Tuesday 25th June '02

I've been at the hospital all day today. First, I had to go to the Warfarin Clinic. This is where they kind of check up on my bloods and tell me how much warfarin I must take daily from now on. My INR was 1.9 which is bit too low. So I must now take 5.5mg of warfarin a day instead of my usual 5mg. So that was between 8am and 11:45am.
Then from 11:45 am I had to go to the Radiotherapy planning clinic. This isn't when they actually start the radiotherapy. This is when the doctors etc. take measurements and all the rest in order to determine how much of what goes where. Know what I mean? So the plan is for me to have radiotherapy every weekday until Tuesday 9th June.
Then from 3pm that day, I had an appointment with my oncologist, the great Anne O'Callaghan! She really is a good doctor. One of the (no, actually, the..) best oncologists I've met in all my ill life. And I say best oncologist because my GP is also a brilliant person. They're both as good as each other. But they work in different but similar fields. My GP is Dr Anthony (Tony to you & I) Tollast at Sunnyside Fratton Surgery.
Well anyways, I met up with Anne to discuss present issues and what's gonna happen next.
She just said that even though I'm meant to have my chemo every four weeks, we'll have to delay my second lot of chemo because if I have it too soon after the radiotherapy, it could, and most probably will greatly increase my chances of paralysis from the neck down. So we'll leave the chemo for about another couple of weeks.
Shame really cos even though the chemo isn't a nice thing to go through, I wanted to have it as soon as possible because I want to throw everything possible at these tumours and ease my continuous pain.

Wednesday 26th June '02

I started my first lot of radiotherapy today. It went ok. You don't feel anything during the procedure as nothing is physically touching you. It's just like having an x-ray taken of you except the volume, power and direction of the x-rays are controlled. I felt kinda worried later that evening 'cos the left side of my left hand felt kind of numb and tingly just like my right hand. This worried me because I thought the radiotherapy was already having negative side-effects on my nervous system causing premature numbness. But luckily, it went and my left hand now feels back to normal again! Nice one!!

Thursday 27th June '02

Second lot of Radio waves. I was late today, ha ha ha. It went ok. I'm gonna turn into a radio if this carries on! I'll be walkin' down the street and someone's just gonna run up to me, twist my ear and tune into Power FM or something.

I've been having these horrible dream-like hallucinations recently. I know for a fact it's a side effect from all the medication I'm taking. Specifically, it's the high dose of morphine I've been taking for some time now, mixed in with the fact that I am also taking two strong and addictive anti-depressants within my medication. They are already starting to mess with my mind. Some nights, I'd be lying in bed, it feels like I'm wide awake, then suddenly I'm paralysed, I can't move a muscle. Not even my voice muscles so I try to scream out but can't. It feels as if there is an evil spirit watching over me. I say evil as I feel really scared of something, or at least it feels as if there is something scary stood, watching over me. The most recent time this happened, I thought I saw something kind of hovering before my eyes. Only about the size of a big fist. All throughout, I carry on trying to attract my mothers attention who's asleep in the next room. I try to scream, but all that comes out are these strange moans. It really is as if my tongue is paralysed. But eventually my mother does hear me and comes into the room and turns the light on. What a relief! That's when it's all over. They've been happening every now and then, but not often enough to be a big problem. Then the day after, we just joke about what I sounded like when I was calling out cos it just sounded really funny. Mmmmmm, mmmmm, mum!

Friday 28th June '02

I've been in a lot of pain today. A lot! My left arm and under both my armpits hurt like hell. I was nearly in tears 'cos of it. It was my fault really. Last night I was also hurting a little bit. So I kinda crashed out. When I woke up it was quite late and it had gone past the time when I should've taken my evening lot of pills. I didn't end up takin' them till about 4:30 in the morning. So when I woke up ready to go to radiotherapy and for the rest of the day, I thought to myself, "I've only just taken my pills, is it safe to take the morning lot?" So instead I only took half of the morphine that I should have. That's why I was in a lot of pain. But it wasn't only the pain I was experiencing, I also got the withdrawal symptoms of not having enough morphine and the other drugs I was on. That'll teach me. As I'm having radiotherapy every weekday until Tuesday the 9th, I don't wanna bore you with an entry for each day. I'm now just only gonna add something if it's major. I don't want to turn this into a diary. So, I'll see ya then, then! Lex, ;-)

Wednesday 24th July '02

I've now finished my radiotherapy. I finished it some time ago and I'm well glad! For some time after the end of the treatment, I was in a LOT of pain! Loads of it. The pain was mainly centred in and around the top of the spinal chord where the radiotherapy was being aimed at. But the doctors told me that I'd feel much worse before I'd feel better though. I'd be in so much pain that I had to walk as if I was on a tight rope. Any sudden movements or any certain positions would give me great pain in the top of my spinal chord. ~ Well horrible! So now I'm feeling better. I'm not in as much pain as I usually am, so that's a good sign. I suppose it shows the radiotherapy's working. The aim of the radiotherapy was to ease the pressure the tumours were exerting on the spinal chord, and therefore ease the pain, as well as reduce the risk of paralysis from the neck down. Now the radiotherapy is over, I can now continue with my chemotherapy. Remember I was taking chemo every four weeks?

Friday 2nd August '02

I had a doctors appointment the other day, they said I'd be starting on my chemo soon; in about a week and a half's time. Today, I also had my very first yoga lesson. I think it would help me a lot in my recovery as it entails a lot of breathing exercises, and not-so-heavy physical exercise. All just what I need. I need the breathing exercises as tumours hate oxygen, and the not-so-heavy exercises because I can't handle any other types of exercise. I can't even run, let alone jog. I try and jog, and I'm put in agony throughout my upper back from the tumours. Also because my nervous system is being messed about with by the tumours, so I'm limited in what I can & can't do with regards to exercise. Another thing to add to this date before I go is the fact that I've been experiencing increasing pain in my upper back where he tumours are. This shouldn't really be happening. Not unless it is a sign that the tumours are slowly shrinking, as it is known to have this effect. This pain had better go soon, as it really is very annoying. They are short bursts of agony.

Tuesday 6th August '02

The pain is going! I'm experiencing less pain every day!! I feel so good about it. So today I had an appointment with my oncologist; Dr Anne O'Callaghan. When she found out how much better I'd been feeling, she decided that it'd be better to postpone the chemotherapy I would've been receiving on the following Monday. But I decided that I'd rather have it and not give the tumours any rest. I wanted to carry on punching it so to speak. So she said; ok then. If I decided otherwise, then I should call in and cancel the bed that would've been set aside for me. I like to know that I've got a say in what happens with regards to my treatment. So, I have an appointment at the hospital on Monday to receive chemotherapy. I'll be there overnight to receive two bags of the stuff 12 hours apart.

Monday 12th August '02

I would've been at the hospital this morning to receive my long awaited second lot of chemotherapy. But sometime over the weekend I decided that it would be better if I left it a while longer after all! Shame really cos for the first time ever, I was gonna get a room all to myself. Before, I've just had a bed in a ward, sharing the same room with others who moan about my light being on past their "bedtime". It does my head in. The reason I decided to put it off a little while longer is because I decided to let my body rest a little more after the radiotherapy. That was because I was still getting pains in my spinal chord which I strongly believe is due to the radiotherapy that was shot at it. I was also getting the pains because I was getting a lot of very late nights. Not a very good idea! The body (especially mine!) needs to rest in order to recuperate. And with a poorly spinal chord, a late night is not exactly what is needed is it? So I just felt that it'd be a lot safer if I was to wait. So O'Callaghan told me to make an appointment in two weeks time. (That'd be Tuesday the 27th) in order to reschedule the chemo intake. Or, if I decided to have the chemo before then, then I should just book myself in. Nice & Easy!  To tell ya the truth, I really don't know when I'll have my second lot of chemo. When I'm in less pain I suppose!

Saturday 7th September '02

I went to my appointment on the 27th, and told O'Callaghan about increased numbness around my body. Due to certain reasons, she decided to give me a lumbar puncture test which I had yesterday. Within this test, I also received some chemotherapy in the same needle. So when the fluid was extracted from around my spinal chord, the syringe was taken away, and a new one was attached with the chemo (methotrexate ) in it to be injected into the fluid that surrounds my spinal chord. The reasons being that there might be lymphoma cells in the fluid that surrounds my spinal chord (cerebrospinal fluid [CSF] ). I was really getting worried. Someone (I've forgotten who) told me it wasn't as painful as the bone-marrow test I had before. So I got the impression that it was slightly less painful than the very painful bone-marrow test. I was given about a week and a half to dwell on the fact that I was gonna have this test. So when the day came, I found out that I had the honour of being given the test by none other than O'Callaghan herself. So I asked for extra local anaesthetic; I got double. I even had a few swigs of Oramorph (morphine) in the car on the way up there. And when I actually had the test, I felt hardly anything at all. I was worrying over nothing at all! I didn't even know the needle had been inserted until it was nearly all over!!
Now, today being a couple of days after the test, I'm feeling very worried. Both my legs, my waist, feet, and a few other minor parts of my body are quite numb. As a result, I can hardly walk, I need to hold on very carefully to the wall or railings, or whatever I can find! I should've asked really, but I do hope this is a side effect of the methotrexate that was injected into my Cerebrospinal fluid. It is really worrying. It'd better go soon as my Grandmother who I haven't seen since 1992 is coming to visit for a couple of months tomorrow!! She flies out as I type from Miami after a couple of weeks of visiting my uncle in Orlando, to stay with us! She should arrive at Heathrow early tomorrow. Fingerz crossed!!

Monday 9th September '02

I feel a lot worse today! I can't walk period! I phoned the doctor (O'Callaghan) earlier to ask her what was going on! "Is all this a side-effect of the Lumbar-puncture test I had on Thursday?" She said it wasn't and was quite worried at what I'd told her. She said that the sensible way forward was to give me an urgent MRI scan to clarify what was going on around my spine. ~ aaaaargh!
I'd also need regular doses of chemo administered into the spinal fluid by means of a lumbar-puncture!!
The only way I could get an urgent MRI was if I was an 'in-patient'. So at present while I write this, I'm waiting for the confirmation phone call that says there's a bed waiting for me. In the meantime, whatever is bad in my spinal fluid, could get worse while I wait for a bed, have an MRI scan, and get my first chemo shot via a lumbar-puncture. I think O'Callaghan also mentioned something to do with irradiating some parts of my spinal chord which had active cancer cells.
This is very dangerous. Remember I already went through that in July. It's not very nice at all. A lot of pain.
I've had it with this nightmare I'm living in. I'm going to put an end to it. I'm going to get through this, I know it. I can feel it. I want to live, and I shall live. I will beat it. I am much stronger than this illness, and I shall pull through. I'll pull through to kick it out of my system for good, once and for all. I am worried and afraid, but that's natural. I am not scared of death, but that doesn't mean I don't want to live. I want to live. There's so much more I want to do. So wish me luck for these coming days and possibly weeks. I'll need it! ~ Lex.

Sunday 15th September '02

Well, I've been in hospital all week since Monday!! They let me out last night so I could spend a night at home. Quite a bit has happened since I wrote last. As you know, I'm paralysed from my waist down, and I haven't got much strength in my arms. So my oncologist (Anne O'Callaghan) put a request in for surgery to some specialists in Southampton, not too far from Portsmouth to see if they can insert some sort of metal plate or rod next to my spine in order to straighten it out, and consequently let me walk again. This is because the results of my MRI scan which I had on Tuesday showed that a couple of segments of my spine's being pushed outta place and therefore compressing the spinal chord. (the doctor called it "Severe chord compression"). My fingers are actually quite numb, so it's really hard to type this. Bear with me! I've been waiting for a reply from Southampton for the most of the end of last week. As it's such an important decision, they've had to sit on it over the week-end. So there's a bit of a chance that they can't do it!! One very important question which I should've asked before is "if they can't do the operation, and the chemotherapy gets rid of the tumour, would it still enable me to walk again?" I'll ask 'em tonight! I've gotta get back there really soon later tonight, so I don't have much time to write this!!

So for the past week, I've been getting around in a wheelchair, and using a zimmer-frame!! What a sight! I'm also using a neck-brace to support my neck and not put too much pressure on the collapsed segment in my spine.
My steroid dosage has also been increased to its maximum again, so I'll have an unrecognisable face again soon!

I've had a few mates visit me which I needed, and I've had my moments by myself. On the Monday I went in, just after I wrote Mondays' entry up above, I was really thinking the worst! I wrote the PIN numbers to my bank cards, and passwords to e-mail accounts etc as I didn't think I was coming back!! I thought that the tumours had overwhelmed my body's defence systems and overwhelmed me for good! I was in tears on the way to the hospital.
It all had stemmed from that Lumbar puncture test that I had on Thursday. The results from the Lumbar-puncture had come through that there wasn't any cancerous cells in the Cerebrospinal fluid anyway, just that the protein levels were quite high. And as soon as I had that test, I became gradually paralysed!! I was convinced it was a side-effect from the Lumbar-puncture test. But Dr O'Callaghan said "Highly unlikely". It was just a coincidence apparently. But I still believe that the test had some sort of bearing on what's happening to me! My Grandmother is visiting from Peru at the moment and has come just at the time when all this is happening. I suppose it's good timing for my mother and I as we need the support, but I think it's unfair on her part as it would've been nice to have spent some quality time with her! She arrived on the Sunday before the Monday I was bought into hospital. I hadn't seen her for about 10 years.

A priest came from the Cathedral today to give me the "Sacrament of the Sick" which is nice of my mum and gran to arrange for me. I'm not a highly religious person, but I'll do anything to get better. The Sacrament of the Sick is what is used to be known as "The Last Rites". So that got me kinda worried. I thought you only read that to people who were dying. But it's not. It's kinda like a healing prayer. Which is what I need. So at the moment, I'm waiting for some quality food that my two mum's are cooking, (Chicken & Rice, mmmm), then I'll be back off to the hospital, and hopefully get some news from Southampton tomorrow.

I just want this nightmare to be over, and I can't wait till it is!! I truly believe that I'll pull through, it's just the sooner the better! And I really do hope that I'll be able to walk again and use my arms. Even if the operation doesn't go ahead!! I am strong, stronger than this illness. I'll beat it!

Tuesday 17th September '02

OK, so I got the results from the people in Southampton. And after all that waiting, it was decided that the operation was too delicate and risky to be carried out. I am glad in a way as I didn't really want the operation done to me.

So as soon as we were told that the operation couldn't be done, the chemotherapy was prepared for administration. It would've been dangerous to start the chemo if I was to have the operation. The next lot of chemo's due four weeks after the first. (Remember, It's the chemo I was gonna receive a couple of months ago, the four-weekly chemo of two bags 12hrs apart. It's called A-R-A-C which once again is the initials of the combination of different drugs used.) That was given to me today, Tuesday. There is talk of transferring me over to a Hospice nearby where I may be looked after by a team of experts such as physiotherapists, reflexologists and all that. This is because I'm still unable to walk. And the bad news is that my strength is still deteriorating, it's still getting worse. I need to be somewhere where I can be looked after and helped to do things. A senior doctor; Dr Hugh Jones from the hospice is coming to talk to me on Friday to discuss details. So at the moment, I am strong enough to quickly transfer from chair to wheelchair etc, but it's dangerous!

Monday 23rd September '02

I would've gone home after the chemo was given, but as I couldn't walk, that was pretty impossible. Especially as my strength was still getting worse. So I stayed at the hospital. I was there till the weekend. So that's two weeks at the hospital now. Stuck in the same chair, if not in the recliner chair, then in the wheelchair. I ended up not even sleeping in the bed as it's really uncomfortable on my neck. I have to call a nurse every time I wanted to just simply sit up in bed, or even move my legs in order to feel comfortable!

I have fallen over a couple of times, and every time, I haven't been able to even push myself up. So in order to get me sat back up on the bed, I had to be hoisted up using this kind of 'crane' to lift me off the floor and on to the bed. The recliner chair became my bed. My left arm is also pretty weak due to the chord compression.

So as the hospital couldn't do any more for me, I moved to the hospice today. It's called "The Rowans Hospice". Here, they'll help me with my new situation; being confined to a wheelchair while trying to eradicate the tumours that's causing all this mess.

Monday 30th September '02

I've been at the hospice for a week now. The place is excellent. The nurses here are all as brilliant as the nurses you'll find back at the hospital for a start. I've got a big room with an en-suite bathroom all to myself and the food is delish. The cook will usually come to personally visit to ask what I'd like for lunch / dinner. They grow most of their own vegetables without pesticide etc so it's all pretty organic. So if you're on the strangest of diets, they'll try their best to accommodate for the diet.
That's handy for me as since I've been here, I've started a special diet. I'm now on a gluten, wheat and dairy free diet. I've also cut down on the amount of red meat I eat. I'm on this diet because those ingredients can bog down the body's recovery system.

The reason I came here was for rehabilitation in order to try to get me to find it easier to mobilise myself. But instead of my situation improving, the numbness has only got worse. I thought that my paralysis had stopped getting worse when I was admitted to hospital. What had actually happened was that it was still getting worse, just not as fast. This can be seen on the graph I've made above this entry. At first, the numbness in my legs wasn't too serious. I had enough strength to go to the toilet by myself using the zimmer-frame to get myself there. Eventually, I needed to use the wheel-chair to wheel myself to the toilet and managed to transfer myself to the toilet seat ok. Or even getting from the wheelchair into the recliner.

Monday 7th October '02

But since I arrived at the hospice, I'd eventually need help in transferring from seat to seat. I had no expectations at all that my condition was going to deteriorate while here. Unfortunately, now being just over two weeks later, I need to be hoisted using the crane every time I want to move from place to place whether it be from bed to wheelchair, bed to toilet; anywhere! These past few weeks have undoubtedly been the worst days of my life; without question. This is why...
I've always been one to help others, even if they don't ask for it, and I've always hated asking for it. Now look at my situation. The tables have turned right around and I am totally dependant on others to even move. It took about ¾hr to just go for a piss as I had to be placed in the hoist (crane) and wheeled over to the toilet, then lowered onto the toilet while a nurse would lower my trousers as my hands are not strong enough to do it myself. Very annoying, tedious, degrading, and demoralising. Especially when accidents happen and when it happens throughout the night and all I wanna do is go to sleep.
So now I'm using what is called a "catheter" (I'm not gonna explain what one is!) which has made the toilet ritual virtually nonexistent. But it was hard agreeing to use one as I'd never even heard of one before I came here, let alone the idea of using one.
I feel sooo frustrated sometimes as all I want to do is move my legs. Regardless, I always stay positive, and I'll NEVER give up fighting.
A few weeks ago I was a walking, able bodied guy. I'd never imagined myself in such a situation. Eventually, while I've been here, the numbness has spread and I now can't feel my legs. The numbness has advanced so much now that both my legs are totally numb, my back all the way up to my shoulder blades and my stomach too. I'm finding it a little more difficult to breathe as the numbness is also affecting my diaphragm and lungs.

I'm gonna be blunt. If this carries on at this rate, I'll be dead by the week-end due to paralysis of the lungs. I felt light headed earlier today for the first time accompanied with a feeling of 'out of breath'. This may well be the last update I make to my web-site; I hope not. I love life, and I love my life. It's just been a little difficult recently. I want to live. I'm not scared of dying, but it doesn't mean I want to die. I sooo want to live, there's so much I want to do with my life, and I do hope I survive.

It's my birthday on the 18th, I wish for success for my day.
That's all I want!

So as we can see, the chemotherapy is not helping in any way at all. This is the reason why we're desperately seeking an alternative form of treatment. My sister; Tanya's been searching for one, and has come across one called "The Issels Treatment". It was discovered over the internet at www.issels.com. Unfortunately, the cost is very high. Especially as I can't take a commercial flight due to my difficulty in breathing and the lack of oxygen at high pressures during the flight. As a result, we need to organise a specialised medical flight where oxygen would be available. A flight like this costs about £4000 each way!! Then there's the cost of the treatment itself which is about £15000. We have already managed to raise about £5000, and we are desperately trying to obtain the remainder. So if anyone can help, pleeeaase get in contact with us. As I'm confined to my bed, and my mobility's rather limited at the mo, it'd be much better if you contacted my mother (Lily) or my sister (Tanya). Try my sister first. Their e-mail addresses are: Tanya: tanya_staires@yahoo.com, and my mother Lily's is: tupac_inca@hotmail.com.