Lazy Hazy Days!!

Well I suppose mainly due the problems I’m having at the moment with both my chest and this sickness thing which incidentally is still causing me problems although it is a lot easier, I decided to have a do nothing, chill out weekend of total relaxation. I guess one of the factors in making this decision too was that my favourite TV Chef, Rick Stein was on all weekend on the food channel so it was to be a learning weekend too, Yeah Right!! Who am I trying to kid??? I can sit here and watch cooking programmes all day and night much to the annoyance of Judith at times. I may not try all the recipes on offer but have found some real gems along the way and lots of tips on doing things better etc so it doesn’t all go to waste.

Can I take this opportunity to say big CONGRATULATIONS to Sarah and Sheri in their new posts on the ward. I’m sure their valuable experience will come in handy when helping patients and relatives through this. I’m so pleased it’s them too as they are great and really approachable too. Penelope, I’m sure you are so happy too. Making steps towards a smoother journey. Missing you all on the ward too, although not envying you in that heat. Are the air conditioners working as well as they are in the day unit NOT??? I’m quite sure it will only be a matter of time before I will darken your doorstep once again so make the most of the good times!!!!

I’m beginning to think that this stomach thing maybe something like trapped wind. Sometimes when this wave of pain starts it results in a burp (Or the other end) and the pain goes away. I know I do apologise if you’re trying to eat your supper at this time but you have been warned about these outbursts before haven’t you?? It’s nowhere near as bad as it was so things are looking up but that in itself makes it more annoying as I will always wonder what it was and what caused it Grrrrrrr!!!!!!

PUVA today was a laugh!! They have decided to close one of the car parks next to the one I use at Glamorgan House which results in 50 odd less available spaces. So parking was a nightmare. Thankfully Tara came with me as we were going to go food shopping afterwards, so I waited till 5 mins to then go and parked in the main out patient’s car park and got Tara to push me in the chair back to Glamorgan House. I’m up to a whole 1 minute and 40 seconds now, aren’t you impressed??? I can actually feel the heat coming from the tubes whereas up till now it seemed by the time the tubes had warmed up it was time for them to go off. My skin was not so bad over the last few days, as in not as itchy which is always a good thing. I suppose with being pushed around a lot more now that I’ve got my little helper to come around with me, I cant tell really whether my skin is tighter or looser for that matter, as I’m not walking around as much which is when I would notice it most. Maybe I’ll have to go for a walk around the block to see, YEAH RIGHT!!!!!!!

Quite busy hospital wise this week. A couple of PUVA sessions and a mammoth day at the dental school too. They are going to fit another tooth to my bottom denture so I have to go first for an appointment at 9am then I have to back again at 4pm to finally fit it properly as in fine tune it ect… I guess the benefit of this is that along with Tara I’m going to use this time in between for some vital Retail Therapy and possibly a visit to a certain somebody. Somewhere.

I’ll leave you all guessing who will have the great honour of allowing me to visit with them, one thing I guess though is , Peter I think you might be safe as I don’t think I would make it there and back in time Ha Ha Ha!!!

Right that’s enough I’m off to work on tomorrows recipe Lancashire Hotpot Mmmmm

See Ya!!

What A Strange Day!!

I woke up this morning, well lets rephrase that, I was woken by Tara at 10.30 reminding me that I had said that we would trek into Cardiff this morning to do a bit of shopping, which to be honesty is slowly becoming my favourite activity, what am I like, a right old woman???? I was fine until I made my way downstairs and it seemed all of sudden I was having a strange pain in my stomach. It only lasted a couple of minutes at first then it just stopped. I felt quite queasy at the time too. Anyhow as it went I decided that we would still go and I started taking all my pills and potions in readiness and set about the mammoth task of putting on all the creams and then getting dressed. I wish someone would invent a machine that applies all the creams and maybe even dresses you too it would make things so much easier for me, any ideas???

Right off we set on the road to the Big City. The plan was to go to one of the well established Boot Sales then into town for some retail therapy, but mainly to get into the Local market to get some of the Delicious Stir-Fry’s that one particular butcher makes that are out of this world. We’d only been gone about 10 minutes or so and this pain and queasiness had come back. It sort seemed to come on like a wave of pain if you can understand what I mean. I came up to the roundabout and decided that it might be a wise idea to miss going to Cardiff today because of this and turned around the roundabout and headed off back home. Well if I did, as soon as the pain had come on it disappeared again. I got a couple of hundreds of yards up the road and did a u turn, stuff it I thought I’m gonna take the amble and go anyhow. It weird, as it hasn’t caused much more pain or annoyance till this evening now it’s starting again. Maybe it’s just a bit of indigestion or wind or something, we’ll see what it’s like tomorrow. I don’t like new pains as they can be worrying as I don’t know what they are.

The boot sale was pretty good with a good turn out as the weather was just right, quite warm but not full on blaring sunshine just right for my condition. I quite like boot sales, I guess it’s the whole thought of getting “A Bargain” which appeals to me as well as the bartering etc too, and last but by no means least the obligatory downing of a lovely greasy Bacon & Mushroom Roll washed down with a Stand your spoon in Coffee, there’s nothing quite like it. I wasn’t convinced to part with any other money however which is quite good for me too. Off into the town centre then in search of the elusive empty Disabled Parking Bay. There are a number spread around town and I tried them all. I got to the last one and was beginning to think about having to go in one of the Multi Story’s when I came across an empty one. Yipeee!!!! I do like the idea of parking in the town centre for nothing it’s my 2 fingers up to the local council who rip you off at any given chance. Ha Ha Ha!! We headed off to the indoor market to get the meat and stuff. This involves walking through the Fish Hall which has the strongest aroma of fish you can ever imagine, it absolutely stinks to high heaven and not for the faint hearted or those with dodgy stomachs. Well I took a deep breath and ordered the engine (Tara) to break all land speed records and run like hell as fast as possible which she gladly did as she cant stand the smell of fish at all. If I had hair it would have been ripped from its roots, she went so fast Ha Ha, problem was the stopping distance at that speed is quite long and we nearly ended up smashing into a huge neatly piled display of apples but thankfully she managed to steer clear at the last minute, Phew!!! Well after buying up a freezer full of various forms of meats and stuff we headed off around some of the shops in search of bargains. Tara as usual felt strong urges to go in every shoe shop that we passed as she just can’t help it. I on the other hand just felt the urge to go in EVERY SHOP!!!!! Well you’ll be impressed I never spent anything else at all which really is unusual for me. I just wasn’t tempted by anything at all. Never mind there’s always next time.

Well safely back home and time for a nap to recover except my stomach was playing up again, it was sort of coming and going again what a pain in the arse. Never mind maybe a good old belch will do the trick, where did I put that Andrews??????

Right I’m off See Ya!!

Oopps, Has It Really Been That Long??

Time seems to have flown by and I didn’t realise it’s been over a week now since I last blogged. That’s just not good enough jonny Boy!!!!

Since getting back from Bonnie Scotland I have felt a bit run down both Mentally and Physically too which I was half expecting as the whole wedding weekend was going to be quite demanding. I’ve had a strange week of up’s and down’s physically. I had a bit of a cold on the weekend but thankfully it never developed into a fever but since it has left me quite a wheezy chest and coughing up lots of nice specimens for the micro-biologist to take a look at. Merlin had put me on one of his favoured potions consisting of Augmentin Twice a day which has worked for other previous nasties I have developed and it’s just a case of waiting to see if they manage to find any baddies.

I’ll tell you what's annoying me at the moment most of all though is that going on past experiences my chest and therefore general health and fitness have been worse in the winter months and better during the summer, warmer months. So I had every intention of using these warmer months to try and build up my strength and stamina etc in readiness for getting through the next winter. Sadly though it hasn’t worked out like that because of the dodgy chest all the time and the blinking GVHD which is seriously hampering my recovery and fitness so all these illusions of me being some sort of Arnold Swarzenegger character going into next year are sadly just pipe dreams. So come the start of winter I will be in no better shape than before and as a result will probably suffer as much as before as in visits into taste the food at Heath Towers.

This warm weather is quite nice although it has been a bit too hot for my liking I would still prefer this to rain any day of the week. Due to the PUVA I have to keep out of the sun which suits me fine.

Went to see The Wizard earlier in the week but nothing exciting to report unless you consider upping my dose of Cyclosporine to 75mg B/D. This in itself I suppose is fairly interesting as I can’t remember at what dosage of cyclosporine that its starts to make me physically sick. I know it’s around 100 odd mg’s but not too sure what. His intentions are to get me up 150mg B/D so it’s just a matter of time I guess before it starts. That’s something to look forward too isn’t it? I know it took ages and ages to get an anti sickness pill that worked last time so I guess I’m up some more rocky roads soon, better get all them steaks in now because its strictly soup when that lot starts.

Oh yes!! The cars going well in fact it’s going very very well indeed. It is a heavy old beast and it certainly wouldn’t go down well on a drag strip but it suits me to a tee as in its in no hurry to get anywhere, I enjoy the views along the way, it’s very lazy and changes gears when it wants too to conserve energy much like myself too, and not least of all it’s absolutely drop dead gorgous, just like myself I hear you all cry!!!! No no!!!You can stop crying now!!! Oh yes and it’s a very modest car again like yours truly!!!! So you see it was a very wise choice on my part to get it as we are truly a match made in heaven.

Right off to dirty some dishes out the kitchen by covering them with food and eating it all off, you wanna try it!! You can make a real mess sometimes if you try real hard!!!

See Ya!!

You Like??
well do you like my new bestest friend. She's a real stunner don't you think?? I finally got round to taking a piccy or 2 today after giving her, her first pampering session down at the local Drive Thru Car Wash.

My chest has decided to play up a little today for some reason which is annoying as it's been fine for a while now. I guess i can't have it all good can I?? It's not causing too much trouble just Wheezy and Ratly you know the sort i'm on about that no ammount of coughing seems to clear that annoying little rattle in the back of your throat. Skins not too bad today though. Still tight but not as itchy so maybe things are starting to work. Who Knows??

I think i might go out visiting tommorow so all those within driving distance you have been warned if you hear the door bell ring it might just be your worst nightmare come true when i decend on you and eat up all your food and leave you feeling Pillaged.

Right off to take the next round of pills and potions, you can carry on talking to yourself if you like just keep the noise down alright because i may have a pre-bed snooze after the pills.

See Ya!!

A Good Time Was Had By All!!

Hi there pop pickers!! I’m back from my epic journey to the land of the skirt wearing man, Scotland.

It seemed quite strange as I’ve been so looking forward to this weekend for the last 2 years and then suddenly it’s here and it’s also gone so quick too. This has been my only allowable long term plan I have allowed myself as I found that every time I have planned anything I usually end up being ill and in hospital so I have shall we say, much smaller goals but to be honest even they have failed to be achieved due to the nature of this beast.

We had decided to set off around 5am on Friday to drive up so I thought I would try and go to bed around 8pm to at least get a couple of hours sleep in readiness. Well what a waste of time that was!! I just lay there wide awake till 4am then I had to get up and take my pills and get ready to leave. We had quite a good run up there with no hold ups at all. We made the 350 odd mile trip in 6 hours including 4 stops on the way which was pretty good.

The Hotel was quite nice and I think what really made the difference was that they had completely taken over the hotel for the weekend so it made it feel a lot more friendly and personal somehow.

I wasn’t quite in the best of health, well not as good as I would have liked to be anyhow. I suppose it was a lot to expect myself to do and it resulted in me getting quite tired and worn out easily. The whole wedding experience was something special and I wouldn’t have missed it for the world apart from the minor point of the weather. The ceremony itself was held outside on the lawn and sadly just as it started the heavens opened and I had to make a mad dash, or rather Judith had to push me at full speed back into the hotel porch to watch the remainder of the ceremony in the dry. I must say that I was devastated. After all I had managed to survive the last 2 years to enable me to achieve this goal of getting there and the bloody rain had to come and trip me up at the last hurdle. This put a bit of a dampener on the proceeding afterwards and I ended up getting quite emotional later on when the flood gates opened. it was nice to catch up with the rest of the outlaws too as they are all spread out so we don’t see a lot of each other.

The trip back was about the same as going up only that it took ½ hour longer due to them deciding as usual to move some huge digger thing taking up 2 lanes on the M6 on a busy Sunday afternoon.

I was absolutely knackered when we got home. I suppose it will take a few days now to recover from the week end and thankfully I have a quiet week as far as hospital visits go. I had a PUVA session yesterday morning which in some ways I could have done without as I was missing some much needed sleep and I don’t have anything else now till Friday when I have another PUVA session. I’m up to a staggering 1 minute 12 seconds now. It’s actually beginning to do something, well I think it might be anyhow. The itchiness seems to be very very very slightly less than before however the tightness is no different at all which is annoying. The nurse was saying that I should be starting to see some changes real soon so I hope she’s right as I could do with a break now.

Believe it or not I still haven’t managed to take any pictures of my new limo. I had every intention of doing so when we were away but I kept waiting for the sun to come out so it would show it off to perfection bud sadly it never came out all weekend so I never got to take any. I will try and get some done this week as according to the weather man we are in for some good weather this week, although I will have to go get it washed first as it’s looking a bit dirty after the trip. I’ll also had to get round to posting some piccy’s of the happy event too. She looked really special in her dress, yikes that must be my Sis’s hormones kicking in. I’m Off!!!!

See Ya!!

I Had To Do It!!

I had a wonderful day yesterday. The weather was not too good when I got up, all damp and drizzly but I felt really well which is much more important. I had planned a trip up to my mothers in the morning for a natter. Well to be honest I made up some feebly excuse about not having seen my brother and the children for ages and he goes up there on Sunday mornings when I was really going to show off the new car. Ha Ha Ha!! Thankfully as the day wore on the weather did get a bit brighter and actually ended the day very nice indeed. It was nice to my brother again as I suppose out of all of my family I see him the least so we had a lot to catch up on mainly about cars and bikes etc which dad gets into as well. Mum was taken with the car too. She went for a joy ride with Adrian’s children, only down the road a little and she was very impressed so much so that she wanted one but sadly she wont be able to fit the scooter in the boot so that’s out the question. After a bite to eat I took a leisurely drive back home and chilled out in front of the telly most of the night.

Up bright and early this morning due to PUVA appointment then over to see the Wizard afterwards. To be honest I didn’t feel too well. I felt really quite sickly and very lethargic. I managed to get my tablets down and used up the remaining 40 mins spare before leaving by sleeping a bit more. This seemed to help a little as by the time I was half way into hospital I felt fine.

Good news!! I’ve now passed the one minute barrier in the Tardis, in fact I was in there for one minute and 3 seconds WOW!!!! Apart from saying that it passed off with no hitches or in fact anything to say about it at all good or bad, that’s boring!!!

Off to see the Wizard next. After the usual wait for him to arrive which he always seems to turn up late, in we went second which is unusual as he always sees me first. Maybe he’s not my friend anymore??? We went through the usual stuff what’s been happenening? What drugs am I taking or not? Etc etc… he had some news from the Specialist at Brompton Hospital, you know the one about the Heart and Lung Transplant guy?? Sadly it’s not very positive at all. What he has said is a number of things. They will not usually even think of doing the procedure until you have been 5 years Cancer Free so that rules it out for a while yet on its own. Next because of the Colonisation with Pseudomonas they would see that as too much of a risk so because of this in general terms they would not consider me for the Heart and Lung Transplant in the future which is not good news really.

I know it’s not good news but my attitude is at least I know now and we can set about finding other ways of maybe dealing with the long term problems with my Chest and Heart.

Besides all that, I STILL GOT MY NEW CAR TO PLAY WITH!!!!!!!!!!

See Ya!!

I Never Touched It honest!!

It seems to have been another good day today. Weather has been nice and hot and I seem to be not so bad physically as in not much pain and itchiness. I suppose you were all waiting to read all about the places I have been in the new motor today but I’m sorry to disappoint you all as I haven’t been anywhere near it all day. There was no reason for it other than I didn’t have anywhere planned to go and just didn’t fancy driving around for the sake of it. I did however take every opportunity to look and admire it from the window and was quite tempted at one point to go and sit in it and play around with the stereo and stuff but I thought that would be really sad. I’m planning to take it to show off to my mum and dad and brother tomorrow morning. It’s been ages since I last saw my brother so that will be nice catching up on all the latest gossip and stuff and I’ll probably get to see his kids who incidentally I have seen only once for about 15 minutes a long time ago which is quite a strange feeling. Maybe I will write explaining why this is at a later date but for now I’d rather not drag up all that stuff again, I hope you don’t mind???

Just think this time next week I will be in sunny Scotland, probably sizzled after one too many toasts at the reception and desperately in need of a bit of sleep before the night time shin dig. I’m really looking forward to this time away which I think we all need really, I’m even looking forward to the horrendously long drive up there too which is all part of the experience. We intend to take our time and stop several times on the way as well as sharing the driving too which will help.

I’ve not got too many appointments planned for this week which is a bonus. In fact I think it is only PUVA & The Wizard on Monday then I have the rest of the week off, cool!!!!! No doubt I will have a few trips into Tesco’s just to give me something to do and I have to get used to the car obviously ready for the trip so that will kill 2 birds with 1 stone won’t it??

Right I’m off to celebrate poor old England being ceremoniously kicked out of the world cup by Portugal. I must admit though going out on penalties is really cruel but in saying that the Portuguese goal keeper did save 4 out of the 6 which is an astounding thing so they did deserve it.

See Ya!!