Sunday 31 July 2011

Down, Down, Deeper And Down

I'm off work, again! So, so upset. When will it all stop?

With the best will in the world I just could not get out of bed this morning. Although the tablets have stopped the vomiting I'm still feeling really rough and have stopped eating again, bang goes my weight gain. On top of that I've developed asthma like symptoms and am coughing and wheezing like there is no tomorrow. I've doubled up on my inhalers but they are not having much effect.I'm going to see my GP tomorrow and am hoping it is either the beginnings of a chest infection or a cold. I know is sounds odd hoping for an infection but if it isn't then I might well be developing a sensitivity to the treatment and that is what I worry about most of all. That's what happened to the Iloprost after only six months. I started off having bad asthma symptoms and then developed a rash. I've only been on the Flolan eight weeks and am terrified it is happening all again. I just couldn't bare it if after all that I've been through they have to stop the treatment.

I've been thinking about work a lot today and am wondering if the time is drawing near to calling it quits. I hate letting my colleagues down and feel so guilty when I know how work is struggling for staff. I can't keep taking time off it is just not fair on them. I'm going to have to weigh up my options very, very carefully and discuss it with Peter and my specialist team to see what they think. I don't want to do it but there comes a time when it is better to go gracefully than get booted out kicking and screaming, and I've always been a graceful kind off girl.

I spent the morning catching up on the papers and the TV I've recorded while away in Wales then cooked a pasta for the boys before settling down to watch the Grand Prix, Button won which cheered my up enormously. We are going to have film night tonight and I've bagged 'Showtime' with Robert De Nero and Eddie Murphy. I watched this film for the first time in the middle of the Atlantic on a flight to San Francisco and have loved it ever since. If that doesn't bring me out of my black mood nothing will. 

Saturday 30 July 2011

Guess That's Why They Call It The Blues

Well yesterday I made it until around ten in the evening and then, well lets just say I was a bit under the weather. I immediately took the tablets I'd been given for such an event and went to bed only to wake up this morning groggy but OK. I have enough tablets for fourteen days by which time my body should be getting used to the increase and the sickness should be wearing off. Let's hope so, I don't want to keep going up and down on my dose. If I can't get past this I don't know what they will do, I don't know if there are anymore alternatives.

The weather is lovely but I can't really enjoy it, the tablets are doing a good job of stopping me being sick but they make me feel really weird, as though I'm not quite here. I went to work today but it was a real struggle. Not sure if I'll be able to make it tomorrow. I don't want to go off sick again, they are so short staffed that I will feel like I'm letting everyone down, again. Peter says I must concentrate on me and look after myself and that if I cannot get in then they will just have to cope. I know he is right but it makes me feel so bad.

As you can tell I'm having a bit of a down day. I hate days like these when you just can't shake off the feeling of doom and gloom. I find it especially bad when the treatment you are having to make you feel better makes you feel so much worse. I know it is, hopefully, only temporary but I still wished for improvement without consequences. I think part of the problem is that every time I've change treatment previously I've initially made huge improvements, so I kind of hoped that this would be the same. Only yesterday morning I felt quite well, now I feel crap, it's just not fair.

In other news got a phone call from my mother to thank me for the flowers I sent her for her birthday. I think she thought that the meal was the present, as if we'd do that to her.

Andrew got the job, it is only a few hours a week to start with but as I told him, some money is better than none.

Laurence went to a garage sale this morning and bought quite a few bits and pieces for his new house for only a few pounds. I'm not sure exactly what he's got as he had gone out when I returned from work but no doubt I will get a full viewing once he's back home. He is still excited but is finding the legalities and paperwork a bit bewildering. My brother has offered a load of furniture from his father in law's house, he died last year and John as executor has been trying to sell the house ever since. The house is still fully furnished so obviously they want to get rid of it all before they sell. So we are going to have to make another trip to Wales soon to collect it. Looks like I'm in for a busy few months. I wish we had people throwing stuff at us when we first set up home. So far Laurence has got the stuff from the sales this morning, loads of stuff from us such as crockery, cutlery, kettle and microwave. My mother gave him a lawn mower, strimmer, sandwich maker and knives. And now as much furniture as he wants from my brother. Oh and of course all the furniture in his room including bed, desk, computer, TV, and chest of drawers. As his luck is obviously in maybe he ought to buy a lottery ticket.



Friday 29 July 2011

Back On The Road Again

No sooner do I touch base than I'm off again, this time into London for the Brompton. Unusually the roads were really clear today and we sailed in arriving a full forty five minutes early and found two disabled bays empty right in front of the hospital so we decided to relax with a coffee in the hospital cafe before going to my appointment.

I have never been in anywhere as disorganised as the outpatients of this hospital. I'm booked in for an echo first and, following the instructions in the letter they sent, I turn up with ten minutes to spare at the Sydney Street site (the hospital is split in two with half in Sydney Street and half in Fulham Road) only to be told by the snooty receptionist that my appointment has been switched to the Fulham Road site. Well thanks a bunch for informing ME, the patient, of the change. We hot footed it around to the other hospital building and arrived hot, sweaty and breathless with only seconds to spare, so much for arriving calm and relaxed for once. The outpatients clinic confirmed the change of venue and directed me to the x-ray department. Thankfully we only had to wait for fifteen minutes and I was soon back in front of the receptionist at the clinic where she gave me a white slip for an ECG, in exactly the same department as I'd just walked from. It seems no one has told admin that PH patients have difficulty walking distances, especially at speed. Anyway once all the tests were done I was back in front of of my nurse specialist. After a long discussion we decided to give the dose increase another go because my echo showed that my heart is still under strain and although my pressures have dropped a bit they are still not what everyone was hoping for. I am trying to be positive and look on the bright side that there has been SOME improvement but I can't help feeling just a little disappointed. As Carl pointed out though, I have been through a really rough few months and when you've been that ill it is not as easy to bounce right back.

I must admit that I'm a bit nervous of this increase as last time I ended up unable to leave the bathroom for nearly three days so Carl has given me a load of super duper strength anti sickness tablets. He is convinced that because I've been on 1.2 for so long my body will be fully used to the drug by now and increasing to 1.4 shouldn't cause me any problems. I'll wait and see but will not be allowing my sickness tablets more than a foot away from me for the next week or so.

Today we had no trouble parking and I must say despite multiple warnings we didn't have any problems in Aberystwyth either. The warnings were the result of a little traffic warden trouble. Aberystwyth is currently the only town in the country which does not have any traffic wardens. This is because the police, who originally employed the wardens decided they couldn't afford them anymore and terminated their employment from the first of June. The council, as efficient as usual, cannot put measures in place to re-employ the wardens until at least June next year so anarchy reigns, or so I was lead to believe. Certainly from the newspaper clippings I was sent all hell had broken out with numerous disputes and minor accidents but when we got there the parking was better than it had ever been. We had no trouble finding free disabled bays and noticed that car congestion was vastly improved on previous visits. Looks like once everyone is left to their own devices everything runs much more smoothly than when policed.

Back to work tomorrow, this time increasing to six hours a day, not sure if this is wise so close to my drug increase but if I can't do then I can't do and will revert back to four hours for a few weeks more. However once this increase kicks in hopefully I'll manage without any problems, fingers crossed.

The journey back 

Thursday 28 July 2011

We Are Family.

It's a question of where to start when it comes to my flying visit to Aberystwyth. Despite my reservations the meal was a complete success and everyone got on famously. It was almost as though we'd never been away from each other. There was catching up with what everyone was doing now and a walk down memory lane causing hystercal laughter.

Let's start at the beginning.

We travelled in two cars and at different times as Laurence couldn't get time off and was working until midday. Andrew chose to travel with Laurence so Peter and I set out straight after lunch and headed for......Reading. Yes I know it isn't the most direct route to Aberystwyth but Peter had arranged to pick a second hand car park on the way, with the plan being that we continued around on the M4 and approached Aber from the south. This plan was abandoned when we hear of the fire closing the M4 tunnel so instead we followed the M4 to Swindon and cut across country. It was a great journey and so much more interesting than the M1, M6, M54 route we normally take. The best bit was the lovely Elan Valley leading to Devil's Bridge, it was surprisingly free from the usual tourists and we zoomed along until a close encounter with a sheep slowed us down a bit. Even so we arrived around six, Laurence took the M1 route and arrived three hours later.

Wednesday was the day of the lunch and I'd done a brilliant job of keeping everything from Mum so as not to spoil the surprise, as far as she knew she was just going out for a quiet lunch with just the four of us. Then Wendy arrived at the house with Nick and Charlotte and that bit of the surprise was over but we did manage to keep John a secret until we arrived at the restaurant. The only person missing was my niece Gemma who was unable to get a baby sitter so eleven of us sat down to lunch. The food was lovely but the portions were rediculous. Each plate held enough to feed me for a whole day. Why do restaurants do that? They must waste far more than they gain. We met at one but it was gone three by the time we paid the bill then we all went to the field next door for a group photo.

After saying our goodbyes we returned to Mum's house so Laurence could pick up his things and head back home. After he left we took Andrew down to the sea front where he spent a happy hour swimming while we sat on a bench eating ice cream cones. For once the weather was fantastic, usually we trundle along the prom leaning into the wind and trying to hide behind an umbrella.  We ended the day with our traditional chips out of paper on the prom. I haven't eaten so much in one day since Christmas and I went to bed totally stuffed but really, really happy.


Tuesday 26 July 2011

Crash, Bang, Wallop!

Well all chances of having a lie in were dramatically shattered this morning when the police decided to do an early morning raid on one of the houses in the close opposite me. Where did they park their van? Outside my house of course and a noisy lot they were too, doors banging and clanking and last minute instructions before they dashed across the road and started hammering on the door. Since then there has been a hive of activity with plain clothes and uniform going in and out, some carrying large evidence bags.

I can't say I'm surprised. The family have been a notorious blip on the village for years, we were warned about them by a friendly neighbour when we moved in over twenty years ago. Then it was the father causing problems, an old fashion crook who held court in the local pub, he never hit a woman but was reportedly vicious with anyone who crossed him and rumours were rife about dodgy car businesses and a brisk trade in fencing, and I don't mean the wooden kind. It was unfortunate for Laurence that he went to school with this man's son and like every other kid in the village soon became a victim of bullying. As they got older the son became more and more violent and was eventually expelled from school. From there he graduated to drug dealing but like daddy was Teflon coated. The suspicion was there, all the signs were there but no one could prove it until today it seems. No doubt the rumour mill is already in full swing and it won't be long before someone tells us their version of what happened. If it is drugs and this boy gets convicted it will be ironic that Laurence now works on the drugs wing of the local prison. Talk about table being turned.

Well our trip has got off to a good start with Peter accidentally kicking a door frame last night and removing a big chunk of his toe. It is very sore so the driving is going to be down to me. I'm going to have to stick a huge pad over the line site and hope for the best. I've got all my drugs sorted and ready to be packed. I'm taking double of everything I need just in case, you can never be to careful.

Laurence is giving blood for the first time today, he has tried twice before but the first occasion was just after his car crash and they turned him down. The second time he'd just had Hepatitis vaccinations and so was turned down again. Third time lucky. Hope it goes OK and he gets his wish of a pretty nurse he can chat up. Yesterday on his way to work he had a small accident at a junction when a 'dozy cow' reversed into him to let a lorry, that had plenty of room anyway, turn. Laurence was dressed in full uniform at the time and as he got out of the car the woman nearly fainted thinking she'd hit a policeman. Thankfully little damage, a scratch on the bumper for Laurence and a cracked number plate for her.

Well short but sweet, will post again on 28th. 

Monday 25 July 2011

Moving On

Well after a weekend of doom and gloom it has been good news day today.

First off Laurence's offer on the house was accepted, at last. On top of that the sellers are throwing in the blinds, lampshades, fridge and freezer, result! Laurence is so excited he can't stop smiling. My feelings are more ambigeous. Of course I am pleased as punch for him but it means my eldest child is finally leaving home after twenty three years under my roof and care. It is not as though I didn't know when he was born that one day he would leave home but it seems to have come around so quickly. He has already been told that he'd better ring me at least once a week and no doubt my ironing and cooking skills will be much sort after, at least until he gets himself organised so I'm hopeful of regular visits.

The second piece of good news came from my neighbour who informed me that his daughter gave birth to a baby girl yesterday. She's named Zoe and weighed in at nine pounds and six ounces so a real bouncer. She's coming over next week so hopefully I'll be able to meet her. Talking about babies I met Daisy yesterday, the eight week old baby daughter of two of my colleagues, big blue eyes, blonde hair and a smile, what more can you want?

I have four days off so looking forward to a lie in tomorrow, sods law saw me sleeping like a log last night only to wake up at seven this morning muggy headed and longing for another hour or two in bed. I struggled today to be quite frank. It's not so much that I'm tired though that doesn't help but that my brain seems to have turned to mush. I know I've had three months off but I didn't expect to forget so much. I don't know why this is and my confidence has taken a bit of a dive. I've been told that i shouldn't beat myself up over it as in reality I've only been back a week but ever the perfectionist I'm getting frustrated with myself. Thank goodness I've got such kind and understanding colleagues. I must be driving them mad with all my questions.

The meal with the family is on and we will be travelling to Wales tomorrow. Unfortunately because of the house sale it is unlikely that Laurence will be coming with us as he has to start the ball rolling with the house sale and that means visiting his solicitor. To be honest it was going to be a flying visit for him anyway as he couldn't get time off so maybe it would be better for him to visit later in the year when everything has calmed down and he has more time.

My mother does not have such things as computers and Internet so unless I can find a wireless area I will not be able to post my blogs for a couple of days. Posting will resume at the weekend when I'm sure I'll have loads to tell you.  

Sunday 24 July 2011

I Go Back To Black

The death toll rises in Norway and the man that caused the carnage seems to be rather pleased with himself. Not for him the 'saving of the last bullet'. No he wants to shout his 'achievements' from the rooftops. The killer describes his actions as "gruesome but necessary" and is clearly mad. His reasons are not yet fully clear but it seems to have been driven by his religious and patriotic beliefs. I don't understand why anyone would kill for religious reasons especially as most religions claim to be peace loving. I hope there will be no more deaths from this incident.

I got really pissed off listening to a report about this today. This morning while getting ready for work I had Sky News on and as usual they were wheeling the pundits out to give their worthless opinions on the what's, why's and how's. This people generally have no idea what they are talking about so I was only half tuned in but I became fully aware when this particular idiot kept referring to 'Finland'. He didn't even know where the tragedy took place! To make matters worse no one corrected him! I was appalled, if you have to make a comment at least do your bloody homework, I only wish I got his name because would I name and shame, yes I would. I mean just how disrespectful can you get?

Amy Winehouse is vying for the top news spot and it has been pointed out more than once so far that she has joined the 27 club. This 'club' is basically a tragic list of singers who all died through drug abuse of one sort or another and includes Jimi Hendricks, Janis Joplin, Brian Jones and Jim Morrison. By creating this 'club' what has the media done other than to glamorise drug taking or to be more precise, death by drugs at a young age. For a start we cannot be one hundred percent sure it was drugs and won't be until the post-mortem. Yes I know that in all likelihood it will be drugs but I think the media are a bit presumptuous to announce that their sources tell them it was drugs only hours after she died, how do they know? Have they special powers that allow them to see into her body? All this speculation is disrespectful not just to the singer but to her family. Do the media care, only if they can get a story, interview, picture. Amy's family have asked for time to grieve, will they get it I hope so but if I were them I'd be careful about making any phone calls.

There were more deaths this weekend but because they involved neither anyone famous or a mad man they have gone under the radar of the majority of the world's press. This time it was in China and the head on crash of two high speed bullet trains. They crashed on a bridge and two of the carriages fell into the water below. The death toll isn't as high as in Norway but there are many more injured. Normally such a story would be top dog but in a weekend such as this it has completely passed most people by.

Is it me or are we having more than our fair share of horror of late?

Anyway I am not going to talk about these things anymore, well not unless some idiot reporter get me going, so on to more mundane but pleasanter events.

The first really sunny warm day in weeks and where was I? In work of course but only until one. Actually Sundays are not that bad once you get over the shock of getting up early when the rest of the world is having a lie in. Because they are usually our least busy day we treat ourselves to a fry up. We all chip in to buy what we need and then one of us, usually the lovely Naseem, will cook up a storm. Everyone arrives at work starving as most of us have skipped breakfast at home in anticipation of the delights to come. If a cooked breakfast is out for whatever reason then it is often sweetie day, I'm telling you it is not the place to be if on a diet. I got home to find that Andrew had cooked a pasta but I was so full I couldn't eat it. Thankfully Laurence arrived home soon after ravenous after a gym session and ate my portion as well as his own so nothing went to waste. Watched the German Grand Prix and was delighted to see Hamilton crossing the line first. Button's bad luck, however, continues such a shame. Then out into the garden and a quick check of the herbs and tomatoes. Everything is growing really fast now and some of the herbs are in serious need of a trim but that will come next month when I start drying them for winter. The tomatoes are massive and dripping with fruit, if all goes well I should be eating my first tomato in two or three weeks. You watch, in a month I'll probably be complaining I'm sick of them.

We have finally made the decision to go down to Wales for my mum's birthday, it is going to be a flying visit with Laurence only able to stay overnight and Peter and myself two nights because of other commitments. I don't think she will mind though as we are planning a meal and it will be the first time my brother, sister and myself will be together in several years. I'm really looking forward to it. Lets just hope the weather is kind.


Saturday 23 July 2011

Tears In Heaven

What a sad, sad day.

Ninety one people dead in Norway, many of them in their teens and the toll may still rise as therev are many seriously injured.The horrific events in Norway were played on TV's at work for most of the morning. It shows what a major event this is as we are rarely allowed to watch TV while working. Everyone was shocked and we discussed the hows and whys. It was heart breaking seeing the death toll rise and watching the shocked faces of the survivors.

Some will say the death of Amy Winehouse was neither shocking or unexpected. I will disagree with that because any death of someone so young is always shocking. As for it being unexpected well maybe I would agree with that though to be honest I have always expected Pete Docherty to be the one to pass away first. Amy's death is currently unexplained though I suspect everyone who knew of her has a good idea of the cause. I loved her voice and her music, it is such a pity neither seemed to make her happy. I hope she is now at peace.

The nurse has been charged and remanded in custody over the deaths of five patients. I suspect no one will ever really know why she did it, maybe she doesn't even know why herself.

Is it a full moon? Today seems to be a day when all the nutcases came out to play, we were no busier than other Saturday's in fact I think it was quieter than normal but the things that did come our way varied from the unusual to the truly weird. I lost count of how many times I was shouted or sworn at in the end. Hopefully tomorrow will be better.

I am really tired, I'm still not sleeping well. I go to bed exhausted but as soon as I turn off the light and my head hits the pillow I'm wide awake. It was well past midnight before I dropped off last night and I was awake before six. This afternoon I dropped off while watching the TV and slept for an hour. I had thought my lack of ability to sleep was down to lack of activity but that cannot be the explaination now, whatever the cause I hope it sorts itself out soon.

I am worried about Tarmac, when stroking him this morning I found a lump on his neck, it is about the size of a small grape and doesn't seem to be bothering him. Smirnoff had a lump on his neck last year which turned out to be benign but was removed anyway. I'm hoping that this is the same sort of thing but only a trip to the vet will put my mind at rest. I hate taking the cats to the vet but I really, really hate taking Tarmac. He howls all the way there and all the way back and it sounds as though I'm murdering him. When I do get him there he has to be dragged out of his cat box and usually pees on the table out of fear. When we get home he sulks and refuses to come near me for a couple of days because it is all my fault that the nasty man stuck a thermometer where the sun don't shine. He gets so stressed that I only take him if I really have to and I think this time I really am going to have to.

Andrew did a ten mile run this afternoon and is now so stiff he can hardly stand. When I asked him why he said he didn't realise how far he'd gone until he started back. Wish I was as fit as he is, maybe if I did a ten mile run I'ds get some sleep.

Friday 22 July 2011

Do You Sleep At Night? I Doubt It.

Had a better night's sleep last night but was awake by five, still it gave me plenty of time to sort myself out and instead of arriving stressed and breathless I was serenity itself. Not a bad morning, ventured over to the other side of the building to buy an apple from the canteen during my break, a journey that was off limits to me before I went sick, and was delighted to find that I did it without a hint of breathlessness. Things are definitely on the up at last. It was pretty quiet for a Friday but being the last day of school I suspect things will get busy over the weekend as kids celebrate their freedom.

Arrived home at one and was starving so nicked one of my son's ready meals. That'll teach me to be lazy, how do they eat that stuff? I managed only half of something claiming to be Ricotta and Spinach Cannelloni before coming over all queasy. The rest went in the bin, that will be the very last time I try stuff like that.

My drug delivery arrived and once again they got it wrong, no bungs and no 50 ml syringes. A quick phone call and they will be arriving next week.

Spent the afternoon watching events unfold in Norway on Sky News. How awful, I can't imagine how confused and frightened the kids on Utoya island must be. To some extent I can undestand the bomb attack on government buildings. If you work for government, any government, it is given that you and the buildings you work in are targets, that is the risk you take for being employed, but fifteen year old kids? What have they ever done to anyone? What makes this attack even more shocking is that the country it is happening in is not one of the usual targets. I do not understand the mentality of those that carry out such violence to fellow human beings, How do they live normally knowing what they have done, usually to people who are entirely innocent of any wrong doing? I just hope that there are not many deaths or injuries and that they catch the morons responsible.

Andrew finished year twelve today and is now home for the holidays and planning a weekend of sloth. His AS level results will be out on the 19th of August so hopefully we are going to have a peaceful few weeks before the nerves kick in. I hope he does well, there is no reason why he shouldn't have but exams can do funny things to people. What's done is done and now all we can do is hope.

Laurence came home full of news. He has a friend who's mum is a solicitor and she has agreed to do Laurence's conveyencing for him for one hundred pounds less than any of the solicitors he's contacted. He was hoping to have heard some news from the seller but I pointed out that they probably had other things on thier minds seeing as they are getting married tomorrow. To be honest I think Laurence has been extremely patient I just hope they come back with a definite answer on Monday so one way or another Laurence can move on.

After a lovely sunny drive in to work this morning the clouds have been gathering all day and now it is bucketing down, again! Peter has been working on his car all day, changing the oil etc. He has dashed outside in a bit of a flap as he's just remembered that he left the window open. Ohps! Apparently the passenger seat is soaking, my side, wouldn't you know it. Let's hope it is sunny again tomorrow so it can get dried out.

Thursday 21 July 2011

Pressure Point

Switched on the breakfast news this morning and was thrilled to find that the News Of The World has been religated to story number four. At last! Had a horrendous night's sleep, first I was too hot then I was too cold and on top of all that Tarmac kept trying to get into bed with me. As a result I had a dull headache all morning. To try and wake myself up I did some ironing and then baked a cake, after which I was shattered so had a nap on the settee while trying to watch Only Fool And Horses.

Laurence's seller is still making him wait. The seller is getting married this Saturday so now wants to put off his decision until Monday. How stressful, getting married and selling a house at the same time. At least now we know why they want a quick sale. However I do think it is a bit naughty of them to keep Laurence hanging on like this. I can't tell him what to do but I will be advising him that if they haven't given him a definite answer by Wednesday to cut his loses and make an offer on his second choice.

I've been following the story in the papers of the hospital where saline has been contaminated with insulin. So far five patients have died and a number have been very poorly. How awful is this? Having only recently been in hospital myself I know how reliant patients are on the nursing staff and how we completely trust them with the medications they give. I've had a whole host of things given to me via saline drips and never once considered there might be anything in the bag that would intentionally cause me harm. The nursing profession has already had enough bad press of late with the care home scandal and the treatment of the elderly, this they really do not need. From my point of view 99.9999% of nurses are wonderful. It is such a great pity then that the 0.0001% ruin the reputation of a whole profession, it's not fair on those who do work hard under sometimes very difficult circumstances. As for the nurse, well let's not forget she has been arrested under 'suspicion' of committing these crimes. So far the police have not got enough evidence to charge her (though by the time I post this blog or you read it things might have changed) so should her picture be splashed all over the papers and comparisons made with Beveley Alliott? I personally don't think details should be released until a person is actually charged. Even if this nurse is proved innocent further into the investigation her name will forever be linked with this case and as they say mud sticks. Even if completely exonerated her nursing career is effectively over.

The Nursing and Midwifery Council have moved quickly to suspend her license to practice, which again to me is jumping the gun. Yes she moaned on Facebook about how much she disliked her work and how hard and stressful it is but we all do that from time to time. It doesn't mean we are all killers just waiting for the pressure to tip us over the edge. At the moment she is in custody so couldn't work anyway. And if/when she is released what is wrong with just suspending her from her place of work, do they really have to take her license away? In this country we used to pride ourselves on our legal system and 'innocent until proven guilty' now it seems to have done a complete reversal and it is 'guilty until proven innocent', especially in high profile cases. I really hope it isn't a nurse that has done these terrible things and that it turns out to be a relative with a grudge against the hospital. Time will tell.

Back to work tomorrow this time for morning shifts so I finish at one each day, result! Seriously though it will be a good test of how organised I can be. There is a whole lot of diffence between starting work at nine and starting work at two. I'll have to get myself going in the morning instead of the tortoise pace I've adopted over the last few weeks.

It is drug delivery day tomorrow and we finally got around to clearing out the bedroom wall cupboard to accommodate it all. It was amazing to see what was hidden in there. At least twenty jigsaws, about 40 old lps, loads of pictures of the boys from their primary school days, christening gifts for both boys and cards celebrating our engagement and wedding. The best find was four scrap books that I'd made before I was married. They hold newspaper clippings from the time of Elvis's death and John Lennon's death. There was a whole newspaper from 1977 which was an Elvis special. The boys found them really interesting but as with kids today the first thing they did was turn to the TV pages to what was on. Seems little has changed, the daytime schedule consisted of golf and cricket and in the evening the main event was The Rockford Files, brilliant! Will have to tackle another cupboard next week to see what else I can find.

Wednesday 20 July 2011

The Wheels On the Bus Go Round And round

Going to have a bit of a rant on behalf of a fellow Pulmonary Hypertension suffer.

This lady was refused access to a coach trip because the small oxygen cylinder she carries was considered to be 'a danger to other passengers'. How? What possible danger could this be to other passengers on a bus? OK there is the danger that a spark from a smoker striking a match could cause an explosion but surely all coaches are now smoke free zones. So unless she stood right next to a smoker when they lit up during a break (an unlikely thing for someone with breathing problems to do) I don't see the problem. Then there could be a trip hazard if this lady was inconsiderate enough to leave the thing in the aisle, I am sure she doesn't do this and either places it in front of her or on her lap. Those drag along shopping bags and suitcases are far more of a hazard and no one has been thrown off a bus for having on of them. The there is the hazard of injury by dropping it on someone's foot but again there is more danger from other passengers stepping on your foot. The most likely explanation is that the coach company just didn't want the hassle of transporting someone who might need extra attention or 'God forbid' might fall ill during the trip. After her appalling treatment the lady in question rang around six other coach and bus companies in her area and none of them had a problem with her oxygen. Thankfully this lady is not going to just sit back and accept her treatment by this company and has made a complaint, good for her. Now I don't know if there is some law or ruling about oxygen on public transport, I suspect not if the other companies were OK with it. I don't use oxygen, so I've never had to ask the question. If there is then how are people reliant on oxygen meant to get around? Not everyone has access to a car. And what about those who enjoy coaching trips both here and abroad, are they now to be denied their holidays? I don't think so.To be fair I don't know what the circumstances of her refusal were but the point is there shouldn't have been a refusal at all.  I think this is one company, or maybe one individual in the company, that got it all terribly wrong. Hopefully this lady will let us know the outcome of her complaint. If she does I'll post it here.

Talking of complaints I have yet to hear back from IKEA after passing on the information they asked for. If I haven't heard by Friday I'll be giving them a little nudge.

No problems with my line last night, everything went perfectly, still have not been able to work out where I went wrong but everything is OK now and that is all that matters.

Andrew has been offered a job for the summer holidays and to celebrate he made muffins, which saved me a job as I'd planned to bake today. They were OK if you ignored the burnt bits and the rather heavy use of orange essence.

Laurence still hasn't heard anything back from the estate agent so the sellers must still be considering the offer. No news is good news.

Sitting in the study this morning we heard a thump on the window, looking out we spotted a bird lying on it's back on the patio. We rushed downstairs fearing the worst. It was a young thrush and at first I thought it had broken it's neck but then it blinked. I picked it up gently and turned it over examining it for injury. I put it down on the pation and it half hopped and half fluttered in a rather drunken way under the nearest bush. I couldn't find anything wrong with it and think it was just stunned. Checking the garden later I could find no trace of it so can only assume it recovered and flew off. Birds are always flying into our windows, I don't know why, maybe we are on some sort of bird flight path. Having said that there are a lot of trees and bushes around the house, perfect nesting places, so I'm more likely to think they might be young birds just getting it wrong. Whatever the reason I wish they wouldn't do it, I hate that sick feeling when you think you might have a seriously injured bird on your hands.

It didn't rain today but it was damp, cold and miserable, Getting fed up with it now, come back sun, it is supposed to be summer after all.

Tuesday 19 July 2011

Industrial Disease

Major panic last night when I spotted air in my line. I'd finished switching the lines over, packed everything away, took out the rubbish and for some unknown reason decided to give my line a final quick check and there it was. I don't know how it got there because I am meticulous about air pockets and hygiene. Anyway some frantic flicking ensued to try and break the big bubble into smaller, harmless ones but it didn't work, every time the machine shot another dose up the line the small bubbles rejoined into one big one. In the end I removed the line and re-primed it (this is where you shoot medication along the new line to remove air and ensure there isn't a break in delivery). This worked and panic over. Still don't know how it happened but you can be sure I will be triple checking everything again tonight, double checking is apparently not enough.

There is an outbreak of eye infection at my place of work recently and I cannot be surprised given the state of the work place. Not to put to fine a point on it the room is filthy. The way we work has given the cleaners the perfect excuse not to clean the work stations. We 'hot desk' so you never end up in the same place twice and the work stations are rarely empty. Although our headsets are our own we share the keyboards, mice and phones. We have complained for months but nothing got done and suddely an eye infection is doing the rounds, and a nasty one at that. What really annoys everyone is that it would be so easy to fix. If each work station just had a packet of anti bacterial wipes at hand we could wipe our own desks and equipment down at the start of each shift. Blimey even my school room was never that dirty and that had over one hundred snooty nosed teenages surging through it each day. Lets hope that those in charge sort it out soon before something nastier breaks out.


Had a full day today, did a huge pile of ironing this morning then it was off to Milton Keynes shopping centre this afternoon. I managed to walk around without the need for a wheelchair but with a lot of sit downs. I came away with some new summer pj sets, I don't like nighties and it is too hot for long pyjama bottoms so I bought some nice shorts and strappy tops to sleep in. I also raided Boots and Waterstones. We stopped off in Tesco on the way home to pick up the things I'd forgotten yesterday (I always forget something, usually something vital) and then home for tea. Really need my bed now and no, not just because I want to try out my new pj's.

Andrew spent the day at home again but this time because it was sports day and sixth formers, if they are not taking part, can stay at home to study. He did some work in the morning and joined us for the shopping trip in the afternoon. Despite complaining about his stomach and having a good lunch before we left Andrew still managed to scoff a cornish pasty and a muffin on the way around.

Laurence was back at work today and came home shattered. Like most people he hates the first day back after a break. Still no word from the estate agent so we can only assume the sellers are still considering the offer.

Planning a quiet day at home tomorrow, if I get the energy I might make a cake but my priority will be to rest. I have already picked out the DVD's and bought the chocolate, now all I need is the rain to stop me feeling guilty about not doing the garden.

Monday 18 July 2011

Woke Up This Morning Feeling Fine

Stayed up and watched The Apprentice final last night and was so pleased someone nice won it this year. Yes Tom is a bit of a geek but he is also a gentleman and I think he'll do well. Let's face it some of the others would have stabbed their own mothers if they thought it would have got them the money. Thoroughly pleased with the result.

Walked into the kitchen this morning to be greeted by a forest. I swear the Dill had multiplied overnight. I could smell it before I got down the stairs. Untied the bunches from the saucepan rack and chopped some to put some in bags and freeze. The rest I've bunched together and hung in the corner of the kitchen to dry.

Lazy day today, lovely soak in the bath with a lush bath bomb then a potter around getting the downstairs straight. I've only been back at work a total of twelve hours and the living room is a tip. Really itching to get out in the garden but once again the weather was against me so I went off to do some shopping instead. Thought I may as well get the chores done then if it does stop raining at some point I'll be free to get out and do what I want to do. I felt very chipper today considering I'd just done my first four days back at work. I seem to get days when I'm bursting with energy, such as today, and other days when everything seems to be an effort. Knowing my luck I'll be in the 'I can't be bothered' phase as soon as the weather brightens up enough to to do some gardening. Mostly I'm somewhere in between which is OK but I so wish I could feel like I do today, everyday.

Andrew was home when we returned and still suffering with his stomach. He went to school because 'being at home is boring' so I don't think he is quite as bad as he's trying to make out. He did decide not to go to kung fu this evening though and it takes a lot to stop him from going to that so not sure what to think really. I have tried to persuade him to go back to the doctor but he keeps saying 'what's the point?' Men, even little ones can be right pains when they're ill but stubborn when it comes to doing something about it.

Laurence's second offer got turned down so he has made his third and final bid, and so the waiting continues. He was hoping not to have to offer his full limit so he could have some money spare for basic furniture and bits and pieces but that is looking less likely now especially as we've just found out that the seller is in negative equity. Obviously the seller is going to want as much as he can squeeze to get himself out of a hole. On the other hand Laurence's is the only offer they've had and they are looking for a quick sale, so there is still hope.

Still cannot decide whether to make the trip up to Wales next week. I'd like to go because my brother will also be there and it is rare that we are in the same place at the same time. Decisions, decisions! Getting answers out of Laurence and Andrew as to whether they want to come along is like nailing jelly to the wall. To be fair to Laurence he does have a job and getting time off can be difficult at this time of year, especially as he's only going back after three weeks off tomorrow. A lot also depends on the house buying. Andrew on the other hand is just being vague. He finishes school this week but has some parties lined up and I think one of them clashes with the dates we are planning to go down. There is nothing to stop Peter and I going by ourselves as both boys are old enough to look after themselves but I know my mum would love to see them (probably more so than me and Pete) so I'm just going to have to hope things fall into place and everyone can do the trip.

Sunday 17 July 2011

Read All About It.

Referring back to my thoughts on lottery wins I read in the paper this morning that the couple I was discussing have had to flee the country. How sad that in this day and age they cannot enjoy their luck in peace, however anyone with any sense should have know what would happen once the news got out. I feel sorry for them but they really should have realised that sometimes it is better to keep good news to yourself.

Sick to death of the News Of The World hogging all the headlines, am I the only one? Yes is is horrific and yes it is probably the biggest scandal to hit this country since the Perfumo affair but there are more important things going on in the world. I for one would prefer to hear about the crisis in Africa or the troubles in Libya instead of having them relegated to minor wrap up articles.

OK having had a bit of a moan back to the real world. Having not won the lottery myself last night it was back to work again this afternoon for the final four hours of the week. I think I've coped really well, yes I have been tired coming home and have got more tired with each passing day but overall not as hard as I thought. I sent an email around to thank everyone for their warm welcome back and to explain a little about the pump. I know that they are curious but maybe a little embarrassed to ask me about it, hopefully the email will go some way to removing the elephant in the room. There is only one downside to working again and that is the driving. My seat belt lies right across the entry site and even with a large pad over the dressing it has become very sore to the point there was a spot of blood on the dressing this morning. I have no idea what I am to do about this situation so have sent off an email to my specialist nurse to ask for some advice.

As it wasn't raining took a quick jaunt around the garden this morning to check on the tomatoes, don't know if it was the rain yesterday or what but I suddenly appear to have loads of tomatoes, most the size of peas but some are bigger. Cannot wait for them to ripen, fresh tomatoes with mozzarella and basil is as fresh and tasty a summer snack as you can get. As I appear to have so many I will be making up some basic tomato sauce for pasta to pop in the freezer and if I'm really lucky I might even have enough to make a pot or two of chutney. In other areas my sweet peas have started to flower as have the poppies and the herbs are well established, too established in the case of the Dill. It needs a severe cut back as it is swamping some of the less vigorous herbs. Another month or so and it will be time to start cutting and drying the herbs for use in the winter, looks like I'm going to have a bumper crop this year.

I arrived home this evening and opened the front door to be greeted by a strong smell of Dill. I had discussed cutting it down and drying some of it with  Andrew while clearing up after lunch. While I was at work Andrew decided to save me a job and trim the Dill back for me. His idea of drying a bit of Dill for winter is obviously way off mine however as most of the plant was hanging from the saucepan rack. I have Dill everywhere, I can't move for Dill. I have enough Dill hanging in my kitchen to feed the whole village. The kitchen smells nice though. I have decided to take some and freeze it and tomorrow the rest will be moved into the shed to continue drying.  I can't be cross because he was only trying to help but in future I think I'll have to be more specific about how much of somthing I need to see me through winter. Bless him!

Saturday 16 July 2011

Love Cats

Well I finally have to admit it, my beloved Tarmac is as thick as a brick.

Enjoying breakfast in bed and a read of the papers when I was joined by my beautiful black and white cat. Unable to decide where to settle he sauntered down to the end of the bed and suddenly caught sight of himself in the large mirror Peter fitted over the dressing table while I was in hospital. He frozen and stared then got down off the bed and leapt onto the dressing table.He went mad trying to get at the 'other' cat, pawing at the mirror (got to clean it again now) trying to look around the sides and generally misbehaving himself. After ten minutes he obviously decided that if he couldn't get at the 'other' cat then it couldn't get at him and sauntered off.

Read about the winners of the £161 million lottery. They look and sound like a really nice couple. It is good to see the money going to someone who sound like they will put it to good use. Good luck to them I hope it brings them happiness. I have often wondered what I would do if I won the lottery, not likely as I rarely enter but you never know. I've always said that apart from the obvious of paying off the mortgage and seeing the boys are OK I would carry on as normal but is that really possible? No matter how careful you would be someone would find out. And then what? Move to somewhere where you are not known, lock yourself away in a mansion, hide behind security gates and bouncers? Not sure if that is the life I'd want. I've also always said I would continue working as I wouldn't know what to do with myself. This idea has radically changed in recent months and I think work would be the first thing to go. Why deny someone else a job when you don't need one? And what is the point of having money if you don't use it. So traveling would definitely be on the agenda. And to keep myself busy, well there are plenty of causes and charities needing people. After all is said and done and having thought it over carefully I'd rather be 'comfortably off' than 'stinking rich'.

Was actually looking forward to a potter around my herb garden this morning as a few weeds have appeared but the weather had other ideas, again. I cannot believe this is July! Driving to work some of the small country roads I use were almost impassable with huge pools of water crossing most of the road. I made it in only to find everyone had, had a similar experience. Roll on August, that's usually a nice month, isn't it?

In contrast the sun was out by the time I got home and it was lovely, warm and dry in my herb garden. Pity I was too tired to do anything.



Laurence admitted to being so excited about putting his offer in that he couldn't sleep and was awake until three this morning. I do hope he isn't disappointed and they reject again. It won't be the end of the world as he still has choices two and three as options but when you've set your heart on something it is difficult to settle for second best.

Andrew is still suffering with his tummy, he's miserable but who wouldn't be, hope he feels better soon.

Looking forward to the last day at work tomorrow and then four days off to gather myself together and rest. Everything is going OK so far, I am pleased at how well I've slotted back in, even if I am a little slow. Fingers crossed it will continue.

Friday 15 July 2011

Sweet Dreams Are Made Of This

Did I sleep last night or did I sleep last night. I started halfway through Eastenders then was woken up for traffic cops (which was filmed in my county), missed the ten o'clock news completely and only have vague recollections of Torchwood. When my head hit the pillow I was out for the count and woke up at half past eight in exactly the same position I'd gone to sleep in. I have a bit of a stiff shoulder but otherwise I'm quite bright and bouncy and ready for the next four hours this afternoon.

There has been some debate about the rate of my returning to work and my supervisor was very concerned that it might be a bit quick expecting me to do a ten hour day six weeks from now. So to clear everything up I phoned the hospital and spoke to one of my consultants. He was fine with the phased return my employers had come up with but said that only I could assess how I was coping. As long as I am sensible and pull back on the hours if they start getting to much he doesn't have a problem. Excellent, after all the meds are supposed to make me feel well enough to continue with normal life and hopefully that's what they will do. He also reminded me that I am still only on half dose at the moment and they will be increasing this over the six week period so by the time I reach the 10 hours I should be feeling better than I do now anyway.

Had a really busy afternoon. Came home feeling totally wiped out but really happy. I missed the hustle and bustle, the gossip and of course the company. The general public can be a bit of a pain at times but without them I wouldn't have a job so can't really complain.

Arrived home to find that Laurence has put an offer on one of the houses we saw on Wednesday. It's the last one we saw which we all agreed was the best. He put in an artificially low offer which was immediately rejected so went back with an offer closer to the asking price. This offer is now under consideration and he should hear by Monday. Naturally he is very excited about the whole thing. All we can do is keep our fingures crossed and hope.

Andrew had a less successful day as his whey allergy has flared up again making him feel sick and giving him nasty stomach cramps. He is usually very careful about what he eats but sometimes something slips through and upsets him. As always he can't remember what it might be so it's back on a light diet until it all calms down again, hopefully by Monday.

Off to treat myself with two, yes two, packets of pickled onion monster munch. I feel I deserve them. Then it's drug prep, a relaxing soak and an early night.

Thursday 14 July 2011

She Works Hard For The Money

Well wouldn't you know it just as you think everything is fine and dandy there is always one who wants to spoil the party. My stalker has raised their ugly head again and taken it upon themselves to accuse me of not getting on with life and being a bit of a drama queen. This person is of course objecting to the way I write my blog and what I put into it. I don't know this person, as far as I know we have never met so I really do not understand their problem. I am beginning to realise that they are a bit thick though as they obviously have no concept of what a blog is, they seem to think I should not be writing about me, in my blog, strange! Apparently I'm also not the only person in the world with PH and carrying a pump around. Hello! Don't you think I know that? I've met others with pumps and actually had a fine old time swapping stories of the bad, sad and funny moments surrounding it. Finally, and I had to read back through my blogs to check this, I'm accused of being depressing and 'not learning to live' with my situation. I'm wondering whether this person is actually reading the right blog. Yes there are some posts where I'm obviously feeling very down but if this person also has PH, as they claim, then they would know this happens. On the whole though I think my posts are pretty positive. And before I get accused of not being able to take criticism, I get criticism all the time, for the blog and for the book. Criticism is a useful tool if the comments are constructive. You learn and develop by listening to your critics, both bad and good. It is when the comments are personal and hurtful then you have to learn to brush them off and put it down as part and parcel of exposing your work on the Internet. So far the positive comments for both blog and book far outweigh the not so positive so in my view I must be doing something right otherwise people just wouldn't keep coming back to read. So I will say it one more time, thank you for your input but if this blog really offends you that much please stop reading. Have a happy life.

Had a lovely lie in this morning, there are advantages to only working four hours a day. I was doing an afternoon shift so didn't need to be in until two which gave me plenty of time to get myself together. And boy did I need it.

Firstly I had a really terrible night's sleep. A muggy night combined with 'back to work' nerves meant I tossed and turned for most of the night. First I felt hot so off went the covers, within minutes I felt cold so back on they came. I was so restless even the cat gave up and stalked off to find a quieter sleeping place. By five I was exhausted and finally got to sleep only to wake at just after nine feeling muggy. A quick cuppa and a read of the paper followed by a shower and I was raring to go.

I wear a uniform for work that has quite a bit of stuff attached to it. Yes I know I should have got it all together yesterday but I didn't. I found my ID badge and my swipe card but could I find my belt or my epaulets? Of course not. So the hunt was on and I'd emptied and rummaged through all but one drawer in the bedroom before I spotted the belt neatly curled up on the bookshelf and the epaulets lying underneath them, panic over. Putting the uniform on made me realise just how much weight I'd lost, it is so baggy. However on the plus side the extra room meant it was easier to hid the line and I was really pleased at how much I'd managed to tuck into my shirt without any tell tale bulges. There was still the few inches between me and the bag holding the pump but there is always going to be that and unless they were very observant or were deliberately looking for something I doubt anyone would notice.

Well coped much better than I thought I would. I was a lot slower than I used to be as I'd forgotten some to the codes and phone numbers I use but all in all I fell back into step pretty well. My supervisor had a chat and made sure I would rest when I needed to and that was all that was said. I enjoyed myself but boy was I tired at the end of the afternoon. Only to be expected after being off for so long. The trick is now going to be getting the pace of return right so I don't over do it. I was glad to get home and will probably sleep like a log tonight but yes it was very good to be back.

Laurence has narrowed it down to two houses now, the final decision cannot be far off. I'm betting an offer will be made sometime next week.

Wednesday 13 July 2011

This House Goes On Sale Ev'ry Wednesday Morning

I have had a reply from IKEA.

Dear Mrs Roberts,

Thank you for your email.
Firstly I would like to offer my sincere apologies for the experience you detail in your email below. It is quite clear that you have not received the level of customer service that IKEA or our customers expect.
I have phoned the store and they have informed me that they always ask customers for an item to leave behind when borrowing a wheelchair but they do not specify car keys. They have told me that this system is in place due to wheelchairs being stolen in the past.
The customer service manager in store who I spoke to has asked me to see if you recall the name of the person who your husband was speaking to in the store about this and we will be able to investigate this for you to ensure nothing like this ever happens again.
Also I am pleased to offer you 2 free meal vouchers for you to use if you ever decide to visit IKEA again in the future. We understand that this offer will go no way to compensating you for the experience you have had at the hands of our staff but hope that you will reconsider your decision to never visit IKEA again 
Kind regards,
Mark E
IKEA Customer Service.

My reply.


Dear Mark E

Thank you for your reply to my complaint. I have asked my husband about the man he spoke to and this is what he has told me.

The male was of Asian appearance with a very round face who gave his name as ‘IMEE’. My husband asked about the wheelchair and offered a credit card and a Costco membership card as we had on previous occasions without any problem. The male refused to believe that these had been accepted in the past and said the only things he would accept were a driving licence or car keys. He said this was a company policy not just a store policy. He was very rude to my husband and when my husband asked to see his name badge to confirm his ID the male said ‘I don’t have to show you that’ and walked off terminating the discussion.

I hope this helps with your enquiry and that you will let me know the result.

Thank you for the offer of the vouchers but I will be declining.

Let's see what response I get this time.

Well I tried the epilator in the bath this morning and yes it can hurt more than waxing but the results were good. Don't think I'll be using it for anything higher up than the knee though.

Went out to see some properties with Laurence. We arrived at the first house and parked up waiting for the estate agent who said he would meet us there. A couple of cars went by and we wondered if one of them might be him but when he did arrive there was no mistaking him. BMW convertible, flash suit, winkle picker shoes and lots of bling, we couldn't stop smirking. If anyone was born to be an estate agent it was this guy. Appearances aside he was very nice and really knew his stuff. The first house was a two bed mid terrace and in excellent condition. The stand out feature was the bathroom, separate jacuzzi bath and shower all beautifully laid out with underfloor heating. Absolutely brilliant. The next one was horrible and smelt as though something had died in there. The third one was all oak floors and Gothic light fittings but again very well kept and spacious, if I were starting out again I'd have bought that one, it had a good sized garden and the road was very quiet. Houses four and five were very small and cramped and five looked like a bomb had hit it. If you are trying to sell your house would you leave half eaten toast and full cat litter trays lying around? No, of course not. The final house was the one that really took our breath away. Newly decorated throughout, fully fitted kitchen, all new units, open plan lounge/dinner so very spacious, jacuzzi bath and loo upstairs, shower downstairs, utility room, two large bedrooms and a nice medium sized garden and all for 100 grand for a quick sale. They are even throwing in the fridge freezer.

Wisely Laurence has kept all the paperwork from the properties he saw last week and has gone through all again and narrowed it down to three possibles. Houses one and six from today and one from last week. Now all he has to do is decide which one.

My book is still selling well, I'm surprised how well to be honest and I've even received a lovely e mail from an American lady begging me to write another. In case you want to take a look, here is the link.
http://www.amazon.co.uk/Charter-Walk-ebook/dp/B0051GQH0A/ref=sr_1_1?ie=UTF8&qid=1310551241&sr=8-1

Back to work tomorrow, really nervous. What if I can't do it, what if it is too soon and I'm making a big mistake? I guess the only way to find out is to try.  Wish me luck!


Tuesday 12 July 2011

Waxing Lyrical

Another day another photo. This one shows the pump with the cassette attached, that is the black lump at the bottom. The cassette is removed and thrown away every twelve hours. The long line is the bit that attaches the pump to me. The white cylinder bit is the air trap, it is not a good idea to have air bubbles in your blood, while the smaller white bit is the clip that stops the flow of the drug so it doesn't pour over everything when discarded. The two pence coin is to show scale. Simples!

Still no word from IKEA.

Had a bit of a run in with my beauty salon. After weeks of not being well enough to have anything done parts of me resemble one of our tree swinging cousins so having got the all clear to return to work I figured I'd also be well enough for a bit of waxing and nail painting. I phoned up to order the works at my usual salon and was looking forward to feeling more feminine again, they had other ideas. As usual the receptionist asked a few health questions and when I explained about the line she went all quiet. She asked me to hold while she presumably went to consult with the girl I was being booked in with. When she returned she offered a lot of platitudes but the basic message was 'we would not touch you with a barge pole'. All I wanted was a below the knee leg wax, a pedicure and a manicure, all miles from the line site but no they were not having it so I hung up fuming. However this left me with a hairy little problem so this afternoon I bought myself one of those epilators. It was expensive but I reasoned that after three or four uses it would pay for itself and at least I could do it when I wanted in the comfort of my own home. I'm a bit dubious about the pain but reasoned it can't be worse than waxing, can it?

Another Tuesday and another trip to vampire alley for a Warfarin check. However it does do my heart good to know that I am single handedly giving the over 60's something new and exciting to gossip about.
'See that girl (she won points for that one) the one with the long hair.'
'What the one over there?' (points straight at me)
'Yes that one, she's got a tube coming out of her shirt and going into that bag she's carrying.'
'Ohhh really?' (stares right at me making no attempt to be subtle)
'She must have something really wrong with her to have a tube.'
'Why isn't she in hospital with it?'
'They make them look after themselves these days.'
 'Shame.'
'Yes shame.'
'I wouldn't have it though, you could tell me I'd got the worst disease in the world and you wouldn't catch me with one of them.'
 'No, it's not right to have to walk around with one of them. Wonder what she's got.'
At this point a third pensioner joins them.
'Hello Margaret, do you see that girl over there, the one with the long hair........'  Bless em.

A quick trip to Tesco and then home. By some lucky chance they had bottles of Reggae Reggae sauce on special offer to I ended up with two bottle but never mind. However here is a warning, NEVER, no matter how much you love it, nick a teaspoon from the bottle and stick it all in your mouth at once. I still have no feeling in my tongue and the inside of my cheeks feel as though they have been skinned. Still delicious though.

Off house hunting with Laurence tomorrow, cannot wait.

Monday 11 July 2011

Doctor, Doctor, Give Me The News

Still not a word from Ikea which doesn't surprise me, well actually it does. Even Halfords managed an immediate automated response so at least I knew my message had got to the right place.

We were woken up by the phone at five to six this morning and fearing the worst Peter made a dash for the study. The phone rang off before he got there but the phone log showed up as Laurence's place of work. We were rather annoyed about this as Laurence is on annual leave at the moment so they shouldn't have been calling him at all. He goes back on Monday and will be having a word. Whatever it was they wanted this morning couldn't have been that important as they failed to ring back. Thanks a lot!

Well today was the big day and after lunch I drove to Bedford to meet with the doctor. We were sitting there chatting when he suddenly spotted my line "oh my God, you've got a Hickman line!" Obviously the person referring me had neglected to mention this. The questions then centered around what care I needed during the day and how I was going to be eased into work. In the end he agreed that there was no reason why I shouldn't try a return to work. We came up with a plan of a slow six week period of gradual increases with the reassurance that if I felt I needed longer then there would not be any problem with that. Once again he was nothing but kindness and understanding.

I don't normally comment about celebrity silliness but I feel I have no choice. Harper Seven? Yet another example of why persons with a combined IQ of lower than 50 should not be allowed to name thier children by themselves. Seriously though what was she thinking? There are some beautiful traditional and modern names such as Amy, Summer or, yes, Victoria so was there really any need to name the child as though it were a new brand of toilet cleaner? It is the baby I really feel sorry for. Her school days are going to be hell, I just wish these idiot celebrity parents would consider their child for a change instead of constantly trying to grab headlines.

You may have noticed that I've added a new photograph to my blog. This is a picture of all the equipment I use in my daily drug preparation and dressing change. In the picture from the top left hand corner you'll find,
three small green packets, these are alcohol wipes to sterilise pieces of equipment such as bungs.
1 packet with orange strips is the clean dressing.
Top right hand corner is the long line and directly underneath two cassettes that fit to the pump and hold the  drug once it's been mixed.
Under the small green packets are two sterilised dressing packs that hold swabs used for cleaning and a plastic tray to hold bits and pieces during the procedure.
Two boxes of the drug are next and underneath them two 50ml syringes, two 10ml syringes and four needles.
Finally a small sachet of cleaning fluid with which to swab the entry site before putting the clean dressing on and three packets of surgical gloves. No wonder this treatment is so expensive.

Off to take some paracetamol, don't know how but I've pulled my shoulder and it is really painful. I am such a clutz.

Sunday 10 July 2011

Fire!

I have been asked for my receipe for meatballs in tomato sauce so here it is. This serves four as a main or six as a starter.

Finely chop half a large onion and crush 1 - 2 cloves of garlic. Fry slowly in about 1 tablespoon of good quality olive oil. Cook until soft but not brown. Skin and chop 6 - 8 pork sausages, cumberland are excellent for this receipe. Add to soften onions and add freshly ground black pepper. You can add a pinch of salt here if you wish but I don't use it. Cook for around seven minutes until sausage pieces are browned all over. While waiting put a large pan of slightly salted water on to boil, when water is boiling veigourously add 400 grams of pasta, I prefer fusilli, and cook for ten minutes. Add a standard sized can of chopped tomatos, a chicken stock cube and a quarter can, use the can the tomatoes were in, of water. Stir until meatballs a covered and stock cube has dissolved then simmer until pasta is ready. Serve with green salad or garlic bread or both. Enjoy!

Sitting watching the Thomas Crown Affair with Peter and Andrew last night my nose started twitching. "Can you smell burning?" After a lot of sniffing and exchanging of funny looks it was decided I was imagining things and we settled back down. Ten minutes later I voiced the opinion that not only could I still smell burning but it was getting stronger. With much sighing and grunting the film was paused while a quick search of the house took place. It was only when we stepped outside to check the cars and saw a whacking great fire engine, blue lights ablaze, at the end of the road that we realised the smell wasn't us but one of our neighbours. All the our other neighbours were out watching but we spotted the little huddle of people crying outside the gate and went back in. I do not get a kick out of watching someone else's misery.

In the cold light of day things turned out not to be as bad as we first thought, the family car had gone up in smoke but the home was relatively untouched.

Watched the British Grand Prix this afternoon and once again I'm left wondering why I bother putting myself through the angst each year, but just like the tennis I'll be on the settee rooting for the Brits again next year.

Managed a three way chat with my brother and sister this afternoon and have made preliminary plans to all meet up and take my mother out to lunch for her birthday. We've sort of agreed a date and both boys are keen to go so provided my health holds out it should be a good couple of days.

Talking of trips Peter is planning a little jaunt abroad just for the two of us. He is thinking Amsterdam as it is flat but to be honest I'd be grateful to go anywhere where we can just have some time out away from everything.  I've never been to the Netherlands so am quite looking forward to it.

Tomorrow I'm off to see the occupational health doctor to arrange my back to work plan. I have to admit I'm beginning to feel nervous about returning to work. I've been off for a very long time and I'm wondering how I'm going to fit back in. I hope I remember how to do things. Time enough to worry about that though, the first hurdle is agreeing what I can and cannot do. I'm sure it will all work out in the end but I'll be glad when I know exactly what they expect of me, hopefully not much, at least for a week or two.

Saturday 9 July 2011

Shiny Happy People Laughing

Woke up around three this morning with searing pain between my shoulder blades and gasping for breath. Tried everything to get rid of it but in the end had to wake Peter up and ask him to fetch me some paracetamol. Finally subsided about a hour later and slept until eight. Still very sore but feeling better, no idea what it was but suspect it might have had something to do with the pile of pasta I ate after a four day fast.

Overall feeling so much better today, positively perky in fact. Cooked a huge pasta with meatballs in tomato sauce and then went off to Costco with the boys. Primarily Laurence wanted to look at appliances etc for the house he hasn't bought yet. He knows that he won't have to buy a lot of stuff initially as we have items in the loft that we'd put aside for when one of the boys moved out. There is crockery, saucepans, kettle and even a microwave. All in good working order but discarded because they were big, small or just not liked. I suppose it is only natural that he'd want to look at new stuff, even if not entirely practical. Keeping that in mind I still haven't worked out how I came home with twelve chocolate muffins, a kilo of strawberries, half a pint of cream and a jar of jelly beans. All I can say is NEVER let me out shopping when I haven't eaten for a few days.

I must say it was fun looking at the washing machines and sandwich makers and all the stuff I usually whizz past. Laurence kept diving off shouting 'look at that! I've got to have that' and his excitement was quite infectious. For me it was the free tastings that grabbed my attention and I tried everything, often bribing one of the boys to go back and get me a second sample. The one thing that really got me going though was pieces of chicken in Reggae Reggae sauce. Heaven in a little plastic pot. It was so delicious I had to be dragged away from the stand or I'd have commandeered the lot. Unfortunately being Costco you couldn't buy just one bottle and even I couldn't eat the amount they were selling so I'm going to get a bottle from Tesco and try it out next week. The comedy moment, and there is always one when we are all out together, was provided by Andrew.  He was walking around with his sunglasses on his head, a la St Tropez, when he suddenly did this enormous sneeze that sent his glasses flying down the aisle. An old couple were pushing their trolley towards us and as they past the old boy gave a really dirty chuckle and muttered bless you boy and carried on shoulders shaking with laughter. The glasses were retrieved and we continued with a bright red Andrew in tow. We were still laughing about it on the way home. And on top of all that I managed to make it around the store without the help of a wheelchair. Brilliant!

The only downside is I'm still getting sore when driving. Today I put a large pad of gauze over my dressing and then used the padded cover on the seat belt. It was better than just the cover but I still felt sore afterwards. Peter is wondering whether it is just that everything is still healing but I'd have thought it had done all that by now. I'll just have to ask Carl when I see him next.

All in all a good day and now taco's for tea, followed by a very large chocolate muffin and an evening dipping into the jelly beans. Well someone has to eat them.

Friday 8 July 2011

Time To Face The Strange Changes

Laurence came home from his house hunt yesterday dizzy with excitement. Out of the five properties he saw he has earmarked two for a return visit. He has also lined up several other properties to see next week which hopefully I will be able to go along to. He also came back with a mortgage agreed in principle from the Halifax so he had a really good day. Peter has also seen some properties that would suit us and for so much less than our current house is worth. I'm going to have to pull him in a bit as we cannot possibly move until after Andrew finishes his A levels but I suppose it does no harm to look.

The sickness tablets have finally done the trick and I'm feeling much better today and have managed to down a slice of riveta, one apple, half a bag of tortilla chips and half a can of tomato soup all washed down with gallons of Ribena. I work on the principle of a little bit of what you fancy does you good. Made it into the Brompton without incident and was soon chatting to one of my consultants and Carl my nurse specialist. I was weighed and alarmingly I've lost close on to another five pounds so all agreed something had to be done quickly. After a long chat we agreed to knock the dose back to 1.2 micrograms per kilo per hour even though it might make me a little more breathless as that was a dose I could handle without any side effects. I'm to remain at this level for the next three weeks to enable me to start eating again and build up my strength and weight. While I'm doing that they will be contacting the paliative care team who, according to Carl, are excellent at helping patients like me who need strong drugs but find them hard to tolerate. The plan is to get me on a regime that will stop me being sick before the drug is increased again, if it works my dose will be increased again until I am at my optimum level. The hope is that once that level is reached I'll be weaned off the sickness meds as my body gets used to the iv drug until I don't need the sickness meds anymore. It is going to take a little longer this way but hopefully the end result will be worth it.

Andrew said the funeral went as well as these things can and was glad he made the effort to say goodbye.

Phoned my mum to tell her why I hadn't been able to phone at the beginning of the week as normal, seems she has been having a few health problems of her own and is suffering from an infected tooth. She's on anti-biotics so hopefully she will feel better soon but I've told her to ring the dentist if she isn't feeling better by Monday. Another worry for her is that she has one of the Beko fridge freezers but having checked the product number on the website for her it isn't one of the models with the problem. Big sigh of relief on that one.

Not even an acknowledging e-mail from IKEA as yet but I am not surprised at this. Let's see what next week brings.

Got the call from Healthcare at Home to put in my stock levels. All the way through she was tutting away saying the hospital have given her the wrong levels. I'm going to let the sort that out between them, sometimes it is better not to get involved. As long as I get what I need I really don't care who has made the mistake.

Thursday 7 July 2011

Looking Forward All That I Can See Is Good Things Happening

Finally felt up to complaining to IKEA this morning so had a good old moan.

Dear Sir/Madam


I had the misfortune to visit your Milton Keynes store on the afternoon of Saturday 2nd July 2011.

I am a disabled customer who needs a wheelchair to get around. Usually I bring my own but on this occasion we anticipated making a big purchase so left mine at home with the intention of borrowing one from the store. My husband left me in the car and went to find someone to help. In order to borrow a push along no frills chair my husband was told he would have to leave his car keys with at the wheelchair area. We had borrowed a chair for a previous visit a month or so ago and no such request was made. My husband was told it has always been company policy and was then called a liar for mentioning how we’d borrowed a wheelchair previously. 

My husband returned and we decided to leave your store because in order to get the wheelchair my husband would have had to leave his keys, bring the wheelchair out to the car to fetch me, return me to the store leaving our vehicle unlocked, retrieve the keys, go and lock our vehicle and then return the keys to the wheelchair area where I would have been left as some sort of collateral. He would then have had to reverse the process, possible leaving the car unlocked with items in the boot when we left. Does this seem reasonable to you?

Compare my treatment in your store to that of ASDA next door when a quick chat with customer services secured me a key to a motorised scooter, which was brought out to the car for me, without us having to leave anything behind.

You are a complete disgrace and I strongly urge you to revise a policy which requires disabled people to leave their vehicles unlocked in order to have the privilege of using your store.

Hazel Roberts


I'm still feeling a bit yuk so maybe the last bit was stronger than I'd intended but we'll see if we get a response, I will keep you posted.

My battle to keep my food down continues. Apart from a brief hiatus on Monday I've been constantly throwing up despite the anti sickness drugs I've been given. I was supposed to go to the Brompton today for another drug increase but even though I'm upright and managing to keep down Ribena and toast I'm nowhere near well enough for a trip into London, well not without a bucket. So I rang them and spoke to Lisa, another of the nurse specialists, who informed me that this is a perfectly normal occurrence when we get to the larger doses and they had been expecting this to happen at some point. Charming! Anyway she told me not to panic but to hang on and she would talk to one of the doctors and then if he approves will talk me through the process of reducing the dose myself so I can feel more human. Then I'll have to go and see them again and we'll have to decide how we continue the increase, it maybe that instead of increasing it by two as they have been doing up to now, they will do it by one or even half with bigger gaps in between so I get used to each change properly. We will see.

I have the house to myself for a few hours today as Peter is out with Laurence viewing houses. I wish I could have gone with them but will have to be content with the pictures they will be taking. They are seeing four properties today all in the Rushdon area of Bedford.

Having said that being on my own is such a novelty these days I'm actually welcoming it. Two hours or so of not being asked if I want anything or how I'm feeling will be like heaven. I know they mean well and I'm really grateful but sometimes it gets a bit much, especially with three of them at it.

Had to write a note for Andrew for tomorrow as it's his karate trainer's funeral. They had their first proper session on Monday and Andrew said it felt really weird without him. I guess it will as it was Jules who pushed Andrew to do his black belt. Jules has been a big part of Andrew's life for going on six years so it is natural that he is going to miss him. I just hope he handles the funeral OK, the only other one he has ever been to was his grandfather's but then he had the whole family around him for support. I'm sure he will be OK but being a mum I can't help worrying.

Finally got the call from the hospital. They have phoned my gp and got him to prescribe a special antiemetic that they use at the hospital. They have given these to me when I've been ill following surgery so know they work and don't give me any side effects. Andrew was early home from school today so went out to collect them for me as Peter and Laurence were still out looking at property. They are also a non drowsy version so unlike the others I should stay awake after taking them. If I'm feeling better tomorrow, which I'm assured I will, then I'm to go down to the Brompton and they are going to reduce my dosage temporarily. Them they will have time to come up with a plan of action to increase the drug in smaller doses over a longer period of time to enable my body to deal with it. Just wish things could be less complicated sometimes but at least my breathing is continuiing to improve so it is not all bad news.

Had to do my drug count today ready for Healthcare at Home to ring up tomorrow to get my stock levels. If I am reading the figures on the sheet properly them most of the stock I have is still well above the re-stock figures. If that is the case then I should be getting a much smaller delivery this time around, and hopefully, everything I need in the quantities I need them. The two hugh plastic containers we bought at ASDA on Saturday fit neatly into our bedroom wall cupboard and hold almost everything, bar a box of syringes so at last the hall is looking less like a dumping ground for boxes.

So another step back and another trip to London but at least now I'm having more steps forwards, here's to another of life's big adventures.

Tuesday 5 July 2011

Praying To The Porcelain Goddess

I am just about recovering from the worst migrane ever. Started on Sunday night when I began to feel a bit 'odd' then I started to throw up just before going to bed. Convinced it was 'just one of those things' I went to bed in the hope of sleeping it off. I slept well but when I woke up I started to be sick again and my face felt as though it had been kicked in. I still didn't recognise it as migrane though because the ones I've had before always started with visual disturbances which I hadn't had. Peter was really worried that I'd got an infection while I was wondering whether the promised sickness that was supposed to accompany my last drug increase had suddenly materialised. My temprature reading was normal so I took one of my sickness tablets and went back to bed. I spent the whole day there, between trips to the loo. By the evening my stomach began to settle and desperate for something to drink I request a cup of sweet tea. I managed to keep it down and knew that I was on the road to recovery. I took another sickness tablet before bedtime as a precaution and woke this morning feeling a lot better but very light headed which I've put down to being dehydraded. I'm drinking loads and have also managed half a can of tomato soup so hopefully bu tomorrow I should be back up and running. Here's hoping.

Because I was incapacitated Peter had to step up to the mark and help me prepare my drugs last night. He was a bit slow but together we got it done. It is comforting to know that if ever I was totally out of it I have someone who can step in and do it for me. Though a bit more practice is needed and I definitely need to get some bigger sterile gloves as the double gloving technique proved a little bit painful and removing the top layer of gloves for the second part of the procedure was a little tricky to say the least. Peter was very nervous as sterility is vital and I think he was worried about accidentally causing an infect but to be honest I've lived with him for over twenty five years so by now his bugs must also be my bugs so I don't think he has anymore chance of infecting me than I have.

I was supposed to be going to the Warfarin clinic this afternoon but I really couldn't face it today. Unfortunately I dropped off this afternoon and only woke up after the clinic would have finished so was unable to change the date. I can now look forward to a letter telling me off sometime this week. I will call them tomorrow and make another appointment.

I am making preparations to return to work and have made an appointment to see the Occupational Health Doctor to discuss a graduated return. When I've been ill for a long periods before I've always kicked against having to do a graduated return but even I realise diving straight into a ten hour day would not be a wise thing to do this time around. I have been very ill for a very long time and although I'm feeling better (yesterday not included) it is probably going to take at least a couple of months for me to be fully up to speed. There is a great deal of difference between sitting watching TV and being able to rest, sleep, eat and drink when you feel like it and having to take scheduled breaks inbetween dealing with stroppy members of the public. I admit to wondering whether returning to work at all is a good idea. I want to but am now very aware that my body doesn't have the strength it had even six months ago but the only way to find out is to try it. So on Monday I'm off to see what the doc recommends. To be fair he is brilliant and really knows what he is talking about. He has done his homework regarding PH and so I don't have to explain anything to him, he knows what I'm talking about and what my limitation are. It is so refreshing to talk to a medical person outside of the specialist centre and for them to know what you are talking about. He also doesn't patronise or presume he knows more than I do which means our meetings are usually stress free and productive.

Time for more soup and I might even try a bit of bread to dunk. Hopefully back to normal tomorrow.


Sunday 3 July 2011

And I'm Feeling Good.

I love Total Wipeout. If I was fit I'd be there in a flash, I'm especially keen to try the big red balls but not so keen on dizzy dummies due to my tendancy to throw up at the slightest provocation. It looks like a lot of fun but knowing me I'd probably end up breaking something, still I can dream, something I had trouble doing last night thanks to the local yobs. They started at around eleven just as we were finishing our film and considering going to bed. The first thing we heard was a heated arguement going on further up the road, then more voices joined in before it all went quiet and we breathed a sigh of relief and went to bed. Just as we turned out the light a woman started screaming and swearing, then other female voices joined in and they got louder and louder as they stagger drunkenly down the road. Eventually peace decended once again and we drifted off only to be rudely awake by the same group of females staggering back up the road accompanied by several males. Thankfully this is still a rare occurance in our village, especially my part of the village.

Today was spent rebuilding my computer, as you can tell by the fact I've managed to publish this post it went well, I've got rid of a load of crap (hopefully nothing I need) and updated almost everything else. The hardest thing to do was getting rid of all my lesson plans, course outlines and worksheets. I'd spent months and months developing them all but after three years the courses no longer exist so they are useless. Hanging on to them just for sentimental value is a waste of space but I was sad to see them go. In effect I've finally closed the door on that part of my life. And once I'd done it I actually felt a tremendous sense of relief, how strange. Maybe my desperation to cling on to the old me was preventing me from enjoying my new life. As my therapist said, it is a waste of energy to look back. In the back of my mind though I still harbour the hope that should I be lucky enough to get a transplant I could go back to teaching. The reality of course is even after a transplant teaching would probably not be a good idea.

The extra dose of meds seems to be kicking in at last and I feel much better today. I'm still not breathing as well I I want to though but I've been warned it will be slow progress. My trouble is that I'm hoping for huge improvements immediately. The sensible me knows this isn't going to happen but the dreamer in me wishes it would. I know in my heart of hearts that there is a real possibility that I'll never get back to exactly how I was before this latest crisis.  I can but hope. At the moment I'm still having trouble walking any real distance or lifting or carrying anything. Just got to be patient, but that is something I'm not very good at.

I cooked my favourite spagetthi sauce for lunch and it was absolutely delicious. I'm actually considering doing a bit of baking this week, I haven't made a cake in weeks so I think it will be appreciated. I'd like to make some bread but I think that might have to wait a little longer as all that kneading might be a bit much at the moment, small, small steps Here's to even more improvement over the next few days.

Saturday 2 July 2011

I Dreamed A Dream

As last week I did not feel 100% yesterday. It seems that every time I get my dose increased the following day I'm left feeling sickly, shattered and with a nagging headache. It must be the effect of the meds, I cannot think what else it could be. If it is and it follows the same pattern as last week I will be OK today and start noticing an improvement by Monday. We will wait and see.

Did a load of washing today including a white wash with all Laurence's white work shirts in it. Unfortunately neither he nor I noticed he'd left a black ball point pen in one of the pockets. At first glance I thought we'd got away with it but closer examination revealed several black marks on two of the shirts. I've treated them with every stain remover I've got but they stubbornly refuse to move. I will keep trying but don't hold out much hope.

I watched the Murray match with hope in my heart. Indeed the first set had me visualising Murray holding the winners trophy. I could even hear the crowd but it wasn't to be. Half way through the second set and he made a mistake, just one little mistake and he swiftly went to pieces and the dream died another painful death. The sad thing is I think he could do it, if only he had the belief in himself.

To go or not to go that is the question. Forms for the annual PHA conference popped through my door yesterday. I have always wanted to go to one of the conferences as I've heard how good they are and this year it is at Heythrope park, a place with emotional connections for me and Peter. The trouble is that there will be a lot of people there whom I don't get on with. Unfortunately the PHA has it's fair share of people who seem to think that they have right to lecture people on how to live with PH and what to say or not say. I got into trouble with these people so many times for going into too much detail when talking about procedures I had or hospital visits. This is a medical forum where, I thought, you could describe things and ask advice but some people appeared to be unusually squeamish. They would go squealing to the forum moderators and my post would be pulled, again. What the moderators never knew or saw were the vicious e-mails that accompanied this squealing, they would never pm me because it would be easy to forward to the moderator to show them what these people were really like. In the end I cracked and told one of my tormentors exactly what I thought of them, in public, which got me banned. Maybe I should have passed on those emails, trouble is none are in their real names so I'd have difficulty proving who it is. Anyway the long and the short of it is, do I really want to be shut up for a weekend with people like that? I will have to have a long hard think about that one.

Tomorrow I'm biting the bullet and instead of watching the Wimbledon final I'm going to rebuild my computer. This is a task I take on usually once a year but due to circumstances beyond my control I have procrastinated until it is now approximately three years since it's last rebuild and to be honest a snail could move faster. I've back everything up and am ready to go and if I can't find something more important to do Sunday will be the day. So if I'm not around on Monday you will know why.

Went out on our never ending quest to find a storage solution for my drug mountain. We decided IKEA might have the answer so went to the MK store. Now we don't go to IKEA very often, the last time was around March and on that occasion we asked for a wheelchair and got it without any problems at all. This time we once again left my wheelchair at home in anticipation of filling the boot with goodies. Because it was very busy we had to park some distance away, all the disabled bays were taken, so Peter went off to get a wheelchair while I waited in the car. I could see by his face as he marched back across the car park not all had gone to plan. My first thought was that they had all been taken but this wasn't the case. IKEA are now demanding that in exchange for a basic, push along wheelchair you had to surrender you car keys. This meant that in order to get me into the store Peter would have to come back to me to collect the key then go and fetch the wheelchair leaving the key with the store, collect me from the car push me to the wheelchair hire to collect the key, go and lock the car, return the key and then collect me before even doing any shopping. He'd then have to do the whole thing in reverse, on both occasions leaving the car unlocked and unattended for a indeterminate period of time, with shopping in the boot. Having explained the procedure to me we both agreed to 'sod that for a game of soldiers' and went next door to ASDA. In ASDA we asked at customer services for a key to a motorised scooter and got it without any questions or having to leave anything behind for security. We also found the idea solution to our storage problem for a grand total of sixteen pounds, no doubt a damned sight cheaper than anything IKEA had to offer. I will be writing to IKEA. I will let you know how I get on.

Paid a visit to MK hospital today as I had a little bit of a crisis with my dressing. Healthcare had sent me two boxes of dressings to cover the entry site which was more than enough to last until my next delivery. Or so I thought until I opened the second box this morning. Inside were not the small neat dressings I was used to but huge, thick post op dressings. Obviously something had gone wrong and they had been mislabeled. This meant I had nothing to cover my site with from the next change due tomorrow. As we were going to MK we thought we'd call in on Boots there as it is huge and logically more likely to stock iv dressings but they didn't. The only thing they could advise was a trip to MK hospital. We decided to give it a go after much humming and ahhing as I really didn't know what else I could do. We expected to be greeted with a stonewall at best and a long, long wait at worst, our experience of our local A & E has not been great. First point in their favour free disabled parking right outside A & E. Second point in their favour helpful staff. Third point in their favour a full pack of dressings given without argument. Fouth point in their favour in and out in under twenty minutes. They couldn't have been more helpful and told me to come back if I had any other problems and they would be more than willing to help. I will certainly be keeping that in mind.

So another phone call to Healthcare At Home on Monday, can't say I'm being filled with confidence regarding their service but what choice do I have? I will remain optimistic and hope it all settles down soon.