Transplant Talk.

As I type, today marks the end of national transplant week. I've held off writing anything about it myself so far mainly because I'm terrible at writing in a serious manner. I'm not sure it is appropriate to say: 'Transplants eh.. HAAAA HA HAAAAA.' On anniversaries my husband writes beautiful moving words in his cards and I'm just 'I love you because you make a bloody great cup of tea LOL.' Whilst he's sat and really thought about his words I'm sat making myself giggle like a muppet. Imagine me as a sympathy card poem writer. Best not to go there.

Sometimes people don't quite understand what being on the list is like (why would they?) and that's mainly because I don't tell them. Having been on the list for nearly eleven months I think I can now say that it is hard work. One day I'll be okay and the next I'm crippled with anxiety that comes from nowhere, except it hasn't come from 'nowhere'. I'm on the transplant list. On a normal day I wake up and think 'I wonder if I'll get a call today' and I'll pretty much manage to put it out of my mind, maybe for a few hours or maybe for the whole day.  Other days I'll panic that I will never get a call and imagine the consequences of such a situation. What will my husband do? Will my son cope? On the same day I'll panic that I will get a call.  I'm not ready, I'm not sure I'm ill enough, what if the doctors got the tests wrong, I'm fine and it's all a mix up?

Changes to routine now make me anxious. People plan things and say 'oh we're doing this next week' or 'oh we're doing this in six months time' and a very small part of my brain will say 'brilliant' and the other big part will think 'aaaaarghhhhhhh'. That's because I find it hard to think beyond next week, never mind months into a mystical future. It is difficult and scary. If I have made plans to do something then I'll panic that I'll get a call beforehand and it will mess things up. When the plans have been completed I think 'Well I can relax now because we managed to go out without getting a call.' You get the idea. On top of that I can't foresee how tired or breathless I'll be on any given day so making plans is difficult anyway.

Trying to avoid ill people is a speciality of mine, I can't wrap myself up in cotton wool but for example the last time I had a slight cold it ended up with a hospital stay. I'm a bit of a control freak and although I try to 'control' my health by doing all the right things, it is unpredictable and I certainly can't control if I get a serious infection or if I get new lungs.

Some days I turn into Carol Vorderman (or mathematician of your choice) and try and work out the averages of when I might get another call (I've had two false calls), because you know that's exactly how it works. Other days I might do something momentous like tidying up my side of the bed and think 'Well I can relax now because if I get a call then everything is tidy.' Yes, phew. Otherwise I couldn't possibly go through with it. Sometimes I'll ask my husband if he thinks I'll get a call today and half expect a serious answer. Other days something will happen at home like the dog puking up on the floor or the washing machine flooding and I'll think 'Oh great, I bet I'll get a bloody call now.' As if that would be a bad thing.

Then I worry about becoming a 'Facebook statistic'. I have friends that have been through various scenarios with their health and their transplant outcomes are all different. You catch up on their news  through their various Facebook statuses. I sometimes wonder what my own outcome will be. I should probably come off Facebook.

Then there is the guilt I often feel about being given the opportunity of a transplant.  My son is eighteen next month and I feel I should be thankful I've managed all that time to nag him bring him up when I know there are people on the list with babies and young children.  I have days when I think I'm being greedy in wanting more. Also I'm a 'high functioning' person with low lung function. I don't need help to breathe and only have occasional oxygen. It doesn't mean I'm healthy; my lung function hovers between 19 - 21 per cent. On paper I'm classed 'end stage Cystic Fibrosis'. I don't relate that to being about me at all.  Hearing that from the doctor is odd. I feel like looking behind me to see if they are talking about somebody else.  It sounds harsh but that is because it is harsh. However in the words of my Cf nurse, when I fall I fall hard. It would only take a couple of serious infections and my lung function reserves aren't exactly brimming.

Ultimately if I don't get new lungs then I will die and quite honestly I'm not ready for that.  My time as a mother/wife/daughter etc will run out. I'm never going to be brave or inspirational. I just want to live my life with my husband, my son and the dog. I don't necessarily aspire to climb mountains or run races, I just want to live without the restrictions that my health places on me. I want to get back to work, do the gardening, walk to places without getting knackered, go shopping properly (even though I hate shopping) and I would like to have a shower and wash my hair without it feeling like I just climbed Everest. I want to laugh with my husband every day and see my son grow from teenager to man. Simple things for a simple life.  Also I'd like to wear a bra properly. When you are breathless, a bra is surprisingly restrictive and no one wants to see the effects of a non bra scenario. Oh yes and my husband often carries my bag like he's my personal assistant because I can't be expected to walk, breathe and carry. Let's not get ahead of ourselves. I fancy the idea of being able to cook a meal and eat it rather than cooking it and then being too tired/in pain to eat.

The anxiety and the 'not knowing' is the worst thing. It can be tricky enough dealing with normal life but the breathlessness, pain and worry of keeping well enough for transplant is on another level.

I'm only one example of what it is like to be on the transplant list. There are many more people with different  stories and needing different organs. Without the donors (the kindness of strangers) there are no transplants. Please sign up and become an organ donor and more importantly, let your family know your wishes. Without family consent the donation can't go ahead. Talk to your family about your wishes. It takes two minutes to sign up but it can give a new lease of life to multiple people.

Sign up here to help someone.

I'll leave you with some advice that well meaning people give to me about being on the transplant list that make me swear in my head but yet nod politely.

• You've just got to try and forget about it. Wow, I hadn't thought of that.
• Any news yet? I might have mentioned it in passing if I'd had news
• You might have had a call by the next time I see you! No words for this one.
• I bet you can't wait for new lungs. I'm not waiting for parcel from Amazon.
• You just need that call now.  Yes, yes I do. Thanks for that.
• Third time lucky Hmmmmm.
• At least you had a trial run! 
• Bet you can't wait to be all better. 
• Can't you just go private? Seriously?
• But you look so well. Do you expect me to be crawling around on the floor?
• Have you got a date through yet? Someone on Facebook (Sarah) just reminded me of this one and I've also had that said.

Over and out.

Transplant Call 2.

Call number two happened. Not in a bowel sense, I mean a second transplant call. It was 9.03 am on Sunday 7th June and Tim had just got back from dropping Adam off at work. I was busy laughing to myself at the fact my teenager had to be up and out of the house on a Sunday morning as I was starting on my first cup of tea of the day in bed. Then due to my smugness my transplant phone started ringing. Tim handed me the phone and because the number wasn't withheld like last time, I immediately thought it was a PPI cold caller (which has happened before on that phone and I had a fit of the vapours). Immediately, I was fuming. FUMING. How dare I get a PPI call on my transplant phone, especially on a Sunday morning and spoiling my smugness. Bastards. I said 'HELLO' in my most mean and sternest voice which Tim pointed out is my usual voice. So here we are.

Me: 'HELLO'  You utter wanking idiot, this is my transplant phone.

PPI Caller: 'Hello, is that Jayne?'

Me: (still in my mean voice) 'YES.'  Oh great, a PPI caller who is trying to be over friendly and somehow has my name, just wait until I verbally unleash my thoughts. 

PPI caller: 'Hello, we have some possible lungs for you.'

Me: 'Mmmmffff.'  Wow, these PPI callers are offering more than I bargained for. Oh wait. I think she said she was calling from Harefield and has new lungs, I'm beginning to doubt it's a PPI caller now. Oh. 

At this point I went into a little panic. Last time I'd been mildly panicked but at least methodical. This time I stood and repeatedly swore and went for a quick shower doing the same. I have no idea why I did that but it seemed to help. At the same time, we tried to get hold of Adam. He works round college hours at a service station Subway. Adam knew his phone was ringing but was on his own in the shop for a few minutes and had a huge line of customers. He also immediately knew that I'd had a transplant call but there wasn't a lot he could realistically do until his colleague got back. He said his hands were shaking because he realised why we were calling him. He carried on serving and one particular customer was horribly mean to him and acting like a real know it all idiot because Adam became slightly flustered. (To THAT person, I really hope you rot inside a little bit in your cock area because you are vile). Adam managed to explain to his supervisor what had happened and we picked him up. Except there is a north side and south side to the service station, we went to the north side to collect him but Adam had legged it over to south side, so we went to south side only to discover that he'd legged it back to north side. It was funny in the end, but maybe you had to be there.

On the last call, we had barely made it into the hospital car park before they had called it all off, so I was fully expecting not to step foot in the building. However, the phone remained conspicuously silent and I was admitted as a possible transplant recipient. This was a whole new experience and it felt very odd. I had bloods taken and observations etc. There was a lot of waiting and we were given an indication of what time the surgery would go ahead if everything went to plan. This felt extremely real and yet surreal. A few hours in, a man wandered in to my room picking his nose and brandishing a roll of paper. I thought he was a hospital porter. He hung back as a nurse finished whatever she was doing. Adam immediately started pretending to pick his nose with his fist trying to make me laugh. The porter then gave himself a hefty promotion and introduced himself as the surgeon. I was already trying not to giggle and the fact he was now the surgeon made it worse. Then I was in awe of him because his hands had saved loads of lives. He could pick his arse for all I cared.

The surgeon went through all the paperwork and asked if we had any questions. With hindsight, Tim made the terrible mistake of asking how long the surgery would take. Oh. My. God. Or as a the youngsters say OMG. It went like this but in a possible Swedish accent:

'Weeellllll, I cannot say 'ow long it willlll take because getting out ze lungs can take hours you know? We lift up ze chest and scoop out ze old lungs and getting out one lung can take ages because they can stick you know? I mean Jesus Christ, I could tell you eight hours and if it took twelve, you'd be having a stroke because of ze worry. I scoop them out and then there might be bleeding etc, and I can't possibly say. I mean I never like to give a time you know? Then getting the new ones in takes time and it's complex with ze chest lifted up and bypass. I don't want you to have a stroke by giving you a false time. Did I mention strokes? And blood? BLOOD.'

It's fair to say that Adam looked green at this point and Tim looked aghast. I signed the forms and hoped that Tim wouldn't have a stroke. At this point, I truly believed that the surgery might go ahead and as Adam had left the room for a second (presumably to throw up) I asked Tim to look after Adam for me and was planning on asking Adam to look after Tim. To be honest, the whole idea of them looking after each other just reminded me of the word 'chaos' but I felt I had to say something vaguely touching. Saying 'don't forget to feed the dog' seemed less moving somehow.

I digress. My bowels by this time were pleading for an actual number two but at that point the transplant coordinator breezed in and said 'I'm sorry, there's a problem with the lungs, so you can go home.'

Oh.

That was that then. I felt really angry inside and two of my friends had turned up just as we were told it was a no go. If they hadn't have turned up then I think I'd have lost my marbles for a little while. We all had a cup of tea, put the world to rights and made our way home.

This update ends quickly because that's literally how it happened at the end.

I'll keep you posted.

Over and out.

P.S. Whoaaaa. Forgot to add the most moving part of the whole day. Tim looked at his phone and the following conversation was had.

Tim: 'Can you send me a nice text or something?'

Me: 'Why? I'm in the room with you.'

Tim: 'Well just send me a text saying I love you or something otherwise your last ever text to me might be the one you sent three days ago saying "I've had three shits in two hours, I'm barely a husk of my former self."

Me: 'Oh yeah, good point. Okay,'


Over and out. Again.

Transplant Call.

Having been on the transplant list for five months I'm still getting used to being on the list and still have conflicting emotions every now and then as to whether I'm doing the right thing.

These feelings were put to the test on the morning of Tuesday 17th March when I was woken up at 5.50am by what I thought was Tim's work alarm going off extremely loudly. My initial slumber induced reaction was 'Why the bloody hell is Tim's alarm SO loud?' I tried not let it wake me up and then nagged asked Tim to turn his alarm off. Tim sat up, looked at me and said 'It's your transplant phone.' he handed it to me and I just stared at it. It was a withheld number. I immediately thought it was a mistake because it rang off just as I answered. I'd decided it was a definite wrong number. Then seconds later it rang again.

This time, a voice at the other end of the phone asked me if I was Jayne (yes), said they were the transplant coordinator from Harefield (oh dear god), asked how I was (nervous now they'd called me) and casually mentioned that they had some potential lungs for me (ohhhh, this shit just got real). I looked at Tim and sort of mouthed the words 'new lungs'. At this point I was filled with a sense of trepidation that I can't really describe. I mean for goodness sake, I hadn't shaved my legs for over four days and I had a mountain of washing to do. I asked the transplant coordinator if I had time for a shower. I was advised that I should just make my way there but have a cup of tea first. Good plan. I looked at my husband who probably felt as groggy as I did and realised that potentially everything could be about to change. We held hands through the call and it kept me calm.

Tim went to rouse the teenager which to be honest would probably be one of the greatest challenges he would ever face (waking a teenager) and then he put my pre packed transplant case on the bed. I started to chuck in every conceivable charger that I ever owned, demanded that Adam go and find me some hair conditioner then packed every single piece of make up that I have. I rarely wear make up. Why would I need make up? It seemed important at the time. I packed everything from my bedside table and my top drawer. Then I progressed to pulling some clothes on, 'what the hell do you wear for a transplant call?' were the words that I muttered to myself. I phoned my mum to tell her I was popping round to drop the dog off. The dog looked terribly confused by the early morning activity. She looked positively scared by the sight of a fully dressed seventeen year old before midday.

We somehow got everything in the car, and then Tim handed me three flasks of tea to hold. Bearing in mind Adam (teenager) doesn't drink tea, I was a little confused as to why I had to hold three flasks of the stuff. 'They said make tea,' explained Tim, 'so I made enough for the whole journey.' It was splashing round everywhere on the way to my parent's house. By the time I got to their house I was a bit stressed, tea everywhere with a dog who was so confused that she forgot to bark. This was getting more and more surreal by the minute. My dad opened the door and I instantly handed him a flask of tea, 'I can't drink all this!' I exclaimed and acted as if I was off to a clinic appointment.

Then we began the journey to Harefield hospital.

As I left the house it occurred to me that I may not actually ever come home. Having lost a few friends post transplant last year, you can't help have the occasional dark thought. It is quite sobering, especially when you're trying to remember if you locked the patio door. As our journey progressed I decided that I was ready for this. I could be home well in time for summer and enjoy planting the hanging baskets and tubs which is my favourite time of year. The positive thoughts I had at the prospect of what might be about to happen actually surprised me. No more breathlessness or pain. I've always had trouble accepting that I'm 'transplant ready' which is a totally normal response. It's apparently rare that people who need transplant actually think they need one.

When we got there, we were unfortunately told that the donor lungs were a 'no go' and they had to step down due to an unforeseen problem. It was very deflating and at that point we didn't really know what to say to each other and didn't know what to do with ourselves. We went to to the canteen and had tea (I'm not joking) and I said that we should all eat a cooked breakfast. We all ate the full works in the unassuming surroundings of the hospital canteen. It was weird. It was surreal  (the whole experience, not the food). We got home by midday and the teenager went to college and Tim logged into work.

It wasn't until the next day that it hit me. I could have been waking up to new lungs, but instead I was doing the ironing and telling the dog off for barking at the postman. Nothing had changed and yet everything in my mind was mixed up. The simple fact is that life goes on as normal and now we hope to get another call.

It took me a few days or so to recover from the experience both mentally and physically but a lot longer mentally. I was stiff and ached from head to foot for a few days and I think it was because I must have held myself funny in the car on the way there and not realised how tense I was. The main thing is that we all remained calm, even me. My main worry now is what if next time I'm not well enough for transplant? What if I don't get any more calls? Etc. I guess you can't think like that. It's easy to focus on the negative. Much better to think of the good things. Summer for instance. Tea. Cooked breakfasts.

I'll let you know if anything else happens.

Over and out.

Transplant Referral

Having recently gone on the transplant list for new lungs (due to Cystic Fibrosis), I’ve had comments that range from ‘you must be so pleased’, ‘how exciting’, ‘well done’ and ‘it’s great that you qualify for new lungs’.  I think I must be in the minority in the fact that these comments get on my nerves. Someone even commented ‘Oh, I didn’t think you were ill enough’. Well what you think and what you know are two very different things. 

So with that in mind here is the story so far.

I’d had thirty per cent lung function for a good few years and managed quite well. My body adapted to it and I’d worked round my sometimes limited capabilities. Independence is key to me as it is with anyone. I’d rather push myself than have things done for me. Why have someone make me a cup of tea if I’m perfectly capable of doing it myself? My lungs aren’t going to work well if I don’t push myself and while I have that luxury of independence, I’ll make the most of it. 

In May last year I hadn’t felt great for a few days but I knew I had a clinic appointment booked that week. On this particular day, while walking the dog and trudging round the meadow like an old woman I suddenly had a sharp pain in my chest that made me say ‘Oooh.’ Actually I said ‘fuck’ but my Mum will probably read this and I don’t need her to know I swear. The dog unaware of my situation carried on chasing squirrels. When I got home my neck felt tender so I assumed that I was coming down with a virus. When I looked in the mirror (I’m a vain sort) it looked like I’d comically swallowed an orange that had lodged in my neck with hilarious consequences. The swollen skin felt like rice krispies when you touched it. After being declared okay by a Gp, I went to the cf clinic the next morning still looking like I'd swallowed an orange and with chest pain. The cf nurse took one look at me, magically  produced a hospital wristband out of nowhere and declared that I wouldn’t be allowed home because I’d had a pneumothorax. The swelling in my neck and shoulder was the air that had escaped from the lung and become trapped under the skin.

The hole in the lung wasn’t quick to heal and it was in a funny place. Surgery was discussed but it was a gamble with no guarantee of success.  At this point transplant referral was mentioned and I was horrified. In fact I was devastated. I remember calling my husband in a total state and asking for gin. It wasn't something I was expecting even though I'm in my 40s but I thought I was invincible. Having always plodded along nicely with low lung function which was now twenty five per cent I thought everyone was being dramatic. 

Then in the August I had an infection that was deemed life threatening (and I still didn't think I was that bad). I was on holiday in Spain at the time but that's a whole new story. We'd booked Spain before my pneumothorax and had to cancel the flight and book a ferry because I was no longer allowed to fly. Getting home was interesting.  However part of me knew things weren't good and for the first time I started having episodes of hypercapnia at night which means that you are showing signs of respiratory distress and can't get rid of the carbon dioxide in your blood. As a result, you can't wake up properly in the morning. It is like being trapped in your thoughts with a terrible headache and being vaguely aware of things around you but not being able to communicate or do a lot about it. Once you are awake and moving it slowly disappears. It is a weird/horrible sensation and I imagine a natural alternative to taking drugs. Or drinking too much gin. Or both. It scares the life out of my husband whereas I just feel as if I'm off my face. 

With another bad infection last Christmas and with my worst period of not being able to wake up in the morning due to hypercapnia, transplant referral was discussed again and the doctor decided to refer me. This isn't a decision that any cf doctor takes lightly and they don't put you through the process if they think you don't need it, but with a larger probability of me dying in the next two to four years, it seemed like a good time. There were pre tests done so results could be included with the referral letter and sent to the chosen transplant centre. When they received all the information, I got an appointment. 

Referral does not mean you need a transplant, it just means you have tests to see what your lungs and body are doing. On the first appointment I was told that (after more tests) I would be given one of three answers:

1.  You are currently too well for transplant but come back in six months and we'll review you.
2. Looking at your preliminary results it is a possibility that transplant could be an option and you should come back for further tests if it is what you want.
3. We've looked at your notes and results and have come to the decision that you aren't a suitable candidate for transplant.

I instantly assumed and decided that I'd be told I was too well and was confident of this when I got called into the doctor's office. It was just going to be a formality and this was all a silly mistake. However I was advised to go back for a two day inpatient assessment because my lung function and recent history indicated I may be transplant ready. To say I was shocked was an understatement. In fact I'd have been less shocked if the doctor had walked in naked, sat upon a unicorn and told me he was my dad. I get told all the time how well I look, how could I possibly be considered for transplant? By the way, being told how well you look every time you see someone is really annoying. Do people expect you to be crawling on the floor with blue lips? It's my innards that are fecked, not my outer bits. Apart from my hair, it's a bit wild if I don't brush it.

So, the shock. I was mute. I had no questions, no words and no apparent vocal ability. My husband felt the same. I couldn't look at him because I knew his face would show every emotion that I wasn't ready to see.  In fact we went straight to the pub round the corner and I consumed a rather large brandy as Andy Murray crashed out of Wimbledon.

A few weeks later I had the two day stay for the rigorous testing. This included CT scan, exercise test, lung function, bloods and a few I can't recall right now. You also meet the transplant coordinators and get given a lot of information about transplant and the pros and cons. It is a difficult and emotional process and the idea of transplant isn't exactly 'sold' to you. It can apparently be like swapping one set of problems for another and it isn't an easy listen. One of the difficult aspects was being given a checklist on what sort of organ you would be prepared to accept. Smokers lungs? Someone with a chequered sexual or drug history? Lungs from someone of 65 or over? It was like gruesome checklist.

 Over the two days of the tests, I felt like I was having what I considered to be a 'good lung day'. I was confident that I'd nailed lung function and decided that this really was a silly mistake. Surely by now they'd look at my results and would even question if I had lung problems. In fact I said to my husband 'In their face! I've walked this, we'll be fine.'  The transplant co-ordinator said he'd call me two days later after a meeting to discuss my case. I knew they would say that me needing a transplant was crazy talk. My husband tried to reason with me but then I got cross with him for being what I considered negative. 

On the Thursday afternoon, the transplant coordinator called me. He said 'We'd like to offer you a place on the transplant list (if I want it) .... blah blah blah. Have you any questions?' Once again I was mute. I had no words, no questions and no apparent vocal ability.  I ended up saying ' Do you mind if I call you tomorrow? I need to speak to my husband.' Then I hung up and wished for gin. This wasn't good news, exciting or good that I'd qualified. I genuinely thought it was a mistake. It took a while for my husband and cf team to help me realise what I needed and that my life had changed a lot even though I thought it hadn't. 

However at least I have the option of a chance of new lungs, some people are told they aren't at all suitable for transplant and some people choose not to have one at all. I still have moments where I think everyone is over reacting. I've had to slow down a lot and I have to choose my daily activities carefully. Even as I type this, I still feel it is about somebody else.

That's it really. I've been on the list since 22nd October of this year and it is a funny experience. I'm still at the stage where I hope the phone won't ring which is apparently a totally normal reaction. Some days I'm totally paranoid about something happening and other days I'm not. Maybe I'll write more about this if anything changes. Maybe I won't. Whatever happens I've got a great husband, teenager and mental dog to be looking after and that's what I'll continue to do for as long as I can. Gin anyone?

If you aren't an organ donor and would like to become one then it is quick and easy to join the organ donor register but more importantly you must tell your family of your wishes should anything happen to you. Click on the link below and sign up. If you haven't thought about it before then give it some consideration. This simple act of kindness can literally give someone a new lease of life.  Organ Donor Register.

My continuous 'things that get on my nerves' list because I'm in a continuous bad mood.

1. People who spell 'on route' instead of  'en route'.

2. People who say 'should of' instead of  'should have'.

3. People who call a small group of friends a 'click'. It's 'clique'. CLIQUE. Understand? Not a click. Cluck off.

4. Smug grammar pedants.  (Oh. Me then.)

5. People who exclaim 'That's GREAT news!' if I mention that I may need a transplant. No it isn't. Fuck the fuck off. I'm obviously not stoic enough about the whole process.

6. People who use inappropriate language to make a point (see point 5).

7. People on social media who say stuff like 'I love my friends, you know who you are'. No we don't. We need names and addresses in case of any ambiguity.

8. People who wear so much  perfume/aftershave that you can smell them an hour before you see them. You know who you are. Peter Jones, 44 Viewfieldpoo Walk, Tufton Grange, TG12  P00.

9. People who feel the need to tell me I look well EVERY time I see them as if this is some sort of miracle. What do you expect me to look like? A corpse?

10. People who write lists in a passive aggressive way to make points about things that annoy them.

11. Vince Vaughn's voice.

12. My voice.

13. The dog when she barks at ants creeping past the front door.

14. Ants creeping past the front door. It makes the dog bark.

15. When I plug in a USB cable but it is the wrong way round so I turn it over to try again only to discover that I had it the right way round in the first place.

16. When I make a nice cup of tea, sit down only to discover I didn't boil the water.

17. When I make a nice cup of tea only to discover I forgot to put in a tea bag.

18. When I panic lose my keys in my bag and then remember they are in my pocket.

19. When I panic lose my keys in my pocket then remember they are in my bag

20. When I'm idly flicking channels on satellite television and it's 'advert time'.

21. When I have to try to ignore the fact I need a wee when I've just got comfortable in bed.

22. When Claudia Winkleman stands in for Ken Bruce on Radio 2.

23.When people on Popmaster with Ken Bruce (quiz on Radio 2) say:

a. I'm a plumber (or other profession) 'for my sins'.
b. It's before my time Ken (so was Hitler but we know he was).
c. Can I say a quick hello (only to go on to name every person in Great Britain).

24. When your teenager empties the dishwasher and you can't find anything because it has all been put away in the wrong cupboards.

25. People who use the word 'your' when they should use the contract of  'you are'. (My Auntie Mary made me add this just this second)

26. The fact that I'm terrible at proof reading my own work.

Last week I misplaced an important document that I thought I had put in a safe place. I'd obviously put it in a very safe place because I couldn't find it anywhere.  I needed a national insurance number. I decided it would be fine because I could call HM Revenue and Customs and get a copy of the document sent out to me. I went online to find the appropriate phone number and I called. It was a terrible automated service. After I'd pressed 1 for help, 2 for lost national insurance numbers and 3 for a nervous breakdown I was advised to do it online. When I got online again it advised me to do it on the phone because the online service was unavailable.

It was a vicious circle and when I phoned up again the stupid automated woman wasn't prepared to listen. She kept trying to tell me what to say. I managed to record the phone 'conversation' with that stupid, annoying automated phone woman. Eventually I printed out the documents and sent in a request by good old fashioned post. That was two weeks ago though and I've still not received it.

It is lucky then that after an hour after having a nervous breakdown trying to sort out getting a copy, I found the document on the top of a pile of papers I'd already rifled through four times.

Here is the conversation.

Birthday Candles.

I do admit to being a bit of a germ phobe. It's not terrible, but I won't go out without antibacterial hand gel and I won't touch door handles when I go to the shops. I'm definitely an elbow and knuckles kind of person. I once saw a bloke pick his nose, drag his palm across his hairy nostrils and proceeded to put his hand all over the shop door handle to push it open. No thank you. If he did that in public it made me worry what he did in private. Goodness knows what would be on my hands if I touched the door handle after that.

With that in mind when I go to a kid's birthday party you will never ever, ever, never, ever find me eating a piece of birthday cake.

I'll tell you why. The blowing out of the candles. It usually involves spittle. Lots of spittle. Possible snot. All over the cake. I can't bring myself to eat it. 

Little Johnny Picky Nose is all excited for his birthday cake. All the kids gather round excitedly to blow out the candles. The kid with swine flu wants to help blow out the candles so they won't feel left out. Everyone blows. It's like it is showering a fine rain. That's not even enough! Oh no. The kid at the back with a touch of Ebola virus is crying because they wanted to blow out the candles too but couldn't reach. The whole process starts again. The kid sneezes on it mid blow. All the kids touch the cake decorations. Licked, sticky fingers all over it. 

Eugh.

Scenario 1.

Party host: 'Here is your piece of cake, have two pieces.'

What I hear: 'Here is you piece of germ warfare. Have two slabs and make yourself really ill, for a really long time, resulting in possible death.'

Scenario 2

Party Host: 'I made it myself, it's really moist,'

My thoughts. 'Yes, it's moist with spittle and snot and it might result in possible death,'

Scenario 3

Party Host: 'Little Johnny Picky Nose helped me make it. Didn't you Johnny?  You MUST try it.'

My thoughts (as I look at Johnny with half his fist firmly nestled in one nostril): 'Yes. Johnny is called Johnny Picky Nose for a reason. Johnny picks his nose. There are now bits of Johnny not only ON the cake but IN the cake and if I eat it it will result in possible death.'

Every time we go to a kids birthday party now, I can't look at my husband when the candles are being blown out because he pulls faces with a spitty looking face and makes a big deal of seeing if I want cake and it makes me laugh too much. The git.

Have a rubbishy soundbite of what it all might sound like.

Muddy Rivers and Three Legged Dogs

So I'm telling my father in law (John) a boring anecdote about Minnie Three Legs (my dog), jumping into the muddiest part of the river a day after she had her stitches out following her leg amputation. She came out as BLACK  as the hobs of hell. Filthy she was. She looked VERY pleased with herself. John decided to return my tale with anecdotes about his granddaughter who is called Hannah.

John said: 'Oh Hannah (his young granddaughter)  always used to do that.'

Me: 'Really?!  

John: 'Oh yes, Hannah always used to get in the river and she'd get out and be COVERED in black mud and that sort of river slime.'

Me: 'Oh. Umm..... Why would Hannah jump in the river, was it an accident? Was she ok?'

John: 'Oh yes, she'd do it all the time. We'd take Hannah to the place near Summers Lane and she loved it.'

At this point I'm thinking that they just let Hannah have a bit of summer fun and they are the sort who don't mind kids getting mucky because it's what childhood is all about right? We have soap and water and washing machines these days. Let kids be kids!

John: 'Oh yes, she'd jump straight in, get SO slimy but she loved it. She didn't care. The dirtier the better. She'd find the dirtiest bit of river and jump right in. It was SO dirty it was probably a chemical disaster area. Dirt and slime everywhere. Filthy and the SMELL, oh the smell. Hannah loved all that dirt and slime. In the river. The dirtiest part of the river. She LOVED it I tell you, LOVED it.'

I may have enhanced the last part of that conversation.

Me: 'Oh. Er..., blimey. You really are carefree letting Hannah get so filthy on a regular basis in the name of fun. Hats off to you.' (I never actually said hats off to you)

John: 'Yes, then we'd get Hannah home and we'd have to hose her down in the garden.'

Me: 'Really?! Bloody hell John she must have been filthy. Seems you know, quite excessive. Wow.'

John: 'Oh yes. We couldn't have her walk through the house like that. So we'd hose her down in the garden (now John is laughing at the memory) and she'd snap at the hosepipe with her teeth to catch the water. "Gnash gnash gnash". This was his  impression of Hannah this now seemingly feral child, wild and dirty trying to catch water with her TEETH.

I now picture her in rags and loin cloth with wild searching eyes, crouching in fear when she hears loud noises and howling on a full moon. She eats with her fingers, ripping food apart with a desperate ferocity of a child who is wild and hungry.

Me: 'John?'

John: 'Yes?'

Me: 'Are you sure you are talking about Hannah and not your old dog who was called LUCY. Who was a DOG. Because quite frankly John if you are talking about your granddaughter and not your dog then I might have to call social services.'

John: 'Oh. Yes. I meant Lucy. Not Hannah.

Me: 'I was half hoping I could call social services.'

Phew. 

Children in Need

Every year in the UK the BBC (telly people) have a televised event called Children in Need. The programme is designed to encourage members of the public to donate money to Children in Need (a corporate charity) which in turn helps children who are in need. On Friday night the programme generated about thirty one million pounds. According to the CiN official website their vision is to ensure that 'every child in the UK has a childhood which is safe, happy, and secure and allows them the chance to reach their potential.' No matter what you think of shows like this, it does aim to help many of the smaller charities that are desperate for funding in order to continue with their services. A few examples are children's hospices, young carers groups, bereavement services etc. In fact a link of them can be found here (pdf file).

During the show, in between entertainment (depending on what you call entertainment), there are short video clips of the sort of projects that CiN helps and so it will feature a family who are dealing with a  difficult situation and how a project they attend such as a hospice etc helps them as a family.

It was during the programme that I made the mistake of idly scrolling through my twitter feed. I read a few 'tweets'  (I say it like that because I feel old) and a selection of people with Cystic Fibrosis (you may recall that I have Cf too) were being a bit, you know well quite uppity about it. The tweets I read  ranged from:

'Children in Need takes away from other charities like Cystic Fibrosis.'

'Why is Cf never shown on CiN is it too much to ask to get Cf awareness?'

'No Cf shown for us :o(  (unhappy face).

The one that finally made me crack and respond wasn't until the next day when I read:

'Cf is a forgotten disease :o(  (unhappy face).'

Arghhhh! Cystic Fibrosis is hardly a forgotten disease and yes I know I shouldn't have been wound up by a comment from someone on twitter who I don't know when it's hardly the best place to get your point across. However if Cf was forgotten then I wouldn't be sat here now.  Cf patients overall have excellent support and care (yes, I know there will be the exceptions) but the NHS fully recognises it and the treatments for it are at least there and mainly available. We have Cf clinics,  Cf nurses, cf doctors, physios, psychologists and dieticians. And on a bad clinic day you might get to see all of them and you want to kill someone by the end of it.

So with that in my mind I made the mistake of hitting 'reply' and simply saying 'It's hardly a forgotten disease.' This unleashed a torrent of bitchiness. Ooops.  The 'bitchy' comments were from the same few people but the initial comments about Cf not being shown on the children in need programme were quite widespread and  frankly unnecessary.

I went on to say that I didn't think Cf was left in the shadows and that it is good for the smaller charities to get a look in because it is. Of course it is. One programme can't highlight every single charity. I then got accused of implying that Cf gets enough awareness. 'Don't you dare tell me that Cf gets enough awareness because it doesn't,' said one over excited tweeter which was weird because I didn't.  Sometimes people will only read what they want to read, a bit like Daily Mail commenters. My almost favourite was 'Don't say I shouldn't raise awareness for Cf (angry face).' Er okay, I won't. Thanks for the advice.

The services that CiN help may also in turn help children with Cf anyway such as play schemes, bereavement services and hospices. In fact I know of a few people whose children with Cf go to a hospice for respite care. It helps all the family immensely. Just because Cf isn't mentioned in a programme (incidentally, Cf has been mentioned on the show in years gone by) doesn't mean it is forgotten. The fact I don't have a problem with Cf not being shown doesn't make me weird, heartless, a fucking idiot, silly bint or otherwise. Nor was I accusing people of forgetting other charities existed. Why on earth would I make such assumptions? I do think people get carried away in their own little world though. The simple fact is that I don't think Cf is forgotten.  Children in Need happens to highlight smaller schemes and charities and I don't see a problem with that. It doesn't make me heartless. As one friend who happens to have Cf said to me 'CiN to me is more about the obscure illnesses, grief and poverty.' Even my teenage son doesn't see how one show can be responsible for trying to highlight everything and believe me he'll be the first to get frustrated about lack of understanding.

The Cystic Fibrosis Trust has a much bigger platform than many of the schemes and illnesses shown in the programme the other night. We have 'CF 'Awareness Week' every year and there is often a story or article about Cf featured in the newspapers, magazines or on television etc. I'm not saying it is enough because it probably isn't but there are so many others who get less recognition than 'we' do. I see no point in moaning about a charity event that does end up helping children with Cf in one way or another. It's for children and young adults with different issues.

At the end of the day having an illness that people don't understand can be as frustrating as hell but to be honest all the awareness in the world will not necessarily get across how Cf affects people because it is such a complex and individual illness. I'm just relieved if someone knows what it is if I ever need to explain it (especially to a Gp, ha ha etc) but then it's down to me to explain how it affects my life if I choose to do so. I hope that makes sense.

So to summarise, I have not or have ever said that cystic fibrosis gets enough awareness. I have not or ever said that people shouldn't raise awareness. I do however think some people get too wrapped up in their own world and forget to see a the bigger picture. Not everyone, just some people.

Just a quick edit - a friend with Cf just told me that Children In Need paid for her physio bed quite a few years ago.

Quick edit two - Children in Need has helped fund The Lime Arts Programme:  'Lime art has an ongoing partnership with the Manchester Adult Cystic Fibrosis Centre. We deliver a rolling a programme of arts projects focusing on engaging patients in creative activity.  Professional artists specialising in different media, i.e. music, animation, painting and drawing, creative writing, work one to one with patients during their stay on Pearce Ward.'

Cillit Bang.

I first posted this on my old blog back in 2008.



As much as I have grudges against fragrances for the home, I also have issues with Cillit bang and the adverts for it. Firstly a fictional character called Barry Scott who is meant to be making us want to buy this stuff booms out of your TV so loudly that the windows rattle and any animals within earshot roll over in submission:

'Hi, I'm Barry Scott, Cillit Bang will even erase the disgustingrancid smell of putrid sheets after a torrid affair with yourneighbour whilst your wife is out shopping for cardigans.BANG AND THE DIRT IS GONE.'

Get lost Barry. I prefer to use bleach and Cif. Or something. Maybe Flash liquid depending on how frisky I feel. I like the option. I don't want to use one product to clean everything. It is boring. 

Look at the pic below though. I know it is a bit small, but honestly. That toilet is brown! Whose toilet gets that brown? The baths in the adverts usually have thick black scum in them. How dirty do the folk at Cillit Bang think we all are?


'What stain are you trying to clean? I'll tell you Barry, I'm trying to clean off the normal stuff, not 25 years of dirt and poo from up my walls. 

Cillit Bang currently claims that you only need to buy their one all purpose product to clean everything from poopy stains, cum stains and the saliva off children's toys. Hopefully not with the same cloth.

So I mailed them to ask a question.

I cunningly posed as Dorothy, who is an elderly woman whose husband stays in bed all day playing dominoes. Here is what I asked:

Dear Barry Scott,

Is it safe to use your cillit bang product on my false teeth? You say it cleans anything. My teeth get stained due to all the coffee I drink and my husband gets confused if I soak them in my denture cleaner. He mistakes it for water and the solution gives him the runs.

Many thanks

Dorothy.

They actually replied with the following:

Thank you for your email regarding Cillit Bang. We strongly advise that you DO NOT use any of the Cillit Bang range to remove stains from your Dentures. We do produce Steradent which would be suitable for this purpose ensuring that you read directions for suitability. 

Kind regards, Cillit Bang

To summarise, they have lied about their product. It does not clean everything. 

Early Morning Conversation

This the conversation with my husband this morning.



Tim:  'I've something to tell you. It's important and I don't know how you'll take it.'

Me: 'What? Have you broken something?'

Tim: ' No.'

Me: 'What then?'

Tim: 'I think it was me that got Alesha Dixon pregnant.'

Me: 'But you don't know Alesha Dixon so I'm guessing it's highly improbable.'

Tim: 'She came round the other night when you were asleep.'

Me: 'Right. How did she know where you live?'

Tim: 'Don't know she just appeared in the middle of the night, saw me and I think she got pregnant just by looking at me.'

Me: 'Crikey, she found out she was pregnant very quickly then.'

Tim: 'Yes. Yes she did.'

Me: 'If she came round in the middle of the night, why didn't the dog bark and why didn't I hear someone knocking at the door?'

Tim: 'You were asleep and the dog was asleep.'

Me: 'Right. So it managed to wake just you up even thought I'm the worlds lightest sleeper, you are the worlds heaviest sleeper and the dog barks at ants in the garden?'

Tim: 'Yes.'

Me: 'What will you call the baby?'

Tim: 'I wanted a name that isn't too showbizzy or catchy, so we will call the baby Erotica.'

Me: 'Ok, make me some tea please.'

Tim: 'Yes. You've taken this very well.

Me: 'Yes I have.'



Have a rare photo of me and the teenager.

Transplant Article

My last post discussed an article written by a certain Stasia Bliss who claimed that herbal remedies and yoga are an alternative to transplant in people with Cystic Fibrosis. That article has now been removed and not before time.

That's all I have to say about that now.

Cystic Fibrosis and Transplants

Read the following article on the link below, but for goodness sake don't take it seriously.

Lung Transplant May Not Be Best Option for Cystic Fibrosis 

I’m often incensed by things I read online and I’ll have a moan to myself and then get on with my life. This article has enraged me. It is one of the most offensive articles I have ever read regarding Cf. Not only is it offensive to those who deal with Cf every day, it is condescending, ill informed, factually incorrect and a potentially damaging article. To the memory of people with Cf who have died then this article is sickening and upsetting. If this sounds dramatic to the average reader then read the comments following the article and you will see that my feelings on this are not unique. 

This is my reply to this woman, I forget to say however that not all people with cystic fibrosis opt to go down the transplant route. Excuse any mistakes I'm terrible and correcting my own stuff. I become blind to it:

Cystic Fibrosis is genetic. People are not GENERALLY born with it they ARE born with it. You’d think that in writing something so inflammatory then you’d at least get your basic facts correct. This article makes it sound like people with Cystic Fibrosis (pwcf) choose to have a transplant because they can’t be bothered to try anything else. Let me tell you, once someone with Cf is at the stage where they ‘choose’ to have a transplant the lungs are damaged beyond repair. There is no going back. Even if you aren’t at the transplant stage then the methods of oregano oil, lobelia and eucalyptus will not stop Cf causing havoc in the body. If you think (yes you Stasia Bliss) that oregano oil and yoga is a decent and effective alternative to a transplant then I suggest you suffer from an extreme form of aggressive and debilitating ignorance that no amount of herb will treat. I’m sorry about that. Maybe try rubbing extra strong chilli oil into your eyes. This needs to be done six times a day to have a cumulative effect. Obviously check with a practitioner first.

Another fact you need to get right Stasia is that Cf will NOT find its way into newly transplanted lungs. I suspect you’ve taken too many potions that have addled your research brain. A lesson for us all I think.

The article is detrimental and damaging to those who campaign for Cf awareness and transplant awareness. If someone came up to me and suggested that herbs and yoga would help my current lung function rather than all the effort I put in myself then I could not be held responsible for my actions.  

Yoga may give someone a calming effect on the mind but it is not and never will be a curative for someone who needs a transplant or otherwise. Like I said earlier the lungs are irreversibly damaged. How do you suggest that yoga self heals damaged lungs? Is magic involved? Wow, that would be good. How would you expect a person with twenty percent lung function or lower to do yoga? It can be hard enough work getting your socks on in the morning with lung function higher than that. You’ve no idea have you. That wasn’t a question. It was a statement.

One of my favourites in all this Stasia is your suggestion of lobelia to induce vomiting (sometimes violently) in order to get rid of the mucous in the lungs. Have you actually read this back? On the most basic level since when does violently vomiting help get rid of anything from the lungs? I assume you did not do biology at school. In any case violently vomiting for 7-8 hours is not good for anybody. Remember you said all this can help rather than choosing a transplant. I don’t know where to start. I hope to god that someone who is desperate for help does not read this pathetic excuse for ‘advice’ and try this method. I suggest Stasia that you take lobelia yourself and vomit for 7-8 hours and then see how tired and strained you would feel. I’m not quite at transplant stage and if I vomit for two minutes I feel exhausted and breathless. What you are suggesting is at best stupid and dangerous. Keep going with that chilli oil. Keep checking with your practitioner. Whilst there, get your bowels checked because you are obviously full of something. Try Senokot. You’ll need to quadruple the dose.

Now on to emotional well-being. You can’t heal CF with emotional well-being. If you could heal Cf through well being and happiness then I’d be running around right now. Unfortunately I didn’t smile enough the other week and got myself a pneumothorax. My bad. It’s my mistake for my ‘thick belief that life won’t work’ for me. I’ll tell that to my fifteen year old son and husband. They’ll be so cheesed off that some of my health issues are down to an emotional state. How rude and misinformed can one person be? Have you any idea how offensive you are? Would you tell someone with depression to snap out of it? I dare say you would. Did I mention the chilli oil and eyes? Keep going.

It is suggested in the final paragraph and I quote ‘Serious and even ‘incurable’ diseases have been treated with natural medicine with great success, even in the final hours.’ Words fail me. Have you ever seen a person with Cf in their final hours? Respiratory death is rarely peaceful and your suggestion that natural medicine may save someone with Cf in their final hours is one of the most insulting things I have ever read. It makes me feel sick that someone can be so misinformed and think it fine to write such trash and then have the audacity to say ‘Just so long as misinformation and ignorance do not contribute to a choice that can not be reversed.’ Absolutely unbelievable. All your suggestions are misinformed, every single one of them. You clearly have little or no common sense. I feel sorry that you hold such ridiculous notions. I’m even more sorry that this article was ever allowed to be published. It should be retracted with a full apology.