is a drug that can help protect the bones from breakages, even strengthen them and slow down the growth of the tumour. I have no idea if it will be appropriate for me, or even available to me, but I'm sure Dr. P. will.

The sun is shining, the birds are singing, the bees are buzzing and the butterflies are fluttering and tonight I know I shall sleep.

Friday, 7 August 2009

Jane's Journey - The final leg.

Since I started his blog two and a half years ago (was it really that long? It only seems like yesterday) I've always tried to write in a light hearted, hopefully humorous way. Shortly after I was diagnosed I made the choice to be positive and upbeat - no matter what was thrown at me -and be happy and just so very glad to still be here.

But there comes a time when humour doesn't work any more, when all the positive thoughts in the world wont make something disappear. And that time has come.

I wasn't expecting anything to show on my bone scan, I thought it was just a formality to confirm the pain I had been getting in my joints and muscles was due to Sutent. I didn't even ask Martin to come with me for the results. "I'll be fine" I said. "It's ok I'll take Catherine for company"

I should have known better. A small voice should have warned me that each time in the past I had received bad news Martin wasn't with me.

It was a busy, busy clinic again and Dr P was running over an hour late - that didn't really matter though especially as it took 2 nurses over half an hour to coax a few drops of blood out of me from the one teeny, weeny vein I have left in my hand now. That one has now finally given up the ghost and they were eyeing up my feet for the next time I need blood taken. Catherine and I then sat waiting with all the prostrates and their wives and a new young chap who I assumed to be a 'testicle' because he was so young - only in his 20's. Poor lad - he looked terrified. I remember how I felt the first time I came to the Cancer Centre. I remember feeling how out of place I felt because then I looked and felt so well. Now I hobble in using a stick and all the staff call me by my first name and ask after the children and we chat about holidays and who's had a baby and who's getting married. I feel like part of the fixtures in there now.

When Dr.P. called me he pulled up the bone scans on his computer and turned it round so I could see. A bone scan looks a bit like an x-ray with outlined in pale white - except on mine there were several large dark masses in the middle of them. I knew straight away. Dr. P didn't have to say a word. I felt like someone had sliced my stomach open and the contents were spilling onto the floor.

In the middle of my left femur, my right humerus, my sternum, on my right ribs and on the top of my skull were large dark blobs. And a lot of smaller, slightly lighter, less defined deposits.

Bone metastases.

Oh shit oh shit oh shit - it's everywhere.

Total shock.

Why hadn't I seen this coming?

Why was I completely and utterly unprepared for something that I know is a natural progression of my disease?

I had been so wrapped up in what Sutent was doing to my joints and muscles I had forgotten that although my cancer was being slowed down by Sutent, it was still working away inside me like some nasty insidious parasite. And spreading.

So it seems I am on the final 'leg' (yes it's a pun - you can smile!) of my journey. There is no disguising it now - it is what it is.

Tuesday, 4 August 2009

Assisted Suicide

Last week Diane Purdy won her appeal to have the DPP set out clearly whether it would prosecute in regard to anyone helping a terminal patient travel abroad to commit suicide. Which has to be a good thing doesn't it? Ms Purdy is suffering from MS, a condition that means she may be physically unable, when and if the time comes, she wishes to end her own life. She will need to travel abroad to do this where assisted suicide is legal. And naturally she wants her partner to be able to accompany her without fear of him being prosecuted when he returns to the UK.

Being terminally ill myself, and having been in such excruciating pain last week, made me think long and hard about all the implications surrounding assisted suicide. It is illegal in this country of course - but what exactly is the definition of 'assisting'?

If I decided I wanted to end my life and Martin passed me the bottle of pills with which to do it would he be guilty of it? Even if I was the one who actually took them? Or would he be guilty of 'assisiting' by merely sitting there and watching and not doing anything to stop me? It's a bit of a mine field isn't it and the law certainly needs clarifying.

There are the fears that too much clarification and the situation may arsie where dear old Aunt Mabel, terminally ill but living in a lovely (but very expensive) nursing home may be taken on an unexpected 'holiday' to Switzerland and not return.

Or that the terminally ill patient may feel pressure, whether real or imagined, to end their life early and save their relatives all the stress and strain and grief of watching them die slowly.

I believe we, the terminally ill, have a fundamental right to end our lives when they have become unbearable - but it must always be OUR decision. And the circumstances surrounding that decision will be different for each person naturally. And can change from time to time. Last week I had started to wonder just how much pain I could tolerate before I began to plan such a course of action. And yet this week I'm almost back to my 'normal' self.

However, one thing that did cross my mind in regard to those of us with a terminal illness who are not ready to end our lives yet - indeed we wish to extend them with the help of the new cancer drugs that are becoming available. I wonder how NICE would appraise any proposal on assisted suicide? It surely would be more cost effective than any life extending drug. Will NICE be approving assisted suicide as a treatment 'option' in the future?

Scary thought.....

Sunday, 2 August 2009

Bones and Frocks

With all the CT scans, X-rays, Lymphocintothingys, bone scans and treatments I've had in the past two and a half years you would think I would be radio active enough by now - any self respecting Geiger counter would go haywire in my presence. In fact Martin often jokes you could probably successfully plug an item of electrical equipment into me and it would work. So when I turned up to have a bone scan on Monday morning the radio active injection I was given could have been surplus to requirements.

On Saturday morning I started a course of Dexamethasone, a steroid, and by the evening I was feeling amazingly better. Not only in my joints but in my general health as well. Much brighter and perkier and I was actually hungry for the first time in days. I must admit I was a bit wary of taking them - I really don't want to pile on the weight or grow a beard or look like Arnie - but they certainly have seemed to do the trick.

As I was feeling so much better, after i had been given my radio isotope injection (ouch!) I had a couple of hours to kill before the scan itself so I decided to drag Martin into the Bullring to look for 'the' dress for the launch of the documentary.

Now Martin may be great in many, many ways but Gok Wan he ain't and I wasn't holding out much hope he would be of much help. How wrong was I. We had only been in Debenhams a few minutes and he was pulling out nice, suitable, fashionable frocks - and accessorizing them with shrugs and bags !!

Dress and little cardi were tried on and paid for (by Martin so even better!) in half an hour which has to be a record for me. So that was a huge relief - I was starting to panic a bit.

Back to the hospital and the scan - which wasn't that bad really. Just uncomfortable as you have to lie flat on your back for 40 minutes.

I'll get the results on Thursday when I see Dr. P. but to be honest I'm really not that worried - I feel SO much better than I did last week. What a difference a few days, and a few pills can make. And best of all I've got 'the frock' !!