Fame and Fortune

Well, at last the Daily Mail article has been and gone so now I can sit back and relax. Overall I was pleased with the finished piece, although as expected there were several misquotes but none were too disastrous or misleading. One of my favourites was the "special phone" I apparently have for the transplant call. That would be my mobile phone then. Although to be fair it is quite a special phone - it has wee blue disco lights that flash when it rings (seriously). Anyway, on the whole the journalist did me justice and the facts about both CF and transplant were both accurate and informative; a rarity I imagine. I felt the issue about the lack of organ donors and the dire need for people to sign the register (and to discuss this decision with their family) came across strongly and I can only hope that by offering my own emotional experiences people will be moved enough to consider signing up themselves. What takes only a few minutes of your time could end up being the difference between life and death for someone else.

Following on from the article today, the CF trusts PR agency contacted me to say that a weekly magazine was interested in the story. I offered my apologies and said no, I wouldn't be able to do that. She then phoned back a few minutes later to say that the magazine wanted me to know that they would be very sensitive, would let me read the article first and would pay generously. I paused at the pay generously part and my pupils became like dancing cartoon pound signs. I decided to discuss the idea with some friends, Andrew and my mum before making a final decision. My friends wondered whether I would find it stressful, my mum knew I would find it stressful and Andrew asked "How much are they paying?" Clearly concerned about my health and well being then. I've decided to say I can't do it, as the lack of control over such an article would worry be senseless. However, more importantly, I feel that the story is not just about me; its also the story of my two sisters and their battle with CF. I have to be careful with those memories. They are precious; too precious to risk being misrepresented or tarnished just for the sake of a good magazine story.

Anyway, I can also do without the stress as my health is just struggling to get on an even keel at the moment. I mentioned in my last blog that I was due to finish my IVs on Friday but my chest decided to start playing the fool and I had several episodes of haemoptysis (coughing up blood) over the weekend. This is not uncommon in CF, because the chronic inflammation in the lungs can cause the blood vessels to become fragile and prone to bleeding. It is often associated with infection, so I had to continue the IV's over the weekend until the bleeding settled. It was much better by Monday so at the moment the doctors are assuming it was just a random event and I've now stopped the antibiotics (phew!) Unfortunately the breathlessness is still lingering on and I am now beginning to suspect it might be a long term thing, which I'm sure I will get used to. It has been stopping me getting out and about though, and that has been getting me a little down. Last week I tried to go to the garden centre one day and the pet shop another, with mum, but as soon as we got there I felt too breathless and wanted to come home. To help with this I am getting some portable oxygen cylinders that I can take out with me. At the moment I am only using oxygen overnight and occasionally during day if very breathless, but for the most part I don't need it and my oxygen levels are stable. The problem is that when I start walking, the lungs can't quite keep up with the increased oxygen demands and I become tired and breathless quickly - if I was wearing some portable oxygen it would hopefully allow me to keep going longer. I do not propose for one moment that I will be needing this all the time, but certainly at times of infection and in these recovery phases, that bit extra help might allow me some more freedom. The psychological aspect of going out with an oxygen cylinder and tubing on my nose is another issue, although to be honest, if it makes me feel less breathless when walking then I think I can live with the odd stare or two. Now I just need to ask my dad if he can fashion a small cart for the cylinder to go in, with an equally small dog harness at the front....

See.... I wasn't making it up!

Click here for daily mail article

Health, Seb and Daily Mail (again)

I have just been taking it easy since my last post, and trying to give the IVs a chance to work. I finish them on Friday and am looking forward to a long lie on Saturday morning. The daily grind of making up and administering the IVs three times a day becomes quite boring after two weeks, so when you finish them its feels like you have just gained all this spare time during the day! I think the IVs have cleared my chest up so that's good news, although I still feel more breathless than I did a couple of months ago. However this may well just be a new level I have to adjust to, but I will just go with the flow and see what transpires. I think I need a little more time off work though, just to get myself back on track and my energy levels up again, as the IVs themselves can be quite draining. Fortunately I have both mum and Seb to keep me entertained. For different reasons I might add (mum tends not to roll about on the furniture and run off with my slippers).

Speaking of staying entertained, I was experimenting my new camera earlier today in the garden trying to get a photo of a Blackbird who was gathering worms to feed his chicks. Yet again as I crept up the garden in my stealth like fashion, I became aware of someone following me. It was of course Seb who was keen to join the birdwatching and photography session and had come to investigate. When I turned round he looked away and tried to act all casual, as if he just happened to be coming up the garden anyway and was not at all interested in what I was doing.



I tried to ignore him and carried on with taking photos but was soon distracted by a scrabbling noise behind me. Seb had managed to clamber onto a large mound of earth which was piled in the corner, and had now sitting there with his "look at me, am I not clever?" face on. He then pretended not to be interested and stared off to the side, as if enjoying the view. However I knew whenever I turned my back he was watching me but would quickly look off to the side again if I dared turn round. If he isn't climbing on top of things, he is climing into them, like yesterday when I thought he had gone missing from the garden but he was in fact hiding in a hole, peering over the edge like it was a bunker and he was a wee soldier. He really is quite a disconcerting dog at times.



The journalist who wrote the mysterious disappearing Daily Mail article phoned today. She said it was common for papers to over commission articles which then don't get published, so she was looking for other avenues to explore. She had suggested some of the weekly magazines (you know the human interest type idea). As much of a snob as it made me sound, I had to say a definite and final NO to that idea. The CF trust had originally asked my to consider one such magazine but when I had looked up the most recent edition I found headlines such as "Help! My baby's brain is leaking!" and "My eyeball exploded". I just could not face this kind of approach. I don't mind trying to help raise some awareness but not at the expense of my life story being used as a sensational coffee break read. I suggested that the Daily Mail still may use the story for transplant week, which is 7th-14th July. She thought this was a great idea, and was going to contact them regarding this, so I will let you know if I hear anything else. Don't hold your breath though, because I won't be!

Long Time No Blog

I've not been feeling very well recently, hence the large pause in blogging. I thought last week it was just the after effects of my London trip (too much excitement and singing of Mary Poppin's songs all round). However by the end of last week I was feeling really breathless, having lots of chest pain and generally worrying even myself. I hung on until the end of the week, trying various experiments such as attempting to walk to end of road and back to 'evaluate breathlessness'. Sometimes I do the most stupid things. Anyway by the Thursday afternoon I realised that speaking in full sentences was becoming a bit uncomfortable and clearly any disruption to my ability to speak is an emergency situation. I was reviewed on Friday, and it was agreed that the original infection from last month was still lingering on, and had probably only been suppressed by the oral antibiotics (which at least had allowed me to got to the awards). I have now started a different IV combination and stayed in hospital over the weekend to get them started. Thankfully things seem to be moving in the right direction now, and I am feeling much less breathless already. By the end of next week its entirely possible I will be sprinting to the end of the road and back. There is nothing wrong with a little misplaced optimism at times.

A good friend of mine nominated me to receive a gift from the Chloe Janet Ball Trust. This trust was set up in memory of a young lady with CF and their aim is to bring enjoyment to the lives of people with CF. This could be a trip to the theatre, a lovely meal, a night at a hotel - something that will be enjoyable and memorable to the recipient. I was honoured and delighted to be nominated for this and I decided for my gift, to purchase a digital camera so that I could continue with my new found interest in taking photos of the birds in the garden. I felt this was something I could enjoy regardless of health status, and then after my transplant I will be able to venture further afield and maybe one day I will be blogging photos of my world wide travels. Before any of that however I need to learn how to work the damn thing. It has a lot of buttons - I can so far switch it on and pop the flash up, which is a useful start. I was going to read the manual, although my friend Fi kindly informed me that intelligent people do not read the manual, but work it out for themselves. I say intelligent people let their husbands work it out first, and then just ask them.

For those still wondering about the Daily Mail article - join the club. I did email the journalist, but it would appear she is freelance so doesn't know much more than anyone else. She was annoyed the article had not been printed and was going to contact me if it wasn't in last week, to discuss putting it in a different publication. However I have not heard anything, so am assuming it will just disappear into the ether, never to be seen again. Ah well, all that primping and preening for the photo shoot was a was a little pointless, although at least Seb seemed to enjoy himself. If I do hear anything else I will update my blog accordingly. Unless I see the article and the photo is really bad, in which case I will tell no one.

The Big Smoke

Well, I have just about recovered from my trip to London. We travelled down on the train, which was fairly relaxing but tiring all the same. On arriving late in the afternoon, we took a taxi straight to the hotel and got checked in. We were staying at the Hilton Metropole, which was a beautiful hotel, with fabulous views from both our rooms. That evening we had a lovely dinner in the hotel, before heading out to see Mary Poppins. The show lived up to all my expectations and more. The sets were absolutely amazing and the cast all so professional. Even Andrew enjoyed it, despite having been adamant that he didn't like musicals. I must admit it was hard not to sing along (although I did refrain). I may have to start using the word Supercalifragilisticexpialidocious in every day conversation though. Just for my own amusement. (I can't believe spell checked doesn't recognise it - I think I'll add it to my dictionary).

View from hotel bedroom

On the Thursday we met two of our old flat mates, who now live in London, for lunch. It was lovely to catch up. We had also hoped to do a little shopping on Oxford Street, but unfortunately I was feeling really breathless so we had to abandon that idea, and head back to the hotel. It was probably just as well, because we needed plenty time to rest up before the big night. Later in the afternoon I met my coordinator from the CF trust and she was able to take me down to the main room for a sneaky peek. The room looked beautiful - NEXT was one of the sponsors and had decorated the tables - black table cloths and red accessories. It was stunning. When we popped down, Gareth Gates was rehearsing his new single, which he performed on the evening. The coordinator asked if he would come over for a photo, and he kindly obliged. He seemed a very nice guy, although very shy and reserved. The coordinater took a couple of photos, and she asked Andrew to come over for one of them. You can imagine his joy at having his photo taken with Gareth. Not something he will be telling his friends about.

At this time the coordinator also gave me some gift bags from the sponsors of the evening. NEXT had made up a lovely selection of goodies, including a watch, perfume, sunglasses and lots of other treats, as well as giving us all gift vouchers. BT had provided all the nominees with two video phones, with a years subscription to use them. Now I will be able to see mum when I phone her. I am not sure what to say about that.

The evening itself was lovely, and we first enjoyed a beautiful meal before the awards ceremony started and had champagne in the room. I have to say, it must have been so difficult to choose winners in all the categories, as everyone was so deserving in their own way. Although it would have been the icing on the cake to have won my category, the competition was stiff and I lost to a very worthy candidate! To have even been short listed in the first instance was an achievement, and I really enjoyed being part of the evening. I didn't cringe too much when I saw my video clip, although I thought I looked a little serious. Luckily Seb was there to lighten the mood and I was so pleased he made it into the final cut. Celebrity wise, I met Toby Anstis, David Seamen, Amanda Lamb and Cleo Rocos. They were all very friendly and down to earth. Cleo Rocos was quite a character, and kept calling Andrew "Love-Pot". I have been throwing this into conversation since, although will have to be careful people don't start to think that it's my pet name for him.

Me and Toby Anstis

All in all, it was a great evening although a very tiring one. It was nice to be part of the experience, and to have a moment of fame on the big screen. I'm expecting some calls from acting agencies now - not for me, but for Seb. Famous, and he doesn't even know it.

NB: Andrew has just kindly pointed out that my title "The Big Smoke" makes it look like I'm a country hick who doesn't get out much. Charming.

Just back from London, so will update when less exhausted! Didn't win an award, but had a lovely time and enjoyed the experience.

This is just to let people know that the show will be aired on Five Life tomorrow (Saturday) at the earlier time of 7pm. The academic category is early on in the show - and the good news is that Seb made a wee appearance in my video clip. Mission accomplished.