stick that in your column (nasty pics inside)

Not quite in my column but close enough.

I had my bone marrow biopsy this morning. As with most things it didn't hurt as much as I expected. It was a terrible experience and not one I recommend (unless it's required) but I remember my previous ones hurting a lot more than this one did.

Obviously, I can't see what is happening so I got my mother to take some pictures of the procedure. They look really nasty so I've included some here. It makes it look worse than it is.



The 'dirty' skin is actually from back in the day when I got shingles, but that is reducing now with some great cream that I have.

On the second pic note the little red tube thing in the middle, that is a 'core' of bone that is extracted, and the slides contain bone marrow ready for checking.



I will get my results in just under 2 weeks and a decision on whether I miss the mini-BEAM chemo and jump straight into the stem cell transplant.

P.S. The location of the RSS feed has changed to http://www.deadlyhifi.com/atom.xml

get away

Finally Imelda and I did get a chance to get away. We stayed in a lovely vegan B&B near Hornsea. As well as having excellently cooked food I also had reflexology and a full body massage. It was just what I needed. I haven't had a foot massage like that since I was in Thailand. It was painful at times, but that good pain, and afterwards it felt like I had new feet. Then the full body massage, I needed that. Lying in hospital beds creates a lot of tension in the back and it was great to get rid of it. All in all a great weekend!

But it's back to the real world and this morning I will be having my bone marrow checked. Obviously, I'm not looking forward to it, but I also managed to dream about it all last night. The night sweats continue and with this period of uncertainty I'm feeling a bit disillusioned by it all.

the high road, or the low road?

What is going to happen? Well, due to the fact that I'm taking a really long time to recover from the mini-BEAM chemo I had 5 weeks ago, my doctor is contemplating missing out the next mini-BEAM and jumping straight to the BEAM and stem cell transplant.

Next week I'll be having my bone marrow checked to see if the cancer has spread there, and the reason why my counts are taking so long to come back. However, this is highly unlikely and the chemo is probably the culprit. The test is just to be sure. I will also be having a CT scan to see where the dis-ease is currently at. Then the decision will be made. Only so much chemo can be given and I seem to be on the border of not being able to have any more.

If I have BEAM then I will be done sooner and will be around for the summer, but I still have some lumps under my arm, although small, that concern me a bit.

If I have another mini-BEAM then, judging by this performance, it will be end of June before I'm done.

Obviously I'd like to be done sooner, but as there aren't many options in terms of treatment I want it to be done right. I guess it's out of my hands now. I'll just have to wait for the results of the tests and go with the advice from the doc.

So there will be another 2 weeks before I go back in, for whatever reason. Maybe we'll finally get a chance to get away for a few days. I also went out on my bike for the first time in yonks yesterday. It was really hard work, my legs are so weak. But a turbo trainer for my bike will be arriving in the post in the next few days so I can ride my bike in the house whilst watching tv. I have also been back on the Wii, and aching because of it. At least this gives me more time to build my strength up.

another day, another visit.

I realise that all I seem to do is moan, but today I had another blood test, and although I feel absolutely fine I have to have another 3 bags of blood tomorrow! I just cannot stay away from the hospital.

The weekend was good, if a little tiring. On Saturday we went to Harrogate for a spot of lunch and a friendly meet-up, and on Sunday a mothersday meal at an excellent restuarant in the little known village of Thorner - called The Beehive (The Beehive...mmmm, shame about the website). Followed by a pub visit and a few friendly games of pool, followed by some baseball on the Wii. A busy day.

Today I collecgted my bike from the bike shop with my new cranks fitted, and soon I shall have a turbo trainer which will allow me to ride my bike in the house. I won't get very far, but I love sitting on my bike.

a week of freedom

My counts are coming back up and I feel a lot better for it. Had another bag of platelets yesterday as my count was only 6, but now I'm feeling pretty good.

Due to my late recovery chemo has been pushed back to give me some reprieve so I have just over a week of freedom. I still have to go to clinic, and have a blood test on Monday but other than that there are no commitments. Maybe Imelda and I can finally get away for a few days.

one good, one bad (news)

I had 2 more bags of blood yesterday, and 1 bag of platelets, and despite taking my pyjamas to the hospital I didn't need to stay in! Woohoo. I also asked the doctors why my blood counts hadn't come up yet. They're not worried, it can take a long time, up to 6 weeks I was quoted, the more chemo I have had the longer it takes, and mini-BEAM is notorious for giving you a long term kick. That's fine and dandy but in the mean time I am having lots of blood. I've lost count now.

In other news, in my continuing quest to promote Apple products, I almost required myself a new Apple product this morning, when in a fit of madness I managed to knock approximately 350ml of honey and vitamin C concoction juice all over my shiny, aluminium skinned, pride and joy (that's a MacBook Pro to you). Luckily (or unluckily?) I managed to save the little inanimate beauty from an untimely death. I had to laugh, I wouldn't have laughed, but now I have accidental damage insurance I laugh in the face of danger. This time I won't be claiming as there is no damage.

like a bear

I am ferociously angry at myself right now! I've just been for a blood test and I have to go back tomorrow for 2 more bags of blood and 1 bag of platelets. I am still neurtopenic too. This is 17 days after the chemo finished. The doc was not worried at 14 days but said he's wonder why I wasn't bouncing back by day 20, which isn't so far off now.

I wanted to be fine and go away for a couple of days from tomorrow. It seems I will be getting no rest whatsoever from the same day in day out. I'm so pissed off.

oot and aboot

I'm out. I'm home. It feels so good to lie in my own bed, despite having to answer loads of emails...

1.56 am, Friday 9th March 2007

AAAAARRRRGGGGGHHHH!!!!!! I gotta get out of this fucking place!!!!!!!!!!!!!!!!! After being persuaded to stay I can't stand it. I slept from about 8. I had all my drips, blood, platelets, anti-biotics. 11.30 I woke, got myself ready for the night ahead. Had a sleeping pill. I was still so tired. Then the Jaundiced Avenger shits himself. I feel sorry for him. I know what it's like, But I had the decency to contain it in my pants. This has gone all over the floor. It started with a foul smell. Then it appears on the floor and seeps under the curtain into my 'zone'. I go to the day room while it is cleared up. Then 1.30 am I wake to the familiar 'ding ding dong' of the drip machine. This one right next to my head. Once awake, even with a sleeping pill, there's no getting back. Then I'm treated again to Mr Jaundice stinking and spurting. He needs his own room. I need some quiet. I cannot stay here. I am so fucking angry and frustrated. What the hell can I do? I' m listening to loud music that most of you wouldn't approve of and I'm writing this, and enjoying the shittly aroma that curtains between beds just cannot contain successfully. Maybe if I was still Ill and not feeling so well I could cope with this but I was convinced I would go home yesterday, then after my expedition out, convinced to stay till Saturday morning. I really cannot spend another night in here. I'll make it through the nigh some how and then I AM LEAVING!

In the words of the mighty Samiam:

I can't believe it, this is awful. I can't believe it, this is awful. I can't believe it, this is awful. I got better things to do with my time.
This is my time. I could be home...

I'm so happy to be able to listen to music. It is such an escape. I don't know what I'd do without my iPod now. What a life changing product, especially if you are actually into music. Have it ALL in your pocket. ALL! All moods covered.

Later that same day...

The nurse came around with my i.v. anti-biotics around 10am. I proudly proclaimed "I am refusing treatment, I am going home, let me see a Doctor". And so it was, a good hour later I saw a Doctor. Only things didn't go entirely to plan. Once again my blood counts were low, 14 on the platelets, 8 on the red (12 is better), and still neutropenic. They did not want to let me go home. Still I pleaded. "We can't keep you in, but we advise that you stay." What can you say to that? I was so frustrated and built myself up so much for going home I could just not bear it anymore. Luckily there was a solution. Chris and Tracy would come and take me out of here for a few hours. And that they did. I went outside, breather the fresh air, focused on something more than 25 meters away, and appreciated the green and blue. I also had some great fish and chips, but most of all it reset my patience button. On my return I was told that they wanted a full 5 days of anti-biotics so that means I won't even be out tomorrow, it will be Saturday, as long as my temperature doesn't spike. By the time you read this all this will have happened as I'm writing this on my lappytoppy in the past.

schleep

Somehow the notion that a good nights sleep helps recovery is not part of the this wards' outlook. Every night I go to sleep in a bad mood because survey says "let's start your 3 hours of anti-biotics at 10pm". I understand the need for anti-biotics (however on this occasion it was debatable whether I needed them) and that they are run 12 hours apart. So why not 8 and 8, or 6 and 6 - they wake you up at 6 am anyway as part of their early bird catches the worm policy. Maybe the morning staff should inform the night staff of this policy because they seem to be adamant that the patients thrive at night.

Anyway, on this particular eve, and I was fine to go home that day I assure you, I was staying in one last night. So around 10pm I was hooked up to the drip. I managed to get some sleep, off and on. The problem is with this pipe running from your chest you have only 3 positions to sleep in, and they are soon exhausted. In addition to this to move to any of the 3 takes careful consideration. I have an immense fear of leaning on the pipe and hoisting myself up to move to position 2 of 3 as I feel the pipe start to slip out of my skin and bleed for a long time, so every move is preceded with waking up and careful planning. Sleep should be long and constant. On this particular night I didn't ask for a sleeping pill which had ensured a 6 hour stint just the very previous night. I woke around 2 to the sound of Gruntman - yes, the very same who was positioned next to all those weeks ago when I started chemo, only this time less hairy - vomiting. I had managed to deal with his sleep grunting which has reduced somewhat but his vomiting lasted for ages. Only a curtain separates us to my right. Then, as if by magic, The Jaundiced Avenger on my left starts moaning with pains in his chest. Trolleys are dashed around the ward, everyone raises their speaking volumes and I am laying there, with an empty anti-biotic bag connected to me, feeling rather pissed off. Now it's not their fault and I sympathise with them but at 2am, having gone to bed pissed off I only got more pissed off. I managed to attract the attention of a nurse by making my drip machine artificially make the 'ding, ding, dong' and I was finally disconnected for a good nights sleep. I rolled around for a bit, read for a bit and finally made it off to sleep. 6am soon rolled around for my daily blood and observations. Then to top it all off the Jaundiced Avenger to my left decides 6:10 is great time to start shaving his follicly challenged chin with an electric razor. Anyway, that was it. I was awake, tired, and unable to sleep. I am definitely going home today - just to get some rest because hospital is not the place to get it.

what happened?

So there I was, minding my own business, when out of the blue my platelet count was 1. Platelets make your blood clot. When you are 1 you bleed. My nose bled all night but since my regular clinic was coming up I didn't inform the hospital. But 1 is bad, I was admitted into hospital again, my weekly visit(!) and given platelets. So Thursday night I was back in. Friday I went home. Saturday morning I felt great, so off we went (we is Imelda and I) to Centre Parks in Nottingham. Why? You may ask. Well, I say, it was the Teenage Cancer Trust "Find Your Sense of Tumour" conference. This is a yearly event where about 500 teenagers all go to Centre Parks and hang out. There are various high profile cancer people in the UK doing presentations about future of treatment etc. People get to ask doctors questions. There are motivational talks by cancer survivors. It's a well organised event and it was great. It was nice to be around people that know how you feel, that have been through similar things. I enjoyed the event. There will be videos of the event on www.jimmyteenstv.com soon.

But, Centre Parks is car free and we had to walk everywhere. It was a 15 minute walk to the presentation hall and that may not seem much to you, but it meant a whole lot to me. I was knackered. I had a big nap on the Saturday. On the Sunday I was exhausted. In the eve we went to my Grandma's. I went to bed at 6pm, and slept 'til 6am. I was still tired. I was due at the hospital for a routine blood test, and as usual, they kept me in. I had 3 bags of blood, and 2 bags of platelets. And as I type this I am still in hospital. This is Wednesday (7/3/7). Hopefully I can go home tomorrow. I am so sick of being here...but it could be worse. I'm just looking forward to having an extended period of time at home.