Going home tomorrow...all been well

After another pucky start to the morning yesterday i perked up a for a little bit. Tom cooked a nice roast for lunch which i really enjoyed. I was getting fed up of living off sandwiches lol. When we got back to hospital in the evening i was in agony with my stomach...maybe it was Tom's cooking hah only joking babes. I couldnt take my meds and had to go straight to bed. I slept badly for the third night in a row as i am having withdrawl symptoms from my sleeping tablets. I will just have to put up with it until my body gets back in to a natural sleep pattern again. I wasn't sick this morning so that was a good start to the day, and Dr Cook was his lovely self when he came to see me. He said i have done really well and that i will be getting kicked out in the morning. I will go home on oral treatment for the cmv and will return to the ward monday for my cmv levels checking. I will then go to clinic on the wednesday for my bloods doing. Dr Cook reminded me that i am no longer under Dr Smith's care which is the only bad news of the day lol. Unless the CMV level is really high tonight then i will be out at some point tomorrow. I just want to add how amazing Tom has been these last 6 weeks, he hasn't seen any of his family over christmas and has spent a fortune to be at the hospital night and day with me so Tom we will spend next xmas with your family and i will look after you as much as i can next year, love me x x

Has had a relaxing day at the mint hotel with Tom...

Thanks to the growth stimulation injection i had yesterday my neuts were above 8 this morning (they had dropped to 1.5 yesterday) so that meant i could be released for the day again. It was snowing at the hospital so Tom asked the nurses if he could take me to the hotel in Leeds so that if the weather got worst we wouldn't be far away. They said no problem as long as i stayed away from people and wrapped up warm. I have spent most of the day in bed as i forgot how comfy they are compared to the hospital ones and tbh my body needed a good rest after having a busy weekend. I have had a lovely tea which has given me maybe just enough energy to get a bath before heading back to my overnight accomadation. I think we may come back here again tomorrow if the weathers the same cos it is a 5 min drive from hospital and the room has 2 tvs which is more than i have at home lol. Before i forget the CMV is still positive so will continue with day release until i get a negative (i hope on thursday) and you never know they might get rid of me on new years eve. I dont think i will stay up til midnight so i aint bothered where i am or what  i am doing as long as i am snuggled up with Tom and got some good music on : )

has had a merry little xmas afterall...

I had a wonderful day yesterday as i was allowed home for a few hours after my xmas dinner. I was like a big kid on xmas eve getting over excited which did not please Tom lol. I recieved a phone call from my favourtie comedian Bill Bailey on xmas eve so whoever sent him the letter about me thank you so much for making my xmas so special. We talked about allsorts of stuff for about 10 minutes and the nurses couldn't believe it was really him lol. Thank you Bill for putting a huge smile on my face. I woke up at 4am on xmas day but managed to go back to sleep til 7 and was greeted by a grumpy Tom cos he had a headache and a cold sore, boo hoo! I slowly opened my presents and did half then and the other half a bit later on. I got loads of nice stuff and i deffo dont need any socks or slipper socks for my birthday lol. The xmas dinner was a disappointment i have to be honest, and my body would agree with that staement. I have had a lovely homemade dinner today though so that has made up for it. I absolutly loved having my bath today i could have stayed in for hours if my skin wasn't so sensitive to the heat which cut my bathtime short. I have borrowed a coat off my nan as Tom's coat made me look like paddington bear lol. I will be heading back to the ward shortly but as long as my neuts are ok again tomorrow, i can cope with bedtimes been at hospital for now.

What a week...

Well i thought i was going to be having myself a merry little xmas at home with Tom at the beginning of the week but what a difference a day makes. I had a temp Mon night after i was told i may be kicked out for good at the end of the week. This was providing my sickness was controlled and i was taking all my meds by mouth. However, Tues i found out the CMV was back and meant business as this time it had risen from 6,000 to 42,000! I spent the day been a moody cow as  i am sure Tom will agree as the nicest thing i said to him was that i would head butt him lol. I think i have overdosed on Shameless. Today i have a glisten back in my eye and do actually feel a bit brighter considering my counts have dropped again. My neuts have dropped from 0.87 to 0.55 which is a pain cos i cant go anywhere til they are above 1 grrrr. I have got back in the xmas spirit after having presents brought in from my Dad and Aunty Hannah. I was worried when Tom had more than me last week but i have the most now so that has cheered me up. Had a go on the wii for the frst time since coming in and i really enjoyed it. I am looking forward to my xmas dinner as it is a real turkey and not micro meals. I dont think i have ever been so excited about a meal but i guess that is cos we take things for granted. I have recieved lots of lovely cards so thankyou everyone that has sent them, they have found there way ok. The dietician is very pleased with how much i am managing to eat and it seems to have helped my tummy recover too. It is a good thing i put 5 stone on before i came in cos i would weigh 6 stone now if i hadnt have. I am going to focus on been out for my birthday so i can celerbrate with some shloer and a nice soak in the bath.

Feeling Low...

Just been on Look North and you may have seen i aint looking too well at the moment. I think the hardest part is that it has been 4 weeks since i came into hospital and i am at my worst now. I didn't feel this ill with the TBI and chemo, which i am finding very annoying. I saw Dr Cook this afternoon and he feels that the sickness is down to a reflux problem. My tummy is basically full of acid so everytime i move that is why i am sick. My swab results showed that i have a cold so at least it aint flu but it feels like it is. The body ache is because my magnesium and potassium are low so just having some through my line now. The CMV virus has come back negative so hopefully my counts will flourish. My white count has doubled from 0.21 to 0.45 and my neuts have gone from 0.09 to 0.21 since yesterday which is great. My platelets are 121 so i don't need any transfusions or injections to help my counts come up. Dr Cook is happy with how i am doing and is confident the sickness will be sorted in a couple of days. I think that everything is suddenly getting to me because i left the room the other day and it is christmas next week. I am starting to feel suffocated in my four walls and i am so restless on a night time when Tom has gone. I don't know how i would have got through this without him, the things he as done for me is unbelievable. I feel so empty when he goes and scared about how i will manage to do things. I would be really happy if my counts are normal on christmas day, that would be the best prezzie.

Feeling 'hot 'hot' 'hot'...

Not been on here for so long as  have been quite ill since sunday. I started feeling really sick on Sunday and had a temp since then on and off. I am on new antibiotics and having lots of iv paracetamol which seems to be helping me feel a bit better for half an hour here and there. As you have probably guessed i have been very warm as a result of the temp but i have also been very cold as well. It is highly annoying through the night having to add and remove blankets every hour cos your body can't decide what it the hell it wants. I spent Mon and Tues curled up in bed feeling sorry for myself for the first time since i came in. Last night was a rough night i puked my guts up and had a temp and then this morning puked up a bit more. It takes all your energy not that i had much anyway. The thought of getting in the shower is like been tortured but i am gonna force myself cos well i will smell lol. I had my naso tube out on monday cos i had started eating loads over weekend and was taking my meds by mouth then i become ill again. I wont have another tube though as already had 2. Dr Cook made me laugh when he said that the naso tube was welded to my face so it needed to come out lol. I was very emotional earlier when i went for some x rays as i had forgot what it is like outside of my room. I had forgot that there are people lol. I wore a mask which made me feel safe but i doubt it did anything useful for me lol. There was some live music going on downstairs which was amazing to hear for half a minute. I had a x ray of my tummy and face done to check that there ok cos bin in pain with them. It would appear i have flu but awaiting the swab results to confirm it. I think that is all i have to report for now.

Day +15

Well this week has gone so fast i had to look at my timetable to work out what day it is in the big brother house lol. My mouth has improved loads apart from my tounge which is really hurting. Imagine when you bite your tounge that you have bit all of your tounge ouchie! I am getting on with my naso gastric tube a bit better as i dont feel as ill after my meds and i am tolerating my feeds a lot better. I have started eating again and if my tounge wasn't hurting i would have licked the plate clean at lunchtime lol. I have had my anti-rejection drug stopped for a few days as there was too much in my blood and it can be dangerous for your kidneys if nothing is done. My counts came up on thurs and then down a little yesterday. I don't know what they are today as doctor not been to see me yet but if they have come down again it is nothing to worry about at this stage. It was just reading a post about someone's bf who has all who has had similar treatments to me and had same side effects. It was very encouraging to see he went home on day +24 i can hope for the same but i know cml patients tend to be in a little bit longer. I have nearly written all my xmas cards and Tom has done a grand job sealing the envelopes so i dont paper cut myself lol. I am going to attempt my tea even if it is a bit differnt to what i ordered...

"My mouth is on fire"

I had no idea that TBI and chemo would cause such a sore mouth. Imagine your whole mouth is full of ulcers and your tounge is full of blisters and your lips have green pus coming out of them. Sounds nice eh? Well that is my mouth at the moment. Hmmm that must be why Tom hasn't been kissing me lol. I had a nose bleed yesterday so had a top up of platelets a little while ago. I had some not very good news yesterday as one of my blood results showed that i have the CMV virus. CMV is a common virus that infects most people at some time during their lives but rarely causes obvious illness. For me though it is a big pain in the bum as it means the bone marrow will not start working until it has gone. This means i will have a sore mouth and low counts for longer and will be in hospital longer : (  I cant say how long it will take to go because everyone is different but they have caught it early on which is a good start. It can also come back a lot until my immune system is working properly. I have been very very upset since yesterday but it keeps me strong and sane when i come on here and read the comments pages.

Scared to go to sleep...

Had the most horrible dreams last night and couldn't wake up for ages either. I have never had such vivid dreams which i could feel the pain in and not wake up straight away. The doctor and me both think it is because i had some cyclizine(anti sickness) at midnight and it hs reacted with the morphine. I am hoping that this is the case cos i had to get the nurse to wake me up every half hour this morning cos i was so terrified. I have never had cylizine at that time before and it made me drop straight to sleep so please please no nasty dreams tonight. I also had a bit of a skin reaction earlier which is probs the cyclosporin(anti rejection drug) as it is common to get a rash with it. It aint owt serious just makes my skin burn. My mouth is at its worst as i cant eat or drink and is rated 16/18 on the score chart. I have been having all my meds and food down my naso tube. My feed had to be stopped tonight because the mucusitos is in my tummy now which meant it felt like i had someone sitting on my stomach. I will give it another go tomorrow. All i can do is try my best and the nurses cant believe how well i am doing.My hair has come out at the front cos there is some bald patches which feel very smooth but the top of my head is sore and red. I can't wait til i can eat and manage to drink something fizzy without it stinging. Just waiting for the nurse to come cos machine is bing bonging now.

First feed through my tube tonight and i am so nervous...

Firstly if anyone tuned in to watch me on look north tonight i appologise but it had to be postponed til Mon nite due to the snow. How dare the snow be more interesting than me lol. I have just put flash dance on to try and distract myself from waiting for my first naso feed. I bet your thinking i am bonkers getting so nervous when i have had chemo and radiotherapy. I would hate to be the nurse right now cos i am very scared. The new room is smaller but i have a huge bathroom which makes up for it. The tv doesn't work but the internet does so i am happy to have one until i go back into a normal room. I will be in this room until i find ot the result of the swabs and if they are negative they can't move me til another patient goes home. I think though i am going to enjoy it in here cos right now i am using the bathroom lots and this one is perfect for me and my dripstand. If the swab is positive then i will start treatments which the nurse is going to discuss if i do need them cos thery are meant to be a bit nasty. I looked at my mouth earlier and it is full of blood and cuts and like open wounds on my tounge so that explains why my liquid medicines are burning my mouth out.

Dr Smith is doing the ward rounds this week so i gave him an update of how i was today. I just explained about my mouth being the problematic side effect at the moment. He had a look and said i am keeping it very clean which made me feel a bit better. I was worried that i wasn't using the mouth washes enough but i obviously am lol. I made him lagh as well when i explained that one of my meds tasted of vomit last night. Dr Smith will be back over the weekend to check how i am getting on and that is fine by me lol.

I am going to go back to my film now and wait for my feed
tik tok tik tok....

Changing rooms...

This may be my last post for a little while as i am being moved into a special room. The reason for this is because i woke up with a few cold symptoms this morning. I have had some swabs taken so just waiting for the results to come back which could take a few days. In the meantime i have to be moved so that i cant pass the lergy onto the other patients through the air system. Hopefully the swabs will be negative as the treatment they give for colds is not pleasant to say the least. I just hope if the swabs are negative they will be able to move me back into a normal room asap cos the tv and internet doesn't work in the special rooms so wont be able to watch look north tonight now. I am feeling really low and upset now and i am so scared about my first naso gastric feed tonight. I am having some blood and platelets etc later on but have bin disconnected from the dripstand for a bit not that i can do owt now lol. please pray there is no cold and i will be in a normal room again next week x

Before and After mugshots lol...

Well i think i may be able to tell which is before and which is after lol. Thanks to Barbara for shaving my head she did a grand job. I had a rough night last night with various things happening. I had a temp so had to be stabbed so they could do some blood cultures. I had a disgusting big blood clot come out of my nose which caused me to have a panic attack with me having no platelets. I was up all night with the runs and then when i did fall asleep i kept nearly choking on my own saliva so yes i am rather grumpy today. The doctor just said i look loads better compared to two days ago and loking at the pics above i agree. I look less yellow and squinty me thinks. Tonight i will have my first naso gastric feed so i will be wired up to yet another machine grrr. I just hope i dont have the runs cos that will not be good lol. I might just wear a nappy hah!