cupboard77

[cupboard77]

"The dreams in which I'm dying are the best iv ever had..."

Tomorrow I find out who is winning this battle so far. When I went to see the consultant in October they gave took blood for a special test. It's the 3 month anniversary of starting treatment and tomorrow I get the results.

If the pill I am on is doing its job properly my mutated cell count will be lower and I will stay on this pill and I will stay winning

If the pill is not working the cells will have increased and they will have to try the next pill and cancer is winning.

But even if I lose this battle the war is not over and that's me trying to stay positive because just now it feels like I am getting my ass handed to me. I am constantly in pain and it seems if my heart rate goes up and the blood pumps round the body the pain deepens (it's like the film crank but not as many shootings) this could be a side effect of the imatinib pill I take or it could be the cancer growing in strength. I hope its the pill.

I seem to have hit some rare side effects of the pill. Palm redness with a burning sensation is a new one on me but its annoying. Also I have become sensitive to the cold. Any one that knows me knows I can walk round in a t-shirt in the middle of winter and walked up the highest mountain in UK in a t-shirt without blinking an eye but now... Now every day is a duvet and hot water bottle day and everyone that comes into the house complains about the blast furnace I am living in while I sit there still cold and sore.

Most of my days consist of walking Jerry at about 5 in the morning and this is my fave 40 mins of the day. This is just me and him and its before the cancer wakes up for the day I get home have a coffee watch storage wars then go back to bed. I get up again for work about 9 and things are a bit sore but okish I take a banana and my imatinib pill before going to work. I work till about 2 then come home and walk Jerry again. Usually by now the painkillers are being taken and the pace has slowed. After that I try sleeping until half 4 but usually I can't sleep because things hurt and ache. And this is where I struggle the most trying to get back into work for the rest of my shift by now only painkillers and willpower get me back out of bed. Showered and back in the car at work I do another few hours and I'm done. Literally done I have nothing left to give and it's not till this point that I see my wife when she finishes her shift and I feel bad she only sees the worst of me.

What's the point of this summary of my day? Well if my pill is working and I am winning then the cancer is not causing all this pain. Some of it will be the pill in fact a lot of it will be the pill and that scares me because I might be on this for another 30 years.

I know I know sure this pain might pass and I hope it does but when your in it you don't see it ending so in my head the pain equals long term pain and seems such a catch 22 situation to be in. Win and your hurt. Lose and your cancer grows and you have to attack it a different way . Also some of the other pills have different side effects and regimes I would have to get used to which would mean more time off work probably.

I think just now I feel a bit defeated either way but I guess every battle and war has peaks and troughs and I am definitely in a battle.

So what do I want to happen tomorrow in my heart of hearts do I want to hear that this is it this is possibly how my life plays out with aches and pains or do I want to hear that I need to try another pill and everything that brings with it...... I don't think I know the answer to be honest but I guess I'll find out soon enough.

P. S. To anyone reading my blogs. Jesus they get depressing as they go on but hopefully there will be lighter ones. I prefer writing the lighter ones but I also like putting my thoughts out there

[cupboard77]

White rabbit

Jefferson airplane sang on their 60s hit, "one pill makes you larger, one pill makes you smaller and the ones mother gives you don't do anything at all.

These lyrics came to mind the other day as I took my imatib tki pill and I think it was the first time I realised that this one pill (that's all I take now except for paracetamol for pain) this one brownish pill the size of a horse tranquillizer (never seen one but imagine its not a small pill... I mean horses are big so ya know it's logical their medicines are big) this one pill that I take about 9 am every morning after some cereal. This one pill that I have to remember to take every day. This one pill that I have set reminders on my phone to take every day ( when asked if I wanted the alarm daily, weekly, 4 weekly, monthly or yearly I was disappointed there was not a forever button). This one pill (you get the fucking point I know I know I only take one pill sweet jesus get on with it!) if I stopped taking it I would be dead within 3 to 7 years this pill is like the holy grail it grants me life.... This pill at that moment made me feel very small in this world indeed.

I always think that people taking medicine to stay alive take loads of medicines. By the end of my dad's life he was on a few pills. Same with my mum and as for my gran she fucking rattled like a pill bottle as she walked. And me. Well I get 1 just struck me as weird and it never struck me until the other day ( when I pointed this out to wife about if I stopped the pill she promptly burst into tears and I promptly made a mental note to keep some of these thoughts to myself).

Apart from realising it is a small thing that keeps me on this earth things are going OK. I'm back to work (well I'm now on 10 days hols but just did two weeks full Time) and it was OK it hurt. God it hurt but I got through it. Seems my legs go first. The knees start to hurt then the chest and everything else follows. My cancer nurse says unfortunately these aches are just something I have to get used to. I know me and pain(we are old friends) and I know ill eventually just get used to it. Iv noticed a few people treat me different now at work but they will come to realise I'm still just me. I haven't grown another head or another leg so hopefully the staring will stop. Some of my cancer jokes definetly don't hit the mark and make a few people uncomfortable. But again over time they will get used to me. Humour is my defence against everything. There is not a situation that I haven't found the humour in its my coping mechanism and it works for me.

So yeah life is slowly getting back to normal ish. I go once a month to see the small ginger man. was hoping it was going to be every 3 months but some results not quite the right side of the fence so still monthly at the minute. And every morning like Alice I chase the white rabbit down the hole and take the one pill that makes me feel smaller.

[cupboard77]

Cancer is boring

I know I know probably not a sentence you hear often but at this minute it feels right to point this out.

I know I'm very lucky with the cancer I have. Chronic myeloid leukemia is in many ways a controllable cancer there is about 4 or 5 different pills that i can try before my situation becomes a bit more dire. At the minute I am still on my first pill and if it does its job it will control the cancer and I will just take the pill for the rest of my life if it doesn't take we move onto the next pill and try again and so on and so until they run out of pills and start talking bone marrow transplant or planning funerals.

One of my best friends has just been diaganosed with cancer. I will not go into details as not my place to say but his battle looks a lot harder and scarier than mine and it makes me feel like a cancer fraud that so far I get off so lightly while he will possibly go through hell.

I have slowly started going back to work and worked 10 hours last week. It wrecked me and I was slightly crest fallen after to see just how far away I am from being my normal self but I have a few hours this week and will hopefully do slightly better this time and slowly but surely get back to almost normal (don't think iv ever been completely normal. Just ask the people I work with)

The side effects come and go, some worse than others and the fatigue seems to be not to be budging and this is where the boring comes in. My days have seem to have plateaued off. I walk the dog twice a day and I make my self breakfast and dinner for me and my hard working wife much more than that and I need to sleep. If the wife has a day off its a lot easier to just cuddle up and binge watch something than to have her worry that if we do something it will be too much for me and it will hurt me(I can do stuff but that tiredness will kick in at some point).

So my days can be quite boring

My ginger haired consultant is quite happy with me so far so does not have to see me every week now, it's been a month this time and if he's happy it might move to every 3 months he has to see me. I just go to the infirmary and get blood work done then go see the consultant then go pick up my chemotherapy pills and that's it there is no talk of cutting anything out or that. Basically I have cancer and always will.

So my therapy and treatment is boring

Don't get me wrong nobody said boring is bad just sometimes it's... well... boring.

Luckily now and again as anybody that has me on fb knows I can create my own excitement with snake escapes and early morning dog walking police action. Maybe when I get back to work full time I won't feel so lifeless but we will see.

I am sure in a way I am lucky it is boring I am lucky there is no radiotherapy and my chemo is just in pill form. I am lucky that there is no talk of cutting me open to remove tumours. I am lucky that I have a wife that loves me so much that's she's scared she will break me if we go shopping (women's clothes shopping probably would break me as it would most guys).

So yeah I can say my cancer is boring and maybe I should just be grateful that it is.

[cupboard77]

Getting stronger

I have just finished putting away my shopping and I'm so happy. Now this may not sound like much of a Saturday morning achievement but if you read my other blog you would know that two weeks ago my sister took me shopping and it almost killed me, last week my sister took me again and I did a lot better. I yawned and had no energy by time we got to car but I survived.

This week I thought I'm going to go it alone with out my sis as my safety net, I picked the morning because that's when I'm at my best as the day wears on I slowly get worse. I drove to tesco and slowly but surely did my weekly shop. A couple of times the vision doubled and a couple of times I had to stop to get my breath but no brain fog and no collapsing.

This feels like a huge achievement to me but I'm not stupid I know I'll prob be wiped out by 3 this afternoon and will have to go to bed but fuck it it's a start.

More good news was my white blood cell count has come down perfectly according to the consultant (not the small ginger cancer giver but a woman this time. I think they might be doing a good cop bad cop routine on me but not sure) but unfortunately my red blood cell count also came down which is bad, so the pills they gave me to help my enlarged spleen worked so well that they have become detrimental to my health so they have been stopped and in 2 weeks I will get retested.

This also means instead of 6 pills a day I am only on 2.my cancer pill and one for gout that's my cancer pill can cause.

I keep getting hints of side effects. A bit of nausea and burning legs (it was horrible). But just now I feel OK. Just the fatigue that creeps up. I walk Jericho my dog twice a day and I make my own lunch and dinner. Small steps for man but giant leaps for Richie. I have a date in mind for starting back to work but we will see( I first thought naively that I'd only be off two weeks... That was a month ago ( I'm not stupid I know not every day will be good and I can feel my energy going as I write this but I am definitely getting off the mat after being floored by my diagnosis and I am starting to fight back. We might be only in round two. But at least I made it out of the first.

A last note I was thinking of starting a raise up for Richie campaign. Where people can pay money and women will raise their tops for a quick flash! I personally think it's a great campaign for a great cause (me) and pretty sure it would be a money spinner but not quite sure I have enough energy for that just yet!!!

[cupboard77]

Fatigue sets in

I never really knew what tiredness was until I got leukemia....That's not exactly true because for about the last 6 months all I do on my days off is sleep. I sometimes only get up to walk the dog and even then I force myself to get up. Now I realise that this was probably a symptom of my cancer and now its worse.

Have you ever had a cut on your finger and it doesn't hurt until you notice it then that little cut hurts like a bitch? Well that seems to me what finding out you have cancer is like. My body now feels like some one. ( I'm not blaming anyone but kinda looking at the small ginger man from my other blogs) has said to me "OK you now have cancer and just let me flip this switch here". Because my body now knows it has an illness it hurts. It hurts a lot. I tire so damn easy sometimes I just want to cry. My sister took me shopping today and by the time I reached the household aisles I probably would of struggled counting to ten in fact I'd have been hard pushed to spell it, I was so damn tired that I had brain fog and couldn't think straight it was all I could do not to fall on the toilet rolls and go to sleep. Just for a bit just until I felt I could count like I could in primary 1 again.

I think my sister was close go just tipping me into the trolley and wheeling me away. But I hung on in there like Ali on the ropes against foreman and slowly the fog cleared not much but just enough to get shopping finished and back in car then the pain came in the shoulder and the side and strangely my leg. This has to do I think with my enlarged spleen pressing against things as it works overtime and it hurts like a sod and it took a few controlled breaths for that to pass. I got home I put the shopping away ( brain fog was back and I couldn't work out how to push the red bull to the back of the cupboard). After a short break of my sis and me watching ironically celebrity bake off re run which was for stand up to cancer (stand up to cancer?? At that minute I couldn't stand up to take a piss), (every ad and program I watch just now has cancer in it its like when people gave up cigs and every advert or that had cigs in it) I took Jerry out for his walk came home and went to bed for an hour. This was literally 3 hrs I'd been on my feet just doing a shop and walking a dog and I was wrecked for rest of afternoon. Its frustrating it's annoying it's stupid it's part of my life with cancer just now.

They call it fatigue they say I will become fatigued. One of the symptoms of my cancer is fatigue and strangely one of the side effects of my drug is fatigue I'm doubly fatigued!! I don't think that's a thing I think it's just fatigue (single). And I don't like it.

I hope it goes away or at least calms the fuck down. Im a chef I need to be able to do more than open the fridge door before I tire for god's sake. I need not to have brain fog if I am counting rolls at work. I need to get better...

I never knew what tired was until now

[cupboard77]

The bone marrow supremacy

After finding out I had leukemia I then found out I needed to get my bone marrow tested and one of my biggest fears was about to Come true

You see for some reason which I am guessing is that iv seen in a movie or read about when younger I have always been scared of the bone marrow tests, I had heard they were one of the sorest things you can have done as they have to get into your bone to take out the juicy marrow goodness so this was something I never wanted and now I needed it.

I arrived at haematology and was met by a very enthusiastic nurse "your first time at hematology!" she exclaimed "my first leukemia" I replied with just the same amount of excitement tinged with manic fear.

The consultant (the small ginger man who gave me cancer or at least the diagnosis) asked if I minded if a medical student sat in and as I was expecting the whole department to hear my screams I said why the hell not.

So myself, the consultant, the over enthusiastic nurse and a twenty year old girl all piled into a tiny room, there was only one bed and seeing as how I had the cancer I took it.

Soon I was facing the wall my knees pulled up to my chest in the foetal position which seemed as good as any to me. The bed was raised to the right height for the consultant which was unfortunately the wrong height for the nurse who was now face to face with half my ass. As she talked I could feel her breath against my anus. Which luckily she probably couldn't see as I had everything clenched tight..

As I faced the wall waiting my fate. The consultant asked the student if this was her first time watching one of these and if she felt faint to just leave... I was going to ask if I felt faint could I leave but as I was already lying down I was guessing I was stuck here.

First alcohol wipes were swabbed over my lower spine which felt nice the the local anaesthetic was introduced via needle which wasn't so nice. Once my back was numb the fun begun I could feel some pressure and some pushing then the small ginger man put his hand on my hip and said words I never want to hear again " you might hear a crunch". With this he ground the needle forward into my bone. I heard it I felt it it was horrible I gasped I sweated buckets and everything that was clenched got clenched harder soon though it wasn't so bad and the pain as he took the marrow wasn't nearly as bad as the crunch. The true indignanty was the world's smallest plaster over the hole!

I had survived one of my biggest fears and now just waited for test results....

[cupboard77]

This is my first cancer

My name is Richard and this is my first cancer.. a weird start but it got your attention. A background on me I am 41 married from Scotland and a chef Now the chef bit is important because chefs in my experience have the blackest gallows humour. So let's jump right in forgive my lack of punctuation English was not my strong point and iv never done this blog thingy before but we will try, so I found out I had leukemia the other day Now this was a lot to take in and I'm guessing less than a week later it has still not sunk in but so far I know I'm lucky with the type I have and I know there are people far worse off than me but this is my story so I want to apologise for any times I make it feel like woe is me and all that I am sure there will be plenty of days that I will feel sorry for myself but I also know my ability to end up in ridiculous situation as do my family and friends thus this blog was born and I don't know yet where it will go or even if I'll keep it up but you never know .. I mean I do have a lot of time on my hands just now.

So on Thursday I went to casualty with a sore shoulder and side and by Friday 8am I had leukemia and was scared shitless of what I'd have by 2pm!

But by 2pm I still only had leukaemia so I guess I was lucky but this is getting ahead of myself let's go back to 8am.

I was lying on a hospital bed feeling not too sore and enjoying the oxygen that was been blown up my nostrils by a tube when the registrar and a nurse swung the curtain shut round me

"Mr wardrop you do not have a kidney infection you have leukaemia thought you should know "and with a flurry of swishing the curtain was ripped back and they left.

It was like the curtain in oz was pulled back I could see the inner workings of the magic of life and I didn't like what I could see. Several thoughts went through my head most not good but a clarity came over me and my mind went fuck it and I went back to reading my kindle on my phone.

Now I know what your thinking no way you took that news like that but its true how else could I take it I wasn't even hundred percent sure I knew what leukaemia was I mean I was pretty sure it was a cancer but also pretty sure only little bald kids got it.

At 10am I was surrounded by 6 or 7 people. Male, female and the registrar from earlier who in a case of don't shoot the messenger I'd taken a dislike to and really wanted to shoot.

My belly was pushed and prodded with knowing nods being exchanged around the room then my jeans were pulled down and my groin was pushed and prodded (I think finding out you have cancer is like cold water and I probably was not doing much for white males in the penis stakes) after my groin had been well massaged I was told to swing legs off bed and sit up then was promptly poked and prodded around my throat, at this point I had to point out that I knew where those hands has just been and also thinking back they were ungloved which said a lot for the Dr's confidence in my self hygiene. Thus this lead to much laughter from the medical team and slightly more pressure on my neck by the Dr with the groin fingers.

After the prodding there was a lot of nods and shrugs and fancy words used before every one departed except a small ginger haired man and his very lovely assistant almost a Paul Daniels and Debbie magee situation before we all realised Debbie was a little bat shit crazy.

The small ginger man turned out to be the hematology consultant who took a seat next to me and explained in a lovely lilting voice that I did indeed have a condition called Cml or chronic myeloid leukemia but there was good news. He was 80 percent sure It could be controlled with pills. Now I have never wanted leukemia it hadn't really been on any of my Christmas lists to santa when I was younger but damn did I really want this one,it was explained by am ll ginger man that my type could be controlled by a pill and I could lead an almost normal life with a normal life expectancy (which so far this Friday morning had taken years off ) so I was handed an idiots guide to leukemia which was apt because I really felt like I needed some sort of introduction to cancer type book ( I mean no point reading return of the king if you have not first read the fellowship of the ring and the two towers)and left again to my own devices.

And so that's that my first 2 hours of knowing I had a type of cancer but what's the chances I'd have the type that I can still work with(very high because that's just my luck).