Friday, July 30th 2010

Preparations

I’m into my last few days here at St Michael’s Hospice and preparations for my departure have been taking place throughout this week. The stairlift has been permanently removed from my house so that it will be easier for an ambulance crew to get me back upstairs (and out of the house if my health declines sharply). It will also be easier to take bulky equipment upstairs. Yes, after only about four months of use the stairlift has been decommissioned! It was something that was always seen as a temporary measure until the extension was built but even I was surprised that I got so little use out of it. This is a shining example of how disease progression can soon make things obsolete.

Yesterday my shower/commode chair and soft form mattress were removed from my room here at the hospice and taken home. I really wish I was allowed to have one of the alternating pressure mattresses I have been sleeping on for the past few weeks. It really is a notch or two above what I sleep on at home and I have been able to get some very deep sleep with no pressure sore problems because of it, but unfortunately they are very expensive and not available in the community.

The folks from equipment services also paid a visit to my house yesterday and removed all the redundant equipment that I will no longer have a need for, such as the bath lift, toilet seat riser, glide about chair and perching stool. So now we have some space we can start filling it up with new equipment!

This morning Chris (my OT with the PCT) dropped by to trial a new sling that will be used at home to hoist me when doing all my transfers. The difference compared to the ones I have been using here at the hospice is that it uses loops of material to attach to the hoist instead of plastic clips. It was also another chance to check out the techniques that will be used when dressing me on the bed. Everyone has sort of come to the conclusion that the best way to go about it is to roll me slowly from one side to the other. Only problem is that it can be very uncomfortable for me with the weight of my body pressing down on the shoulder joints and shoulder blades. We’ve been experimenting with taking Paracetamol ahead of the actual moving and handling but so far I’ve not found it to be that effective.

Richard (from Remap) called in this morning to show us what he had been working on so far as a means for me to be able to take a drink without assistance whilst sitting in my wheelchair. He came armed with a small toolbox, a portable vice and a junior hacksaw, proceeded to cut some tube to length, made some marks on others, took some final measurements, and went away again saying that he would contact me next week when it was finished!

I had to say goodbye to my new wheelchair early this afternoon as that to was being taken to my home ahead of me. So in its place I’m back to the oversized blue reclining armchair which starts to get uncomfortable on my shoulders and bottom after a few hours. Also being big and cumbersome and heavy to push means that I am now limited to staying inside my bedroom or conservatory, which is probably no bad thing at the moment as it has been raining here this evening.

The laptop computer that AbilityNet kindly loaned me whilst mine was being repaired was collected by the Courier and sent back this afternoon so fingers crossed that my one behaves itself. Once I get home I really need to start looking at getting a second computer because I literally cannot afford to be without one.

But the hardest thing this week has been saying goodbye to all my newfound friends as they gradually go off shift or go on holiday.

So now it’s just a waiting game. I’m sure the next couple of days will just fly by and before you know it I’ll be back home.

Mark

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Wednesday, July 28th 2010

Mid week catch up

My days here at the hospice are all starting to blur into one. A sizeable portion of each day is taken up with my care and various meetings as we finalise all the things that need to be done before going home next week. On Monday for instance, Jane (my OT with Adult Services), dropped by with Richard (from Remap) to discuss ways in which I could take a drink during my hours alone in the afternoons. What they’ve come up with is some kind of arm that attaches to my wheelchair that will hold a sports bottle of about half a litre. The arm will be positioned in such a way that it will be within easy reach of my head as moving my body forward in the wheelchair is no longer viable.

Another concern I had about returning home is how easy or difficult it would be to have my hair washed now that I’m no longer able to use the bath (for safety reasons). Jane brought with her some catalogues of products for the disabled and has identified something which to my mind looks like a scaled-down children’s paddling pool which is placed behind the head when you are lying on the bed. So fingers crossed it looks like I’ll still be able to use my bath toys, only trouble is I won’t be able to see them!

Following on straight after this meeting was a get-together with Sue from In Touch who has notified me that building work on my extension is set to commence next Monday. So fingers crossed there aren’t any last-minute changes.

I’ve been having some real fun and games with my computer again. I recently discovered that something at the hardware level has either been replaced or tampered with because all my DRM protected ebooks from Amazon and Waterstones could no longer be opened. I had to reregister my laptop computer with both Amazon and Adobe and in the case of Amazon had to re-download all my books again. It didn’t cost me any money just valuable time. Oh for a simple life! Oh yes, on top of that I’m having real problems with Internet Explorer which is having difficulty loading some pages and flatly refusing others. Confusingly though when I downloaded a portable version of Firefox I was able to view any webpage I wanted.

This afternoon, Bernie (the IT manager here at the hospice), programmed my Possum environmental control system with useful phone numbers. Recently one of their engineers had been to my house to set up a hands-free phone which is connected to the Possum. So now when I go home I will once again be able to make and receive phone calls both in my study and in bed.

I’ll close out with a photo taken today in the company of three lovely ladies who have done a great deal for me in my time here at St Michael’s. From left to right they are physiotherapists Jean and Helen, and occupational therapist Caroline.

In the company of three lovely ladies: Jean and Helen, and Caroline

Mark

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Friday, July 23rd 2010

Unwelcome suggestions

There was another case conference this morning in which various healthcare professionals from both inside and outside of the hospice gathered together to discuss outstanding actions necessary before I could be safely discharged. After they’d had their meeting I was called in to join them in the conservatory where they outlined their concerns over my going home and being trapped upstairs for a further 3 to 4 months. Because I have reached the next level of the disease with early symptoms of respiratory problems starting to surface, they were asking me if it would be better to spend the time living downstairs so that I could access the outside world. This sounds a great idea however there are a number of problems with it. Firstly I would have to clear most of the furniture out of the living and dining room and put it into storage. Next I would have to somehow re-populate this room with a bed, a gantry hoist, the commode/shower chair, my wheelchair and a desk to work at. The room would end up looking very cluttered. But even if I was prepared to accept all this it still wouldn’t work because of the noise and disruptions from the building work due to start next week. It would be impossible to operate my computer using voice recognition with all the background noise. I know that full well from my past experience. So it would effectively shut me down for a few months which I couldn’t tolerate. I just don’t see how I could live, sleep and work in a room that is having holes knocked in the walls with workmen moving about.

The second and more radical suggestion was that I cancel the extension altogether and just move in downstairs. So effectively it would mean living out the remainder of my days, however many that may be, in a single room and never going near a bathroom again! Why would they suggest this? I suspect it has something to do with the amount of life expectancy I have left and wanting to make the best of that time. Perhaps also there are people who feel that I just wouldn’t get the benefit of having an extension this late in the disease progression?

I was aware of course that everyone at the meeting had my best interests at heart and didn’t want to see me trapped in my own house, but I have spent well over a year trying to get an extension built. It’s caused me endless stress and worry, I’ve written to my MP at Westminster, got my local councillor involved, and called on the help of some of my healthcare professionals. In addition I’ve spent quite a large sum of my own money on a stairlift that was going to be deducted from my contribution to the Disabled Facilities Grant. On top of all this I had to sign to say that if I cancelled the project I would have to meet all the costs up to that point myself. There was never going to be a U-turn on my part regarding this decision. Come what may I intend to get this extension built if it’s the last thing I do (and probably will be smile_regular ).

On a more cheerful note I’ve been able to spend the second afternoon in a row in the company of my brother, Chris, who has driven down from Scotland to visit family. It’s also given me the opportunity to spend a little time with my niece and nephew, Emma and Rowan. It’s been a year since we last got together and although we keep in touch by phone it just doesn’t make up for seeing each other. So thanks for an enjoyable few hours, Chris. I wish we could see each other more often. Here’s a few photos from our get-togethers. More to follow shortly. Enjoy!

With my niece and nephew, Emma and Rowan, in the hospice garden

With my brother, Chris, in the hospice garden

With my niece and nephew, Emma and Rowan, in the hospice garden

With my brother, Chris, in the hospice garden

Mark

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Wednesday, July 21st 2010

Not feeling my best again today

It’s 8:30 PM on a warm summer’s evening as I begin writing this blog entry. I’m feeling very tired today, my eyes feel heavy, my appetite has dipped a little again, and although I still have lots of work to do bed can’t come quick enough this evening. But I still have another hour wait before my carer arrives. So whilst I’m waiting I think I’ll put a few words together to bring you all up to date with what’s been happening over the past few days.

I’m starting to feel at home in my new wheelchair which has allowed me get out of my room a bit more often. It’s also given me an opportunity to draft in help from my carers and the hospice staff so that I can get a few pictures during my time here of some of the kind-hearted people caring for me. So on Saturday morning Ann took up wheelchair duties accompanied by Chris (one of the friendly health care assistants) and together we explored the hospice and its grounds. On Monday it was Vanessa’s turn to push me around and this time we were accompanied by the lovely Tracey (one of the hospice’s staff nurses).

My laptop arrived back from the repair company yesterday but I had to wait until Bernie, the IT manager, was available so that he could help me set it up and put all my confidential data back on the machine. Everything is now working as it should be and the laptop is running a lot cooler. It’s a big relief to have it back because of the wealth of software and customisations that make life easier for me.

A new shower/commode chair was delivered at the hospice for me to try yesterday. This is the one I shall be taking home with me and using until the extension is built. It is significantly more comfortable than the glide about commode chair provided here at the hospice. The seat is well padded, there is a high back and head support, and the whole chair reclines making it much safer to sit on as there is no fear of falling forward. But as added safety the chair has been supplied with a safety harness which is probably just as well in my case and I am slowly losing control of my upper body as it gradually starts to fall more and more under the influence of gravity. The only problem with it is that the head support is a bit narrow and I can’t fit my ears in so I end up sitting there looking like Dumbo!

This morning, Chris (my OT with the PCT) called in to trial a new sling on me that had been ordered for when I go home. It was also an opportunity to experiment with a different handling technique for getting the sling on me whilst lying prone on the bed. What they have been doing lately is to raise the head end of the bed up which brings me into a more upright position. From here I’m then brought forward a few inches so they can pull the sling down my back. However, this apparently puts a load on the carer so today they’ve been looking at rolling me onto my side. Although I can just about tolerate this it is not very comfortable and there is still the concern that some carers may not know their own strength and cause pain around my shoulders which are becoming increasingly fragile.

Tonight I will be administered the last dose of the antibiotics that I was put on when I was diagnosed with a chest infection last week. Since then I’ve not had a recurrence of the croaky voice I had when secretions were building up on my chest and I didn’t have the energy to loosen them up. Fingers crossed that it was just an isolated incident rather than the tip of an ominous iceberg, although deep down inside I know that my breathing isn’t what it should be and that this was just an early warning sign. I wonder if that’s why I been feeling tired all day and lacking enthusiasm to eat much? Or is it more related to the hot weather we are having? The last time I ran into difficulties it was also very hot. Perhaps that’s it. Let’s hope so.

So let’s close out today with a few of the photos taken over the weekend and early part of this week. Thanks to everyone who participated. Enjoy!

Ann and I outside the conservatory where I have my meals.

Ann and I outside the conservatory and heading towards the car park.

My new wheelchair.

Mark

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Sunday, July 18th 2010

It was 20 years ago today…

My goodness, has it really been that long already since you were taken from us by that evil disease many years before your time? I can still remember the endless hospital visits, the feelings of helplessness at not knowing what to do, the frustration as I watched the cancer take hold so quickly and knowing that there was nothing anyone could do to save you. I remember thinking how unfair life was. And I remember that terrible day when I received the call from dad to say that you had left us. I remember driving home from work as quickly as I could, tears running down my face. It was a time of great sadness in our family.

And now here we are 20 years later and I’m sitting in a hospice contemplating my own mortality and wondering how much time I have left on that invisible countdown clock hovering above my head. I miss you very much, Mum. But in a perverse kind of way I’m glad you’re not here to see what has become of your eldest son, and what is still to come. I remember your mother crying at your funeral and saying that no parent should outlive their children. I can only imagine, but it must be a truly heart-wrenching thing to experience and I wouldn’t have wanted to put you through that. But there are also times when I wish you was here. The journey I am on is a very lonely and at times frightening one and there are some days when I truly welcome the oblivion of sleep. The way things are going lately it won’t be too long before I’ll be keeping you company at St Marks.

In happier times. Clovelly, Devon. August 1987

Rest in peace, Mum.

Love,

Your eldest son, Mark xxx

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Friday, July 16th 2010

New wheels

As I predicted I got a much better night’s rest with no headaches or coughing spasms on waking up. Phew! I’m still being prescribed antibiotics several times a day but I have to say I feel a lot more like my normal self again.

Ronnie from Wheelchair Services dropped in this morning with my new wheelchair, an Invacare Rea Azalea Assist. What I have been given is something far more suitable for my current needs than the transit wheelchair I’ve been using for the past year. The improvement in comfort, thanks to the thick upholstery, is immediately noticeable as soon as I sat in it and was positioned correctly. The high backrest gives good support to my upper back and the fully adjustable neck support takes the load off my neck muscles. The backrest can be reclined on its own or the whole chair can be tilted. This will be a godsend when I simply want to lay back a little and rest for a while and let gravity hold me in position. This combination of features makes the chair a pleasure to sit in over prolonged periods – or at least I hope so. The chair has been left here at the hospice so I can get full use out of it before I go home. This will enable me to determine how comfortable it is to sit in all day long, whilst also allowing me more freedom around the hospice and its grounds.

Maria Miller, our local member of Parliament (and the person who I wrote to earlier in the year asking for help with my planning application) visited the hospice this morning although I never got to meet her. A photographer was called in to document the event and also to take some pictures of the patients for promotional purposes. I was asked, and readily agreed to participate so had my photo taken whilst Helen performed physiotherapy on me. Afterwards, Mark, the photographer, came to talk to me in the conservatory about photography after hearing me say that it had also been my hobby and how I miss taking pictures. My frustration must have struck a chord because he seemed very keen to want to help me take pictures again. So after a chat about some of the technicalities of photography he went away promising that he would look into it. For me, if nothing else, it felt good just to be able to talk to someone about one of my hobbies rather than about my disease.

An engineer from Possum has been to my house today to install a hands-free phone that connects up to my environmental control system. I’ll now have the ability to make phone calls myself once again and will be able to do so in both the study and bedroom.

Some members of the hospice staff have been out to my house this morning to do some assessments on how easy it will be to move me, my wheelchair, and my shower chair around upstairs. They’ve also looked at the ease of getting equipment upstairs and of getting me up and down the stairs in an emergency and concluded that the easiest thing would be to just remove the stairlift altogether. So it is starting to look like after only four months of use my stairlift is going to be retired and dismantled… Possibly.

Chris and Mo (both health care assistants) gave me a guided tour of the hospice and its grounds this evening. It was the first time since arriving that I’ve been able to venture further than my room, bedroom and conservatory which are all in close proximity. Having this wonderful new wheelchair has given me back some freedom of movement (although not independently of course) as I can now go places that my previous huge armchair-like seat was unable. And it was a lovely evening too with the sun shining and a nice breeze on the face. It felt good to be out and exposed to the elements instead of sitting in a room all day.

Mark

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Thursday, July 15th 2010

A bit of a scare

Today has not been a good day for me. I woke up around 6 a.m. with a bad headache and immediately my suspicions turned to the air pocket mattress overlay I was trialling. The reason I say this is because we had real trouble trying to get me in a position where I could be elevated without having my head forced forward too much. But to avoid ending up with my chin close to my chest and causing discomfort we ended up having to lower the head end of the bed more than I would normally. So I suspect what happened is that my weakened chest muscles were just not up to the job of allowing me to breathe normally at such a shallow angle. In other words there was a build-up of CO2 in the blood.

A second problem I’ve highlighted with this new mattress is that my hands get very uncomfortable on such an uneven surface. Half the time the fingers end up getting trapped in the crevices between the air pockets and as I’m unable to remove them myself they just lay there steadily getting more uncomfortable.

But the real big problem for me today (and I’m not yet certain if it’s related to my position on the mattress) has been a build-up of secretions on my chest. Now normally this is never a problem for me but this morning I sounded like a frog when I talked. By the time breakfast was over the situation had worsened and I was struggling to get two words out before lapsing into a weak sounding cough that did nothing to shift it. Helen (one of the hospice’s physiotherapists) was called in and tried several things including putting me on a nebuliser to try and break up the secretions, measuring my oxygen saturation, and trying some simple chest patting techniques. We were almost at the next stage of looking at using suction (indeed a machine had been brought in and placed by my bedside), when things improved a little. A while later I was visited by the hospice’s doctor who very quickly diagnosed that I had a chest infection. Antibiotics were prescribed, initially in capsule form which I rejected on the grounds that they were too big to swallow (i.e. about the size of a torpedo fired from a World War II submarine smile_regular ). Large tablets these days are a hazard and can (and do) get lodged in my throat so I avoid them like the plague. Eventually I was given antibiotics in liquid form.

Helen returned a little later after having contacted the Southampton Respiratory Centre for advice (it was these folks that I had visited a couple of times last year, remember?). Basically they were saying that in situations like this things can change rapidly and that the signs I was exhibiting were indicative of a weakened respiratory system. Suddenly I was being presented with various options and courses of action ranging from staying at the hospice in the hope that the simple measures they were taking would be sufficient, moving back to Basingstoke Hospital where they had machines that could support my breathing, to going down to Southampton and spending some time in the respiratory centre under observation. My gut feeling was that today’s episode was tied to my sleep posture last night. I really didn’t want to get into the realms of non-invasive ventilation (and all that implies) when I was still trying to get my head around the fact I would never walk again. Suddenly MND was hitting me from both sides with mobility and breathing issues. It was all becoming a little overwhelming.

So I’ve decided to stay at the hospice for now and go with my gut feeling and see what happens over the next 24 hours. I stayed in bed until 4 p.m. cancelling my midday meal and feeling really drained. Later I was able to be hoisted into my chair whilst the staff swapped the mattresses over. I’ve now got the top-quality alternating pressure mattress back again so I’m hoping for a better night’s sleep and no chest problems in the morning. I certainly feel a lot better this evening and staff have remarked that my colour is returning.

Mark

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