Archive for the 'Forging a New Life' Category

Thursday 10th January – No release but some good news!

I was still hoping to get some time out today to nip home, but it was not to be! I have been on fluids most of the day, apart from a brief interlude when I had a visit fro one of the medical team who told me I needed to have a bone marrow biopsy! “Deep joy” I thought as I asked when – expecting to be told later or tomorrow.

So I was a bit surprised when he said “now” and explained that he had the kit with him!

So bone marrow biopsy number 7 took place on the spot! He was actually very good, lots of local anaesthetic and very little pain!

But the latest news is that the Docs have just been round! They thought I had already been home (Left hand right hand!) but that is now out of the question as I am starting basic treatment tonight. Apart from the allopurinol which I started two days ago, I am starting basic treatment tonight with a drug called Rasburicase and then tomorrow with a steroid (prednisolone). The prednisolone should start breaking the cells in the mass down quite quickly, but a side effect is Tumor Lysis Syndrome where the breakdown products can overwhelm the kidneys and under some circumstance can be fatal – hence the Rasburicase. I will also be having continuous IV fluids and 6 hourly blood tests to monitor the lysis products.

The biopsy results are not back yet, so there is still an uncertainty over whether it is the Mantle cell lymphoma or some other lymphoma variant, but it will be good to start treatment!

This means I won’t be going home anytime soon, the doctors aren’t sure how long I will be in, but probably at least a week, so I need to look at my clothing needs for a few days. But that suddenly becomes relatively trivial on the grand scheme of things!

So, deep breath and… Onwards and Upwards!

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Monday 7th January… Scantastic!

Well, it all happened last night – or more accurately, this morning as it was 4 minutes past midnight! One of the patients further down the ward started ‘kicking off’ sounds of furniture being smashed, Michael Jackson played at high volume, attempts to do a runner and sounds of restraint by the nurses who were in turn told to ‘go forth and multiply’. He was eventually calmed down and moved to a side room, leaving the familiars sounds of wheezing, coughing and spluttering.

This morning was all normal though apart from the lack of breakfast in preparation for my 23rd PET scan. (For readers not familiar with what a PET scan entails, please read the ‘About PET scaning’ Pages).

So with transport ordered for 9:30 for a 10am appointment at St Thomas’s, I was wheeled down to the patient transport room and waited… and waited… and waited. Eventually I went up the reception desk and asked what was happening, to be met with a blank stare and a matter of ‘I’ll see what’s happening’. 10 minutes later, with no feedback, I asked again, to be told that the driver was on his way, and he did turn up about 5 minutes later. That was uneventful, but on arrival I was told it could they had no idea when a porter would be available, so I walked the two floors (as I would normally do). And that got me thinking – I’m perfectly mobile, I only really needed a wheel chair to get me too and from the ambulance (no shoes) but once in a wheelchair one seems to fit the role. Lesson noted.

The scan was uneventful and after a quick sandwich I walked back to patient transport to be advised I might have a 50 minute wait. Fortunately that wasn’t the case and my name was called out immediately and I got back to Guys quite quickly. I had been away about 3 hours – and there was still someone there, waiting for transport home, who had been there 3 hours earlier! These ‘services are contracted out to a company called Essentia, the have a comments card – I must get hold of one…

(I don’t have a problem with the NHS contracting our services so long as the remain free at the point of use, and I’d far rather that they invested in better clinical services than in fleets of vans and drivers to move people about! And I don’t know what the terms of the contract are or what the Key Performance Indicators are, it just seemed the patient transfers were slapdash with no-one in control)

No scan results of course, they need to be assessed first, so I had a quiet afternoon after a shower, and change of clothes. I had another IV bag put up, from which I concluded I would be in another night.

Later I had bloods taken and told that I am having an ultrasound guided needle biopsy of the lump which will provide conclusive evidence, and I will probably have a visit by one of the haematology team this evening! Maybe I’ll be released tomorrow? ?.

So that’s it for now, so … Onewards and Upwards!

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Thursday 3rd January – same old, same old!

It’s a bright morning here in London, and I noticed that while the decor may have changed, hospital routines have not! I have taken some photos of the view from my window

and

Not the best view, the new cancer centre is on the left (I have now found a way to compress the files)

So with 2 litres of IV saline going in, I have re-discovered my skills at pole dancing with the IV stand every time I need to move more than 4 feet away, and the early morning wake up just as you finally get into deep sleep!

While the food has improved, it still doesn’t run to a cooked breakfast!!

Overall I feel fine though, routines this morning included an ECG, regular OBS, bloods and a chat with the ward pharmacist.

I’m still not clear about when I will be discharged – if I need more fluids I may be in for another night, but that will depend on the blood results.

Clothing might be a problem, but I hope my daughter can pop to the shops if required!

So all well and… Onwards and Upwards!

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Wednesday 2nd January – Happy New year … from Guys

So it seems that my blog posts are like buses – nothing for ages, then two come along at once! So what, you might be asking, am I doing at Guys, on the Hedley-Atkins Ward in the evening of the second day of the New Year? Read on and I shall explain!

You will recall that I had a check up about seven weeks ago and all was fine, but about 3 weeks ago I noticed a lump near my navel which looked s bit like an umbilical hernia.

I made a an urgent appointment to see my GP who thought there was something else going and referred me to Winchester Hopital to see the Colo-Rectal Consultant and to have another blood test as my Creatine levels were high. She came to conclusion that it wasn’t bowel related related, but that a CT scan would yield more information.

Meanwhile I had given the Guys team a heads up and they brought my next review forward from May to January 9th – and then when my CT scan date was confirmed, forward again to today.

The scan was on Monday but when I arrived today the results hadn’t been sent through – however I had a full set of bloods (amazed I still have any left!) and a comprehensive examination which showed that I didn’t have any enlarged surface lymph nodes (groin, armpits) – which is good news! I will probably have another PET scan in the next couple of weeks – I think my 23rd!

So I was sent on my way but instead of catching the next train, I called in to have lunch with youngest daughter. While there, I had a call from Guys asking where I was and could I come back for urgent treatment to reduce high blood calcium levels. And here I am, admitted overnight in Hadley Atkins Ward opposite Samaritan Ward, where I had all my transplants 12 to 20 years ago.

It feels strange but oddly reassuring to be back, a lot has changed! The ‘shabby chic’ (more shabby than chic) retro look of the 1960s has gone as the wards have been completely updated. The food, about which I had strong opinions – see ‘About…Hospital Food’ – is tasty and cooked in the hospital premises instead of being sent by slow boat from St Thomas’s and then re-heated. I have just had beef goulash and Plum and Apple crumble. So it seems that the catering department has realised and embraced the notion that hospital food is meant to promote patient recovery, not hinder it!

What hasn’t changed are the wonderful nursing and medical staff.

As for me, the last three weeks have been a worry, especially as my personal life in the last three months as taken a decided turn for the better.

So in time honoured tradition,

“Onwards and Upwards”

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Tuesday 13th November – Taking stock

Well, four years since I last updated the blog – and it has actually been offline for a lot of that time. This has been for two main reasons – the first was that I made some major changes to the software which stopped the blog software from working properly, and as I said in the last post, I felt that the blog had done its job.

Medically, the last four years have been largely good, although three years ago a small lesion on my leg proved to be a skin version of the old foe – and while that was treated successfully with localised radiotherapy, it was a reminder that there is something lurking, and I need to be ever vigilant. It might have been the result of stress from the divorce – who knows. As a result I went back to Guys hospital (I had been at Kings for the late effects clinic) for 4 monthly check ups, which have now gone out to 6 monthly. The last one was two weeks ago, where I saw Karen, one of the wonderful specialist nurses that looked after and treated me over the years.

Guy’s itself has a brand new cancer centre, treating all forms of cancer, including blood cancers, although there are still the specialist haematology clinics. This was first mentioned here.

My personal life is on a far more even keel, so the tag “getting my life back” is pertinent on many levels! Life is good!

Reading back through the blog brought back many mixed emotions – at times it is hard to believe I was writing about myself. As I said to Karen, most of my memories are positive – although reading about the itraconozole and some of the food brought back less pleasant memories so maybe my (now reading) glasses really are rose tinted!

There is some sadness too – reading about people I knew who are no longer here, Elspeth, Simon M, and others.

The blog only covers 2006 onwards, but of course I was diagnosed in May 1999 – nineteen and a half years ago. Over time I have seen my children grow up – two married and all with successful and varied careers, and of course my granddaughter – now aged 11.

I have been very fortunate.

So – onwards and upwards! 🙂 click here to go to the start of the blog

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Thursday – 10 April 2014 – catching up – January 2014 – March 2014

So after my last post in October, I am making good with my promise to catch up on the previous few months, so I am making good my promise!

Winchester Mill
New year 2014 stated well, I had friends staying and we went to Winchester Mill on New Years Day. This is a National Trust property and is a working water mill – and to prove it I bought some flour milled there. The resultant bread wasn’t bad, although the bread maker found it hard going as the flour is quite dense. That was all the excuse I needed to buy a Kenwood mixer in February!

New Year continued with a visit to Mottisfont Abbey, another National Trust property. Mottisfont Abbey The seasonal theme was “The Snow Quuen’s Ball” with decorated trees. You can see the rest of the photos in the gallery. Swans As you can tell, it was a lovely sunny, if rather chilly, day!

Apart from the excitement of the mixer, February was quiet, but I continued my National Trust theme with a visit to one of my favourite NT properties, Uppark. This mansion was very badly damaged by fire over 20 years ago just after some major renovations, however it has been restored (in some areas rebuilt) using traditional methods. There has been debate over whether it is reproduction or restoration, but either way, it is a stunning house high on the Suffolk Downs.

So forging a new life continues – onwards and upwards!

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Wednesday 22 October…very embarrassed!

That I have neglected the blog for nearly twelve months :(. I suppose on one side it demonstrates how much I have moved on from the original reason for the blog, to keep me occupied and to chart my progress through long periods of hospital treatment and the subsequent trial, tribulations during the recovery phase.

So, the last twelve months has been busy. I have photos for many of the events, but too many to put up in one post, so I’ll do a series over the next couple of weeks.

However in summary, Christmas came and went, with a trip to Switzerland. I went on a dive trip to the Red Sea in April, and a camping/diveing trip to Devon in May. I have been up to stay with friends in Lancashire, and caught up with old school friends. I also have a new project in the offing – more of that in a later post. I had solar cells fitted to my house, and a few other things! so I have been busy. On the health side, I am on more or less annual check-ups, although I seemed to get booked into the wrong clinic, and the appointment frequency went up for a while! My eyes are still a bit dry, but the cataract operations were a great success, and my distance eyesight is very good.

So very much upwards and onwards – and watch this space for some updates coming up soon!

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Friday…chilly November Friday!

Time I wrote up a bit more blog – a fairly busy three or four months! So first bit of news is an attempt to get a bit physically fitter. The reason for this is linked to diving! I had ben hoping to go on a diving trip with the dive club to a site down in Cornwall, and one I have been to several times in the past. However, the rules for ex military personnel diving with service clubs on sponsored trips have changed, and I now need a Health and Safety medical! (This doesn’t apply to private dives, or other diving activities).

The HSE medical contains a physical fitness test, so in order to pass that, I have joined a gym, with a view to spending about an hour a day their, five days a week, concentrating on building up my cardio-vascular strength and a bit of muscle development. I have been going for just over there months now, and noticed a significant improvement on both CV performance and body strength, so I hope I’ll be able to pass the medical soon. Of course, getting fitter has other benefits too, I just needed the motivation! Best effort so far on a treadmill is running 1.5 miles in just under 12 minutes!

MotherboardI have also ventured into the world of Apple in that I have built myself a computer running Apple’s operating system. The generic term for this is a ‘Hackintosh’ and it works pretty well. It runs most of the Mac software, and includes ‘Bluetooth’ so I can connect my (non-Apple) phone to it to transfer photos etc. It also connects to the server here (in fact I re-housed the server, and used the older server case to house the ‘Hackintosh’.Case Maybe not the best photo of the case!

The weather is getting colder as we get towards the end on November and it is getting dark by about 4:30 pm. Still, nights start getting lighter in a month or so! :). With Christmas looming, I have bought my first mince pies of the year – I ought to pluck up courage and make my own!

It has been good to catch up with some old friends too, one from my time in the Falklands over 13 years ago! (When I was last really physically fit!)

But overall, I’m feeling OK, still looking for some work, but nothing much around in my field.

So very much onwards and upwards!

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Thursday…Autumn upon us…

Oh dear, I really have ignored the blog for the last few months.

Graduation I guess the highlights of the summer were the Graduation of Rachael from Cardiff University, and me (a day later) with my Master’s degree from Cranfield University. Both days were warm and sunny, and for both of us the culmination of a lot of hard work.

The summer has been fairly uneventful. I am adjusting to my new life, I did a little bit of diving, this one taken at SwanageDiving on Swanage Pier on another lovely sunny day.

Garden wise I had another lovely crop of runner beans, although again I was late planting them, the last flush will be picked in the next few days. I have already put away the garden furniture.

I have made progress in sorting out the stuff in the garage, some items have gone to a new home (middle daughter Katie has just bought a house) and that gave me space to move in there, which meant I could unearth more things for recycling! Still a way to go though!

The nights are drawing in though, and there is a definite chill in the air. Still there are things to look forward to, holidays next year for example.

On the health front, things have been good. The cataract operations have been very successful, and my general health has been good – well, at least up until last week, when I caught the first winter cold. I have also decided to get myself a bit fitter, partly because it is a good thing in itself, and partly because to continue diving with military personnel on expeditions, I need a Health and Safety diving medical, so I need to get fit to pass that. So I have joined a gum, and until this week I have been going there for about an hour a day, 5 days a week, with a varied fitness programme. It is beginning to show results!

What else? Oh yes, a quick trip to Amsterdam to a trade show where I was operating a video camera for a friend while he was conducting interviews with some of the exhibitors. This may generate a little bit of income, which will be a bonus, as there hasn’t been a lot of paid work about.

But all in all, it has been a good and busy summer – and so.. Onwards and Upwards!

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Sunday… Spring resprung

NestingSeems my blogging has been a bit like waiting for a bus – nothing for ages, then several arrive at once!

I wrote a couple of weeks ago that spring had sprung, when we had an uncharacteristically warm bank holiday after some cold weather. Nesting2It didn’t seem to last long, but the last week has been better, and I was in the garden when I heard a knocking noise. I looked up to see a blue tit flying in and out of the nesting box. It was unoccupied last year, so I was pleased to see a new ‘tenant’ this year!

WinterWhile I was downloading the photographs from my camera, I found a few more I had taken this year – one here from January! The nesting box is on the left hand side of the garden, just past the gap in the fence trellis. There are some more photographs in the gallery.

So spring does seem to have arrived – even if a little late – so Onwards and Upwards! (And ‘Hello’ to Eileen in New Zealand! 🙂 )

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