Wednesday, 28 January 2009


I have always been a 'Tesco's Girly'. I love Tesco. Having a family of 5 (now all adults) to feed value for money has aways been important and where else can you buy a kettle for less than 5 pounds?

Yesterday however I was cursing them. I had my pain patch on, had dosed myself up with paracetamols, and set off to do the weekly shop. As long as I didnt bend down or twist I was fine. Quite comfortable. Bending down is definitely the worst - it seems to 'squash' my new lump under my ribs and results in a very sharp shooting pain.

The Tescos I shop at is huge. Massive, spread over 2 floors, and it can take well over an hour just to walk around and do the shopping on a good day. Yesterday it took me 2. Because, as I discovered very early on, everything I needed was either on the top shelf - or even worse - the bottom. Having to stretch up or bend down to pick up an item and then bend down to put it in my trolley left me in agony by the time I reached the check out - and in a very bad mood !

Some time ago I was issued with a 'blue badge' which enables me to park in disabled parking places. When Im feeling well I dont use it - I dont need to. But when Im feeling unwell or in pain like yesterday I do. Tesco has 2 huge long rows of disabled spots and as it wasnt particularly busy I managed to park quite close to the main entrance. In the past Ive had a few 'funny looks' from people when I use my blue badge - probably because on the outside I look quite healthy and fit. It just goes to show all disabilities arn't visible on the outside.

So I trundled my trolley back to the car and started to load my bags into the boot - grimacing every time I had to yet again bend down. During this process, I had about 12 heavy bags, I noticed a lady standing at the front of my car staring at me. She was leaning on a couple of sticks just staring at me and staring at the badge displayed on the dashboard of my car. By this time I had had enough - "Just say one word and Ill kick your sticks from under you" I muttered under my breath. Fortunately, for her, she wandered off but was still glancing over her shoulder at me.

What is it with these people? Just because I dont use a wheelchair or have a walking stick they seem to think Im not entitled to my blue badge. Maybe I should have a tattoo on my forehead saying 'I have cancer and am on chemo and get short of breath and have to run to the loo regularly and am in pain and you will almost certainly live a lot longer than me'

Anyway - back to Tesco - please could you put all the things I want to buy on the middle shelf from now on?

Monday, 26 January 2009

Pain and Patches

This is The Headland Hotel in Torbay, isnt it beautiful? It was originally built for the Russian Royal Family and many of the original features remain - including the lift !

We were lucky enough to be upgraded to one of the turret suites you can see in the picture, with fantastic sea views. And for once the weather forecast was completely wrong - we had brilliant sunshine for the whole weekend although there was a very chilly wind. In fact the whole weekend was lovely, we spent Saturday exploring Dartmoor, getting lost and finding a 700 year old pub to have lunch in.

Part of the evening entertainment provided by the hotel was bingo. Martin, being a 'bingo virgin' was a bit reluctant at first, but after a couple of games he was well and truly hooked - to the extent of buying his very own 'dabber' ! Needless to say we didnt win but had a lot of fun trying.

During the weekend I was getting quite a bit of pain from the 'new' tumour on my right hand side. Ofcourse until last week I had no idea it was a tumour causing this pain - I thought it was muscular in origin and as such it was quite easy to dismiss as 'a pulled muscle which will get better'. Is the pain really worse or is it purely psychological now I know the real cause? I dont know to be honest. Im certainly more aware of it, especially as I can not only feel the tumour under my skin but can also see it protruding.
Mary, my Macmillan nurse rang this morning about my scan results and to see how I was. She wasnt at all surprised to hear I was in quite a lot of pain as she had seen the scan herself and the size of the tumour. After discussing it with a doctor at the hospice she said she had some ideas for pain relief and would be straight round. And she was. With some pain killing patches, which along with regular paracetamol, should do the trick. I hope so, I really dont want to start taking anything stronger just yet. Ive had it on since this morning and it does seem to have dulled the pain a bit, except if I bend down or twist - so Im trying to avoid doing that !

We had a nice long chat too and with her help I managed to get things back in perspective. Ok, so I have a big lump sticking out of my side and it appears to be isnt invading a vital organ and there is no reason to believe that Sutent wont start working on this one soon. Mary also mentioned it may be worth considering radiotherapy - which Im not too keen on to say the least - but if it stops this thing growing it would be worth it.

The MTM is this Friday so Im really hoping to get some answers. Such as whether this is a serious setback or just a slight blip. Because I still have some serious cruising to do yet !

Thursday, 22 January 2009

Scan number 11

Its been 2 years since I was diagnosed and in that time Ive had 11 CT scans - but this was the first time Ive had one that threw up more questions than answers.

Thursday afternoon is definitely the best time to attend the Cancer Clinic, by the time I arrived for my appointment at 4pm the place was almost deserted. There were perhaps only 12 other patients there waiting to see the various oncologists and only one chap other than me to see Dr P.

When we were called in Dr P had his new CNS with him, Susan, and a pharmacist who will be holding a clinic in the future purely for Sutent patients. We started off by discussing how I had been coping with the side effects of Sutent, which was pretty well, and then moved on to my CT results. This is where the confusion started - some tumours which had been reported on before wernt mentioned and some new ones had appeared. Dr P spent over an hour going over all the scans Ive had and trying to make sense of whats happening.

Basically the two tumours I have under my right arm pit have shrunk. The one I had in a lymph node next to my lung has disappeared. But I now have tumours in both my adrenal glands, not big ones, but big enough to be measured. And there is a huge new one, bigger than a golf ball, on my ride side just under my ribs - which explains all the pain Ive been getting there which I had though was muscular. This tumour is almost completely necrotic (dead) though but with a teeny line of live cells around the outside - very similar to the one I had next to my lung. According to Dr P this is very unusual (trust me) and he is going to hold a review of all my scans with the next Multidisciplinary Team Meeting. There was no mention of the tumours on my left hip or right rib.

Overall though Dr P said I still have stability and he was pleased - so was I, albeit a little confused too ! I guess Ill just have to wait for the review by the MT.

I left with my next prescription for Sutent a little deflated as I was expecting much better more definitive results - but having mulled it over during the night, as you do, Ive decided that whatever is going on Sutent is still working, Im still here, and thats the important thing.

Today Martin and I are going down to Torquay for the weekend (Torquay in January!) just for a little break. The weather forecast is terrible so we will probably spend most of the time huddled round the fire in the hotel !

Sunday, 18 January 2009

The 'F' Word

Today is my birthday. And I am fifty. Im hoping if I write it in teeny little letters no one will notice ! This has come as a bit of a shock to be honest. Most people can psychologically prepare themselves for this milestone birthday but it has caught me completely unaware - mainly because I didnt expect to be here still, and neither did anyone else....not really.
Subconsciously Im sure it has been at the back of my mind but, not wanting to tempt providence, I had nothing special planned. I think I was hoping it would pass quietly, unnoticed, with a few cards
from the kids (with the obligatory 50 on the front) and maybe some flowers from Martin. Caroline, however, had other ideas and last night, together with her partner Trevor, took us out for a surprise dinner party at one of my favourite posh restaurants. We had such a lovely evening, fabulous food, wonderful company - a really special way to celebrate. I also found it very, very emotional to say the least.
Physically Im still doing really well - but emotionally Im struggling a bit. I didnt realise until last night just how much though. It seems to have been building up since Christmas when losing so many friends hit me very hard - harder than I realised. A part of me feels guilty for still being here - I know its irrational but I cant help it. Last week NICE met to make their final decision in regard to the 4 KC drugs but they wont be announcing it until March and if positive it wont be implemented until the summer. How many more patients will die waiting and hoping they can last that long? And there is nothing I can do about it. I feel so impotent. The results of my CT scan are looming next Thursday and thats playing on my mind too.
Naively I thought I had completed my own cancer journey a while ago - I had been through all the stages and come out the other side. But as Caroline pointed out to me last night it doesnt work like that. It is an ongoing, movable feast and not something you ever really 'complete'. She also pointed out, quite rightly, that I dont have to be 'Superwoman' all the time. Its perfectly ok for me to feel a bit down and stressed - in fact I wouldnt be normal if I didnt. Im very lucky to have such a kind, caring, astute friend arn't I?
It wasnt all doom and gloom though and we had plenty to laugh about last night too - Catherine, bless her, offered to do my make up. And I accepted - with a few reservations. She made a really good job of it and I went out with a full face of slap on complete with glittery eyeshadow and false eyelashes. Now Ive never worn them before and it is a very peculiar feeling, every time you blink you feel them wafting away. My biggest fear was that one would become detached and slide down my face settling on my upper lip giving me the 'Adolph' look !
Today we are all going out for a meal later. Without the false eyelashes this time. Last night they looked very nice but Im not sure I could carry them off in daylight - especially now that Im 50 !

Monday, 12 January 2009

Kidney Cancer Support Network

When you are first diganosed with kidney cancer your world stands still and it can take quite a while to come to terms with it. Maybe even moreso than some other cancers because its rare and you can often feel isolated and alone - I know thats how I felt for a long time. It was ages before I met a fellow patient. The NICE demonstration was quite a relevation to me - for here were dozens of them gathered from all over the country ! It was an incredible feeling being able to chat to someone, lots of people in fact, who knew EXACTLY what you were going through. I think I speak for everyone when I say we all gathered such strength from that meeting.

This is why the internet is such a powerful tool - it enables us to make contact with others in the same position, to ask the kind of questions that dont get answered at hospital, to actually 'speak' to someone who has been through a particular course of treatment or had the same symptoms. Support from other patients is SO important - and so is support for carers who are often overlooked.

Until now the network on the internet has been a bit hit and miss with no one site really providing what patients and carers want or need. Now, thanks to the incredibly hard work of two patients and fellow campaigners, Rose and Andy, we have our own support network which will cover the whole of the UK. So ladies and gentlemen I give you....

Everyone is welcome - I would particularly like to invite my American and Canadian friends to join so we can learn from your experiences.

This is our network, our forum and it will only be as good as we make it. So lets make it the best.

A BIG thankyou to Rose and Andy for making this possible.