Wednesday, 31 December 2008

Pins and Needles.........

When you get a call offering you a last minute cancellation for a CT scan you dont turn it down - even if it is on New Years Eve. So it was that at 12 I turned up at Selly Oak, still feeling queasy, and sat down in the waiting room to start drinking a jug of that vile contrast stuff. Ive realised its not just the taste that is awful, its the smell as well. Its a bit like a sweaty jock strap (yes I have smelled a few of those in my time). The temptation is to drink it as quickly as possible just to get it over with, but you have to drink it slowly, over an hour - its like torture.

This is the first time Ive been to Selly Oak for any of my treatment. Usually it is all carried out at the Queen Elizabeth where the Cancer Centre is. But Selly Oak is part of the same Trust so I guess it was inevitable I would end up there at some stage. Its also the hospital I worked at for 12 years and I was a bit nervous as I walked through the doors as a patient for the first time. I neednt have worried though - the place was so quiet, Ive never known it like that before. I dont think they expected many patients either because the place was FREEZING. Sat there wearing nothing but my sexy gown and socks (I wasnt going to take those off!) I was shivering. Can you believe the radiators were off? It was minus 3 outside and not much warmer in that waiting room.

Drinking the contrast was bad enough but there was worse to come. Ive often joked about my lack of veins since I had IL2 but the fact is its quite a serious problem now - as I found out. 3 doctors took nearly an hour and had 7 goes before eventually one managed to get a needle into a tiny vein on the back of my right hand. I felt like a pin cushion. And looked like one with bits of cotton wool stuck all over my arms. Because such a little vein is used when the dye is injected it STINGS like mad. I know these are minor discomforts in the grand scheme of things, numerous 'sharp scratchs' from the needles then the hot burning stinging going up my right arm while Im being scanned, but Im getting fed up of being hurt. The scan itself is no problem now. Im so used to lying in that noisy machine with a disembodied voice telling me when to breathe now, and its over in a few minutes.

So thats that now until I get the results, which wont be till 22nd Jan. when I next see Dr P. I felt a bit yukky after the scan, which is pretty normal, so spent the rest of the afternoon and most of the evening in bed - missing all the New Year celebrations. I dont really mind though - just waking up and it being 2009 is enough of a boost for me and Im starting to feel much brighter and more positive again.

So - whats in store for 2009 ? Well I have a BIG birthday coming up in a few weeks, and its Catherines 18th in February and I feel as if Im ready for another adventure. Not sure when or where yet or even how - there are so many places I would love to see.

Monday, 29 December 2008

Post Christmas Blues

I guess we all over do it at Christmas to one extent or another. I certainly did and Im paying for it now. Not in the eating and drinking department, in fact I ate very little and had only one glass of champagne, but in the cooking/cleaning/looking after everyone else department. Its not that I didnt have any help, Martin and the kids were great, all pitching in when required - but the kitchen is my natural domain as I love cooking so much and I spent most of Christmas Day and Boxing Day in it.
We had a couple of lovely days with family and friends but by Boxing Day evening I was feeling pretty awful - and looking it too according to Caroline.
On the Saturday morning I could hardly get out of bed - I was SO tired. Tired is maybe the wrong word - so totally and utterly exhausted I could hardly think straight is a better way of describing it. And more than a bit depressed.
This was most probably due to the fact that 3 of my KC 'friends' had died over Christmas - 2 on Christmas Eve and one on Christmas Day. Such a sad, poignant time of year to lose someone. The next day I was feeling just as bad, and the day after that so I just resigned myself to doing little and sleeping a lot.
The depression, or 'blues' - which is probably a better word because I recognise Im feeling a bit down, is almost certainly due to several things. Being so tired, hearing such sad news and being in the 3rd week of Sutent. I hate feeling like this, its so unlike me but I just cant seem to shake it off. So rather than trying to 'force' a recovery Im just going to be kind to myself, allow myself to feel a bit down and hopefully the fog will lift soon. Im sure it will. The trouble with me is that when Im feeling well I tend to charge all over the place doing things as I used to - and I cant do that any more. Not for long anyway. Its much better to do things slowly, at an even pace and Im starting to learn this !

New Years Eve tomorrow night - and I shall be tucked up in bed nice and early with a cup of hot chocolate so hopefully I can wake the next morning feeling much better and ready to face the New Year.
2009 - Who would have thought it ?!

Tuesday, 23 December 2008

Happy Christmas !!

I had an early Christmas present yesterday - and it will certainly be the best one Ive ever received. Oh yes you can keep your diamonds and fur coats and sports cars. Yesterday I was told by Dr P that the tumours he can feel are shrinking. All of them. By quite a lot. Which means I not only have stability but I now have shrinkage. Its almost too good to be true, I keep pinching myself to make sure Im not dreaming.
Im due a CT scan in a couple of weeks just to confirm this but as far as Im concerned the celebrations start now.

Christmas is a time to count your blessings and this year I have so many I dont know where to start. But its also a time to remember those who havnt been as lucky as I am, so on Christmas Day I shall be raising a glass to my friends who have died this year.....and also to all my friends who have supported and encouraged me. That will be quite a few glasses !

Happy Christmas everyone - and a very healthy New Year!!

Tuesday, 16 December 2008

Ubergruppenfurher Pancho

We first met Pancho, the entertainments organiser, on quiz night. He is Austrian with a very strong German accent and an admirable sense of duty.

It is his mission in life to get as many visitors involved in the entertainment programme as possible. Particularly Catherine and I apparently. He hunts us down at breakfast to see what our plans are for the day. A typical conversation will go like this.....

"Are you being lazy and lying around the pool all day again?"

"Yes Pancho...the sun is shining and we want to get a tan"

"You like shooting?.....with rifles?"

"Ermm no thanks"

"You like pool?"

"No we cant play"

"I will learn you"

"No thanks Pancho"

"It was not a question...It was an ORDER!!"

Ofcourse you have to imagine his heavy German accent to realise why Catherine and I were doubled up with laughter.

Tonight there is another quiz and we have promised faithfully to take be honest we dont dare not turn up...goodness knows what 'punishment' he would have lined up for us !

Last night when we were out for dinner we met a lovely couple from Bristol and ended up sitting next to them and talking all evening. Barbara, unaware of my health problems, was telling me about her sister who is currently fighting breast cancer. This made me think just how many families are affected by cancer right now. It seems just about everyone I talk to has a relative or close friend suffering from the disease in one form or another.

On Saturday I started cycle 9 of Sutent. Sometimes I cant quite believe how far I have come, especially when I think that this time last year I was lying in a hospital bed in Manchester having hallucinations !

This year Im lying on a sunbed in Fuerteventura hiding from an Austrian with a rifle !!

Sunday, 14 December 2008

Sunny Fuerteventura......

.........and it certainly is at the moment. We landed at 5pm and it was still 25 degrees, slightly different from the torrential freezing rain we left behind.

We first discovered Fuert about 10 years ago, the attraction being the beaches, which are fabulous, and the surf, which is 'pumping' Im told !

There is no doubt it is a beautiful island in its own way although pretty devoid of any vegetation due to the fact its volcanic. 10 years ago Fuert was really taking off as far as tourism is concerned. Due to its position just off the north African coast it has year round sunshine. New bright shiny apartments and villas were being built almost over night and a lot of British visitors saw this as a good investment opportunity. Although the development never reached the levels seen at Tenerife or Lanzarote it soon reached saturation point....after all there were still only limited flights from the UK. Fuert was holding its own and the bars and restaurants were doing well, although it was hard work. Then this year came the first of 3 blows to the tourist industry over here. XL Airlines went bust and recently RyanAir announced they would no longer be flying here after a disagreement with the Fuert Tourist Agency. So no more cut price flights. And then ofcourse the credit crunch which has hit everyone and the tourist industry everywhere very hard, and now the final blow .....the weak pound which is almost at parity with the Euro now.

Apartments and villas bought a few years ago are worth about a third of their purchase price, thats if they can be sold at all. All building has stopped with many developments left unfinished, just concrete shells. The lack of visitors now means bars and restaurants are closing and those that are still open are having to reduce their prices and fight for the few customers left.

It really is quiet and this is supposed to be one of Fuerts busier times, around Christmas. The place Catherine and I are staying has about 30 other visitors, and most of them are from Germany. Which is quite nice actually, it very peaceful here. Yesterday we spent the afternoon sun bathing around the pool which we had virtually to ourselves.

Apparently, according to Catherine, I've become a bit of a 'babe magnet'. Everywhere we go there will be some young man who wants to strike up a conversation with me. This would be very flattering but for the fact that its blatantly obvious why this is occuring. Catherine. In her lovely naive teenage way she has failed to realise that the easiest way to chat to a girl is to pay attention to her mother ! And boy does she get some attention. She doesnt even realise its happening but heads turn when she walks past with her glossy dark red hair and pale skin...she is completely oblivious of it and it makes me smile. Oh to be 17 again !

Last night in the bar there was a Music Quiz. 'Goodie' I thought, I can show off my encyclopaedic knowledge of 1980's disco and punk. No such luck, most of the questions were about up to date obscure dance music or R n B. So Catherine wiped the floor with the opposition and won a cocktail.
A very strong cocktail.
Which is probably why she is still fast asleep now !

Friday, 12 December 2008

A small price to pay

Im not quite sure where Ive got this new found confidence from - Ive never been a shrinking violet exactly but now Im finding myself going into meetings/interviews full of people Ive never met, walking up to them and introducing myself. Maybe its because Im so selfsure of the subject we are about to discuss or so determined that my voice, and that of other patients, will be heard.

The past 2 weeks have been full of such meetings - PCT patients committee meetings - and on Monday I met with a medical research company to be interviewed on the side effects of Sutent. I was especially pleased to take part in this. Much is made of the side effects, after all the treatment, although it isnt called chemo, is tantamount to chemotherapy in that the side effects are the same. And looking back over this blog I have moaned about them often enough !

But the fact of the matter remains, a fact I wished to reinforce with the pharmacutical companies, however unpleasant the side effects can be from time to time its a small price to pay. For what it the alternative? And apart from a few days over the past 9 months life has carried on pretty much as normal for me - just look at what Ive done, where Ive been. what I have achieved - and none of that would have been possible had I not been on Sutent.

In fact to put it very bluntly - I would be dead if it were not for Sutent - thats the bottom line.

Still, its encouraging to see the drug company who make Sutent are looking at the side effects, especially the long term ones, presumably with a view to 'tweaking' the drug in some way to reduce them.

The interview, which took over an hour, highlighted 2 things. That patients need to be fully informed of the possible side effects they may suffer and the fact they can be controlled and managed to a greater extent - and how fantastic (the interviewers words) I look right now. He also commented on my 'seemingly unshakeable' positive attitude - no matter what was thrown at me.

Ok - so I may have diarohhea, sore hands, cramps, and various other unpleasant visitors for part of each cycle but the fact is Im still alive. Like I said, its a small price to pay. And how lucky am I to have been funded for Sutent anyway.

Christmas is almost here, a time to look back and be thankful for everything the past year has brought you - and I have so much to be thankful for.

Tomorrow Catherine and I are off to Fuerteventura for a week - for some Mum and daughter time which I think is badly needed. Of all my children Catherine is the one who worries me most. At times she displays quite a lot of anger towards me - its something I understand completely. My own mother died when I was young and for ages after I felt so CROSS with her for leaving me. I think its a natural reaction but one that needs to be talked about and dealt with, hopefully she can recognise why she is feeling this way.

And it will be a nice week in the sun (hopefully) and a rest before Christmas really hits me when we get home !

I also start cycle 9 tomorrow - Im starting to feel an old hand at this now !

Wednesday, 3 December 2008

James, Gordon and me....

Say hello to my new boyfriend. Gorgeous isnt he? Unfortunately I was in the middle of a throng of about 200 other women who felt the same. It was obvious he only had eyes for me though !

For those who dont know the hunk on the left is James Martin, a celebrity chef, and he was one of the stars of The Good Food Show at the NEC where Martin and I spent all day on Sunday.We were there for over 6 hours wandering around all the food and drink stalls, demonstrations and exhibitions - I was in heaven. Gordon Ramsey was there as well but he was even more popular than my James, if thats possible, and I couldnt get anywhere near him.
Apparently some time during the morning it was decided that I would be driving home, although I have no recollection of this conversation, so Martin could indulge in the free samples of wine, beer, whiskey and liquers - which he did with great gusto.
Despite being right at the end of cycle 8 I felt surprisingly well and apart from being a little tired at the end of the day suffered no ill effects. Its strange how much better I feel now than earlier in this cycle. Mind you, seeing James could have something to do with that - he certainly seemed to 'perk' me up !