Monday 29 December 2008

A belated Happy Christmas

Dear All,

I realise I have been shit once again about writing my blog. Basically everything is fine, not in official remission yet. Had a check up on the 17th Dec, next one is in Feb. Will do a longer blog very soon, I promise!

I hope everyone had a wonderful Christmas, as I did. (and managed NOT to put on any weight, woop woop!!!) And that 2009 is fantastic for you all.

Until next time (very soon!)

Lots of love, laughter and smiles,

XXX

Wednesday 29 October 2008

I've had man flu and survived!

Dear All,

I know it’s been a while since I sat down and spent some real time blogging, I thought that whilst I’m at work with absolutely NOTHING to do, (oh the joys of being a temp!) and clock watching pretty much from the moment I arrive until the moment I leave, it slowly dawned on me that this is a good time to update you all on what’s been going on! It also looks like I have stuff to do!

So ummm, yes. Where to begin? It’s tricky because I could track back to when I left uni and tell you all that’s been going on properly, but lets face it, that’s about 4 months, and although I have bugger all else to do, it could quite possibly take me all day to do that, and I doubt you all want a few thousand words to read!

On that note, I have started to write ‘my story’…have I mentioned this before?? If yes, forgive me, forget I’ve mentioned it and enjoy reading about it as if it’s the first time. If no, good! So yes, my story. I think I need to come up with a better name than that, but that involves far to much brain power at the mo. (Temping seems to eradicate brain cells daily, I think it’s the dire boredom!) I admittedly haven’t written anything for a while, but at my last word count I think I was up to about 8,000 and I hadn’t even finished the first day! I bet everyone’s really excited about reading it!! I don’t know if I’ll try and get it published, or if I’ll just keep it as a therapeutic thing, or as a diary type thing. What do you reckon??? Do you think that people would be interested in the written ramblings of a 23 year old about an interesting little blip in her health? Feel free to let me know!

As mentioned I am temping at the mo…finally!! It took a while before I got any work. I think all the students who were on holiday and college people had stolen all the work going…bastards! It started slowly, a couple of days here and there and have been in the same job since the end of September which I suppose is nice…..but it’s rather boring and the pay isn’t that great. But it’s better than nothing, so I continue to come in and be busy for about 2 hours of the day and try and string everything out for as long as possible. I have come to the conclusion that because I have had such a good work ethic drilled into me, when I’m asked to do something I do it straight away, and don’t muck around. Due to this I’m more efficient that some, and therefore do everything much faster, meaning I spend a lot of the time pretending to be busy. I would obviously ask to do more stuff if I could, but I’m working at the local hospital (ha ha ha!!) and my job it to ring bank staff to cover shifts. Once I’ve rung them all and got their availability and booked them in, there’s nothing for me to do. So I play a lot of solitaire and muck around on line. I did feel a bit bad in the beginning as they are paying me to do nothing for I’d say a day and a half, but I suppose when I am needed I’m here and get things sorted. Also they pay me less than 7 pounds an hour, which makes me even less bothered!! On the plus side, I finish at 4.30 (down side, only half an hour for lunch), they are very chilled about me having days off…I have social stuff booked in, and when I get tired they are happy for me to chill out. I also have an arrangement that I can come in a couple of hours later on Wed morning if I think I need the extra sleep, and they are extremely grateful that I am here, which makes it all ok! I was only meant to be here for 2 days at the end of Sept, and then someone was going to start doing what I do as a full time permanent member of staff, but they pulled out, so I’m still here! I’m leaving on the 21st Nov as I need to get a job lined up and a flat in London for when I make the big, scary but very exciting move in Jan. On that note, anyone know anyone who needs to employ someone in the new year??? Or anyone with a nice room going spare in as central London as possible??? Preferably for about a fiver a week?? No….bugger, cardboard box outside Sloane Square tube it is!

On the job front I have found a job at Macmillan Cancer that I would quite like! It’s PA/Team Assistant in Vauxhall. I reckon I’d be pretty good at that, and the salary isn’t too bad (£23,000) which means that I would have an ok amount to spend on rent/bills and of course nice healthy food! Especially as I’m still not drinking!! (Nearly 5 months, how proud are you of me?!?!!) So need to get that job application in by Tuesday. So I demand that all of you have your fingers and toes crossed with that! (Enjoy doing anything whilst like that!)

I feel that this might be a bit boring for you all, but I shall continue anyways! That’s the joy of sitting here and typing, I can do and say what I want, ha ha HA!

Ok, so weekend before last I went to a weekend arranged by Teenage Cancer Trust (google that if you want to find out more about them. They are truly wonderful! I would do a donations plug, but I shall leave that till later!) I had a great weekend hanging out with other cancer kids, although most of the people in their late teens/early 20s are all better now which is nice, because you can hear their story and not be like, fuck you might die, or need more hard core treatment etc cause they have been through it and come out the other side. It’s also fired me up to get involved even though I’m not completely out of the woods yet and help others who have just been diagnosed etc to get them in a really positive state of mind, and that being diagnosed is not a death sentence and that eating as healthily as possible all helps. This of course is also tied in with my wanting to work for Macmillan….as even as an admin person I reckon I could help, as I don’t want to go back to uni and train as a social worker or support nurse etc. It was also a great weekend cause no one could believe I am still going through treatment as I look so good!! I enjoyed all the compliments!! It also meant that I got to spend the weekend with a girl I met when I went to the launch of the cancer forum in Scotland last year. I can’t remember if I mentioned her? She’s called Hannah and had a tumour in her lung which due to a long story meant that she had to have her whole lung removed!! Anyways, she is great and it was great (how many times can I use that?!?! Really need to widen my vocabulary!) to spend some proper time with her. We are now officially buddies! Although she has bullied me into agreeing to run the Great Northern Run next year, so I’m afraid I shall be harassing you all for money…..again….and Milo is going to run the Athens Marathon possibly next year, or the year after, so you’ll get a double whammy of donations harassment! Bet you’re all REALLY excited about that! On the subject of my half marathon run, I reckon that if Hannah can do it with one lung, I should be fine! I am going to check with my consultant first though…

So what else?? Next check up in December should be fun! Oh, I should probably elaborate on my seriously short post from last time! Yes, the bone marrow was clear of Leukaemia, which was very exciting! I made at least one friend cry…and he’s male, ha ha ha! And there were a few others who got a bit emotional. The main response was WOO YOU’RE BETTER!! …I’m afraid to say that answer to that is not quite. All the counts were good, platelets still behaving themselves at 101. The Leukaemic rate was at 0.17%, basically the same as last time, this bugger has to get down though. Hopefully as the bone marrow is no longer producing the Leukaemic cells, the rate will drop and stay down! When these have stayed the same for 2 years, I’ll be taken off the drugs and see how it goes. They say that many people have to go back on the chemo, but I know I’ll be different and won’t have to. So although I’m really happy it’s all going so well, in 2 years time when I get the ‘all clear’ (it’s in inverted comers as far as the hospital are concerned, I know it will be the ALL CLEAR!) is when I’ll be fucking ecstatic!

One last thing before I go as I’ve written nearly 2,600 words (you can see how I’ve written so much of my book can’t you! Once I start I just can’t stop! It’s a bit like Pringles, but not quite…) I have officially had man flu, and survived!! I have had the seriously nasty cold/virus thing that’s been going around. Not only did it have the usual cold things…sore throat, blocked up nose etc. I also had a quite impressive temperature, and it attacked the right hand side of my face. My gland was so swollen, as was my cheek, it was really attractive, so of course I got sent to the local hospital for a blood test. It’s because they are paranoid about infection. As this is the first major cold I’ve had in ages, I wasn’t worried at all. I’m assuming the results were fine as they didn’t bother to ring and tell me. It really pisses me off. I have to get out of bed, go to the doctor, then go to the hospital and make the effort. Why can’t they take 30 seconds to ring and say, don’t worry, the results are fine…grrrr. Anyways, as it wasn’t real flu and not just a cold, it must have been man flu as man flu is so much worse than a cold! And I survived with very little moaning and ‘woe is me’ blah blah blah. So boys, be warned, I know what it’s like! And survived it easily!

Well I really think I should bugger off, this is close to 2,000 words, and it’s nearly lunch time! It’s helped while away the morning, alongside the odd phone call to sort out the two shifts needed today on one of the wards. Oh, if anyone who reads this is a nurse, or health care assistant, and wants some work on wards with elderly people with mental health problems, please be in touch! The wards are in a little unit by the main hospital in Colchester.

So until next time dear readers, when I shall be free of this job, and hopefully lined up with the next, I shall bugger off, and think of what I’m going to put in my job application personal statement bit this afternoon!

Hope all is well with everyone, and wrap up warm as it’s suddenly pretty fucking cold!

Lots of love, laughter and smiles,

XXX

Thursday 16 October 2008

Very exciting stuff once again!

A seriously quick blog, shall expand on it soon.


Most recent bone marrow resutls.....NO LEUKAEMIA IN IT!!! WOOP WOOP!!

So basically I'm nearly in full blown remission!!

Lots of love, laughter and smiles,

XXX

Tuesday 16 September 2008

I forgot...

I also forgot to mention in the last blog that my platlets have gone up to 122, woop woop!!! They are finally begining to behave themselves!!

More news I guess after next check up mid October.

XXX

Thursday 4 September 2008

Leukemic rate of 0.16%!!!

Well my faithful little blogletts,

As you may have noticed when coming to have a look at my recent post I have managed to get a picture onto this site, woop woop!! Not sure why I had such troubles before, it was really simple!

I do realise that I have been rather crap recently at blogging, the days and months seem to fly by! It terrifies me how it goes by so quickly when I have done absolutely fuck all this summer! Tomorrow I will have done my third day of work since leaving uni! 3 whole days of work since June how good am I??!! So yes, my plan of temping all summer, save money and move to London by November hasn't exactly happened. The summer it would appear is a shit time to temp, in as much as there about about 50 trillion students and graduates all after the same 5 jobs. I'm hoping it will start to pick up, or I'm going to have to start selling drugs! I'm hoping that as I got a score of excellent in my data entry test in Adecco temping agency in Colchester (and then have the 2 guys who work there take the piss out of me, making out that I have no life and spend all my time practising data entry...they are charming! And obviously act in a highly professional way with their new employees!!) a extremely highly paid, yet boring data entry job will come up where they need someone til Christmas and then I'm sorted. Also if any of you know someone who needs a new member of staff in Jan, tell them about me!!!!

So job beg over I shall move onto health stuff.

Well it's all fucking brilliant really!! (I'm swearing twice as much as I haven't posted in a while, need to keep the swearing quota average up!) I had a letter in the post last week from my consultant, very kind of her! To tell me that the Leukemic rate had dropped again from 0.50% to 0.16% WOOP FUCKING WOOP!!!!

I had another check up at the beginning of this week so will know the results either at my next check up in October or might get another surprise letter in the post! I also knew that I was due a bone marrow test, so mentioned this in the check up. Instead of being told to book one in for the next week or two, my consultant said 'Aah yes. Are you around for the half an hour or so?' (I thought I was going to be picking up a new prescription which would have taken about an hour) so replied 'yup'. She said 'Good, you can have it now, just wait for the doctor to grab you!'. Oh good!!! So off I went to have the bone marrow test.

As I had had one before I knew what to expect, and once again the most painful bit was the anaesthetic. The rest felt odd, but didn't hurt. It feels a bit like when you bang your funny bone, not the immediate pain, but the odd ache afterwards. Also when the needle when through the bone wall my right leg shot out, the needle must have hit a nerve. Was very odd and made me laugh, as my body was doing things that I wasn't telling it to do, but rather what the needle told it to do when hitting nerves...ODD! The results from that take a couple of weeks to be processed.

What else, hmmm...oh, I also have a rather interesting moment getting more of my drugs, because Scotland and England are different (as you are constantly reminded by the Scots!) and have different NHS's etc there was almost a rather funny (well not really) incident. My consultant went to write out the prescription in the standard way, until I pointed out that the Hammersmith have never perscribed it, I'd only had it from Edinburgh. To which professor Apperley said 'Oh!'. She's had to apply to my local PCT (for those of you unschooled in the language of medicine, and shame on you for not knowing!! Ha ha ha! PCT stands for Primary Care Trust and they decide who gets their drugs paid for and who doesn't.) So I had my fingers crossed for a little bit on Monday praying they would agree to pay for the drugs. I had a good argument though, as Edinburgh paid for them no questions asked, my local PCT should honour that and carry on paying, and I do believe that they will. Thank god!! As I don't know how much these ones cost, but the last cost £24,000 a year, and I don't have that kind of money!! Once again, any donations to the 'I'm seriously poor fund' are kindly accepted.

What else, hmm, have to go in a minute, but shall carry on manically typing til I have to run get in my little broom broom and go to the gym.

I have a plan of what to do with my life, very exciting, don't know if I've mentioned it already.

I'm going to learn Arabic. If the hospital say I can go, I'm going to go to Jordan for a month to do an intensive, learn the basics course. Then either go to Egypt for a year, or go to the American School in Beirut (not sure how you spell that one, should probably find out!). And at the moment I want to go into Islamic Art. Not sure what part, maybe insurance, or buying and selling, or looking after someones collection etc. But knowing the language and really absorbing myself into their culture will teach me the right way to go about business deals etc etc

So ummm, I think that's about it. I'm also writing my story as it were. Don't know if I'll try to get it published or what, but I thought it would be a good thing to do. I also want to get involved with teens and early 20 year olds who get diagnosed with cancer to show them and help them realise that it's not a death sentence, and that by being happy and up beat you can help beat it, as I have. I know that so much of my getting better has been to do with my Mummy, and all the research she has done into alternative therapies and food to not eat(like dairy, refined sugar and caffine, all proven that cancer cells feed off them) and foods to eat (fresh raw veg, manuka honey, wheatgrass etc etc etc) have helped enormously. I also think that at this point I should give myself some credit and acknowledge the fact that I've been fucking brilliant, and that by doing some seriously good head work, and by not letting the cancer get to me, and by getting on with life and keeping happy, I have done a lot to get the cancer to fuck off!

So on that note, I'm going to bugger off to the gym as I HAVE to tidy my room later and it's going to take HOURS!!! So the sooner I go, the sooner I get back!!

So much love, laughter and smiles as always,

XXX

Monday 21 July 2008

VERY VERY EXCITING NEWS!

Dear all faithful bloggers, today is a day we have waited for!


VERY VERY VERY exciting health news!

My Leukaemic rate today was 0.5%. In 2 months it has come down to that from 4%. The hospital were amazed! I am at least 3 months ahead of what they would expect with the drug treatment schedule. (I think quite a bit of it, is to do with the fact that I gave up alcohol at the begining of July....) So that's amazing. The best news is yet to come....Out of 3 different things (I forget what they are called) I'm in remission for 2 of them. I need to have the leukaemic rate at around 0.02% and have only 1 leukaemic cell out of one million white cells for two years and they will take me off the chemo!! WOOP WOOP!!!! They said that only 5% stay in that state of remission without drugs...2 in a hundred. My answer to that was, I'm not meant to have what I have, so why can't I be one of the 2???? The consultant did say fair point to that! Also I know that with all the alternative stuff I'm doing, that I'm going to be one of the 5%. So I'm basically nearlty half way of this interesting little journey in my life, as I was diagnosed 18 months ago, and because I'm at least 3 months ahead of the game!!

FUCKING BRILLIANT STUFF!!!

More stuff about other stuff another time!

(next check up in 6 weeks)

So much love, laughter and smiles!

XXX

Thursday 12 June 2008

Happy day!!

Well my fellow bloglets happy news is to hand, the parentals have FINALLY got the wireless router installed which means...you've got it, I can use my laptop and sign in and blog! Woop!! (Sorry if any of you thought the happy day was cancer related...in my mind, this is far more exciting than anything the hospital could say!)

I have also come to the conclusion that I can't sign in on the retals laptops because they are running Internet explorer from the dark ages, facebook tole me that! Aren't they a clever bunch at facebook. Not only do I get twitchy and rather like a crack head who has had their supply taken away if I can't check facebook at least twice a day, they also tell you when you need to update Internet explorer! I use mozilla which updates itself all the time...this is getting rather dull, shall stop rambling on about Internet explorer an mozilla....

Ok, so what's new. I drove home a couple of weeks ago, actually thinking about it, more like a month ago, where is the time going??? The drive home was very uneventful and traffic free which was nice! And I've, to be honest, been bumming around not doing much! Have been to my cousins wedding which was a brilliant day, and have been up to London quite a few times to do not a lot. I did have the hospital on Monday, so I suppose I should mention that, and my results!

White count, 4.7 (I think, around what it normally is)
Platelets has gone down to 62, which didn't really surprise me as my hair has not been as nice recently and have been feeling more tired. I don't have another check up til the 21st July, so they can't be that concerned! They also don't think that a bone marrow transplant will be necessary, so that was a nice piece of news! I have another bone marrow test booked for September, which will reveal more information about what the next step will be. If I don't have the bone marrow transplant, I may be on the chemo for the rest of my life, which is not ideal, as I don't want to be tired for the rest of my life....

On the whole tired front I have a little tale to tell.

Once upon a time there was a young women who had been in London all day, hospital in the morning, then lunch and walking up and down the Kings Road finding presents with a friend all afternoon. After a nice refreshing smoothie in a very nice bar/restaurant she decided to leave to get the tube to the train station so she didn't miss her train. When arriving at the station ALL trains has been suspended due to a mile long length of cable falling down between London and home. After waiting for about an hour a couple of trains were allowed to go to a station half way home. Off she ran (yes, ran!) to the platform and squeezed herself onto the train. After standing all the way (by now, falling asleep as standing up) to the stop she got off the train to go outside where there were buses to complete the journey. Outside the station along with the by now the utterly exhausted girl were about 2, 000 people and riot police to control everyone getting onto the buses organised to get everyone home. (Some people had been waiting for 2 hours for a bus!) After the first bus left and she was no where near getting to the front, the poor, unable to cope with anything girl rang her mother, who of course couldn't really do much from central London, but told her to go and find someone in charge and explain that she unfortunately has cancer, is very tired and needs to get home. The girl then managed to find someone (who was being yelled at by some very pissed off people, and was therefore shouting back!) and got her chance to speak. She managed to get 'I'm sure there are lots of people here with special circumstances....' before bursting into tears (in front of a 2,000 people! Good work!) and semi wailing, 'I have cancer and just need to get home/sit down!' The happy ending to this little tale of mine is the next bus turned up in about 5 minutes and I got on it! Ad got home just over 4 hours after getting on the tube at Sloane Square! (The train should normally take about 50 minutes from Liverpool Street to Colchester!)

Oh another happy day for the commuter!

Am off to Corfu on Monday for a week, and then it's graduation week, so I have two weeks of fun coming up! Oh 0n the graduation note, I still don't know if I've got a degree, oh the joys! I shall hopefully know more tomorrow! And then the job hunt begins! (Well after my two weeks of fun!) I'm going to temp in Colchester for a bit so I can tell employers that yes, I'm fine 9-5 Mon to Fri, or I'm fine doing 4 days, or 4 and a half days etc etc It will also get some well needed cash into my bank account! On that note, donations are always appreciated....

Well I think that's about it really, can't think of anything else.

Will put a post on when I know about my degree.

Hope all is well with everyone!

Lots of love, laughter and smiles as ever!
XXX

Sunday 11 May 2008

Possibly my last post from uni!

Well my faithful blogetts what to say?

This might possibly be my last post from uni, which is a terrifyingly crazy and also exciting! I can't believe how quickly the last 4 years have gone by!

I had a check up last Thursday and had my bone marrow results explained...and I shall pass on what I understood. The consultant only speaks doctor, so no matter how many times she explains stuff, it doesn't make full sense/I don't get everything she says. Bring on the Hammersmith and their ability to speak english!!

So 34/35 Ph-ve means that 34 out of 34 cells were negative for the Philadelphia chromosone which is the reasos for the Leukaemia which is brilliant. On the not so brilliant side of things, Dr. Shepherd is not so happy with the Leukaemic rate, she was hoping it would be more like 1.% something or 0.% something opposed to 4.77% when I had the rate checked in April. I'm going to email her to find out the rate results from Thursday and will post them when I get them. Due to this she thinks that a bone marrow transplant may be the way forward with me. Which I was obviously not thrilled about as I had put that out of my head.....We shall just see what happens!

On a more positive point my platelets were at 114 which is really good as they have climbed a bit, and not dropped and my white count was 4.6 which I think is a bit higher than last time, so that's all coolio!

My little flit over the ocean to New York was AMAZING!! I loved it there!! Could actually see myself living there for a bit! We (Me, Tave (cousin) and Jess (Tave's friend, now mine as well)) were complete tourists. Went on an open bus tour of 'downtown' Manhatten, went on the ferry round Manhatten and past the Statue of Libery, went round Times Square, chilled out in Central Park, went to MoMA and ate, ate, ate, and ate a little bit more! And loved every second of it! I also got to see a family friend...you know who you are!!..who is in the best possible way, a loon!!! But I love it and of course her!! We went to the Met together and also did some eating! (I would get VERY fat there! Would have to live in the gym before and after work!) It was a wonderful break, and meant that I didn't get to bored in the Burg with all my friends living in the library due to finals. My lovely little flatty finishes tomorrow, so I get her back to play with, and we are going to have a crazy week before packing up and going home basically for ever! I'll be back for graduation week, and that's it! CRAZY!!!

I'm meant to have a check up here on the 12th June, but will see if I can change it to the Hammersmith, as I don't really want to come up here for it. If worst comes to the worst, I'll fly up and down in the day or something as about 2 people will still be up here then!

I'm trying to think if there's anything else of interest to say, and I don't think there is. I'll blog again during graduation week, other than that, it will be if and when I get access to a computer that likes this site (unlike the ones at home!).

Hope every one is well, and that everyone is enjoying the sun, we had 4 days of BEAUTIFUL sunshine, and it has in true Scotland stylee, fucked off! Hopefully it will be nice when I go home!

Will blog soon,
Lots of love, laughter and smiles,
XXX

Sunday 13 April 2008

He did the marathon in 4 hours!

Dear all, I had written a nice long witty and amusing blog which I hadn't quite posted and lost the internet connection, ad guess what...I lost the post!!

So here's what I can remember,

Today was the day and he did it through the rain, and apparently at Tower Bridge, snow!! He hit the wall like you wouldn't believe it, (for those of you who don't know what that it, it's when you get to about 18 miles and your vision goes and your legs stop working etc etc etc), his left knee stopped working, he was over taken my crazy grannies (you have NO idea how many of them there are!!!) and he finished. I don't think I have ever been prouder. He put him self through I can't remember how many months of training and 4 hours of hell for me!! What else could you ask for??

Oh and he also thinks he's lost all of his toe nails!! Daddy nearly vomited when I said that, HA HA HA!!! How I love the amusement I get from the squeemish!!

For those of you who have not yet donated, and mean to, please, please, please do it!! The clock is now ticking on the amount of time left to donate and every single penny makes such a difference!! And makes my blubbing as I walked through Piccadilly so much more meaningful!!

A great big thank you to all who have been so supportive and wonderful and amazing and (shut up Katherine or you will start to blub, and I don't think those on the train would be able to deal with it!...How I love those that GNER, or rather East Coat something as they are now called, and the free wireless so I can do this to fill my time on the way back to Edinburgh!)

He's amazing, I love him so much, he's a little (can you call someone over 6ft little???) superstar!!

Lots of love, smiles, laughter, and let's face it a little teary looking,
Me XXX

Thursday 10 April 2008

Results in a couple of weeks

Well I'm afraid I can't give you the results from the bone marrow test from last week as they won't be ready for another couple of weeks due to the lab having new equipment being installed etc etc etc I shall blog it straight away when I know!

Check up today was fine, platelets have gone up which is good! They are at 108, fingers crossed they continue to behave. White count was 3.5 which I think was a bit lower than before, but not low enough to cause any concern. My bcg (don't know what it stands for medically, in laymans terms it is the leukaemic level in my system) for March was 4.5% which is brilliant as it is a couple of percent lower than last time, woop woop!

Dr. Shepherd has continued with keeping me on 70mg a day for the time being. My next check up is in a month, which is also really good as it means she is happier with my progress and that my track mark junkie scar won't carry on developing.

Have also fininshed all my essays for ever. Is rather odd having no more work to do, and a huge relief at the same time. I do miss the library a little bit though...I'm sure I'll get over that very quickly!!

Marathon on Sunday, very excited about watching the little bro run his run and be there waiting at the end for him. Am uber proud of him, and my clic sargent is over the moon about the money we have raised so far. As amI!

Well I think thats about it, shall write again after the marathon so everyone can know what time Milo ran in.

Hope all is well with everyone,

lots of love, laughter and smiles,
XXX

Sunday 6 April 2008

One week to go until the marathon

Dear all,

Hope all is well with everyone.

Ok, it's one week today that Milo will be running (fingers crossed not in the snow that has arrived in Edinburgh this morning) 26 miles of agony and pain for me! (and Clic Sargent)

So, can those of you who have not yet dug deep, please, please, please go to the website and give!

A great big thank you to those of you who have been so kind and generous so far!

Lots of love, laughter and smiles,

XXX

Thursday 3 April 2008

Bone Marrow Test

Dear All,

I hope everyone had a lovely Easter. I did, and was a very happy bunny to wake up (lets be honest, was woken up at around midday) and see everywhere covered with snow!!! For those of you who don't know, I LOVE the snow soooooooo much! And it was really thick and settled EVERYWHERE!!! Unfortunately it melted by the end of the day...why is snow ALWAYS followed by the sun???? But not before I had a fun time with my camera!

Ok, bone marrow test. Not as painful as I thought. Having the anasthetic was by far and away the most painful bit. (stang like fuck!) But after that was blissully unaware of anything. This is a good thing, cause the doctor tested to see if the anasthetic had kicked in by jabbing a sharp needle into me!! I thank god it had kicked in by then!

I get the results in a week to 10 days, so might get them when I have my chek up next Thurs. By then I will have finnished all my uni work for ever, WOOP!!! All my friends are highly jealous that I'm not sitting exams, but me thinks they would rather that they had their finals rather than swap the last year with me. They are just a little bit stressed at the moment and see that I am nearly fancy free and footloose, and on that note, I'm jetting off to the U S of A on the 22nd for 6 days and I'm SOOOOOOOOOOOOOOOOOOOO excited!!!

Well I think that's everything for the mo. I had written more, but stupidly managed to delete it. This autosaves, but I have nooooooooooo idea how to get to it, and have what I wrote before....nevermind!!

Oh I know what I wrote, the reason they do the bone marrow test is to see if the chemo is working at a more molecular level, and encouraging the body to go into remission rather than the chemo just killing off cells. If it's the latter, I think they start to think abut a bone marrow transplant, but I'm sure I won't be needing one of those!

Me thinks that's it til next thursday when I have my check up.

Hope all is well with everyone!

Lots of love, laughter and smiles,
XXX

Sunday 16 March 2008

sneezy mcsneezy

Dear All,

Right....where to start???

Good news.....don't think I'm sitting exams after Easter which is a HUGE relief. This is because about 3 week ago I went to see my DOS (director of studies...he's my tutor to look after me during my university career) and told him I felt like quitting cause I was so exhaustedfrom spending 10 hours a day reading in the library for essays, and didn't know how I'd cope with exmas. The 2 exams from this term I'd probably be ok with, but it was the 2 exams from courses 18 months ago that I was really worried about. He also thought that I was stopping treatment any minute now. Not entirely sure where he got that idea from, possibly cause I've always been so upbeat and positive...anyways, he said that he didn't want me going through the stress and pressures of exams, and as long as my consultant writes a letter saying that, he can get things put in place that mean that I don't have to sit the exmas.

Whilst in Egypt he got on the case, and has got it so I'm assessed 100% on coursework, which is fucking fantastic!! It means that after Easter I have officially finished uni, WOOP WOOP!! And I graduate on Wednesday 25th June. Unfortuately not with all my Histoy of Art buddies, as they have a different ceremony as they are getting the full MA Hons, but I'm on the same day, so hopefully they will wait for me outside after my graduation as I grauate in the afternoon and they are in the morning.

It's really quite bizarre that I am so close to the end, as it only feels like yesterday I was terrified in the car pulling up to Pollock (the halls of residence) to begin. It's also great that a large proportion of my really god friends, are those who I met in the begining, so they have been with me from the start through everything.

On the Egypt front, it was so amazing. The hotel in Luxor was lush! The people are so friendly and happy. The temples were (lets use my favourite word again...) amazing. And it was HOT!! 30+ degrees every day. My lizard like body loved every second of it. I want to go back as soon as possible. I loved it so much I started to cry as the plane took off....Mummy and Daddy weren't entirely sure what to do!!!

On the health front I have the lurgey that is going round, so have a stunning temperature and can't stop sneezing!! The hospital aren't bothered unless the temperature goes up to 38, and at the mo it's betweern 37.2-37.4, so fingers crossed it doesn't. It is hindering my ability to work though, which is a bit of an arse...worst comes to worse I have to get extentions, but nevermind.

Hmmm....what else?? Not sure, thinks that about it I think. Not looking forward to my bone marrow test which I have to have when I get back, cause it's going to hurt SO MUCH!! I do have a local anasthetic..and also a huge great big needle going into my hip! I'm having it to see if if I'm in remission I think...can't really remember, will find out more when I have it. I'm having it when I get back to uni after Easter, which will also prob be the next time that I blog as we all know I can't at home. Am only going home for about 10 days, and won't be having any check ups at home, so doubt there would be anything to blog about anyway!!

Right, me thinks this is long enough!

Hope all's well with everyone,

Lots of love, laughter and smiles,
XXX

Friday 14 March 2008

Uber quick

Dear All,

Have to be uber quick as have to go to a lecture in a min.

Egypt= fucking AMAZING!!! Didn't want to come home, so started to cry when the plane took off....good!

Health= platelets 70 (is that down from last time??? Can't remember) so the chemo dosage is not going to be increased. White count 4.3,....got to have a bone marrow test to see if I'm in remission or something, can't actually remember....when I have it will ask!! (have been sneezing and have a sore throat, I hope I don't succumb ( is that spelt correctly??) to it, as have to write 4,000 words next week. Also haven't had a cold in sooooooooooooooooooooooo long, and want to keep the record that way!!

Right, am off, longer blog this evening or tomorrow with full update on Egypt, uni and other odds and sods!!

Lots of love, laughter and smiles,
XXX

Friday 22 February 2008

Blah

Dear All,

Am too tired to think of a title for this blog, hense the name!

Right, had a check up yesterday, platelets up to 103, so that's good. I did ask why they aren't settling down, and didn't really get an answer other than because 'the drugs are working', but nevermind. That's possibly because Dr. Shepherd doesn't really know, and that answer is better, in her mind than 'I don't know'!

White count is up oh so slightly to 4.8, instead of the 4.4 is has been for so long. This may have been due to the injections I had on Monday because I'm going to Egypt on the 3rd March!!! I KNOW!!! The parentals have decided that I need a proper break with doing nothing at all. I of course didn't like to tell them otherwise! The rise may also be because I'm so utterly exhausted from all this essay malarkey. It's NOT fun! I'm about half way through so that's good.

I saw my DOS (Director of Studies) today, to tell him that I'm defiantely leaving at the end of this year, so he has to sort out the paper work for the general degree. Although he kept on referring to it as the B.A, so maybe I'm getting more...who knows. A degreee is still a degree at the end of the day, and it means that the past 3/4 years haven't been for nothing. He was really great today, telling me how much he admires me, and that I really deserve to end up wth something at the end of this year. I was telling him how I get so tired, and everything takes so much longer, and he thinks that I possiby shouldn't sit the exmas at the end of this year, which I agree with. To be honest, I don't think I'm up to the stress of revision, and don't think I have the energy I'd need to revise efficiently, effectively and do well, so it's comforting knowing he's 110% behind me, and on my side. I think they will look at essay marks, and see what my average has been since I started and see what was most likely that I would have ended up with. Which is good, as my marks were always a good 2.1.

What else, hmmm, am serisouly looking forward to getting away for a week, not only to the sun and heat, but to know that I don't have to go to the sodding library for hours every day.

I just thought fo something, but it's gone....hmmmm........nope, not there!

Thank you to all who have donated money to Milo and the marathon since my last message. The response has been amazing!!

Am off to get some lunch, will write again if I remember anything else. Oh yes, after easter my chemo dosage is going to be increased again to 100 mg to see what happens.

Hope all is well with everyone!

Lots of love, laughter and smiles,
XXX

Sunday 17 February 2008

We have hit £1,000

Dear All,

Just an uber quick note to say a big thank you to all of you have donated. We have hit the £1,000 and I believe we are well on our way to hit the £5,000 target which Milo has set. ( At least I think he has anyway!!)

To all of you who have donated, an email of thanks is on it's way very, very soon!! I'm sorry to say that off line donations can't be named, I hadn't realised this. If this puts peope of writing a cheque, the online dontation site is very, very easy to use!! Just go to www.justgiving.com/miloruane1 and follow the directions!!

Due to the cheque writers being unnamed, I know who you are, and am ever grateful for the money!! Recognition is on its way...I hope you don't mind it being through an email, as I know it will get to your straight away, and because I'm too lazy/swamped with work to go and buy nice writing paper!

So much love to you all (and to those of you who feel quilty for not donating...GOOD!!! Do it NOW!!!)

XXX

Thursday 7 February 2008

A speedy check up

Dear all,

Well today I believe I had my fastest check up to date. In and out in....wait for it.....40 minutes!!! Definately one for the guniess book of records!! It was because my consultant was away, so only special people went today to see her stand in.

Well just for a change, the platelet count has not behaved itself and has dropped again, to 93. White count the same at 4.4, so thats good.

I have another check up in two weeks.

Uni is going well, its all a bit exhausting doing essays etc, but it's nice to be using my brain and to be learning stuff again!!

I also wanted to say a big thank you to everyone who has donated money so far to Milo running the marathon. We have to date raised just over £700, which is amazing!! Claudia's (my big sister for those of you who don't know my family) work, Able and Cole (an organic food company based in London), has also donated £525 which will be registered with the just giving site in March at somepoint, which is pretty fucking fantastic!! So we are well on the way to raise the (I think I'n correct in saying) £5,000 that Milo wants to raise!

Hope all is well with everyone!

Until the 20 something of Feb!! Or even the 20th, not sure what the date is in 2 weeks!!

Lots of Love, laugher and smiles!
XXX

p.s me and Sarah (my beloved flatty) have decided to give up drinking during the week for lent....I'll keep you all posted on how it goes!! We were going to give it up full stop, but knew that that was just a silly idea!!

Friday 25 January 2008

marathon donating link

Dear all,

Firstly the link is now up to donate online. It is:

Justgiving - donate to charity and raise funds online - Milo Ruane london Marathon'08 - for sis!

http://justgiving.com/miloruane1

So please start to donate, even if it's only a couple of quid!

Also have a check up yesterday,

White count 4.4 (seems to have settled there....)
Platelets 128, so that's good, seems to be on the rise!
Leukaemic level has gone up a bit, from 4.44 to 7%, but the consultant thinks that I had the last level test when I was on a higher dosage of the chemo, and is not concerned about the rise, as it's only very slight.

Hope all's well with everyone!

Lots of love, laughter and smiles! (the bigger the donations, the more laughter and more smiles, and no I promise, that's NOT emotional blackmail!!! He he he!)
XXX

Saturday 19 January 2008

A big thank you

Dear all,

Just wanted to say a big thank you to everyone for all their support and emails and everything in the past year. Believe it or not, it's a year today that I was diagnosed! Time flys by!

As always, lots of love, smiles and laughter,

XXX

Thursday 17 January 2008

London Marathon

Dear all,

(Sorry for repeated information, have put this elsewhere, and have just cut and pasted it.)

When I was diagnosed I have met a wonderful woman called Patricia who is attached to the hospital in Edinburgh, the Western General, and works for a cancer charity called Clic Sargent.

http://www.clicsargent.org.uk/Home

Without her I believe that my coping with the shock of cancer would have been very different. She not only rings me about once a week to see how I am, and to offer to do things for me, for example my supermarket shopping if I'm not up to it, but also arranged a disabled parking badge, and the opportunity to rant and moan at someone who is slightly disconnected, and won't get upset if I'm upset like a family member or friend would. She has offered me the most amazing amount of support, and I am very lucky to have her, as technically I'm a bit old to have her. I think they let me slip through the net as I'm so far away from home at university.

She is also attached to the Maggie's Centre which is a drop in centre for those with cancer, offering support and relaxing therapies to help for example the pain suffered by those undergoing chemo.

http://www.maggiescentres.org

Clic Sargent do many things including arranging weekends for young people with cancer to meet and share experiences, as it's some times nice to discuss treatment, fears, and experiences with others who are going through the same or similar types of cancer.
(I'm not saying for a second that you all haven't been truely wonderful with your support!)

Milo (for those of you know don't know me, he's my younger brother) after running the New York Marathon November 2006, has decided that he wants to run the London Marathon (as you do!!) to raise money for charity. He asked me which charity I would like the money to go to, and decided to go for Clic Sargent, rather than an obvious one like Leukaemia Research, as I want to get the word spread about them as much as possible. And to boost their coffers, so they can continue the good work.

Clic Sargent is a small charity that is little known. Please, please, please donate! Even if it's only a couple of pounds. It's a fantastic charity who have made my dealing and fighting with cancer so much easier. They help me stay in the stong upbeat frame of mind to beat the fucker!

Please tell everyone that you know!!!

Thank you for supporting Clic Sargent and me through doing this!

There will another post soon with the link to donate the money to. If you want to scribble a cheque, please post it to:

Poplars Farmhouse,
Stoke By Nayland,
Nr. Colchester,
CO6 4RT

Lot of love, laughter and smiles,

XXX

Sunday 13 January 2008

Happy new year

Well my dear blogger readers,

I can't believe I haven't written anything for over a month, my appologies for being crap!! At home the blogging status is still nil, I have absolutely no idea why, but ho hum, not a lot I can do really! So as I'm now back at uni, I can blog away to my hearts content!

Where to begin? I suppose by saying happy new year, and also a belated happy christmas. I hope everyone was well behaved and got what they wanted. As I'm a little angel and am always very well behaved, I got what I wanted which was very nice!!

I had a really lovely Christmas, and for the first time, family Ruane was altogether in the new house for the few days over christmas which was great, and amazingly there were no arguments amongst Ruane children!!! Maybe at the ages of 22, 23 and 27 we are finally growing up and getting along amicably the whole time!! Shocker I know! It was bound to happen some day, and that day has finally arrived! I wonder how long it would last if we spent more than 3 continuous days together.....??!!!

New years was also fun as I came up to Edinburgh for Hogmany. I was also very clever and convinced my cousins to do the driving and in return I'd bring my disabled badge so the parking was free!! (As I was driving back up for uni on the Sunday, I didn't want to do the drive 3 times in a week, and flying and the train is soooooo expensive at that time of year! It was soo much cheaper to split the petrol between the 4 of us, even with the crazy price that petrol is at the mo.....bring on the lorry driver strikes and see if that gets is lowered a bit!!!)

Health wise everything is trundling along fine. I had a check up at the Hammersmith around the 18th Dec and the platelet count had once again dropped from I think 138 to 78...good!! They wanted to see me again before I came back up here for the start of term, so of course I agreed. Without thinking I accepted the appointment for the 2nd of jan. This was the day we were coming back from Edinburgh. When I got home I realised this and spent over 2 weeks trying to change it. And of course there were no Leukaemia clinics between christmas and new year, or even just before christmas, so with a lot of colourful language, shouting at my parents at there every suggestion (becuase it was their fault of course that my consultant hadn't emailed me back, and that her secretary was on holiday) I finally got a response on Christmas day of all days (why she didn't check her emails before that is a mystery to me!) that it was fine for me to have a blood test locally, as long as I got the results to the Hammersmith consultant before the 2nd Jan. So I rang the surgery (when it reopened on the 27thm, at 8.30 AM, highly unamusing!!) and fiound out that they don't do blood tests for those under 65 (not very fucking helpful!! Not even the words cancer and Leukamia allowed them to sneak me in!) So they told me to ring the local hospital who were great and did a blood test for me. I did have to get the Hammersmith to fax over a blood test sheet, but I got it all aranged. So off I went to have my blood test. I took it up to Haematology and they told me they wounld't process it, once again, how helpful!! (It was a really grumpy person who blatenly had NO christmas spirit WHATSOEVER even though I said it was important and used those two secret passwords that get me a lot done, being cancer, and Leukaemia, but to no avail. They said they would post the boood up to the Hammersmith that everning for it to be processed there. I then thought nothing of it, and enjoyed family festive stuff.

I had emailed my Hammersmith consultant saying that I had had a bloodtest locally and that it had been sent up etc etc etc This was on the 27th. When in Edinburgh on New years eve I finally got round to phoning the hospital to see if they have recieved the blood and what the results were. (I had assumed that no news was good news, and that the counts were ok, and to carry on as usual). I spoke to a very nice registra who went to the lab to see if they had recieved the blood, and guess what....they fucking well hadn't!!! Yay for the NHS!!! You would have thought that it would be very simple to get a test tube of blood from one hospital to another as it was all bagged up and labeled etc etc etc Onviously not! You also would have thought that after all the trouble I went to to have a blood test done, the consultant could have emailed me to say that they hadn't recieved anything..... So I thought fuck it. I'm not going to change my going home plans, I feel fine, I'll just miss the appointment and go to the one booked at the Edinburgh clinic on the 10th.

I know I have ranted about my edinburgh consultant in the past, so I think it is time to say something nice about her. For all her flaws when it comes to being motherly/understanding etc etc etc, she ALWAYS gets back to me IMMEDIATELY when I either phone or email her!

So that was all fun and games!!

My lastest results are platelets 99 and white cell 4.4, so it's all good.

I am now back in lecures which I'm finding a bit tiring, so need to be uber organized and start my essays next week as we now have the titles, and not leave it till the week before they are due in , as they would be very shitty essays, and I'd probably get about 5%, and put myself in hospital with exhaustion!!

I've also basically decided to leave at the end of this yeasr with a general degree. I don't think that I want to do another year of uni, don't know if I'd be up to dealing with all the stress of a dissertation etc etc etc I'm also begining to feel that my time at uni is coming to an end, and I'm ready to get on with my life. I feel very similar to how I did at school in the upper 6th. Before christmas I was quite happy and content, but after christmas the itchy feet began, and I was getting ready to leave and begin the next chaper of my life!


So for the time being, that is all. I'm going to do a seperate blog in the next couple of days about Milo ruunning the London Marathon for me, and my charity of choice which is Click Sargent, so gret ready to empty piggy banks, open your wallet, get the check book out etc etc etc

Lots of Love Laughter and Smiles as usual!
XXX