Thursday, 29 April 2010

Bone marrow test Weds 28th April

I went to bed early on Tuesday night and managed to sleep through until almost eight. At least I wasnt thinking about my stomach. I couldnt eat or drink anything before attending the treatment centre.
We arrived at the brand new treatment centre at Kettering General Hospital. Very big, very airy and very similar to the new Prospect House medical centre close by. That is where my doctor is based. Two medical practices in one building.

Its immediately obvious that these buildings have been paid for with public money. They have been laid out without regard to staffing costs. At my doctors surgery there is a large ground floor lobby with a receptionist sitting there. Her job is to direct people to the next floor, as the surgeries are located there. You go upstairs and there are two reception desks,one for each practice, with at least two receptionists at each desk.
The new Treatment Centre also has a receptionist on the ground floor. I went to her desk to be told that I need to go upstairs. I went upstairs and there is anorther reception desk just outside the lifts. I was checked in and directed to the waiting area. And then I was collected and brought into the day ward.

The duplication and overstaffing of support staff is staggering. If these were private businesses they wouldnt waste the money. Is the NHS a job creation scheme for admin and clerical staff?
I think the treatment I m getting is second to none,but the cost of delivery must be horrendous.
But the people who make the decisions dont have to pay the bills, just ask the government for more cash or else close a ward or get rid of some front line staff.

As I said, I m grateful for the care and attention I get. I have been working and paying tax and National Insurance stamps for over forty years, so if anyone is entitled to NHS treatment I am. I just dont believe that we can afford the NHS in its present form.
Cameron, Brown and Clegg have all said that the NHS wont be subject to cuts after the election. That is just to ensure that the NHS staff will vote for them. The NHS is the largest employer in the UK and the fourth largest in the world. If cuts have to be made to stop the country going bankrupt, then the NHS will have to be cut as well.

I know where some cuts can be made that wont affect the level of front line care. You can start by closing down duplicate reception desks.

My bone marrow test went very quickly. I had a local anaesthetic and apart from being pushed and pulled while they dug needles into the bone in the small of my back, I felt very little pain. Ive had worse dental treatment.
I was back home by lunchtime and was told to rest up and not remove the plaster on my back for a couple of days.

I get the results in about ten days time.

Monday, 26 April 2010

Monday 26th April

Hi again. Another week has passed by. I have an appointment for a bone marrow test on Wednesday followed by an appointment to see the specialist on Mon 10th May. I should know a lot more after that.
If the treatment I've undergone so far has been successful I will be in remission and can concentrate on building up my strength and immune system. If not, then I will have the two courses of chemo that Ive missed due to illness.

The warm weather has been good. I can sit out in the garden or in the conservatory. Sue and I drove up to Derbyshire to visit a friend in prison yesterday, and I drove back via Loughborough and the Great Central Railway. It was late in the afternoon when we arrived, but still saw a couple of steam engines passing through the station. We go on holiday to Whitby in a couple of weeks and there is a steam gala on the North Yorkshire Moors Railway while we are there, so I expect we will have a trip on the train.

A few days ago I reported that another cat has been coming into the kitchen and eating the food we put out for Rufus. I caught him red handed last week but he escaped through the cat flap. He is quite a young cat and we dont know where he lives. He came back on Saturday morning and I was able to photograph him.

Heres the "Wanted Poster" I promised

Monday, 19 April 2010

Mon 19th April

I'm just back from a morning spent at the hospital. There were no queues when I went to have my blood taken, which is unusual for a Monday morning. Maybe everyone is stuck at an airport somewhere.
We then walked to the Centenary Wing Clinic to find that empty. Very strange. Where is everybody. We soon found out. The clinic was taking place in another part of the hospital so we retraced our steps, saying hello to a friend along the way. We arrived at the new clinic area, booked in and I went to be weighed. Another 3Kg heavier. I thought my jeans were getting tighter.
Eventually we were called in to see the specialist. He was not a happy bunny, having been evicted from the modern state of the art consulting rooms and forced to use a grotty and run down cubicle that didn't even have a paper roll to cover the couch. Or a stethoscope. Or a pad of sicknotes.
He made it quite clear to anyone within earshot how unsatisfactory it all was. And it was. Is.
It seems that the powers that be have decided that a unit that was based at Northampton is having the use of the Centenary Wing Clinic, and it's a shame because there was a continuity of care and a sense of being part of a community in the old location. And there were volunteers ready to make you a cup of tea.
Not any more.
Once again it has been proven that the people who take these decisions never have to live with the consequences, or else they wouldn't make them.

Anyway while all this was going on I sneaked a peek at the computer screen, where my records were displayed. There were tables of figures that showed various blood results, and it was clear that the numbers are going down. For instance, one column's readings for the last three months were 0.6, 0.5, 0.1. i don't know what that means but my specialist thinks this is very good, as all the other indicators show the same trend.

So what's going to happen? I'm still coughing and sniffling and I could see the doctor weighing up the various alternatives. This is what he's come up with.

Tomorrow's chemo has been postponed indefinitely and I will have a bone marrow test next week. This will determine whether the four bouts of chemo have done their job and I am in remission. If I still need more treatment this will take place at a later date.
I had a nasal swab for another test and received more drugs to keep me going for five weeks until my next appointment.

It could be good news. At least something's happening either way. I was getting sick of living in limbo.

Saturday, 17 April 2010

Saturday 17th April

Another sleepless night. This cough won't let up. It starts as a tickle and then builds and builds until I can't stop coughing. My chest muscles hurt and I've a thumping headache from where my brain is rattling inside my skull.
I'm supposed to have another bout of treatment next week. Will the specialist let it go ahead?
I'm fed up with it now.
I will be even more so if they tell me that my blood count is still very good, meaning that the leukaemia cells are negligible. I've been told that since before Christmas but I'm no nearer to completing my treatment because my non-existent immune system means I pick up anything and everything going.
Life is on hold.

I've caught sight of the cat that sneaks into our kitchen to eat all the catfood. He's a bit too quick for me but we've had a couple of staring sessions, once through the kitchen door after he'd made his escape, and last night I chased him out of the garden. I expect he'll be back again soon.

Wednesday, 14 April 2010

Wednesday 14th April

The doctors who are treating me tell me that the particular combinations of drugs that they are giving me play havoc with my immune system.
You can say that again.

My cough has returned with a vengeance. It's called pharyngitis or something like that. I don't have a sore throat as such, just a cough that won't clear anything. All the coughing gives me a headache. It used to be an annual affair, but this is the second or third time I've had it this year.
The last time I ended up in hospital being pumped full of antibiotics.
I keep ruuning through what might have caused it. Last week I spent some time in the garden and even managed to cut the grass (although it needs doing again). That might have set it off.

I've not had any chemo treatment since the beginning of February and there's a chance I won't be having any next week either. This delay keeps pushing back the date when I can resume "normal" life, whatever that is.
As it is, I'm sitting still because movement sets me coughing,and I'm monitoring my temperature every couple of hours.
It's life, but not as we know it.

Sunday, 11 April 2010

Sun April 11th

I'm writing this early on Sunday morning. It's been a nice few days and I've been able to get out into the garden and cut the grass. I've also had a go at getting the dandelions before they start blooming.
Chris has a full size pool table in the garden so we removed the covers to let the air get at it and played a few frames in the evening. Well, Chris played, and I pushed the balls around the table, occasionally potting a ball, usually the white one.

The longer I stayed out there, the more I noticed jobs that need doing. Chris made a start today by finishing off the edge of a patio that has needed doing for about 18 months, and we took a lot of junk to the tip.

After all that exercise I retired to the living room to watch the rugby. The Saints were playing Munster in the Heineken Cup and they took them all the way  but lost by over ten points. Still it was a good game and they're still in the hunt for the league championship. I ignored the golf and the Grand National and watched the last day of the cycling which was exciting, and then the qualifying for the first race of the MotoGP season, which carried on as the last season ended, with Stoner, Rossi and Lorenzo battling for pole. Should be a good season.

All this armchair sport isn't getting me fit, but the warm weather means that I can walk to the shops or around the garden without having to put on layers of clothing and heavy boots.
One more week to go before my next blood test and appointment at the hospital.

Oh, and I caught sight of the cat that comes into the house and eats all the cat food. I will be posting wanted posters shortly....

Monday, 5 April 2010

April 5th

Easter has come and gone and I'm still two weeks away from my next bout of treatment. I did visit a DIY shed over the weekend and some friends and family called around over the weekend. I even walked to the shops to get a paper.
It's not quite warm enough to get out and cut the grass, which hasn't been touched since treatment started. If it doesn't rain this week I'll have a go at it. I'm also making plans to plant some beans and other veg in containers and Chris has been talking about replacing our garden shed since last year. maybe we'll do it this year.
We replaced our back door. The old one was about twenty five years old and not very sturdy. A good kick would have dislodged the bottom panel. The new double glazed door has a catflap so that Rufus can come and go. He won't go in the house but finds my onion patch very much to his liking. Some mornings we find that all the cat food has been eaten, and Rufus has been asleep on our bed all night. Methinks we have a stray visitor.....