... and just to show that I don't just do moaning, some happier news.
Today was a 'good' day. Yes, I itch. A lot. But the day was good because I feel a bit more human and a couple of good friends came over and made me forget myself.
Being more interested in Playstation than my boring illness, they hung out all day and it was almost like the Saturdays of yore.
I got taken to pick up a 'script and treated myself to a new Hoover in the process, which they then 'built'. I also bought 'The Hurt Locker' on blu-ray, which we have just sat through (brilliant, tense, 'iraq bomb disposal' movie - highly recommend). We ordered two unhealthy pizzas and my appetite is clearly OK again.
They've just left - and I've noticed that I've got the energy to want to download a new PS3 game and play - something I haven't thought about all Christmas period.
In fact, if I could just stop this insane itching feeling, I would put this down to a very good day. Fingers crossed this is the start of a easier ride until my next treatment on 7th Jan.
Just so you know, I don't moan all the time.
Please be aware, however, that my entire mood now rests on Manchester United beating Hull this evening.
Wednesday, 30 December 2009
a drag
Some of you know that I used to write a blog about my journey through recovery from alcoholism - the first few years of AA. I used to pour out a shedload of emotions and thoughts, as my 'new life' emerged from my old.
Blogging seemed easier then, as when I was inspired I could jump to my keyboard and let the inspiration flow forth. Or the utter drivel, depending of your viewpoint.
The problem I have with this blog, is that I've discovered that cancer - on the whole - is rarely inspirational. It does not drive me to write huge reams of heartfelt emotion and witty banter. It is, frankly, a drag.
Everything is a drag. Hard work. Taking a shower required planning, going to the shops required stamina building, going to bed brings on dread, eating is a considered task. And writing a blog, really is a total fucking drag.
However, as I fall upon my sword for my fellow reader, an update.
28/12/2009
-------------
I'm not sure where you left me - and it's too much of a drag to go back and check - but I did manage to venture out into the world on the 28th, in the evening. I had pre-booked tickets to see Avatar in 3D, at the iMax in London ("The UK's Biggest Screen!") and had been praying all along that I would be able to make this experience.
We took the train and although I was sick on the way up, I did manage to eat some M&S salad and get to the cinema, clutching a small carrier bag - just in case. I was worried that the reported feelings of nausea that some people had from watching the film in 3D, may have mixed with my general feelings of nausea and had me projectile vomiting over seat 21, row N, but despite feeling a bit rough for the first hour, I'm pleased to report that it settled down.
This is not a film review site - but Avatar blew me away. However, if you want to see it, you must see it in 3D and if you can, book ahead at the iMax and wait. It is stunning. A real work of art and a fantastic 'archetypal' fairy tale to book. Don't expect 'The Usual Suspects' in terms of plot but behold a new era in film making. A "Star Wars" of our time.
By the time I got home I was exhausted, cold/hot (more later) and tearful. A burst of emotion and to bed. I'm so glad I made it and want to thank my good friend for putting up with my 2mph walking and general patheticness.
29/12/2009
------------
Yesterday, saw my same tireless friend pick me up from home at 9:30am and get my to the hospital for a 'quick' check-up. We were there 2 hours at least. Some blood was taken, to see how I was getting on with my first dose of chemo and the results were, well, I dunno really ... I was told my white blood cell count was low but holding up but would probably crash really soon, that I wouldn't be able to maintain my body temperature and if I go above 38 degrees to go to A&E. Always with the happy happy, these nurses.
She gave me a prescription for yet more drugs, which couple with the script I had yet to cash in from the other day, cost £36 when I presented them at Sainsbury’s pharmacy some time later. Apparently the NHS is giving free 'scripts to all Cancer patients now (since April '09), but I need an exempt letter from my GP. I can claim back with the receipt. This is a dull story I know, but someone may find it useful to know in the future.
My life-saving friend, helped me shop for good things to eat and got me home, where I had to tackle the student squat that was my flat. I had a guest at 16:00 and somehow had to tidy up.
Like I said, cancer is a drag. And it makes everything a drag. Washing up is a drag. Cleaning is a drag. No energy. No desire. Yet, needs must and slowly, with lots of rest breaks, I tidied 70% of the flat. The other 30% now contains all the mess that that was previously distributed evenly throughout the other 70%.
My guest came and went - a real testimony to the kindness of relative strangers and also a chance for me to reflect on someone else’s pain for a while. Perhaps more on that one day.
That left me with a strange evening. My body has been itching a lot for the last few days, but it was now reaching unbearable heights. On top on this, I could not get warm. I was under a duvet with heaters full on, just shivering inside, feeling odd. .
My temperature had risen to 38.5 and I didn't feel great. I took some paracetomol (lowers temperature) and waited ... this seemed to help and before long I was burning up, too hot and itching so much that I wanted to take off two layers of skin. I finally managed to sleep, still itching my face, my skull and my hands in my sleep ... dreaming of itching.
Not for the first time, in my dreamstate, I was overwhelmed by that feeling of 'is this worth it?' - a recurrent theme I've had since Christmas Day. A feeling of desperation when faced with months and month of side effects, sickness and hospitals
A day at a time, I have to remind myself.
30/12/09
---------
Cancer is a fucking drag. If it's not one thing, it's another. The nausea has all but gone, my energy levels are a bit better. But I itch all over from head to foot. Probably a reaction to one of my drugs I am taking - at the last count, I was taking 9 - or perhaps a delayed reaction to one of the chemo drugs.
I have a tattoo on my arm that says Drug Free.
It is a lie.
Blogging seemed easier then, as when I was inspired I could jump to my keyboard and let the inspiration flow forth. Or the utter drivel, depending of your viewpoint.
The problem I have with this blog, is that I've discovered that cancer - on the whole - is rarely inspirational. It does not drive me to write huge reams of heartfelt emotion and witty banter. It is, frankly, a drag.
Everything is a drag. Hard work. Taking a shower required planning, going to the shops required stamina building, going to bed brings on dread, eating is a considered task. And writing a blog, really is a total fucking drag.
However, as I fall upon my sword for my fellow reader, an update.
28/12/2009
-------------
I'm not sure where you left me - and it's too much of a drag to go back and check - but I did manage to venture out into the world on the 28th, in the evening. I had pre-booked tickets to see Avatar in 3D, at the iMax in London ("The UK's Biggest Screen!") and had been praying all along that I would be able to make this experience.
We took the train and although I was sick on the way up, I did manage to eat some M&S salad and get to the cinema, clutching a small carrier bag - just in case. I was worried that the reported feelings of nausea that some people had from watching the film in 3D, may have mixed with my general feelings of nausea and had me projectile vomiting over seat 21, row N, but despite feeling a bit rough for the first hour, I'm pleased to report that it settled down.
This is not a film review site - but Avatar blew me away. However, if you want to see it, you must see it in 3D and if you can, book ahead at the iMax and wait. It is stunning. A real work of art and a fantastic 'archetypal' fairy tale to book. Don't expect 'The Usual Suspects' in terms of plot but behold a new era in film making. A "Star Wars" of our time.
By the time I got home I was exhausted, cold/hot (more later) and tearful. A burst of emotion and to bed. I'm so glad I made it and want to thank my good friend for putting up with my 2mph walking and general patheticness.
29/12/2009
------------
Yesterday, saw my same tireless friend pick me up from home at 9:30am and get my to the hospital for a 'quick' check-up. We were there 2 hours at least. Some blood was taken, to see how I was getting on with my first dose of chemo and the results were, well, I dunno really ... I was told my white blood cell count was low but holding up but would probably crash really soon, that I wouldn't be able to maintain my body temperature and if I go above 38 degrees to go to A&E. Always with the happy happy, these nurses.
She gave me a prescription for yet more drugs, which couple with the script I had yet to cash in from the other day, cost £36 when I presented them at Sainsbury’s pharmacy some time later. Apparently the NHS is giving free 'scripts to all Cancer patients now (since April '09), but I need an exempt letter from my GP. I can claim back with the receipt. This is a dull story I know, but someone may find it useful to know in the future.
My life-saving friend, helped me shop for good things to eat and got me home, where I had to tackle the student squat that was my flat. I had a guest at 16:00 and somehow had to tidy up.
Like I said, cancer is a drag. And it makes everything a drag. Washing up is a drag. Cleaning is a drag. No energy. No desire. Yet, needs must and slowly, with lots of rest breaks, I tidied 70% of the flat. The other 30% now contains all the mess that that was previously distributed evenly throughout the other 70%.
My guest came and went - a real testimony to the kindness of relative strangers and also a chance for me to reflect on someone else’s pain for a while. Perhaps more on that one day.
That left me with a strange evening. My body has been itching a lot for the last few days, but it was now reaching unbearable heights. On top on this, I could not get warm. I was under a duvet with heaters full on, just shivering inside, feeling odd. .
My temperature had risen to 38.5 and I didn't feel great. I took some paracetomol (lowers temperature) and waited ... this seemed to help and before long I was burning up, too hot and itching so much that I wanted to take off two layers of skin. I finally managed to sleep, still itching my face, my skull and my hands in my sleep ... dreaming of itching.
Not for the first time, in my dreamstate, I was overwhelmed by that feeling of 'is this worth it?' - a recurrent theme I've had since Christmas Day. A feeling of desperation when faced with months and month of side effects, sickness and hospitals
A day at a time, I have to remind myself.
30/12/09
---------
Cancer is a fucking drag. If it's not one thing, it's another. The nausea has all but gone, my energy levels are a bit better. But I itch all over from head to foot. Probably a reaction to one of my drugs I am taking - at the last count, I was taking 9 - or perhaps a delayed reaction to one of the chemo drugs.
I have a tattoo on my arm that says Drug Free.
It is a lie.
Sunday, 27 December 2009
moaning
First of all, this is not going to be my best work, in regard to writing. I don't apologise for this, because it has just taken about 1 hour to muster the energy to plug in the laptop and logon, so think yourself lucky you're not staring at the previous blog entry.
I am back at home now, after my dad dropped me off, showing off some pretty good parenting skills for someone without a great track record of this sort of thing.
So, back on the sofa, in front of my HD TV with Sky HD. If I die here, I will die happy. I would hate to die in front on a non-HD TV with no Sky. That would be the modern equalivent of being run down by a bus with dirty underpants on.
Right then - a run down of my moans. I'm not sure where we left off on Christmas Day, but I started being sick before dinner, which was less insulting than doing it afterwards. I did manage to eat my dads traditional Christmas Dinner of monkfish and scallops, with all the roast trimmings.
At this point, I wasn't actually too bad - but as the afternoon wore on the nausea increased and although I was only sick once more, the nausea didn't go away all day. Or night.
Boxing day was pretty much a repeat. Sick twice. Lots of heavy nausea. My dad did manage to take me to a pub, as that's exactly where any recovering alcoholic with chemotherapy sickness needs to be. However, the soda water did help and I think me ol' man deserved a pint or two, as it can't be a lot of fun waiting on a thinning, white, pasty looking, vomiting person on the sofa - unless it was Kate Moss. He'd probably like that.
I went to bed early - the nights are tough - I hate them. It goes something like this. Dose off. Wake up every 20 mins in a panic, with a mouth as dry the bottom of a parrot cage - gulp water, wake up every 45 minutes to go to the toilet. Repeat about 15 times a night.
Today, I woke up feeling a bit better. The nausea had gone from 8/10 to 6/10 and was a welcome relief. I did manage to get around to see my lovely nan, uncle and family members - all who are (somewhat embarrasingly) reading this blog. It was good to see them, although my contribution to the conversation was a bit limited.
Whilst all this was happening, I was introduced to a new side effect - a sore mouth.
I was warned about this ... it feels really strange - tastes metallic. The inside of my mouth feels sore, raw and eating is a challenge really.
Speaking of which, the appetite has taken a nose dive and I'm must not sure what I want to eat, if anything.
The nausea ramped up again later and ... Oh, Christ - I'm boring myself now. It's fair to say that I'm quite shocked at how RUBBISH I feel after one dose of this stuff and I must confess that I'm really not looking forward to the next few months.
I'm praying that tomorrow I can get out to see Avatar, which I have pre-booked tickets for at the London iMax. I've been looking forward to this for a while. I guess if I puke into a carrier bag whilst watching the film, people will just assume it's the 3D effect.
OK - that's enough of my pity pot. I'll let you go now ... come back soon to hear me moan some more.
Oh yeah, I still have all my hair.
I am back at home now, after my dad dropped me off, showing off some pretty good parenting skills for someone without a great track record of this sort of thing.
So, back on the sofa, in front of my HD TV with Sky HD. If I die here, I will die happy. I would hate to die in front on a non-HD TV with no Sky. That would be the modern equalivent of being run down by a bus with dirty underpants on.
Right then - a run down of my moans. I'm not sure where we left off on Christmas Day, but I started being sick before dinner, which was less insulting than doing it afterwards. I did manage to eat my dads traditional Christmas Dinner of monkfish and scallops, with all the roast trimmings.
At this point, I wasn't actually too bad - but as the afternoon wore on the nausea increased and although I was only sick once more, the nausea didn't go away all day. Or night.
Boxing day was pretty much a repeat. Sick twice. Lots of heavy nausea. My dad did manage to take me to a pub, as that's exactly where any recovering alcoholic with chemotherapy sickness needs to be. However, the soda water did help and I think me ol' man deserved a pint or two, as it can't be a lot of fun waiting on a thinning, white, pasty looking, vomiting person on the sofa - unless it was Kate Moss. He'd probably like that.
I went to bed early - the nights are tough - I hate them. It goes something like this. Dose off. Wake up every 20 mins in a panic, with a mouth as dry the bottom of a parrot cage - gulp water, wake up every 45 minutes to go to the toilet. Repeat about 15 times a night.
Today, I woke up feeling a bit better. The nausea had gone from 8/10 to 6/10 and was a welcome relief. I did manage to get around to see my lovely nan, uncle and family members - all who are (somewhat embarrasingly) reading this blog. It was good to see them, although my contribution to the conversation was a bit limited.
Whilst all this was happening, I was introduced to a new side effect - a sore mouth.
I was warned about this ... it feels really strange - tastes metallic. The inside of my mouth feels sore, raw and eating is a challenge really.
Speaking of which, the appetite has taken a nose dive and I'm must not sure what I want to eat, if anything.
The nausea ramped up again later and ... Oh, Christ - I'm boring myself now. It's fair to say that I'm quite shocked at how RUBBISH I feel after one dose of this stuff and I must confess that I'm really not looking forward to the next few months.
I'm praying that tomorrow I can get out to see Avatar, which I have pre-booked tickets for at the London iMax. I've been looking forward to this for a while. I guess if I puke into a carrier bag whilst watching the film, people will just assume it's the 3D effect.
OK - that's enough of my pity pot. I'll let you go now ... come back soon to hear me moan some more.
Oh yeah, I still have all my hair.
Friday, 25 December 2009
25/12/09
Merry Christmas readers.
And what a strange Christmas it has been. There has been the arctic weather conditions (I hear a rumour that it's officially a White Christmas), there has been one of the greatest UK chart upset in history and I spent Christmas Eve receiving my first chemotherapy session.
I got dropped off at the Chemo ward at 10:15 and was out just after 3:30 ... a long day.
The ward is very informal, as are the nurses. There are plenty of helpful women kicking around to talk to and make you feel relaxed. There are chairs, tables, water coolers, hot drinks/soups machines, biscuits and NHS 'snack boxes' are bought around (sandwiches, crisps, choccy bar etc) . There is a row of modern beds, all remote controllable for people getting longer treatments like myself. Overall, the place is as good as you can hope for. Apart from the fact I would have rather been anywhere else than there, I couldn't fault it. Which is good, as I will be spending quite a bit of time here.
I bought the average age of the patients down by about 15 years yesterday. Most other people were 'getting on a bit' and I should have worn sunglasses, as light was refracting off their incredibly pale skin. They were shuffling around with bags of drips of blood attached to the poles, making small talk about tumour and bloody immigrants. At times, it looked a bit like a later level from a horror survival first-person-shooter game. Now, if only I had picked up that shotgun and ammo pack lying outside the door ...
The treatment went something like this ... quite a bit of that horrible preparation vein/needle/taping business ... lots of questions ... the usual. Before the main event an anti-sickness drip was fed in.
I was going to have 4 drugs administered (see previous blog entry). Two of these were in big syringes that went into the line 'thing' set up previously. Each took about 5 mins to be pushed through. Apart from the fact I'm squeamish and a bit of a big girl when it comes to pain, there really wasn't anything to report here. Oh yes, one was bright red which ensure that my next wee could have passed as Ribena.
OK, well, so far, so good. Then came a smaller drip bag, followed by a much bigger drip bag – Hard to say, but there must be 2 litres in there. This is where things got a little uncomfortable. The vein and arm started to hurt – like a dull pain running up the arm, being quite intense nearer the entry point. I hung in there for about 10 minutes before asking the nurse to turn down the speed of the drip.
It was explained to me that the pain was very common, everyone gets it – and it caused by nothing more sinister than the bag content being very, very cold. As the cold fluid hits the warm veins, it causes the nerves to contract and ... well, basically, it doesn't like it. I was given some of those nice 'wheaty' bags that you warm up microwaves, to place under the arm to heat the area and try to expand all the veins again. This helped.
In fact, things were going quite well, but at 2:00, I suddenly started going into involuntary extreme shivering. Starting off in the teeth and spreading though out my body. It was very intense and looked close to me having a full-on fit. The nurses started to inject me with antihistamines and something else, as well as taking some paracetomol to bring my temperature back down, as it was now hurtling up to counter the shivering. Thankfully, the whole episode was over in 30 mins – although I was now dopey as hell from the antihistamines.
It wasn't the 'cold' bag that caused this – apparently it was a reaction to one of the injected drugs and it has been seen before. Once I was happy-ish again, the rest of the treatment continued without any drama.
I've been given libraries worth of bumph to read but in terms of what's next, it's back for a quick check up on 29th to check everything is OK with my blood and that my next session is on January 7th. I've got the same treatment every 15 days for the next 8 months. Which is quite a depressing thought if I think about it too much.
I have been given three types of drugs I have to take twice daily. I can't even remember what they are all for – I know one is anti-sickness, one is something to do with the stomach lining and I have no idea about the third.
I got taken down to Surrey, where my dad is trying to make up for lost time, although he hasn't grasped the concept that I might not want to listen to Pearl Jam's new album very loudly first thing in the morning. Or at any time really. Silence is why I want to be honest, or maybe just the background noise of some distant whales and dolphins.
So – how am I feeling? Well, last night was not bad - nauseous is the word really. I've woken with all my hair and actually felt OK – but sadly as the day has progressed the nausea has turned into vomiting, which is become a bit more regular. Thankfully years of abuse have taught me how to be sick without too much drama – I know some people hate it – but it used to be part of my Saturday afternoon ritual so I could start refilling myself again.
Anyway, the sickness is pretty strong – I'm at that place where there's nothing else is coming out, so I'm trying to get some soup down in-between, fully expecting it to come back up in the next half hour.
I guess 24 hours ago I was still on the drip, so this is it and something I may have to get used to. Hopefully my system will get used to it soon enough.
It probably goes without saying that I can't really comprehend that it's Christmas Day – I haven't opened any presents yet and dinner is something that I'm trying to get my head around – but I'm in good enough spirits, I'm in good company and I'm still taking the piss out of everything, including myself, wherever possible whilst taking this 'a day at a time'.
So, a strange Christmas indeed. But it could be a lot worse and I most defiantly not sitting here feeling sorry for myself. I'm just sitting here feeling sick.
So, again, Merry Christmas to you lovely people, I hope you are having a great day.
Oh, one final thing – the layout of this blog is not that intuitive ... if you have something to say back, click the 'comments' link below each blog and you can leave your thoughts. I know some of you have not followed a blog before and probably are not aware.
Thanks all for now ... I'll post more if there's any changes. Apologies for typos and bad grammer - doing all this from the Blackberry - no broadband here (feel my pain).
Sent from my BlackBerry® wireless device
Thursday, 24 December 2009
Chemo update
Long day but all done. Have a reaction to one drug and went into extreme shivers for 15 min but that settles after 30 mins once extra drugs where administered.
Got in at 10:15 and out at 3:30. Got to Surrey.
Feel a bit sick, worse by hour, paler than Michael Jackson but alive.
Will write more when I can - loving the texts, emails and FB comments. Bless you all.
Sent from my BlackBerry® wireless device
Got in at 10:15 and out at 3:30. Got to Surrey.
Feel a bit sick, worse by hour, paler than Michael Jackson but alive.
Will write more when I can - loving the texts, emails and FB comments. Bless you all.
Sent from my BlackBerry® wireless device
Wednesday, 23 December 2009
Chemo for Christmas
Hey guys ... I’ll try to give you a bit more information, but to be honest, it's been a whirlwind of a day and I have only just got back to my sofa. The 23rd is a traditional day of end of year speeches, prizes and such like at work. I'm always needed for this - so despite being told all this information at 11:00am today - I really haven't had any time to process it, or read the 'manual' on Hodgkin’s Lymphoma that I've been given.
I can however, put together a few bits of information but please don't use this as a medical reference blog, as I'm still trying to piece it together.
Despite there being 43 different types of Lymphoma, they fall into 'Hodgkin' and 'non-Hodgkin' types. I have 'Hodgkin', which sounds cool, as it's the Kellogg’s of the Lymphoma Cancer world - a proper brand. 'Hodgkins don't make cancer for anyone else'. Besides, anything that starts with 'non' is usually a bit rubbish. ie: non-branded, non-committal, non-sence and non-ce.
Apparently Hodgkin's responds better to treatment, although from the statistic I've seen, the difference is not that huge but I'll take what good news I can get right now. So, yeeeeeeeeeeeeeeessssss! Or something.
There are different types of Hodgkin’s Lymphoma and to be technical, the type I have is 'Nodular Lymphocyte Predominant'. You Google it. I'm tired.
I am at Stage 3. There are 4 stages of cancer, from 1 (you can live with it for years/normally undetected) to 4 - which would be the point (in my case), where the cancer has left the lymphatic system and started to eat away at other organs (liver, lungs etc). The results from my bone marrow shows it hasn't got into there and this is a good thing. Yay. Kinda.
It's rare: Only 1,400 new cases a year in the UK and apparently with my enlarged spleen type it’s even rarer. Well, I've always liked being special and different.
Treatment: I start my chemotherapy tomorrow. I will have it once every 15 days for around 8 months. Obviously there is the spleen issue - no one knows if it will shrink enough, but they are ready to take a punt.
The type of chemo I'm having is known as 'ADVD' - a medical term for the 4 types of drugs I'll have ... Adriamycin (doxorubicin), Bleomycin, Vinblastine (didn't he play for A.C. Milan?) and Dacarbazine.
I've just read in my little booklet, however, that dacarbazine can be very painful when going into the vein - grrrrrrrreat. Apparently drinking lots of water before hand will help and it dilutes the blood. Like I said, don't quote me on any of this. I'll give it a pain rating tomorrow. It can't be as bad as that bloody bone marrow scrape thing.
A session takes about 2 hours. Some drugs are 'whacked in', Trainspotting style. The other is dripped in over the two hours. Must get a Sony PSP.
People react differently to chemo, but side-effects will be ‘sickness’, ‘hairloss throughout body’ (I'll have to get a shaved head or I'll look a bit mental), ‘fatigue’, ‘sore mouth’, ‘eating problems’, ‘nerve damage’, ‘diarrhoea’ (I'll try not to write about that again).
Long term effects are 'reduced fertility', 'neuropathy' (loss of reflexes and sensations in fingers and toes - could make typing interesting and it's probably put laid to any plans of me fulfilling a life's dream of becoming a seamstress), 'heart failure' (n/a, don't have one) and finally 'further risk of cancer'. But this is all a bit like reading the small print on a packet of paracetamol – you’d never take one of those if you got all the side effects listed.
Right – I’m tired and my phone doesn’t stop ringing. I’ve got to get to Surrey for Xmas after the chemo tomorrow (I probably won’t be allowed to drive and will be spending Christmas as a hostage of various family members, with no means to escape. I have Fear).
I haven’t packed and I can’t be bothered to do this tonight. And my kitchen is a mess. Frankly, I need a housemaid. Applications to the usual address. Must be good with vomit, diarrhoea and picking up hairs. Short skirts optional, but appreciated.
Right. There it is. Another bloody weird day. Tomorrow promises to be more of the same. I shall try to get to a keyboard tomorrow to give you a Sickness Rating from my first dose of radioactive material.
Merry Christmas. x
I can however, put together a few bits of information but please don't use this as a medical reference blog, as I'm still trying to piece it together.
Despite there being 43 different types of Lymphoma, they fall into 'Hodgkin' and 'non-Hodgkin' types. I have 'Hodgkin', which sounds cool, as it's the Kellogg’s of the Lymphoma Cancer world - a proper brand. 'Hodgkins don't make cancer for anyone else'. Besides, anything that starts with 'non' is usually a bit rubbish. ie: non-branded, non-committal, non-sence and non-ce.
Apparently Hodgkin's responds better to treatment, although from the statistic I've seen, the difference is not that huge but I'll take what good news I can get right now. So, yeeeeeeeeeeeeeeessssss! Or something.
There are different types of Hodgkin’s Lymphoma and to be technical, the type I have is 'Nodular Lymphocyte Predominant'. You Google it. I'm tired.
I am at Stage 3. There are 4 stages of cancer, from 1 (you can live with it for years/normally undetected) to 4 - which would be the point (in my case), where the cancer has left the lymphatic system and started to eat away at other organs (liver, lungs etc). The results from my bone marrow shows it hasn't got into there and this is a good thing. Yay. Kinda.
It's rare: Only 1,400 new cases a year in the UK and apparently with my enlarged spleen type it’s even rarer. Well, I've always liked being special and different.
Treatment: I start my chemotherapy tomorrow. I will have it once every 15 days for around 8 months. Obviously there is the spleen issue - no one knows if it will shrink enough, but they are ready to take a punt.
The type of chemo I'm having is known as 'ADVD' - a medical term for the 4 types of drugs I'll have ... Adriamycin (doxorubicin), Bleomycin, Vinblastine (didn't he play for A.C. Milan?) and Dacarbazine.
I've just read in my little booklet, however, that dacarbazine can be very painful when going into the vein - grrrrrrrreat. Apparently drinking lots of water before hand will help and it dilutes the blood. Like I said, don't quote me on any of this. I'll give it a pain rating tomorrow. It can't be as bad as that bloody bone marrow scrape thing.
A session takes about 2 hours. Some drugs are 'whacked in', Trainspotting style. The other is dripped in over the two hours. Must get a Sony PSP.
People react differently to chemo, but side-effects will be ‘sickness’, ‘hairloss throughout body’ (I'll have to get a shaved head or I'll look a bit mental), ‘fatigue’, ‘sore mouth’, ‘eating problems’, ‘nerve damage’, ‘diarrhoea’ (I'll try not to write about that again).
Long term effects are 'reduced fertility', 'neuropathy' (loss of reflexes and sensations in fingers and toes - could make typing interesting and it's probably put laid to any plans of me fulfilling a life's dream of becoming a seamstress), 'heart failure' (n/a, don't have one) and finally 'further risk of cancer'. But this is all a bit like reading the small print on a packet of paracetamol – you’d never take one of those if you got all the side effects listed.
Right – I’m tired and my phone doesn’t stop ringing. I’ve got to get to Surrey for Xmas after the chemo tomorrow (I probably won’t be allowed to drive and will be spending Christmas as a hostage of various family members, with no means to escape. I have Fear).
I haven’t packed and I can’t be bothered to do this tonight. And my kitchen is a mess. Frankly, I need a housemaid. Applications to the usual address. Must be good with vomit, diarrhoea and picking up hairs. Short skirts optional, but appreciated.
Right. There it is. Another bloody weird day. Tomorrow promises to be more of the same. I shall try to get to a keyboard tomorrow to give you a Sickness Rating from my first dose of radioactive material.
Merry Christmas. x
results just in
A micro blog for you. More news when I can get around to writing it.
1. Hogkin Lymphoma (aka Hogkin disease)
2. Stage 3 (of 4)
3. Spleen to stay for now - to see how it responds
4. 8 months chemo anticipated
5. 1st chemo session starts tomorrow (24th Dec)
I cannot take any phone calls right now, as I am preparing the company End of Year presentations etc.
S.S.x
1. Hogkin Lymphoma (aka Hogkin disease)
2. Stage 3 (of 4)
3. Spleen to stay for now - to see how it responds
4. 8 months chemo anticipated
5. 1st chemo session starts tomorrow (24th Dec)
I cannot take any phone calls right now, as I am preparing the company End of Year presentations etc.
S.S.x
Sunday, 20 December 2009
I won't poo when you tell me!
Great news, Rage Against the Machine have made the Christmas Number 1. Incredible story this, a real poke in the eye for Simon Cowell's 'guaranteed' No 1 X-Factor winners. I downloaded about 5 copies myself over the weekend which helped towards the 500,000+ copies that were sold, beating the X Factor single by 50,000.
A bit of a weird confession this, but after listening to the chart countdown (for the 1st time since I was 13) and being in suspense for days about this outcome, when they played Joe's record at number 2 (proving Rage would be number 1), I kinda burst into tears. I'm not too sure what that's about - I haven't done any crying about this whole 'lymphoma' situation, as there really doesn't seem anything to cry about - it just is ... but it's certainly a strange Christmas. With all my 'news', the big snows we've got here and this epic win for Rage, it just seemed to pop out sideways in this fantastic victory. It was oddly important to me. The song itself has been with me since my young day of living in my Woking squat/dosshouse - a seminal tune that we used to jump around to and has been with me my whole life ... but it was more than that I think ... I guess it's just another very strange event in a very strange time for me. I certainly won't forget the Christmas of 2009.
Oh yeah, I won £110 on a bet I place on Rage getting to number 1.
Anyway, possibly even better news than all of this is that the laxatives I have been necking in increasing numbers, have started working in full effect and now I'm looser than Kerry Katona's grip on reality.
In fact, I'm probably a bit too fluid and have been rushing to the bathroom every 15 mins and will probably be dead of dehydration in the morning, but at least my spleen has room to do its expansive thing now.
Now, if you are familiar with the full Rage single, you will appreciate the brilliance of this blog title.
Right, that is enough about my bowel movements - it will not be mentioned again. But it's a learning curve, all of this and a unwelcome little extra I just didn't envisenge when I started popping the ol' pain killers.
Back to work tomorrow. Strangely, looking forward to it.
A bit of a weird confession this, but after listening to the chart countdown (for the 1st time since I was 13) and being in suspense for days about this outcome, when they played Joe's record at number 2 (proving Rage would be number 1), I kinda burst into tears. I'm not too sure what that's about - I haven't done any crying about this whole 'lymphoma' situation, as there really doesn't seem anything to cry about - it just is ... but it's certainly a strange Christmas. With all my 'news', the big snows we've got here and this epic win for Rage, it just seemed to pop out sideways in this fantastic victory. It was oddly important to me. The song itself has been with me since my young day of living in my Woking squat/dosshouse - a seminal tune that we used to jump around to and has been with me my whole life ... but it was more than that I think ... I guess it's just another very strange event in a very strange time for me. I certainly won't forget the Christmas of 2009.
Oh yeah, I won £110 on a bet I place on Rage getting to number 1.
Anyway, possibly even better news than all of this is that the laxatives I have been necking in increasing numbers, have started working in full effect and now I'm looser than Kerry Katona's grip on reality.
In fact, I'm probably a bit too fluid and have been rushing to the bathroom every 15 mins and will probably be dead of dehydration in the morning, but at least my spleen has room to do its expansive thing now.
Now, if you are familiar with the full Rage single, you will appreciate the brilliance of this blog title.
Right, that is enough about my bowel movements - it will not be mentioned again. But it's a learning curve, all of this and a unwelcome little extra I just didn't envisenge when I started popping the ol' pain killers.
Back to work tomorrow. Strangely, looking forward to it.
My advent calender
Another sleepless night. Hugely irritated by still only being able to lie on my back, like a £15 whore.
I'm watching another fine layer of snow fall, filling in the gaps the people have made and like a child opening windows on an advent calender, I'm counting down the days until the 23rd.
I'm itchy, hot (oddly), insomniaic (which is a word I just invented) and full of shit. Literally.
I hate the nights - I've been up since 8am and still its the same. Itchy, hot, uncomfortable, very awake and very irritable.
Rage Against the Machine bloody better be The Christmas Number One tomorrow, as its been the only real diversion in this otherwise surreal game of the Daily Cancer Advent Calender Window countdown.
I wonder what lies behind window 23.
All over the world, kids are praying for bikes, playstations and barbies. I'm lying wide awake in the dark, praying to be able to take a good shit.
Humbug.
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I'm watching another fine layer of snow fall, filling in the gaps the people have made and like a child opening windows on an advent calender, I'm counting down the days until the 23rd.
I'm itchy, hot (oddly), insomniaic (which is a word I just invented) and full of shit. Literally.
I hate the nights - I've been up since 8am and still its the same. Itchy, hot, uncomfortable, very awake and very irritable.
Rage Against the Machine bloody better be The Christmas Number One tomorrow, as its been the only real diversion in this otherwise surreal game of the Daily Cancer Advent Calender Window countdown.
I wonder what lies behind window 23.
All over the world, kids are praying for bikes, playstations and barbies. I'm lying wide awake in the dark, praying to be able to take a good shit.
Humbug.
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Friday, 18 December 2009
Results due 23/12/09
I've just received a phone call to say that my Consultant is expecting the results of my biopsy on Tuesday and they will faxed over to her as soon as they are available. I therefore have an appointment on Wednesday Dec 23rd at 10:30am (this might be delayed by a day if the results aren't ready in time).
Overall, I'm OK ... get tired a bit quickly now - don't have the energy to do too much without needing to retreat to the sofa/bed. Maybe there's nothing the matter with me but I've just falling into some sort of 'student lethargy' mode, as I'm sure this is what I used to do when I was 19.
Was up late last night, as The Ever Growing Huge Pulsating Spleen at the Centre of the Universe decided to push the kidneys aside, like a fat man sitting on a bus, in a bid to claim more room for itself. This left me with a pain in my side, a vaguely familiar feeling from the long-gone days of 5 day round-the-clock drinking sessions. But worse.
In other news, the codeine I'm using to stop the above, is now causing obscene constipation and two nights ago, I gave birth to a large house brick. Sideways.
I never said this blog was going to pretty.
Be grateful I didn't take a photo.
Overall, I'm OK ... get tired a bit quickly now - don't have the energy to do too much without needing to retreat to the sofa/bed. Maybe there's nothing the matter with me but I've just falling into some sort of 'student lethargy' mode, as I'm sure this is what I used to do when I was 19.
Was up late last night, as The Ever Growing Huge Pulsating Spleen at the Centre of the Universe decided to push the kidneys aside, like a fat man sitting on a bus, in a bid to claim more room for itself. This left me with a pain in my side, a vaguely familiar feeling from the long-gone days of 5 day round-the-clock drinking sessions. But worse.
In other news, the codeine I'm using to stop the above, is now causing obscene constipation and two nights ago, I gave birth to a large house brick. Sideways.
I never said this blog was going to pretty.
Be grateful I didn't take a photo.
Tuesday, 15 December 2009
A healthy spleen
Trying to find a healthy spleen image to compare with my enlarged one in the previous post.
Found this ...
... which isn't that reassuring really. I assume this slice is taken from a completely different section, but it does kinda explain why my Consultant was more than a tad concerned.
Eeeek ...
Found this ...
... which isn't that reassuring really. I assume this slice is taken from a completely different section, but it does kinda explain why my Consultant was more than a tad concerned.
Eeeek ...
vented: my spleen
Ta-da!
As promised, here's a snap-shot of the offending Spleeneroony. This picture is taken from my CT scan 'movie' disk (one for the grandkids, eh) and has been recently been smuggled out - '24' style - by my secret agent working from within the hospital.
Now you're probably need a little orientation to understand this mass of grey, so bear with me.
1. You are looking at cross section of me, a slice
2. We have travelled from my head, down my body, towards my feet.
2. My 'bum' is on the floor, my tummy is sticking up
3. The brite white round-ish thing is my spine
With me? Right - we have just travelled down through my body towards my feet and stopped here - where you will see the large lumpy lumperson on the right hand side. The great glob of stuff is my spleen.
1. Note how it is pushing my kidney below. Look at the other kidney on the left for where is should be
2. Up and the the left of this squashed kidney is where my intestines are - they have been pushed and squashed to the left
3. The darker 'shadows' in the spleen, I have been told, is the badness growing within. Badness being cancer.
4. Note how it's pushing my stomach out at the top - I can feel him and give him a little pat now and again. For a small fee, I'll let you feel him too. But no patting.
All of this explains quite nicely why I have been walking around like a hunchback recently, clutching my side and grumbling (ok, I always grumble, but...)
I'm not 100% sure how big the spleen should be, but I'm fairly certain this is no ordinary garden variety spleen. This is a prize winning, jumbo-spleen that shall proudly sport a '1st' ribbon come the next annual Kings Langley Internal Organ Growing Competition.
I am so proud.
Friday, 11 December 2009
Wank bank
I forgot about this one.
I've been offered, or rather my sperm has been offered, a place in a freezer in London, as my impending treatments are likely to make me infertile.
I've never really wanted children - although I've had periods where I thought I might - but they have been brief.
I think i'll take them up on the offer though - for a start it will make an interesting story - 'knocking one out' into a pot to be frozen until such a time that Mrs Right wants to take a trip to London with a Bunsen burner and a turkey baster.
I guess on the plus side, this will ensure that should I ever really wants kids, it won't be done on a whim or an 'accident'. Someone *may* have to jump through a lot of hoops to make babies with me. The whole IVF egg thingy ... not overly romantic, but it should ensure that nothing will be done without really thinking about it.
To be honest, if the whole world was built on this model, we wouldn't be in the overpopulated and overdrongoed mess we are in now. Maybe this is a global solution. All men toss into a pot at 16, followed by sterilization after. If you want a kid, proove you can look after and take care of it.
Right - that's the end of my rant. Stayed tuned for my blog about my trip to the Wank Bank in a future blog. Could be fun ...
I've been offered, or rather my sperm has been offered, a place in a freezer in London, as my impending treatments are likely to make me infertile.
I've never really wanted children - although I've had periods where I thought I might - but they have been brief.
I think i'll take them up on the offer though - for a start it will make an interesting story - 'knocking one out' into a pot to be frozen until such a time that Mrs Right wants to take a trip to London with a Bunsen burner and a turkey baster.
I guess on the plus side, this will ensure that should I ever really wants kids, it won't be done on a whim or an 'accident'. Someone *may* have to jump through a lot of hoops to make babies with me. The whole IVF egg thingy ... not overly romantic, but it should ensure that nothing will be done without really thinking about it.
To be honest, if the whole world was built on this model, we wouldn't be in the overpopulated and overdrongoed mess we are in now. Maybe this is a global solution. All men toss into a pot at 16, followed by sterilization after. If you want a kid, proove you can look after and take care of it.
Right - that's the end of my rant. Stayed tuned for my blog about my trip to the Wank Bank in a future blog. Could be fun ...
That was the week that was ...
Good grief. That was a hell of a week.
It's amazing how time can be morphed when strange things are afoot. Normally a Monday to Friday would fly by - routines remains the same, little variation, no suprises. I cannot honestly believe that it was only on Monday at 12:00, that I was getting The News (confirmed).
Since then I've had my diagnosis of Lymphoma, a horrendous bone marrow scrape, I've sayed in hospital with some very sick people, had a biopsy, answered a million questions, been examinded by a hundred doctors and taken some very strange drugs. Nearly 7 years "drug-free" has kinda gone out the window, but I guess under the circumstances, it's understandable.
The itself operation was amazing really. Only a small op as such, but the whole procedure is just incrediable. I'd had a dose of some morphine based painkiller an hour before, got to theatre, had an amazing shot of something descibed as 'a little comforter' - just total bliss - then the gas mask was on and I took little breaths just hoping I could suspend that total painfree feeling for a few momen..
.. then you come to. 2 hours has passed, although it seems like a second. Zero memory of anything. Nothing. Not even a dream or a distance memory. Just one second there. Next second here.
A never-quenchable thirst followed all day with a strange side effect of not being able to force out any wee. Complete lack of control of the bladder in terms of 'pushing'. At least the 'holding' was still there. Odd. Took about 8 hours to sort that one back out. Glad to be back in control of the waterworks.
I discharged myself at 8:00pm. I thought I'd made a mistake as I went home. I was so light-headed. A good friend took care of me. Got me some food at home (even did my washing up) and for a while there, I had a taste of what it must like to be too old and frail to do anything and need a carer. Scary. I was left alone once set up and spent the evening forcing pizza slices down every 20 mins to regain some strength.
Sleep OK. Just waited until 1:30am, until I HAD to go to bed. Can only sleep on back. Right arm cut, so can't sleep on the that side, left side swollen spleen, so that's out.
Although I woke with a lot of night sweats and needed to drink often, I did sleep and I finally got out of bed at 13:00 - been a while since that happened. Felt like a student.
I have a bad sore throat - not sure if that's the lymph nodes in my throat now enlarging or a side-effect of the tubes stuck down the throat.
I have called my doctor who is writing out a 'script for some high-grade painkillers should things get tough in the next 14 days or so.
And so begins the wait ... thank God there is no more poking, injecting, proding or cutting for a while. I just need to keep occupied until the results come back and I know exactly what flavour of Lymphoma we are looking and at what stage it is. And if my spleen is to stay of go (I suspect it is to go, due to the size).
So - that's that - there may not be much more to report for a while, although I do have one of my 'insiders' who reckons he can get my a download on the CT scan images and movie - so I might be able to show you all a fly-through of my rotten spleen. You lucky, lucky people.
Sorry the writing is pretty poor. I'm not feeling overly creative - but that doesn't mean I'm miserable! I'm in quite good spirits, still poking fun at myself, the situation and others whenever possible. I'm pretty confident that come Monday, I'll be back at work and able to enjoy the run up to Christmas without too much drama.
Take care ... speak soon.
It's amazing how time can be morphed when strange things are afoot. Normally a Monday to Friday would fly by - routines remains the same, little variation, no suprises. I cannot honestly believe that it was only on Monday at 12:00, that I was getting The News (confirmed).
Since then I've had my diagnosis of Lymphoma, a horrendous bone marrow scrape, I've sayed in hospital with some very sick people, had a biopsy, answered a million questions, been examinded by a hundred doctors and taken some very strange drugs. Nearly 7 years "drug-free" has kinda gone out the window, but I guess under the circumstances, it's understandable.
The itself operation was amazing really. Only a small op as such, but the whole procedure is just incrediable. I'd had a dose of some morphine based painkiller an hour before, got to theatre, had an amazing shot of something descibed as 'a little comforter' - just total bliss - then the gas mask was on and I took little breaths just hoping I could suspend that total painfree feeling for a few momen..
.. then you come to. 2 hours has passed, although it seems like a second. Zero memory of anything. Nothing. Not even a dream or a distance memory. Just one second there. Next second here.
A never-quenchable thirst followed all day with a strange side effect of not being able to force out any wee. Complete lack of control of the bladder in terms of 'pushing'. At least the 'holding' was still there. Odd. Took about 8 hours to sort that one back out. Glad to be back in control of the waterworks.
I discharged myself at 8:00pm. I thought I'd made a mistake as I went home. I was so light-headed. A good friend took care of me. Got me some food at home (even did my washing up) and for a while there, I had a taste of what it must like to be too old and frail to do anything and need a carer. Scary. I was left alone once set up and spent the evening forcing pizza slices down every 20 mins to regain some strength.
Sleep OK. Just waited until 1:30am, until I HAD to go to bed. Can only sleep on back. Right arm cut, so can't sleep on the that side, left side swollen spleen, so that's out.
Although I woke with a lot of night sweats and needed to drink often, I did sleep and I finally got out of bed at 13:00 - been a while since that happened. Felt like a student.
I have a bad sore throat - not sure if that's the lymph nodes in my throat now enlarging or a side-effect of the tubes stuck down the throat.
I have called my doctor who is writing out a 'script for some high-grade painkillers should things get tough in the next 14 days or so.
And so begins the wait ... thank God there is no more poking, injecting, proding or cutting for a while. I just need to keep occupied until the results come back and I know exactly what flavour of Lymphoma we are looking and at what stage it is. And if my spleen is to stay of go (I suspect it is to go, due to the size).
So - that's that - there may not be much more to report for a while, although I do have one of my 'insiders' who reckons he can get my a download on the CT scan images and movie - so I might be able to show you all a fly-through of my rotten spleen. You lucky, lucky people.
Sorry the writing is pretty poor. I'm not feeling overly creative - but that doesn't mean I'm miserable! I'm in quite good spirits, still poking fun at myself, the situation and others whenever possible. I'm pretty confident that come Monday, I'll be back at work and able to enjoy the run up to Christmas without too much drama.
Take care ... speak soon.
Thursday, 10 December 2009
Back home
Home. Feel shit and very light headed. But it'll be ok. I can't write tonight. Another weird day. X
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Ouch
Here comes the big pain. Underarm burning to hell. I guess that'll be where they cut it open. Jesushchristonabike. Moredrugsmoredrugsmoredrugs.
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Biopsy done
All done. Took at hour or so. I am one lymph node lighter.
Throat is sore from tubes but thankfully I'm allowed water now.
Blagged some morphine before and after so feeling the best I have done for months. Lovely stuff.
Probably won't be feeling so great later, but for now, I've going to enjoy this whilst it lasts.
I'll write more tonight.
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Throat is sore from tubes but thankfully I'm allowed water now.
Blagged some morphine before and after so feeling the best I have done for months. Lovely stuff.
Probably won't be feeling so great later, but for now, I've going to enjoy this whilst it lasts.
I'll write more tonight.
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Hobo
I slept rough last night.
I slept on a bench in the TV room with my jumper as a blanket. No snoring, shouting, belching, farting, groaning or beeping - bliss.
Was woken, showered and into my sexy plastic pants, stockings and gown.
I think I'm up for my tiny op pretty early. Looking forward to that 3 seconds of bliss before unconsciousness. There might even be sedatives before *exciting*. Tried to blag a valium last night. Failed to score.
Right. Have a great day. Back very soon, one lymph node lighter.
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I slept on a bench in the TV room with my jumper as a blanket. No snoring, shouting, belching, farting, groaning or beeping - bliss.
Was woken, showered and into my sexy plastic pants, stockings and gown.
I think I'm up for my tiny op pretty early. Looking forward to that 3 seconds of bliss before unconsciousness. There might even be sedatives before *exciting*. Tried to blag a valium last night. Failed to score.
Right. Have a great day. Back very soon, one lymph node lighter.
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Wednesday, 9 December 2009
...
... I forgot my earplugs.
Bollocks.
A hundred dying men are breaking wind.
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Bollocks.
A hundred dying men are breaking wind.
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Lab rat
This is hard to write.
Not in a "I'm leaving you" kind of way. But because I've got a bloody needle in my right arm right in the bendy bit and I'm typing on a blackberry, which requires the bendy bit to bend.
So this is hard to write.
In a ward. Lights out but found a TV room with football and found a guy to chat to with cancer, who is also a diver. What are the odds?
Felt crap this morning, little sleep and the trauma of the bone scrape was getting to me, mentally and physically. I don't know why, but the scariest part of this whole deal has been thinking about when I have to do that again.
A good friend came to see me this evening. The nurses let me roam free after sticking this thing in my arm and we went for a CrappoBurger over the road. Company is appreciated. Spend too long alone and you just can't but think about things like 'spleens'.
I'm feeling like a lab rat already. Poked, prodded, felt, injected and questioned. Although rats are unlikely to be questioned that much to be honest.
I'm tired but won't sleep. Some seriously looking ill people lie around me, like I've stumbled into the set of the next Rob Zombie film. A glimpse of our futures, near or far.
Tomorrow, a general anesthetic (?) and a quick removal of lymph node from under the arm. Must remember not to spray on deodorant tomorrow.
Thanks to the gazillion of well-wishers. Its touching.
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Not in a "I'm leaving you" kind of way. But because I've got a bloody needle in my right arm right in the bendy bit and I'm typing on a blackberry, which requires the bendy bit to bend.
So this is hard to write.
In a ward. Lights out but found a TV room with football and found a guy to chat to with cancer, who is also a diver. What are the odds?
Felt crap this morning, little sleep and the trauma of the bone scrape was getting to me, mentally and physically. I don't know why, but the scariest part of this whole deal has been thinking about when I have to do that again.
A good friend came to see me this evening. The nurses let me roam free after sticking this thing in my arm and we went for a CrappoBurger over the road. Company is appreciated. Spend too long alone and you just can't but think about things like 'spleens'.
I'm feeling like a lab rat already. Poked, prodded, felt, injected and questioned. Although rats are unlikely to be questioned that much to be honest.
I'm tired but won't sleep. Some seriously looking ill people lie around me, like I've stumbled into the set of the next Rob Zombie film. A glimpse of our futures, near or far.
Tomorrow, a general anesthetic (?) and a quick removal of lymph node from under the arm. Must remember not to spray on deodorant tomorrow.
Thanks to the gazillion of well-wishers. Its touching.
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Nightmare
It's 02:42 and I'm watching The Jeremy Kyle show. I can't sleep. Actually, that's a lie - I can sleep but I don't like it because I keep having this dream about needles in my spine and it's horrendous.
The bruising of todays little procedure is still twinging a bit in the bone - and I guess that most unnatural feeling is transfering to my dreams. So I've decided that I will attempt to stay away for a while, eat some noodles and watch some car-crash TV.
Not looking forward to hospital tomorrow night to be honest. In fact, 48 hours into this whole 'you've got cancer' thing, I've decided that it definately is rubbish. It was possibly half interesting for a few hours back there. But now, when I sit back and think about it - it is very rubbish.
Speaking of which, Jeremy Kyle is rubbish, too. I've never seen it before, being gainfully employed. But I had been warned. Really ... people ... dignity.
The bruising of todays little procedure is still twinging a bit in the bone - and I guess that most unnatural feeling is transfering to my dreams. So I've decided that I will attempt to stay away for a while, eat some noodles and watch some car-crash TV.
Not looking forward to hospital tomorrow night to be honest. In fact, 48 hours into this whole 'you've got cancer' thing, I've decided that it definately is rubbish. It was possibly half interesting for a few hours back there. But now, when I sit back and think about it - it is very rubbish.
Speaking of which, Jeremy Kyle is rubbish, too. I've never seen it before, being gainfully employed. But I had been warned. Really ... people ... dignity.
Tuesday, 8 December 2009
Biopsy Call Up
Tomorrow I have to get ready to jump into a hospital bed at the delightful Watford General and stay overnight.
On Thursday I will be 'put to sleep' and they will take a lymph node from under my arm.
Then, like a detective with all the clues - the blood, the bone marrow, the lymph node - they will be able to find out exactly what flavour of Lymphoma I have.
In the meantime, I've been pencilled in for the start of chemo in January 4th but that does all rather depend if they let me keep my spleen or not. If they take out my spleen - and it's looking like they will, as apparently it's very large and very, er, rotten - then chemo will be delayed until I've recovered from that.
Ho-hum.
On Thursday I will be 'put to sleep' and they will take a lymph node from under my arm.
Then, like a detective with all the clues - the blood, the bone marrow, the lymph node - they will be able to find out exactly what flavour of Lymphoma I have.
In the meantime, I've been pencilled in for the start of chemo in January 4th but that does all rather depend if they let me keep my spleen or not. If they take out my spleen - and it's looking like they will, as apparently it's very large and very, er, rotten - then chemo will be delayed until I've recovered from that.
Ho-hum.
Pain in the Ass
I had a bone marrow sample taken from my thigh bone today. Don't recommend it.
I famously do not get on with dentists. I fight them. Generally they have to knock me out to get anything done of any substance. It's the anticipation of pain, rather than the pain itself that gets me. That feeling that at any given moment that sharp pointy thing could strike a nerve. I hate it. More than pain itself.
So there I am, with my pants down and my arse out. Waiting. I dare not look at those needles but I know they are big. At each stage of the three pushes it goes down deeper towards my bone, numbing it along the way. But all the numbing in the world doesn't stop me panicing and cletching my face up into a small ball.
It wasn't pleasant. The 'nasty bit' of the procedure took about 10 mins or more - hard to say ... but the bit where they pull out the blood and bone ... oh god, I don't want to write about it anymore because it's making me squeemish again. All you really need to know was that I ended up calling the doctor a 'f**king b*stard', which I later apologied for.
The end result was a small 'worm' of bone marrow and some blood for further investigation.
Apparently, I will have to have to get used to this. As a various time during my chemo sessions they will need to do tests to see how things are coming along.
Pain in the ass.
I famously do not get on with dentists. I fight them. Generally they have to knock me out to get anything done of any substance. It's the anticipation of pain, rather than the pain itself that gets me. That feeling that at any given moment that sharp pointy thing could strike a nerve. I hate it. More than pain itself.
So there I am, with my pants down and my arse out. Waiting. I dare not look at those needles but I know they are big. At each stage of the three pushes it goes down deeper towards my bone, numbing it along the way. But all the numbing in the world doesn't stop me panicing and cletching my face up into a small ball.
It wasn't pleasant. The 'nasty bit' of the procedure took about 10 mins or more - hard to say ... but the bit where they pull out the blood and bone ... oh god, I don't want to write about it anymore because it's making me squeemish again. All you really need to know was that I ended up calling the doctor a 'f**king b*stard', which I later apologied for.
The end result was a small 'worm' of bone marrow and some blood for further investigation.
Apparently, I will have to have to get used to this. As a various time during my chemo sessions they will need to do tests to see how things are coming along.
Pain in the ass.
Night Sweats
One of the 'B' symptoms of this 'situation' is Night Sweats. I've been having them for months now. My (now ex) girlfriend found it so disgusting that I was designated my own special 'wetting duvet', which was the thinnest duvet I could find (tog 2.5) and yet sometimes I would still wake up at 2:00am covered in cold sweat.
I was very happy to find it's a symptom of Lyphoma as it was semi-embarrasing. I seem to get a few days on, a few days off at the 'Night Sweats' at the moment and subsequently, the duvet and pillow case are being washed more than my underwear at the moment.
I've kinda become attached to my wetting duvet. It smells revolting to everyone else but me.
I was very happy to find it's a symptom of Lyphoma as it was semi-embarrasing. I seem to get a few days on, a few days off at the 'Night Sweats' at the moment and subsequently, the duvet and pillow case are being washed more than my underwear at the moment.
I've kinda become attached to my wetting duvet. It smells revolting to everyone else but me.
Monday, 7 December 2009
Strange Day
On 7/12/2009, I was told that I had cancer. Well, lymphoma. And I was told I had a spleen so enlarged that they were considered taking it out permanently.
Lots of other stuff was said. Chemotherapy, bone marrow samples, lymph nodes being taken from my arms ... I shall try to explain all of this in due course, but it's been a weird day, so bear with me whilst I get this blog up and going and we'll take it from there, huh.
To be honest, I don't know a huge amount about Lymphoma - but join me on my advertures as I discover more, go through the impending rollercoaster and get out the other side, hopefully with all my hair in tact.
Here's our starting point for learning a bit more about the cancer ...
What is Lymphoma?
Lots of other stuff was said. Chemotherapy, bone marrow samples, lymph nodes being taken from my arms ... I shall try to explain all of this in due course, but it's been a weird day, so bear with me whilst I get this blog up and going and we'll take it from there, huh.
To be honest, I don't know a huge amount about Lymphoma - but join me on my advertures as I discover more, go through the impending rollercoaster and get out the other side, hopefully with all my hair in tact.
Here's our starting point for learning a bit more about the cancer ...
What is Lymphoma?
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