Christmas

I hope everyone had a wonderful Christmas and Happy New year for tomorrow night!

I am typing my blog on my new laptop, yes I have a new laptop! So hopefully no more waiting half an hour for things to load, I did just have my brother around sorting it out for me though as my Internet was playing up. I'm now on Google chrome apparently which is better.

I was very spoilt this Christmas, I also got a new phone, so now I can go on the Internet on my phone and it's not touch screen so I can actually text again without getting very annoyed at my phone! I got three charms for my Pandora bracelet, DVDs, PJ's, dressing gown, clock and mega drive games you can play on the x-box along with many other gifts! So I have been playing on Sonic, Sonic 2, Sonic and Knuckles and Golden Axe all week, I'm not as good as I remember! I have so many memories of playing on these games with my brothers, writing down what to do on each level, such geeks!

I felt really guilty actually as I only had four presents for Pete, there was supposed to be five but one got lost in the post! I wasn't well enough to go shopping once I got out of hospital so my pile for Pete was rather small. Pete finished my Christmas shopping off for me and wrapped everything, but I can't obviously get him to do his own! We managed to get the Christmas tree up on the Thursday before Christmas, but only the 6ft one and not many other trimmings, but at least there was something on the day to make us feel the part!

I didn't have the best Christmas, just because I felt so terrible. The food, people and presents were great, just my body that wasn't. However I tried my best but to be honest I was dreading Christmas Eve-Boxing Day as we had so much planned and I had no idea how I was going to do it. When you get so breathless so easy everything is such hard work, even going to the toilet, every action takes so much effort. Last Thursday I practically stayed in bed all day and even turning over in bed was making me breathless and cough terribly. It's so hard to describe and until now I don't think I've ever experienced it and could not imagine what it could be like. I couldn't cook anything as I couldn't face walking in to the kitchen, I most defiantly could not shower or bathe on my own, I had a shower one day and ended up sat on the the bath floor because I tried to wash my hair. I was obsessing over things I was going to have to do which would make me worse, like at Pete's parents I knew I'd have to walk up the stairs to go to the toilet and I had to think of clothes I could wear without a bra as bra's just make me feel constricted.

Anyway I managed to get through the festivities and did start to feel slightly better on Boxing day, however the day after I felt terrible again. It's disappointing because anyone who knows me knows I love Christmas and I still had a good time, I'm just angry at my body for making a fun time of year even more hard work and worrying for me.

I went to the ward on Wednesday and the good news is that my sats were 96% so that's an improvement, my fev1 was 33% and my weight was 52.9kg so I'm 5kg down. They are now becoming anxious about my weight so I have lots of supplements to try and I'm trying to have 900 calories a day in supplements. I'm having a ensure plus which is 300 calories to sip on in the afternoon and a skandishake in the evening which mixed with full fat milk is 600 calories. There are all sorts of supplements, some come made up and are like a milkshake like the ensure plus, some are like a fruit juice (they are horrible but okish if mixed with lemonade). Then skandishakes and build ups are a powder you mix with milk so more difficult to make but taste slightly better.

I have also been put on Prednisolone 30mg (steroids) and damn Voriconazole again! My CF team do not like to use steroids unless really needed, they have alot of nasty side effects such as thinning bones, upsetting blood sugars and other things I don't really know about. Two things I do know they cause which I dislike is a moon face (although only usually if on them for awhile) and insomnia. I only had 4 hours sleep last night! The good thing about steroids is I already feel loads better, its amazing! They make you have lots of energy and my appetite is already better too! The Voriconazole I know all about, no doubt I shall feel like a vampire soon because they make you sensitive to light and my hair will start to thin again. Hopefully I won't hallucinate this time!

So I am feeling so much better already its unreal, I can do things again! I am at the hospital again next week but fingers crossed my lung function and weight will be up and this will be the end of the silly cold that ruined Christmas!

Home

At the start of last week everything seemed to be going well, my crp went down to 20, my lung function went back up to 42%, my headaches had gone and I didn't need oxygen when exercising anymore. I can't remember if I mentioned this, but for the first few days my sats were dropping below 90% when I did exercise in the gym so I needed some extra oxygen. Ideally a persons sats should be over 95% but anything under 90% is not good.

However they decided to keep me in for the full 2 weeks to see if I could improve anymore, I was abit disappointed but agreed. By the end of the week I felt so ill again, my sats on the Friday were sitting at 89-90% when I was resting and they mentioned I might need extra oxygen, I was supposed to have 4 hourly observations to check this but it never happened. I needed oxygen when exercising again, my sputum was thick and dark, I was sweating again during the night and my lung function fell to 30%. My crp went up to 33 however my bacterial count was still going down which was good. I had an overnight oximeter as your sats tend to drop when you are asleep and since mine were low already they thought I might need overnight oxygen. My average sats overnight were about 89.6% so not low enough to need oxygen just borderline.

I was fully prepared to be told I would need to stay in or at least go on home IVs but to my surprise they said I could go home and return next Wednesday to be checked on. Apparently my Xray shows an improvement and they are please with my progress, I'm not sure how I feel about this. I told the Doctor I was concerned about my lung function and I am breathless just walking around, getting a shower etc but he was adamant I was to go home and see how I coped in my home environment. I had a walking test on Tuesday and my sats are dropping to 88% when I just walk, which is borderline again, so I have to have another one next week. They seem to think it's all viral and I will pick up once it has gone. I had a CT scan yesterday to look at my lungs in more detail and check there is nothing going on they don't know about.

So that's it, I have been shipped home and I feel like a bag of crap if I'm honest. I have nearly been sick twice already from coughing, I am getting out of breath just walking around the house and I'm so tired I just want to curl and disappear. On top of this its Christmas in 3 days and I still have shopping to do, a tree to put up and then obviously Christmas it's self is going to be exhausting.

My CF team said to call if I can't cope but what exactly are they going to do over Christmas? All my family were stressed when I was in hospital and I hate being in there. They are always bugging you and forgetting stuff or bring it like an hour after you ask, they ask you to pass them stuff and wake you up trying to put your IVs on. One night I woke up with a terrible headache pressed my buzzer, the nurse stood at the door shouting 'yes Gemma what do you want' (because I was in isolation they all had to put gloves and an apron on to come in my room so preferred to stand at the door and shout stuff to me and ask me to pass them stuff or take stuff from them.....lovely) and then when she brought my paracetamol she turned the light on! The food is horrible, I've lost 4kg whilst in there, a combination of a poor appetite and horrible food.

I'm so worried that this is it, I won't get my lung function back up, I'm terrified. I can't live like this, I really hope I feel better by next week.

Hotal St James'

Well this is going to be my home for awhile....Yes I'm in hospital! A first for this blog so I haven't done bad,I think it's almost 5 years since I as last in! I went to start my IVs on Tuesday and really wasn't feeling good, I was sick when I got home from coughing so much and just lay down for the rest of the day, I had to go back to the hospital in the evening for my second dose of Aztreonam as I haven't had it for several years and they like to check you don't have a reaction to it.

Later in the afternoon the nurse called me to say my blood results had come back and my crp was sky high at 160, its supposed to be under 10 and usually when I need IV's it's about 30-40, crp are your infection levels. She asked me if I wanted to come in to hospital or wait a few days and come in if I was no better, they had a bed for me and I could come in the next day. I decided to go in as I was feeling so rough and just wanted there to be people around to look after me so I don't have to do everything myself, I was upset though as I don't like being in hospital especially so close to Christmas when I have shopping to do and things planned! I still had to go that night for my second dose and got annoyed when some woman in the lift in a hospital for godsake decided to comment on my cough in front of everyone and told me I should have a mask on!

On Wednesday I went in to hospital, Pete managed to get some time off work to bring me in (he has just started a new job!) but he couldn't get parked as the CF spaces which are reserved for CF patients and have signs saying you need a permit were taken by people without CF, typical! Another guy with CF went up to one of the cars where a man was sat smoking in it and explained this to him and he told him he had a disabled sticker and wasn't moving! So instead of Pete being able to help me up to the ward with my bags he had to drop to me off at the entrance and go as he didn't have time to park somewhere miles away and walk over. Makes me so mad that people are so inconsiderate. So I dragged it all in myself and this time some idiot in the lift decided to ask me if I was going on holiday as it looked like it! The nurses said they would call security about the cars but I don't know if they did.

I had an xray in the afternoon, I got pushed there in a chair by a porter, I felt a right div but was glad of it as it's a long walk to Xray. There was then some problem returning me as the porter put I was completed even though I wasn't, something to do with how they had spelt my name wrong, can you believe it! So i was stuck in Xray for over 2 hours, luckily my brother has lent me his Nintendo DS and I'm addicted to Pokemon already!

My Xray revealed I have pneumonia in my left lung, its not too worrying, just explains the high infection markers. I think I did the right thing in coming in anyway and I'm already starting to feel better.

The CF ward is really good, we all have our own rooms with ensuite, fridge and kettle and we have a computer with free Internet access and a tv with blu ray dvd player that is free to use. The food has improved alot since last time I was in, it is freshly made and I get a fry up every morning! There is a patient kitchen we can use to make toast, drinks etc but I'm being barrier nursed at the minute as swabs showed I have rhino virus (common cold) so I'm not allowed in the kitchen at the moment as they don't want other patients to get it.

December - bittersweet month

I had outpatients on Friday and my lung function has fallen to 32% from 42% a month ago and my weight has fallen to about 55kg so not much but it still concerned the Doctor. So guess what? I have to go on IVs! I am actually past caring, I feel so ill I wouldn't have cared if they said I had to go in to hospital. This is the lowest my lung function has been for 2 years, to the date can you believe it! It was 31% the 2nd December 2009, I get the feeling December is not a good month for me!

I get breathless doing everything, I cough doing everything even during the night, my chest aches, my body aches, I am sweating buckets every night and sometimes sweaty during the day, my appetite is poor, I have little energy and just getting dressed is tiring me out. Its gotten worse over 2 weeks and I've had enough! I realised yesterday I haven't even considered when we are going to put the Christmas tree up, I always get excited about that and put it in my diary! I'm currently listening to Christmas songs to try get me in the mood, I get this from my mother, one memory I will always have of Christmas is my mum having the Christmas tunes on loudly whilst wrapping presents at the table and writing cards. I think I am one of the few people who loves Christmas songs!

So I am starting IVs tomorrow, I'm not having Ceftzadime, I'm having Aztreonam this time so have to have my second dose at the hospital as well to make sure I'm not allergic to it since I haven't had it in a long time. The nurse annoyed me a little as she said I could have my first dose then go Christmas shopping and then come back for my second dose, does she really think someone ill enough to need IVs would be able to do 6 hours worth of shopping?! I think I'll go home thanks....

Anyway I am excited about starting to feel better again and I will finish my IVs the Tuesday before Christmas, it could be worse, I could be on my IVs on Christmas. I remember once when I was a child I was in hospital over Christmas but I got to come home on Christmas Eve and go back in on Boxing Day, I don't ever plan for a repeat performance!

Love on the Transplant List

I'm sorry I haven't blogged much, i'm feeling really rough at the moment. I woke up with a cold last Tuesday and started Amoxicillin straight away to try stop it going any further however I don't think it has worked. Sunday was the worst day, I haven't felt so ill for a long time.

I'm at outpatients tomorrow so will find out if my chest has worsened but I'm almost sure it has, I am getting breathless lying down, talking and just walking around the house. I am coughing thick green sputum up all the time and taking a sputum pot with me everywhere, my chest aches and I've taken to not wearing a bra when possible as it feels too tight and restricts me. I am sleeping better than I was which is a positive, I'm not waking in pools of sweat but freezing anymore and I'm coughing less during the night. I'm just so pissed off (excuse my language!) I don't need this now, its December and I have lots coming up which I have been looking forward to. My appetite is poor although slightly improved today (I actually had some breakfast and attempting some lunch) and my skandishakes are a year out of date, they do not taste good!

I am so bored of just lying around and not doing much in order to try rest! I really do hate this time of the month!

There was an excellent programme on Monday called 'Love on the Transplant List' it is about a CF friend of mine called Kirstie and her journey to receive a transplant with her husband Stuart. It was really well put together and I think it reflects brilliantly how difficult every day tasks can be and how difficult it is to watch your other half dying in front of you. It makes me realise how amazing Pete is to know this could happen to me and not be fazed by it. Obviously my CF is not at this stage and hopefully will not be for a long, long time but it raises awareness of CF and makes people realise how important becoming an organ donor is. Please take the time to watch it on BBC IPlayer if you have not seen it. Kirstie and Stuart were great to let this difficult time be filmed and shared, I think they did a fantastic job! Below is a trailer and the link to watch the whole programme



Link for BBC IPlayer - click here

My Little Munchkin

Sorry for lack of blogging, I know know....!

I finished my IVs two weeks ago and my lung function was 42% so back to normal and I felt alot better. The Doctor and I have agreed I am going to start one month on and one month off Tobi nebs again to see how I cope, its to do with costs and how toxic they are, plus the time they take. I must admit the last two weeks have been wonderful, only having three nebulisers to do rather than five! I am worried though that when I go back in December my chest may have suffered as a result, not good so close to the busy festive period!

The day after I finished my IVs I felt terrible, I was so tired and my whole body ached. The thought that my IVs hadn't worked made me so miserable I just curled in a ball and I slept most of the day because of the tiredness. Then the next day I felt great! As I was driving back from yoga I realised I'd had my flu jab when I finished my IVs and that is what has made me feel so tired and achy! I have never felt like that before with a flu jab, so it must just be this years vaccine for some reason.

Two weeks down the line and my chest isn't the best but I think most of it is down to the weather becoming colder, I took Alfie for a 40 minute walk yesterday and my chest hurt the rest of the evening, it felt like it was burning and I must have loosened lots of mucus as I coughed all evening. This doesn't help my shoulder and upper back situation, they've been sore for about 10 days and it hurts so much when I cough. I don't know if I have pulled something or what but if it hasn't gone by my next outpatient appointment I'm going to mention it.

The hole in our ceiling is finally fixed! However we decided to decorate the bedroom whilst it was empty, so we are still in the spare room until next week. My mum has done the wallpapering today and I've finished off the paint, half the glossing is done so we are nearly there, this week has been tiring and I haven't even done that much!

I don't know if I mentioned on here but we are doing some behavioural training with Alfie at the moment to try encourage him to be more sociable. We are doing BAT (behavioural adjustment training) with teaches him to think before he acts, easier said than done! We also have a sounds CD to desensitize him to sounds that scare him such as fireworks, traffic, children etc. Not really sure how well it is going but I'm trying my best! Here are some pictures of my little munchkin as requested, aw I love him so much!

On our walk yesterday

All snuggled up in my blanket, he likes the cold weather about as much as I do!

Catching some rays whilst he can!

Fantasies

I want to thank everyone that commented on my last blog post, I think I've had writers block for a few months and felt my blog was getting slightly boring, but I guess that's CF in a nutshell and relates to my previous blog, CF is boring and is very repetitive!

The post wasn't a cry for help, it was just thoughts I had that I wanted to put down in writing and sort out in my head. Sometimes once I start to write them, it starts to make sense why it is how it is and I can apply some logic to how I'm feeling. I know my family and friends love me, that's why I hate it when I have these panicked moments where I think nobody gives a damn about me. The world and relationships aren't perfect and sometimes you have to learn to deal with it along with everything else.

Today I'm stuck inside with not much to do as our house has stuff everywhere, I am going to go crazy! Our bedroom ceiling is finally being fixed so we had to empty the room out completely, which means there is a dressing table and drawers in the kitchen and an extra bed and other junk in the spare room. I had to get up at 7 today (after getting up at 6.20 to put IVs on and going back to bed) to try to be ready for when they arrived which I failed at miserably, the electrician arrived at 8.15, I mean who works that early?! Luckily Pete was still here as I was about to get in the bath. The electrician left and so did Pete and then I frantically tried to be ready for when the plasterers arrived in 10-15 minutes. Not easy when everything is dotted around your house! I'm happy to say I was dressed and even had some makeup on by the time they arrived. So now my home is taken over by men and I'm hiding in the living room trying to stop Alfie barking every 5 minutes, I think we shall escape at some point to go for a nice walk!

I am so excited about finishing my IVs on Wednesday, I fantasize about getting my dressing off my arm and my eyes looking normal again. They won't stop weeping and are all red like I've being crying, they are dry and I want to itch them all the time. It's driving me insane! My skin near my armpit has gone all sore so I've had to sort out my dressing for my needle so there are no sticky bits on the sore part, this means I have loads of padding going all the way under my armpit. Again, driving me crazy... want to itch, want to itch, ohhh I can't wait to rub some moisturiser on it! I woke up Friday night and I'd ripped some of my dressing off in my sleep, oh hello top of needle poking out and hello having to try sort own dressing out at 3am with one hand, how fun! SO yes very excited for Wednesday!

The Lonely Disease

When you have CF and you are on your Ivs, or feeling unwell or anytime really, you soon come to the realisation that this doesn't change much. If people are under the illusion that family and friends offer to cook you tea, do your shopping, take you out etc like they would in a film then you are mistaken. People don't rally around to help you or to raise money for a charity, they don't feel inspired to do anything extra because of your illness and the difficulties it causes. Pete is the first person i've known since I can remember to raise money for the CF Trust. In Emmerdale last night the whole village was seeing if they could be a bone marrow donor for Sarah, I doubt this happens very much. My own husband doesn't donate blood, his choice, I can't make him and I'm not going to nag him because that would be me pressuring him to do something I wish I could do myself (I can't donate blood or anything, I've researched it). Most people I know are on the organ donation list, least that's something!

There is a part in the film 'The Beach' where a guy is taking ages to die and the main character says 'You see, in a shark attack, or any other major tragedy, I guess the important thing is to get eaten and die, in which case there's a funeral and somebody makes a speech and everybody says what a good guy you were. Or get better, in which case everyone can forget about it. Get better or die. It's the hanging around in between that really pisses people off'


I think people with long term illnesses are like this, people are supposed to die or get better. But we don't do either, we sit somewhere between, keeping going but never quite one or the other. This confuses healthy people, they don't understand it as they have never experienced it. They judge people with long term illnesses and make assumptions. He/she seems to manage OK, he/she doesn't seem that ill, he/she wants to be treated like a normal person, he/she is stronger than other people. I probably do it myself about others such as elderly people or people with children, I assume they are managing although I would try to never be judgemental about something I don't know about.

I imagine when I was first diagnosed with CF, my family were worried and anxious, eager to help out how they could. As years go on it just becomes the norm, people become complacent, one of my brothers doesn't seem to even acknowledge I have CF and if I mention it he thinks its some kind of excuse I'm using and sighs at me. I feel I have to push all the time to remind people, even my own husband who lives with me and sees how much I have to do, how tired and ill I can be, he sometimes expects me to be able to do everything I need to do, as if I have become immune to feeling exhaustion and pain over the years. Like I can push it aside and be tired when its convenient.

We went to a surrogacy social event on Saturday and stayed over 2 nights, being on my IVs made this day very stressful and non stop for me. I was exhausted on Sunday and still am to some degree, nobody even appreciates how much effort went in to me making that social event, but why should they? To them I was there just like everyone else. Why do I even want them to appreciate the effort it took? It won't make a difference to anything! I guess I feel like my achievements go un-noticed because to others they are nothing, but to me they are everything.

My eyes are so puffy and red and my headaches are clouding my mind and incapacitating me. I've asked to not be put on ceftaz again unless really required, I always say I will take it easy when on my IVs but it never seems to happen even though I don't seem to do much! Why do people always seem to ring you when you are trying to have a sleep? Why do I feel like people are calling me all the time, but the phone call is never to see how I am or if I need anything?


At the end of the day people like me are supposed to be dead, if it was survival of the fittest I'd have been gone long ago, even though I think mentally I am stronger than most. The thing is, I can do it on my own because of my strength. I can't remember the last time someone came to a hospital appointment with me because I don't need anyone to be there, I don't need someone to do my physio or tell me to do it, or do my IVs for me although Pete often offers and do you know what, its great when he does, to not feel alone in this quest for me to feel better. To know I could do it if I needed but the offer to be there to make things a little easier. My Nana pays for a lady to come and clean our house every week, its one of the best gifts anyone has every given me, not just the cleaner itself, but the recognition that I was struggling with the cleaning.

I like that I am independent most of the time, I don't want to rely on others to get me through, it's my CF and my responsibility, this makes it hard for me to ask for help and its mostly my fault as I don't ask. The thought of going in to hospital and someone else taking over my care frightens me as I know whats best for me. I like people see me as managing and getting on with life because that's my aim. I suppose I just wish that I didn't feel so lonely, CF is a hidden disease but also very lonely at times.

Nana

Started IVs yesterday, i'm on Tobramycin and Ceftaz like usual. My lung function is down to 37%, weight is 56.8kg, not sure if that's down/up, not really interested! Got a headache yesterday and woke up with one this morning which paracetamol doesn't seem to be shifting, hoping it will settle down, really can't face having headache for 2 weeks.
I'm taking ondansetron for sickness, certirizine to try prevent me getting sore, puffy eyes and i've also started a 5 day course of aciclovir to treat a coldsore that popped up to say hello on Tuesday morning.

The nurse came from calea this morning to do my tob levels, this is to check the levels of tobramycin in my blood after the first dose, as too much tobramycin can make you loose your hearing.

Found out today that my Nana was admitted to hospital last night, she is currently having chemotherapy as she has terminal lung cancer but her platelet count is very low (it should be 150 and I think my mum said it was 39) so she is having a transfusion. It's bad enough that we know her cancer is terminal and her treatment is to give her longer, but now she might not even be able to have anymore treatment so it's very worrying, my Mum said they will find out next week. So fingers crossed the news isn't bad next week as so far my Nana hasn't had good news and I think she deserves some.

My Nana, Mum and I when we went to London for my Hen Night

10 Things Not to Say

Someone posted 10 things not to say to someone with a long term illness on facebook, I thought it was quite good. Here they are:

10. You can't be in that much pain

There is always some problem I have with my body whether it be constipation, getting breathless, needing to cough, having a headache, my body aching etc. If I were to display to people every problem I had, I wouldn't be a very fun person to spend time with would I? I don't learn to 'ignore' my problems or 'get used to them', I learn to live with them because I have no other choice.

9. Stop being lazy and get a job

Trust me, I'd love to have a full time job and the wage that comes with it. Do people think I really enjoy sitting around all day, feeling useless? Getting a degree and not being able to put it to use? Seeing my friends have lots more money than me and talking about how great their jobs are? My illness is my job and trust me its not easy, I never get a day off. Remembering to charge things up, get IVs out, send off prescription requests, get my port flushed, waiting in for deliveries, picking up prescriptions, going to the hospital, planning physio and nebulisers in to my day, remembering all the tablets I need to take, trying to park close to where I need to be, holding in coughs, cleaning and sterilising nebulisers, remembering how many times i've been to the toilet!
Oh and I'm not lazy at all or at least I don't think I am, try doing everything on about the amount of energy you have the day after a long night out or when you have a cold.

8. You just want attention

Yes I have a life threatening illness and have known 20+ people die from this illness before their 30th birthday, just to get attention.... If anything I hide my CF from people and they have no idea how serious my illness is

7. Your illness is caused by stress

I'm not going to even address this, we all know CF is genetic

6. No pain... no gain!

Erm whats my gain? Will my CF improve or go away? Will I get a reward for having CF? If you go to the gym and work out you get fitter/more muscly, if you give birth you get a beautiful baby. Say this sentence to those type of situations please.

5. It's all in your head

Look at my medical records and tell me that, pretty certain my head didn't make me produce loads of mucus and give me lung damage or infections...

4. If you just got out of the house....

I take 2 meanings to this one
A) As in fresh air or speaking to people is going to cure me - I get out plenty thanks, in winter its not nice when I piss myself because I'm coughing so hard due to the cold!
B) As in because I can get out the house, I mustn't be that sick - I always have my illness, I have to learn to function with it. Its not a cold, I can't stay in bed for a few days and then get on with my life. Just because I can take the dog for a walk or drive to the shops, it doesn't mean I'm fit as a fiddle.

3. You're so lucky, you get to stay in bed all day!

Really? Would you really want to do that every single day? I know I wouldn't and p.s. I don't.

2. Just pray harder

If anyone said this to me I think I'd punch them

1. But you look so good!

People with illnesses do not have to look ill to be ill!! Why is there this belief that to be genuinely ill you must look it?!

Keeping Cool

I finished the cipro on Monday and I can't say I'm feeling any better, worse if anything as I had forgotten that cipro has nasty side effects like all over body aching!

I'm not extremely ill or anything I just feel like I'm in trance all the time. You know when you drive somewhere but you turn off and wonder how you got there without crashing, that how I feel all the time. I'd doing the motions but my mind isn't contributing as much as normal, its like I'm outside of my body so I can't feel how exhausted I am. I think this can give a false perception of how I feel as I'm still doing everything I need to so from the outside I seem OK, and if I really need to I can switch my brain back in to gear to have a short conversation etc. I think it's some kind of technique I've established to get on with life, if you turn your mind off it uses less energy I suppose! I have less battery power so I reserve it for daily tasks. I don't feel like this all the time so i know it's not normal.

I also keep getting a sharp pain in my right lung that passes after a few seconds. However when its there it's not nice and it's usually when I need to cough and it hurts so much to take a deep breath, which you need to do to cough. It happens more when I lay down, no idea why!

In addition to this I know my chest is struggling as I'm breathless easier and my shoulders and neck ache constantly. I can tell my posture has worsened and this is because when you struggle to breathe your body makes you hunch and lift your shoulders as this makes it easier somehow. I don't even realise I'm doing it, I'm trying to sit up straight but it makes it ache more and if I try to relax my shoulders and move them away from my ears, they go back up as soon as I stop thinking about it. I could do with a really good massage by someone qualified but I don't think I could afford it as I think sports therapists are quite expensive and I don't know if it would help really.

So I called up yesterday to start some IV's, I'm fed up and just want to feel less like a robot and faster than a slug!

I'm starting my IVs next Wednesday, they couldn't fit me in this week, a sign that they are busy! I have to cancel my flu jab as can't have it whilst on my IVs, thankfully the CF ward have started doing them again though so I don't have to try book another through my GPs, it's a total nightmare! The CF ward stopped doing them for a few years to save money, however I think they may have realised lots of patients don't get them if they have to go through their GP and it ended up costing them more due to increasing numbers of inpatients during winter and patients requiring home IVs! That's my theory anyway!

IVs create a problem for me as we are staying in a hotel for 2 nights whilst I will be on the IVs. The hotel is paid for with no refund and we have bought the tickets for the surrogacy UK AGM already, plus I really want to go. The hotel rooms don't have fridges but thankfully have baths and I've requested a room near reception to make things easier for me. I looked at buying a portable mini fridge however the minimum temperature they reach is 18 degrees, how can that be classed as a fridge?! So I've borrowed a cool box off my dad and going to test it out to see how cool it stays over 1-2 days, the drugs need to be kept at 2-9 degrees so failing that I'll have to see if I can keep my IVs in a staff fridge! I'm slightly nervous about everyone at surrogacy UK seeing my needle etc but to be honest I'm sure it will be covered anyway by a cardigan as it's not exactly warm is it?!

Transplant Programme

There was an excellent programme on last night about organ donation. It showed the points of view from the family of the donor, a 65 year old lady and the recipients who received her heart, liver and kidneys. I thought it was put together very well and explained the process great, it also showed how the donor is treated with respect and how important it is to let your family know of your wishes as it is them who have the final say.

It made me feel honoured to know people who have been part of this journey and how many people are involved to try and help save a persons life. It made me realise how difficult it is for the families who agree for their loved ones organs to be donated, but also how proud they felt when they received a letter telling them how many lives had been saved.

Its not an easy watch, but worth it.

Click here to watch

All Clear

Well I relieved to say my constipation problem has finally seemed to sort itself out. The day before Pete did the Great North Run I felt terribly blocked and bloated so after emailing a CF friend for advice I took 6 movicol together and 2 senna. Then the next morning I took another senna. I was slightly worried I could have a problem since we would be outside all day with only port-a-loos! But nothing seemed to happen. Then that night I took 2 senna and 4 movicols. This seemed to get things going and then I have gradually reduced the number of movicols, I'm now down to 1 movicol and 2 senna each night. I'm going to try have the senna alternate nights but we'll see how it goes. The Doctor says this is fine and to do whatever I want really as long as things are moving along.
So my suggestion is to take up to 8 movicols in one go if you are blocked up ( take at night), slowly increasing the dose doesn't seem to help. Just give it a blast and then slowly reduce the sachets.

Last week I did a presentation at Scope, I did it about 2 years ago and was asked to do it again for new mentors. I just used the same slide show but updated a few things, mainly the bits about people I know with CF as some have sadly passed away and others have had transplants. I managed to print the handouts in the office from the usb stick but then the usb stick would not work in the projector laptop, so we tried it in 2 other laptops including the one in the office I had just used and it wouldn't work in any! Nightmare! So I had to do the presentation from the handout which was disappointing since some of the pictures were not very clear on it. It always amazes me how little people know about CF, one guy said he didn't realise it was so serious, nearly everyone had no idea how much treatment is involved. So I'm glad that I can help try educate people.

Pete and I took Alfie for some behavioural training on Sunday which was interesting. Alfie can be funny with strangers, children and other dogs and we were thinking of having him neutered to try help with the problem. The vet told us we would need to incorporate it with some behavioural training so I contacted the place were we took him for his dog training classes and they referred to the behavioural specialist. She says not to get him neutered until she has assessed him as it could make him worse. We had an hour with her on Sunday and then we get 3 follow up sessions, which will involve her bringing in a dog to teach Alfie how to behave with them, also we will use a doll that makes baby noises to get him used to children and teach him how to behave around strangers. The good news is that he is not classed as aggressive, he doesn't just go around attacking people, I think she used the term 'highly reactive' haha. People who have met Alfie will laugh reading this because he can be a little bugger and has a reputation, but I've always argued he isn't aggressive, once he knows people he is fine and so loving and gentle with them and eager to please. Anyway we have some tasks we need to do before our next session, so fingers crossed it helps Alfie become a less stressed out doggie!

I had an Outpatients appointment yesterday and have started some oral ciprofloxacin as I think I have picked up a virus. I'm waking with a headache every day, sweating loads in the night, feeling tired, getting breathless more easy and my sputum is thicker. You can tell winter is coming, I hate winter because I catch every damn cold going and need IVs! Fingers crossed that isn't the case this time.

My lung function is slightly down to 41% from 43% which apparently is stable (it annoys me when they say that, a small decrease in % means more for me as it never moves too dramatically), I weigh 57kg (yikes, fattie!) and all my annual blood results came back OK. From what I recall they test all vitamin levels, iron levels, if I'm anemic, my crp which is your infection level (mine is 17, it should be below 10 but mine never gets below 10 apparently), my aspergillus levels (fungus) both of which are higher than they like but mine never get to those levels (why am I not surprised), my thyroid hormone level, calcium level (slightly low) and blood sugars. That's all I can remember! I have been given permission to come off Voriconazole for good now until my symptoms start to reappear so that's good news as the side effects were getting worse with each course of treatment!

By the way, we still have a hole in our bedroom ceiling and so still sleeping in the spare room. The insurance company are taking forever!!

The Bupa Great North Run

Well its finally over! 2 hours and 31 mins, 13.1 miles and Pete completed the Great North Run on Sunday. He has raised over £600 for the CF Trust. We are all so proud of him! It was a long day and a long drive home due to all the traffic, but very enjoyable and I'm glad we went to watch him at the finish. He is already talking about doing it next year! Thank you to everyone that sponsored him, your donations kept him going and made it worthwhile! If you haven't sponsored him yet and would like to now the race is complete there is a link at the top right-hand side of my blog where you can visit his page and leave a donation.

2 Years Later

Well I had a great weekend last weekend and I swear I should get a medal for how compliant I was with my treatment and it wasn't easy I tell you! On Friday we went to a wedding and had a great time and then on Saturday we had a surprise birthday party for my Nana as it was her 80th Birthday. She was so surprised especially since her two sisters had managed to make it over, she cried and everything so I think the surprise went quite well! I spent Saturday night and Sunday very tired and asked my brother to hint to my mum we would like to go around for tea, his hint went something like this 'Gemma and Pete want to come around for tea', it worked anyway!

Here are some pictures from the wedding


Some pictures from my Nana's party

My constipation has been getting worse and worse, I was up to 4 movicols a day and nothing was happening so on Friday I gave the hospital a call. I had to go in so they could have a feel of my belly and this confirmed I was 'full up'. Because I wasn't sick or getting extreme pain they didn't prescribe me the really strong stuff, they prescribed me Bisacodyl, 2 to be taken at night to clear me out. I have to cut it down to 1 a night after 5 days and then move over to senna after another 5 days. I've come off the movicol for now as its clearly not working. I used to take senna before movicol and came off it for some reason, no doubt I will find out in a few weeks time. The next day I went to the toilet alot, but since then not much else has happened apart from last night when I woke up in extreme pain, like my stomach was in knots, it hurt so much I was crying. I'm still extremely constipated, my stomach looks so fat and horrible, it doesn't help that when I was weighed on Friday I weighed 58.2kg, its the most I've weighed in about 5 years! So I'm really fed up at the moment and just want it to get sorted out.

On Saturday Pete had a 'little' accident when clearing out the loft in preparation for the loft insulation next week. I'm not happy sleeping in the room as its quite dusty and stuff keeps falling out so we are sleeping in the spare room in a 3/4 bed, its cosy! Pete tried to call someone today to come out a take a look but he hasn't got back to him, so not sure what we are doing next.



On Sunday it was our 2nd Wedding Anniversary, can't believe it! We went to Wentbridge House (where we had our wedding reception), I think we both looked alot more glamorous two years ago! I must have been doing this blog a long time as when I first started I wasn't even engaged!

Forward Planning

The last few days I have being wheezy at times throughout the day, there doesn't seem to be any kind of pattern. Then this morning as soon as I woke up I started having a coughing fit and coughed up a big, hard black piece of what I can only assume is fungus. I really hope the fungus' on my chest aren't starting to play up again, I have taken voriconazole for 2 years now and have increased the gaps between treatment. Last time I managed 12 weeks and was hoping that I could now come off it completely. The side effects of the voriconazole seem to be worsening for me, when I'm on it I get headaches all the time, light hurts my eyes and I seem to need to wear sunglasses all the time when outside and some of my hair seems to fall out, therefore my hair is thinner. I can carry off the sunglasses because I'm so cool, but I don't like the thin hair and I especially don't like headaches, sitting with my head under a blanket to make it dark is not my idea of a fun day.

I seem to busy lately but I couldn't tell you what doing. I am doing lots of reading as I'm obsessed with the Song of Ice and Fire books, I'm on book 3 now and if I don't get my fix of Starks, Lannisters and Tygarians every day I am very upset! I am also trying to walk Alfie everyday although this doesn't seem to be happening! Yesterday my car had to go in for a service, as you can see its boring stuff so I won't bore you anymore!

On Saturday I had to pass on a night out, as this weekend coming up is a busy one and I didn't want to be feeling ill. I find every time I go on a night out in to town it takes me forever to recover and often I end up on IVs because I catch a virus! It tires me out so much, the talking loud, the walking around, dancing, the alcohol, going to bed late. I do enjoy going on nights out but I decided to be sensible since I have lots on this weekend and I also went to a house party last Sunday. There was no way I could go out Saturday night and then go to a house party on the Sunday! So instead I met my friends before they went in to town, then when they got their taxi at 10pm I went home like the boring person that I am! They kept asking me though, 'why aren't you coming' 'just don't drink', I don't think they understand that I have to keep a balance to try stay well, people just don't understand what it's like. I always say the worse thing about CF is the lack of energy and tiredness, I just simply can not do everything that other people can do. My energy levels are lower and tasks use more of my energy, then on top of this I have treatments to do everyday that use lots of energy. Imagine breathing through one nostril all the time, how much more work walking up those stairs would be or even just coughing which I do more of than the average person! I'm glad I was sensible though as now I can enjoy this weekend coming up.

Sophie gets some new and improved lungs!

Sophie received her double lung transplant yesterday! She has being living in hospital for weeks and weeks as she was too ill to come home, I'm so happy she has got her call and got those new lungs. She wasn't waiting too long either which is also great! I hope everyone who needs a transplant doesn't have to wait years to get that chance at a better life, all it needs is more people to sign up to be organ donors. I'm thinking of her lots today with a big smile on my face, however there is also that worry as the new few days will be really important, I know she is strong enough to get through them though!

Wee, Blood and Poo plus Other Things Too..!

I can't believe I finished my IVs over a week ago and haven't updated on here, bad Gemma!

Finished my IV's last Monday, my lung function was up slightly at 43% although it was all a mess really. When I started my IVs my lung function was 38% but then when I ended IVs the figures didn't match and the physio discovered that when I started my IVs I'd been put into the system as male! Males should hold more air in their lungs than females so when my percentage was worked out, it was lower than it actually was, it was in fact 41% at the start of my IVs.

I had lots of blood taken as they did my annual blood assessments. I had to fast from 9pm the night before, why when you can't eat do you want to eat everything?! They took about 30 tubes of blood, they test for everything such as if my blood clots properly, my vitamin levels, iron levels etc. So that was needle number one in my arm (they can't take the blood from my port for some reason). I then had to drink a pint of the one of the worst drinks in the world, its basically glucose and it makes me want to be sick. Even worse you have to drink it within 5 minutes, just thinking about it is making me feel sick! Then you wait an hour and they take some blood from you. So this was needle number two, apart from the vein wouldn't bled back so she had to try somewhere else, so that's needle number 3 and in my wrist which is nice and boney so not the most pleasant place for blood taking. Then you wait another hour and they take some more blood, so needle number 4 in my other wrist. Needles don't even bother me that much anymore to be honest, the little ones for blood are only a prick, I don't even mind big ones that much if they are going in my arm, there are worse things in life. I'm not sure how I'd feel about having needles in other areas though! After this blood test, you can finally eat!! This test is to check you are not diabetic, its called a glucose tolerance test and I got my letter today to say it came back fine and I don't need to be tested for another year. Yeay! I also had a bone scan whilst on my IVs and I got a letter the other day saying my bone density has slightly improved since my last scan, so that's good news!

I also had a chat with the Doctor about my bladder problems, I have two problems really. I go to the loo far too much, up to six-seven times during the night and many more during the day. I also have stress incontinence, this is a polite way of saying I sometimes wee when I am coughing hard. It's not nice, its embarrassing, even talking about it to a physio and doctor, I think that's why they have a nice name for it! It's very common in CF though and they have started asking patients about it more often as they know they are too embarrassed to bring it up. The doctor is not sure if my two problems are related or not, if I have stress incontinence this means I go to the toilet often to try prevent it, so before I do my physio, before I go out anywhere etc. This could mean my bladder has reduced in size and therefore I need to go to the toilet more often. The stress incontinence could also be irritating my bladder. Or I could have a bladder problem that I need to see a specialist about.

I have a leaflet with some exercises to do, that was fun practising doing them with the physio...! They are exercises to try and strengthen my pelvic floor muscles, so that when I cough I won't have a problem! If they don't help then they will refer me to a specialist. However now I know I should be going to the toilet less, I have been doing so and I think I am already improving slightly. I keep forgetting to do the exercises but try to remember, 4-6 times a day is a lot to remember amongst everything else!

Here are the exercises for those of you too afraid to ask your CF team!

Type 1 -Basic exercise, can be done in any position

-Squeeze around the back passage as if trying to stop wind escaping, at the same time squeeze in front as if trying to stop the flow of urine
-You should feel a squeeze and lift, a drawing feeling inside - this is a pelvic floor contraction
-Hold this squeeze and lift for a few seconds (up top 10) then relax, repeat a few times (up to 10)

Type 2 - Quick contraction

-Do the same squeeze and lift, but relax immediately
-Allow a few seconds for the muscle to relax completely then repeat up to 10 times

You must do both types 4-6 times a day.

Do not exercise by stopping the flow of urine in midstream; this can affect the normal working of the bladder.

Bladder Advice - Aim to empty your bladder no more than 7 times during the day and once at night, avoid going to the toilet 'just in case'

Since I finished my IVs I haven't felt back to my normal self to be honest, I'm still tired and very breathless at times. Yesterday was terrible, however I have had some problems with my nebuliser as the company are idiots and don't send me disks in time (that you need for the I-neb to work) and I have had to miss my nebulisers. Luckily a CF friend saved me (thanks Woody!) and posted me a disk to keep me going and I now have the disks from the company after ringing up and having a 'talk' with them. I also still have constipation, I've had it on and off now for about 4 weeks. I can't seem to shift it (literally haha), every time I reduce my movicol dose to my usual dose it comes back and I have to up my dose again. I don't think this is helping with how I feel as it makes you feel so sluggish and bloated and even sick at times. I think I'm going to have a higher dose for another week and then try and reduce it slowly again. I can't decide if it's worse to become reliant on movicol or to become blocked up!

I went swimming last week and managed 22 lengths, so was pleased with myself. But haven't felt up to it this week, I'll go to yoga tomorrow and hopefully next week I'll feel up to swimming again!

Sorry if this post has being too informative about particular areas, but at the end of the day this is a CF blog and people with CF have problems with practically every part of their body. Most of these issues are not suitable for small talk... if you don't have CF and are reading this, be grateful it's not you who has to describe your poo to a doctor, talk about your toilet habits with them or inspect your sputum with the physio. For people with CF it's quite normal and required, so I guess we become accustomed to it!

Happy Yorkshire Day!

Ah smelly wee, constipation, dry itchy skin, sore, crusty eyes, wanting to sleep all the time, thrush, daily headaches and sweaty nights, that right it's IV time! One week in and the tiredness is slowly reducing after me basically hibernating for a week and the other side effects are going up now the drugs are well and truly into my body.

I fell asleep one afternoon last week and seriously I could not wake up, I was actually laid on the sofa thinking 'Gemma you need to wake up, you are covered in sweat and you need to make tea' and I tried to open my eyes and they wouldn't open, it was like they were made of lead. So I went back to sleep and tried again, and again and after about 4 attempts I finally opened them and realised I'd slept for about 4 hours. I've slept like a log every single night, even Pete's snoring hasn't bothered me, but I've woken up at 5.30am every morning which is rather convenient as I put my IVs on at around 6am. I've then slept again until about 10am.

I've got a headache every single day, mid afternoon time, in fact I'm probably due one now. I got a lovely one yesterday that only went this morning once I'd been awake an hour or so. Yes I am taking pain killers and sometimes it gets rid of it, sometimes it doesn't.

I also realised I have constipation on Saturday after thinking I was just getting fat over several days. I had stomach ache on Saturday night and then Pete said something or other about toilets and that's when I put two and two together and realised the problem! After a few movicols I'm feeling less fat now!

So yes IVs are upon me and I have one week left now of the joys they bring, then I can return to normality were my pee doesn't stink like cats wee, I can wear makeup on my eyes and I can sleep without waking in a pool of sweat.

On the plus side, the cold seems to have buggered off and I'm coughing a lot less, so objective achieved! I'm also eating like a horse (where does this saying come from? Do horses eat a lot?) which will keep the dietitian and Asda happy..!

Its Yorkshire Day today so Happy Yorkshire Day to all you lads and lasses!
Here are a few Yorkshire words for you: ginnel, lug, larking, reeks, kegs and my very own word I created 'wang', oh and apparently 'foisty' is a Yorkshire word but I think Pete is lying!

4 Months Lucky

Oh dear, how can things go wrong so quickly?!

Last Thursday I started with a headache that decided it was going to stay until Sunday, so I was taking pain killers religiously to keep it under control. We took our nephew to LegoLand at the Trafford Centre on the Friday and had a great time, here are some pictures:

On Saturday night we went out for a meal with some friends we have made at Surrogacy UK which was really nice, we haven't seen anyone for awhile due to a lack of socials so it was nice to have a catch up. Then on Sunday Pete was as the cricket all day and I just had a relaxing day as I'd had a busy week and just wanted to get some rest!

On Monday morning I woke up and felt like someone had punched my face, my whole face was throbbing, my nose, around my eyes, the top of my head, it was horrible! I called the hospital and told the Doctor I thought it was my sinuses as I'd had a headache for 4 days and now my face was throbbing. He agreed to post me a prescription for Amoxicillin since my chest was OK for the minute but to call if my chest started to become a problem.

By Wednesday (prescription still hadn't arrived, they send them 2nd class!) I was not feeling good at all, chest aching, lack of energy, runny nose, coughing lots, sweating during the night, having problems sleeping, I've had to sleep propped up the last two nights just so that I can breathe properly and I've taken kalms to help me sleep. On Monday night I was hallucinating and hardly got any sleep, it was so scary! I saw a big dog on the bed, a spider dangling from the ceiling onto the bed, at one point I thought Pete was just laid there starring at me, he wasn't at all, he had his back to me! Another time I thought he had all rags in his hair, then I saw the room was full of leaves and at one point the light in the room was flashing. I've never experienced anything like it! I think its the Voriconazole, as I started that on Sunday and it says it is one of the side effects, I've never had it like that before though!

So surprise surprise I am starting IVs on Monday, its the earliest they could fit me in, wish I was starting earlier to be honest, Monday seems ages away! I've had to cancel my mentoring session this week that I volunteer as at Scope and I also had to cancel my meeting to start up the Scope Mentoring blog again. I'm just sat around not doing much, yesterday I had a bath instead of a shower as I felt too tired to shower, I wore my tracksuit bottoms, a sure sign I'm feeling bad! I had to go to Tesco to get some food and it was raining very heavily, no surprises that the disabled spaces were taken by people without stickers, always happens when it rains! Coughed my guts up walking around the shop, at least people get out of my way... was drenched by the time I got home. Bet I looked a right sight, never mind....!!

I've gone 4 months without needing IVs, so I've done well, my average is 3 months. So I can't complain, bring on the IVs!

PS - I have been having problems leaving comments on other peoples blogs, so if you are having the same problem, try unticking the 'save my details' box

Wonderland

On Saturday it was Pete's birthday, he is now the same age as me again. I don't like that few months gap where I am older than him! I'd already bought Pete some clothes for our holiday back in May as part of his birthday present so he wasn't expecting anything from me, however I got him some surprise tickets to go see Jack Whitehall (a comedian) in November so think he was pleased!

On Saturday night we went to someone else's birthday party, it was fancy dress, Alice in Wonderland theme or wear a funny hat. I went as Alice as Tori lent me her outfit which is currently getting disinfected to return back to her. If you remember, Tori got a lung transplant last year in May and I don't want to give her any of my infections, so I am cleaning the outfit with Vanish oxi hygiene which claims to kill 99.9% of bacteria, it's in the washing machine as I speak after having a soak for an hour. Pete was boring and wore a hat or mine, he ended up looking like someone from N-Dubz haha!
Then on Sunday we went to the Lakes for a few days away, we are so lucky that we can go to the Lakes as many times as we like, within reason of course! Alfie can come with us and it doesn't really cost us anything. The Lakes will always hold a place in my heart, its where we got engaged!

The walk we went on, on Monday was too long, I over estimated myself and had strop half way as I was too tired and my lungs were on fire. The walk was on really rocky ground and it was so tiring, poor Alfie struggled at times and had to go in the bag for a rest at one point. Sadly I didn't fit in the bag and Pete had to give me a telling off when I refused to go any further. We turned back once we saw a hill we had to walk up, no way was I going up there, Norman let us down this time, the walk was poor and was not on the level! To finish the day off the pub we really like and was looking forward to going to, doesn't do food on Mondays (!) so we tried this other pub and the food was rubbish!
However Pete and I are not ones to be put off, so we tried another walk on the Tuesday, shorter and alot more friendly! I have learnt my lesson, my body and lungs will only allow me to do walks of 3 miles or lower on level, none rocky ground!
Needless to say I am exhausted now. I think overall I have spent more time sleeping this week than not, I've woken up at about 10am or later every day and slept in the car when travelling whenever possible! Even though walking totally tires me out, I like to go on walks as it reminds me that even though my body is poorly, I can still breathe and walk and although not as good as others, I'm alive and functioning! Feeling tired means I know I have tried my hardest and I've pushed myself, I suppose its a feeling of self satisfaction like someone who does a sponsored run, its my version...! In a way if I don't feel tired I feel like I'm lazy, it's my way of knowing I've done all I can for the day.

Pete has taken the rest of the week off work and today we have bought some plants for the garden and planted them. We bought a strawberry plant, I know it will probably die within a month as I have no idea what to do with it, but it will be fun to try..! I wore a mask when digging in the compost as I've read lots of bacteria are in there including cepacia which is a CFers worse nightmare from what I've heard, patients with this on their lungs aren't even allowed on the CF ward! So call me paranoid but I wore a mask left over from when we decorated.

First Knitting Projects

Last Friday I had outpatients, it went OK. My lung function was fev1 40% fvc 51% and my weight was 56.8kg. The dietitian gave me some long speech about how putting weight on was good and all studies show people with CF who have better weights do better overall, she said the ideal bmi for a female with CF is 22, mine is just over 20, I can't imagine it being 22! I told her I had no plans to loose any weight and wouldn't know how to anyway so she can relax!

I told the Doctor about my aching and bladder problems, he did a few things with my legs and basically has no idea what could be causing these things. My last glucose tolerance test a few months ago was fine so he doesn't think its diabetes. I did a urine sample and I am due my annual bloods so they are doing those next time. Annual bloods is where they take loads of blood and test them for almost everything or so it seems! You need to fast beforehand though so they couldn't be done that day. I had my port flushed and they did take some bloods to test my CRP (measurement of infection) and glucose (sugar levels) to check everything is OK, my port bled back! Yeay! I have also been referred for another bone scan as since my last scan showed some deterioration, they wanted another test done in 6 months.

At the weekend Pete went to Germany for a stag do so I was on my own! I tried to make plans so I wouldn't be alone and bored and so on the Saturday night I went out with one of my friends. We had a really good night but the next day I felt so tired I had to cancel going to the cinema with another friend. I did manage to go to a barbecue at my mums but when I got home and had to rush around to do my physio and get ready for the cinema, I couldn't face it!

I've felt quite crappy all week to be honest, I feel tired and more mucusy than normal. Whenever I go on nights out it always dries up my chest so everything is difficult to shift and makes me tired, people don't believe me and say its just a hangover, but I don't think hangovers last a week! I'm not really sure at the moment if I have something developing or have caught something or if its just repercussions from Saturday or just the weather!! So I'll have to just wait and see.

I missed Pete so much! I'm never letting him go away again haha! He brought me back a fridge magnet and a little yellow soft top mini just like the one we used to have! I miss that car so much!!

On Wednesday we went over to see Freya and I can finally reveal my first knitting projects! I'm glad to see the back of that blanket, things were hectic on Monday as it still wasn't finished and then when I washed it, loads of the stitching needed fixing and I just wanted to chuck the damn thing out of the window! But it looked good in the end and I hope Freya likes it! I also did a cardigan, see pictures below. Freya is lovely and her mum is doing well and looking far too good to say she had a baby a week ago!