worse to worser?

So, out of hospital I came, feeling much better. This was on the 5th of Jan. Had a great weekend, also happened to get my long overdue Nintendo Wii - which is amazing. You have to play it to believe. Imelda and I spent all of Monday and Tuesday aching all over like we'd spent the weekend at the gym, such is the revolution that is the Wii.

Anyway, today I went for my clinic checkup, and things aren't great. My kidneys are slowly getting worse again, not much worse but not better. This is not good. I'm now booked in for a Hickman line (a permanent pipe into a major artery in the neck for receiving treatment and taking blood) on Monday. Followed closely after by the dreaded kidney biopsy - which shouldn't be too bad, but not too pleasant either. Followed by a bit more steroids to, again, kick my kidneys, only this time it will include some low dose chemo, of the non kidney affecting type. My usual chemo (ESHAP) has platinum in it (the 'P') which can be quite harmful to the kidneys so they'll be leaving that out. But it also partly explains why these drugs can be so damned expensive (apart from the premium the pharmaceuticals put on them - oh no, I'm getting political again).

First of all the biopsy will give them a greater undrstanding of what is really going on in my kidneys. Although it is still most likely the Hodgkin's attaking. And secondly, the steroids along with the chemo should start to attack the disease itself.

I'm also going to get a pint of blood tomorrow because I am anemic again, which is why my heart rate has gone back up. The kidney's seem so complex in how they affect so many other organs. They are so very vital. Look after them.

In the past I have always spoken about how can poisoning the body, heal the body. Whilst I still think there's a long way to go for medicine it is my only option right now so I am going to embrace it fully. It's going to be tough, but others have it tougher, and I'm confident I will make it through, and hey, I'll have experienced considerably more than thou!

New Year, New Start?

Along came the 28th of December. I'd had a really nice Christmas but knew that the outpatient appointment was looming. As my parents are over from France we all went to together. A blood test revealed that my kidneys were not performing very well, in fact so poorly, that 'kidney failure' was mentioned. I immediately went to St. James' Hospital where there was a bed waiting for me on an almost empty ward - I guess they kicked everyone out for Christmas.

The prognosis. After various tests including ultrasound and CT it has been decided that the Hodgkin's Lymphoma has spread int my kidneys, making them work rather badly. So badly, that I almost required kidney dialisys. Luckily Dr. J stepped in and gabe me 3 lots of sterids to give my kidneys a good kicking. Since we can't go ahead with chemo unless the kidney are functioning because they are so vital in the removing of the chemo wastes.

My kineys were under such strain, and this has been slowly creeping up on me in the ast few months. To the point where I wasn't draining fluid properly and hence the pressure on my heart and the 100 beats per minute.

Anyway, after a few miscommunications and worrying moments my kiney are slowly but surely imporving. Dr. J let me how for the evening last night, and here I sit at 6:30am typing this - with the hickups. Yes, the hickups. Along with the many other tasks kidneys have to perform they somehow have great control over hickups. They are driving me bloody mad! I sleep with hickups, I get them after a drink, I get them for no reason, I get them for moving slightly! Aaaarrrggghhhh! When will this misery end? I did discover yesterday that oranges seem to ease the issue so I will be eating plenty of those thankyou.

Not sure when I'll be out again, but when I fully stabilise I assume I will get a few days at home before starting the chemo. So, a great start to the year. As always, I'm determined to get over this once and for all. This is my final chance and I can't afford to take any risks - after this, treatment becomes somewhat more 'experimentational'. For the record, I regret none of the decisions I have made. I had a great summer, saw some great bands and had a really good time. I just have to get through the next 4-5 months of shit...

I think I've made a decision...

I'm sitting here at 4:30am writting this. I woke up dying of thirst. My heart rate? Ridiculously high, I don't even want to write it here, as I'm so scared of it. This has made me make a decision. I have an appointment on the 28th for an ECG to check my heart out - at Cookridge. It was mentioned that if they admitted me it would be at St. James'. This tells me that they are obviously concerned and with my current state I fully expect them to admit me.

As unpleasant as it will be, to go through two ESHAPs and a stem cell transplant - provided they don't change the regime - I think it needs to be done. I can't live like this anymore, in denial of what's going on. Hoping, and attributing clear cancer symptoms to other things. My immune system is weak, I got shingles. I have had night sweats, although these seem to be improving, for the past few months. And now this, tachycardia, as it is called. Typing Hodgkin's and tachycardia into Google comes up with plenty of results. Not to mention the lumps under my right arm.

I'm hoping my mum will stay over and let my Dad drive back to France on his own, so she can be bring me healthy, and tasty, food to the hospital. And the odd freshly squeezed fruit and vegetable juices.

This sucks. Hopefully I'll be up and running by summer...I'll let you know what happens.

from bad to worse

I have been slowly improving from the shingles attack. The numbness hasn't all gone in my back but I no longer have the associated spine pain. Presumably this is to do with the chinese herbal pills I was given since it cleared up fairly quickly once I started on those.

Now I have a new problem. For a while now I have been getting tired when walking up stairs and to the high street, at the top of a hill called the Steep, just outside my home. I've needed a rest for things I used to run up just a couple of months ago. Maybe I should have picked up on it sooner, but I was laying in bed the other night, all relaxed, when I realised my heart was going like the clappers. I'm talking 100 beats a minute.

I've come accross this before, in late 2005 I was rushed into hospital with fluid around my heart and lungs - I had extreme water retention. My legs were like elephant legs, with no sign of ankle, and I had a bit of a spare tire 'round my waist. I was extremely tired all the time and required a good 4 hour sleep every afternoon. I went to Holland to see my Grandparents and while I was gone Imelda was so worried about me she booked me in for an urgent CT scan. I knew straight away something was wrong, apart from the inability to walk 20 meters without catching my breath, the oncologist came running out the moment the CT scan was finished. She said I had to go to hopsital immediately. I was admitted straight away and was started on chemotherpay, which I had been avoiding for 6 months, and presumably a cocktail of other drugs, in a private room. I spent a week in there and slowly recovered. My resting heart rate at the time was nearing 120bpm.

This time the symptoms aren't nearly as bad and I've caught it farily early on. But why? I have had an appointment made for the 28th of December, this may include an ultrasound to see the extent of the fluid. In addition to that I have a CT scan on the 11th of January.

I have contacted my homeopathic doctor who told me to get it checked out at the conventional doctor in the first place. I have been prescribed some New Era tablets that help dissipate fluid build up. I guess I have about a week to get this under control...

I am very worried about though. The odds are that the cancer is back. I recently promised myself that I wouldn't have any more chemotherapy. That if I was meant to die, I would die. I have no fear of death in the slightest, but every time I think of how Imelda will cope and how my family and friends will cope I cry. I feel like I don't want to let them down. But I'm so tired of this. I know people go through a lot worse and make it through. Maybe I'm weak, but I don't want to have to start a new battle. Who knows what I'll say or think when I get the results of the scans, maybe I'll have new fight, but the thought of going into hopsital and having pipes stuck into me and being hooked up to machines for 8 hours a day, followed by a month in almost solitary confinement frightens the life out of me. I just imagine myself laying there, with no emotion on my face. Equally, if it is back, and I decide to not have conventional treatment and my alternatives don't work then it's not going to be a nice quiet death. I imagine it would get quite painful toward the end.

What's the lesser of two evils? The truth is, I want to live, not being afraid of dying is not choosing to die. I have a lot to do with my life. Various sources have told me of a child I will father, be it my own or adopted. The general consensus in the hippy crowd (as some would call them) is that I will live. But that's not given, I still have to work for it, and making this decision is all part of it. Logically, I decided against chemo and a stem cell transplant in the past and it was got me no-where (apart from a fun summer). Maybe it is time I went the whole hog and see where that takes me.

How many times is this decision going to come 'round?

running on empty

I'm not doing all that great at the moment. I feel constantly run down, I sweat most nights, my kidney's ache, I have a lump under my right arm, and my temperature keeps going up.

Doesn't sound to good does it. In fact all of the symptoms are of the Hodgkin's coming back. The thing is, my homeopathic and radionic doctor doesn't think it's back, and my chinese medicine doctor doesn't think it is back.

Right or wrong, I trust them both implicitly and am going with what they say. You may think I'm mad, and maybe I am, but I can only trust my gut instinct. When my logical head kicks in it just gets in the way and makes me all depressed.

I saw on the news the other night that a 16 year old girl had decided to refuse luekemia treatment and to die at home. She was given an award by a cancer charity for her bravery. How different attitudes can be at different hospitals. Good luck to her.

tick, tick, tick, BOOM!

Every now and then I have an incredible burst of emotion at what a difficult time this has been for me. Usually something small and insignifican sets me off and then it's a spiral of anxiety and anger and despair.

I'm not sure if the Reiki has anything to do with it as I have read of a 'Healing Crisis' where everything comes out. I suppose it's a good thing to let all that anger out, as scary as it may be, it allows me to move on.

Do this, do that, take this pill, take that pill, eat this, don't eat that, have a scan, results day, think like this, smile more, be more kind, relax, don't let things get you down, think positive, you might be ill, you are ill, i found a lump, have some chemo, have stem cell therapy, avoid chemo it poisons the body, clean the liver, flush the kidneys, change your attitude, meditate, do some Reiki, trace meridians, balance chakras, don't say that, pray, what you reap is what you sow, karma, love yourself, love others, feeling better?

All this conflicting information builds up and sometimes it gets so difficult to know what to believe. Sometimes I wish I didn't have the 'alternative' healing beliefs and just blindly give myself over to the doctors and say 'fix me'. I can't do that, and it's not easy being the odd ball when it comes to health. It is the one thing you can't buy your way out of, the one thing that there is no hard and fast answer to. The one thing you can't escape no matter where you go on the planet - it's always with you. I guess the only true way out is to die, but I don't want to do that. And besides, I believe, that if I don't face my issues in this life I'll only have to deal with them in a future life. You can't escape what you have to learn as a person, as a soul, as an everlasting being. It's these thoughts that allow me to get out of my depressive angry state and say 'right, lets get on with it then'. But I do think it's healthy to explode with anger sometimes and get it all out.

I didn't know I was feeling that way until it happened, and therefore it would be difficult to get counselling because I wouldn't feel comfortable having an outburst like that in front of anyone that I didn't trust and love implicitly, and also, I can't really describe fully how I felt. It's a 'in the moment' thing, and like a dream afterwards I can't fully recall what it was all about.

How does Bob Marley like his donuts? Wi' Jammin.

Reiki me.

I am slowly getting over this shingles. I still get tired a lot, have random pains and enjoy a good scratching session daily but it's getting there.

Last night and tonight I am doing a Reiki course, this will give me Reiki I and allow me to heal myself as well as friends and family. The main reason that I've done is that throughout this cancer experience I have become a much more spiritual person. I feel that Reiki is a good was of begining in a 'healing' field allowing me to develop my own way of channeling positive energy.

The other reason I have done is because I need to get out of this terrible habit I have got myself into. A downward spiral of fear whenever I feel anything remotely out of the ordinary on my body. I get myself into extremely paranoid upset states and I become totally illogical, convinced that the cancer is back. It is a terrible situation to be in and I refuse to let my life be governed by fear. It is not pleasant for me and it's not pleasant for those around me. Having learned Reiki, when I find anything unusual, instead of constantly poking at the area, inflamming it, and creating negative thought patterns which over time can and will become real, I can heal myself, calm myself and channel positive energy to the area. Over time I will be able to get out of this negativity and lead a normal life, without the fear of cancer creeping up on me.

That's the theory anyway, and with the ammount I've read about quantum physics, mechanics, spirituality, eastern medicine, western medicine, and dealing with a life threatening disease, I think it makes a whole lot of sense.

wrap up warm.

I had my checkup yesterday and it was better than I thought, in terms of chemo pressure anyway. I was checked in the lump regions and something was spotted under my right arm, and in my neck. Under my arm I knew about - the difference this time is that it is quite sore, whereas cancer lumps are usually painless. All my other symptoms can be attributed to the shingles, which are dragging out. I feel run down all the time, like I have flu. I could really do with lying on a beach under the hot sun somewhere instead of having to constantly keep myself warm in this rainy and grey and damp and cold time of year.

I am booked in for a CT scan 5 weeks from now. That gives the shingles time to clear up and will allow an accurate representation of what is really going on. December the 14th will tell me if I'm having a good Christmas or an extremely crappy one. I live in hope, but at the moment I feel so physically and emotionally run down. I think my mood will improve as my shingles does. I hope so anyway, people must be getting really pissed off with my bad attitude...

would you like an immune system destruction with that?

I have an appointment this afternoon at the hospital. I'm not looking forward to it in the slightest. I have a lot of respect for the doctors and for what they do but I don't think they have looked into my case satisfactorily. Ever since that last scan where they said 'It looks like it's back - let's destroy your immune system' I have been very worried. I have been happy, and have had a lot of fun but that constant pressure and stress has not been good for me. I think that the shingles was partly a build up of stress. Sometimes I wish I could just leave my body, and all the pressures placed upon it and me, for a while. I'm going today for a blood test. I know that they will try and persuade me to have chemo and that is the part I just can't be bothered with. I place far more trust in my radionic doctor and my chinese doctor. We shall see...

shiver me shingles.

Getting over this shingles is taking some time. The rash is clearing up very well, but now I am covered in scabs and every time I move I get a lot of pain as the large scab-sheeting cracks. But this goes deeper, apart from the rash it has also meant I have been very tired for the past 2 weeks. I feel tired and often go for a little nap. Hopefully I'll get over this as soon as...