Monday 31 December 2007

new years eve

"No one ever regarded the First of January with indifference. It is that from which all date their time, and count upon what is left. It is the nativity of our common Adam." - Charles Lamb

It’s very easy to get wrapped up in what’s going on in our world and forget that we aren’t the only ones who are not enjoying the best of times at this time of year, at the end of the day it is just another day but we all feel a sense of anticipation for the new year I know.

So rather than give another update on Adam I’d like to just use this medium to ask everyone on the mailing lists to spare a thought for those who are suffering at this time and for those who may not be with those they love for one reason or another and for those who fight to ensure the safety of others in this world.

Be like a postage stamp. Stick to it until you get there.’……………..

Love to all


Sunday 30 December 2007

Adam Update - 2008 beckons

Its 22.40 and Adam is sitting up typing on his laptop, having access to the internet during a stay in hospital is such an enabling thing; he and I would be out of our minds without it.

Having made some improvement a couple of days into this stay it appears that the bleed continues or has restarted, he is currently having around 2 units of blood and 2 bags of platelets each day and his blood count is not rising, in fact some days it falls which suggests that the bleed is almost as bad as it was when he came in, but he is slowly incrementing with his platelets and we hope that this will help to stem the flow.

His improvement came when he was fasting and the progress seemed to stop once he started eating again so he is considering fasting again to see if this does make a difference.

I of course could do with some fasting to remove a few additional pounds that I need to lose before running a couple of marathons in April!

So it’s back to the watch and nervously wait game at the moment, he is gutted that he will be spending New Years eve in hospital and even more gutted that the fluid retention he is experiencing, which has made him swell up around the legs and other places, means that he cant get his leg on, he had hoped that we might escape for a few hours on New Years eve to see the new year in but he truly hates being stared at and it happens a lot when he is in the wheel chair without his leg.

He occasionally wears a t-shirt that has ‘ feel free to point, stare and whisper amongst yourselves’ on the front….

We managed to get out for a few hours last night and went out for a meal, he ate well and it is possible that this is adding to his bleeding hence the notion of fasting.

It’s been a long haul this one and I fear it aint over yet by a long chalk…………………………..

As we rush headlong into 2008 I imagine the words ‘let’s hope it’s a better one than last year’ in my head, strange, we seem to have heard that every New Year’s eve for the past few years!

Thanks to all who have sent mails and wishes recently, it’s much appreciated, there’s plenty of people up here but it can be a lonely place.

Love to all and A Happy and Healthy 2008 to one and all.

Friday 28 December 2007

Adam update 28 December 2007

Having had a bag of platelets and a couple of units of blood late on the day before Christmas Eve, I finally got Adam home in the early hours of Christmas eve, around 2.30 am.

The following day his energy levels were very low and it took about 30 minutes for him to get up the stairs and into bed

He was very tired and looked a bit pale so Christmas morning was quite subdued, it took a huge effort for him to get out of bed and bathed ready to make the epic journey downstairs, he didnt even want to open any presents which gives an indication of how bad he felt! The slightest exertion seemed to make him puff and pant as if he’d been running a marathon and he would sweat profusely.

In order to ease things I was dragging him around upstairs on a large towel with a pillow on it, we used this method to get him downstairs, head first and laying on a couple of folded in half duvets, there was a time when he had lost so much weight I could carry him but he is back to a decent weight now and is as tall as me so hard to simply chuck over my shoulder and lift as I may have done in the past.

Finally we got him into his homer dent on the sofa and he was clearly not going to make it down to Karen’s for Christmas dinner so it was decided that Karen would bring the food up to ours and we’d have Christmas there instead.

Simply getting from the sofa into the dining room and onto a chair knackered him and after a few mouthfuls he was not strong enough to eat.

So, we drove up to UCH, no traffic so we made it in double quick time.. note to self, always wait till Christmas Day to be ill the traffic in London is so much better, perhaps Ken Livingstone should declare all days to be Christmas Day then it’d be so much better for congestion.

To cut a long story short, he was bleeding in his stomach, his blood count was down to 5.4 and he was obviously in serious trouble, the docs were at pains to point out that with his minimal platelet count he was unable to correct the bleed and giving him platelets has become in itself a dangerous operation so we should expect the worst.

By some clever manipulation of drugs and Adams own ability to use his mind to control his body, they managed to get some platelets in, 5 pints of the NHS’s finest claret and some other blood products for good measure

Boxing day was a touch and go kind of day…….. it’s a funny thing, I noticed when we first joined this club that people on cancer wards smile at you, you get used to it over time, it’s a kind of knowing, sympathetic smile, I guess no one wants to be there…..walking down the street you don’t smile at strangers but on cancer wards you do. The smiles on Boxing day were altogether different! The docs asked in the morning if there were any other family members who would want to be here…Pauline and Karen came up in the afternoon and we had one of those, ‘lets all put brave faces on as the patient doesn’t know quite how serious this is’ afternoons trying to stay composed.

To cut yet another long story short, the medical team, his body a few prayers from some and some good grace meant that by the end of yesterday he seemed to be out of danger and was able to eat soft foods again, having been starved for 2 days he was gagging for some real food, the rice pudding and scrambled eggs got close but just made him hungrier.

This morning he is having more platelets and some more blood, he is still losing red cells but much more slowly so it appears that he is on the mend. If anyone wants to challenge him to a race around the block, this would be a good time to ensure a win!

May I use this mail to apologise to anyone who hasn’t had proper wishes for Christmas from us or if I haven’t replied to any mails, the run up to Christmas was properly manic and so replying to mails was hard to do.

My love and wishes to all near and far at this time. I hope you had a less ‘exciting’ Christmas than us and that 2008 will bring health and happiness, wealth would be great too but its no longer a priority in my world.

love to all


Thursday 20 December 2007

Adam update Thursday 20th december

I’m in with Adam at the moment and there has been a military type planning exercise to get him a day pass out of hospital for this afternoon in order that he can attend Nell’s birthday party. Then come back in tonight.

His blood counts appear to have just started to bounce back a little and his platelet count, whilst still absurdly low is higher than it was yesterday so it’s small steps but in the right direction.

We’ll bring him back in to hospital after Nell’s and then with luck and good grace he is hoping to get home for Xmas at some time over the weekend.

His body is covered in bruises and petikei which are small bruises that appear spontaneously on there surface of the skin as a result of the lack of platelets.

The podiatrist visited recently and has arranged a different dressing for Adams right foot which is less cumbersome than the boot type covering he’s been using so he is pleased to have a bit for freedom as a result.

Watch this space!


Sunday 16 December 2007

adam update sunday 16 dec

I took Adam into UCH on Thursday for a bag of platelets, everyone was a bit nervous because of his reactions to platelets but he none so needed to have a transfusion. Fortunately his reaction was able to be controlled so he got a full bag; he has very good mind control as is able to control his breathing for a short while to prevent the fast onset of the reaction.

His blood count showed that he was neutropaenic and I said to the docs that I expected he’d be back in before the weekend (note to self…. Don’t make predictions; they have an unfortunate way of coming true!)

On Friday I was at work on site and I txt him to ask how he was, he replied that he thought his leg may be infected and he was in pain. I called him and he said that he thought he needed to go into UCH. As he never, ever asks to go in I assumed it was serious and went home to have a look at his leg. It was obvious from the redness and swelling that it was infected so we jumped (well, Adam kinda hobbled and hopped) into the car.

When we arrived at UCH they confirmed the infection and put a cannula in so that they could start some antibiotics, we had packed a case anyway so were admitted to a ward.

Admission to the ward is an interesting concept, the ward sister in daycare speaks to the bed manager and specifically requests a single room for Adam as he is at risk of infection and neutropaenic, we wait for a number of hours and then get taken to a ward in the main hospital where we are shown to a bed on an open ward, we refuse to go to the bed as it would put Adam at risk and the bed manager cogitates as to whether he is neutropaenic enough, I get a bit arsey and oddly sarcastic (who moi?!)

And then eventually, a good few hours later we find ourselves in a single side room. This time on an old ladies ward where the nurses seem to be more interested in themselves than the patients and Adam is a novelty and they aren’t sure how to deal with him, quite frankly the nurse he had (who was able to grow a better beard than me!) was only just more use than a chocolate teapot.

During the night another nurse came to give him a blood transfusion and to cut a long story short she didn’t remove all the air from the giving set and I woke at 3 in the morning to hear him asking her whether or not she should be connecting the tube up as there was a lot of air in it, she told him there was nothing in the pipe, he pointed out that as we live on earth then unless there was a vacuum in the pipe it must be full of air (no idea where he gets his sarcasm from) she didn’t seem to understand and so I reiterated in my best condescending manner, which I usually reserve for when I’m half asleep having had no real sleep for a good while. And I thought she had then primed the tube properly.

To cut a long story short, she proceeded to administer the blood, including the large amount of air, Adam was clearly distressed and thought that she had dome something that was likely to kill him! He was properly terrified and very upset. Thankfully he was ok but no thanks to the nurse. It transpires that actually, the body can tolerate a fair amount of air injected into the bloodstream but he has always been told that there should be none in the pipe.

A formal complaint will be followed up tomorrow.

By the following morning the infection was much, much worse and he was in a lot of pain with a huge swollen knee and redness halfway up his leg.

The docs pointed out that they have limited options in their fight against infection for someone with Adams situation and I was reminded that he is only ever one of these infections away from being in a very dark place unless we get him into hospital quickly.

During the course of the weekend he appears to have turned the corner and has been moved today to T13 which is his normal ward so he feels much safer and calmer, the pain in his leg is slightly reduced and he seems in much better mood… we hope for this to continue.

And Alton Towers thought they had the best rollercoaster!

Love to all


Wednesday 12 December 2007

adam update 12 december

Adam and Pauline went to UCH yesterday for him to start the chemo, they met with the prof and his blood counts showed that his red count had dropped significantly whilst his white had risen, his platelet count had also risen slightly which is a good thing, however the combination of the low red and high white is ominous and the prof elected to give him a dose of Vincristine chemo immediately and then administer the low dose chemo that Adam will now self administer for 10 days.

He needed 2 units of blood and they were duly ordered and by around 6pm the nurses said that the blood was in the hospital, however they then lost them for a few hours and eventually found them around 11pm. They got away from the hospital after 4am and arrived home at around 5.30 this morning.

Today he felt a little better having had the blood, he self administered the chemo and we are now waiting for its effects to be felt.

Bailey is managing to make light work of destroying much of the house, he clearly needs a lot of exercise and so we are now thinking of looking for a dog walker nearby to cover the times that Pauline cant take him out.

Love to all


Thursday 6 December 2007

Adam Update Thursday 6 December

Having finally gotten out of UCH on Saturday, Adam has been feeling quite good over the past few days, his blood counts are still all over the place but in himself he feels a bit better than he has of late.

The Prof has decided to postpone his chemo for another week so at the moment it will start next Tuesday, this further delay is to try and allow his platelets to rise by themselves again.

He’s looking forward to Christmas and spoiling Nell! Bailey is looking forward to Christmas and spoiling the house!