...And We're Back In The Room

Well, I'm back and focussed again.  After the shock of the previous news, especially when my consultant had said there were plenty of back up plans, things are settling.  I will not lose to this thing.  It is not an option.  

Feeling a bit crappy today and yesterday.  Had a couple of monster temperatures which drifted down throughout the day.  Trouble is it leaves you feeling really weak and rubbish.  I can't hear properly out of either of my ears.  The right one is sworse and just sounds like the sea, whereas the left one makes my voice sound likes its emanating from the middle of my head.  Don't know if it is the cold I had taking longer to clear than I thought or the stupid lymphoma trying to add to my list of annoyances.  It's a real pain in the bum.  Anyone who speaks to me, gets me saying what, pardon, eh several times and anyone I talk to, I boom at.  I can make my ears click by holding my nose and blowing but it hasn't yet popped back to normal (oh, please let it do that soon).

Big thanks and hugs out to everyone who has been sending me information and messages of support.  Some people have asked for the full details of what I have, well, it is called:

Non-Hodgkins Lymphoma - Large B Cell Defuse primary mediastinal (THYMUS)

Kind of rolls of the tongue really!

The news so far:  Tomorrow I will be going to Reading hospital to be measured up for some radiotheraphy which hopefully will shrink the sucked down.  I've been told it could shrink from 0 to 80%, but at the least it should be held.  Then there is sthe possibility of seeing another consultant for some RF ablation to kill off the new nasties that have moved into my organs without invite or contract.  Hopefully that will reset the clock back a bit.

New Chemo Regime and Meeting Radman

The mood and message seems to change each time I see my consultant.  Once again the mood is positive and the message is that the stem cell transplant option has not gone away.  If this chemo regime can get a reduction in the nasty stink beast (my affectionate name for it) then they will jump into high strength chemo, utilising these drugs that have worked.  Sounds like a plan.  Also, this chemo is given as an outpatient, only takes about an hour to do and also is meant to be easier to tolerate.  So far, sounds a winner! 

So, I went in with my entourage.  My wife was with me and my sister from Ibiza had come over too.  So it was pretty cool.  

On arrival, we were told another consultant had come over from Reading and wanted to have a chat.  Hey, the more people looking at my case (sounds like a detective story, "yeah chief, I'm all over the case") the better in my book.  We went in to see him and after a bit of wrangling around with chairs and stealing an extra one, he asked for some history.  I reeled off the story from diagnosis to present day.  He explained that he was a clinical oncologist, which meant that he liked to blast people with radiation, whilst giggling like a mad scientist (okay, that last bit may be my embellishment).  So he wanted to talk to me about how a brief bit of radiotherapy could be used after this chemo regime.  Basically, if the chemo worked, then it could help shrink the tumour some more and if it didn't work then it could give it a push back, whilst a new plan is being put together.  He answered all our questions, was a pretty nice seeming guy and we came out happy.

I got given the chemo and left to go home.  Felt a bit sick going to the car but that calmed down once I was sat down.  I got home though and felt rubbish and went for a lie down.  When the ladies came to check on me my temperature was spiking well high.  I should have rung the hospital but they would have brought me into A&E and filled me with anti-biotics and not let me out for several days, so instead we gave a it an hour and checked if it changed.  It dropped gradually back to acceptable levels and I was a pleased chicken.

I'm writing this from bed right now.  My sister has nipped to church and my wife and son have nipped into town and I have a bit of a temperature going on again.  Probably come down again by now though.  Stupid freaky temperature!

Just so you know, the new drugs are: Gemcitibine and another whose name I didn't remember but it is a synthetic version of vincristine.  I'll mention it when I find out.

No sleep till Brooklyn!

Well, chemo has slowly dragged on.  It hasn't made me feel bad particularly.  I've been tired and not wanted to leap tall buildings in a single bound but the previous CHOP chemo made me feel worse.  The rub here is that you are wired up 24/7.  There are 4 lots of a drug called Cisplatin that you get for 96 hours, accompanied by loads of fluids (as it is a bit of a nasty sucker to your insides if let loose on its own).  Now, the annoying thing about constantly getting fluids fed in, as I've gone on about before is that they start to bloat you out unless you can get rid of them.   They give you some drugs to help get rid of them, but it's an ongoing drudge.  Anyway, the 96 hours is getting near to an end and my grumpy mood (obviously noticeable as my wife has bought me a Mr. Grumpy t-shirt.  Thanks love).  Also, both a plus and a minus are the large steroid doses used on this chemo.  Plus side, I've always responded well, so yay there.  Downside, if they are given late they can stop you sleeping.  Mine were given late, as the infusions were going on so long (on and on and on...!  You can tell I'm not the most patient person in the world).  So, first night, no sleep, just mad thoughts that wouldn't go away.  You think of one thing and go off on a tangent and then another and then another, until you pull back and think "I WANT TO GO TO SLEEP!" and then a thought about sleep, e.g. a film that had sleep in the title comes to mind and away you go again.  Thankfully, I seem to have adapted and was able to sleep okay last could of nights, apart from the regular wakings up to pee in bottles (all urine out has to be measured and compared to fluid in, to make sure it's not welcome to bloats-ville).

That's fluids aside, ooh, lovely fluids.  Or so you'd think!  That brings me to blood.  Apparently my red count was getting low, which would help explain why I was getting tireder.  Now, I really appreciate people who give blood (and I'm glad I got over my cowardice and did myself, before getting ill), as I have now been a recipient (sorry to upset any Jehovah's Witnesses that may have stumbled onto this page, but blood transfusions are the least you've got problems with!  Wow! That was a bit harsh.  A brief aside.  Whilst at home, between treatments two 60+ year old JWs came round to convert me, after hearing their arguments I gave counter arguments to their claims and they were not very happy that I did not just gleefully accept their rather "intriguing" version of the way of the universe.  Have a look at their beliefs, I was amused.  Perhaps I'm over stepping the mark now and should get back to business).  Anyway, I was told I would need a new little cannula poking into my hand as my other 2 lines were busy.  Joy!  A new hole and a hand I can't use properly.  They said as soon as the blood is in we'll take the cannula out.  Cool!  I thought, so that's not so bad.  

"How, long to put the blood in?", I asked.

"About 2 hours, 4 at max"

Blimey, I thought to myself, that's a fair while.  My thoughts were interrupted though...

"Per pack and we're giving you 3"

Lordy!  Upto 12 hours to shove some blood in!  And it ended up taking longer.  Man, this blog is turning into my personal rant zone.  I'm sure earlier posts were all happy and positive and talking about flowers and trees and other crap.  Rah!  Mr.  Grumpy is in town!

An Illegal Glimpse Over The Fence

We did it!  We mounted an escape bid.  Well, my wife did really.  She is very clever and very cunning (and may also be reading), did I also  mention beautiful and talented too?  :)

They (she and the kids) arrived after lunch today and we told reception we were going for a walk and could be some time.  

Backtracking a bit.  I woke up this morning and was feeling fine!  My arm was looking more like it belonged to me and less to Hellboy.  In fact it looked almost normal (almost, but still a bit squidgy).

I had managed to get through 24 hours without a temperature spike and at a time when I was most fearing having one (one of the lads who is a nurse here has just passed his blood taking test and is eager to let blood.  If my temperature spikes they want a blood sample from my line and my arm too and I didn't fancy him having a good old root around, scratching his head, looking like a dog who was sure it had buried its bone here but then again maybe over there... near the tree (dig), hmmm, howabout next to the fence (dig)).  No.  Didn't want that.

Jumping in time again.  My wife arrived looking lovely (you still reading dear?) and we shot off in the car.  The perfect crime.  The original plan was  to go for a walk round the park, but as the most walking I had done was to the toilet and (mostly) back, we decided to drop in on the in-laws, let the kids play in the garden whilst we had a sit in the sun (me very in the shade).  It was really nice.  I had forgotten how great sunshine was.  My artificially lit room, with only a glimpse through the bars on my windows (okay, slight exaggeration) to the beauty that is freedom.

Yesterday, the doctor had said that if my temperature stays in check and my blood counts keep climbing then they would probably be able to convince the ward uber-fuhrer to sign my release papers.  I was silently hopeful.

Anyway, after a lovely afternoon with my witty, intelligent wife (just checking you're still reading, dear) and the kids, it was time to return.  Rather than drop me off, they came back in and stayed for a bit (until Harry became painful with his constant demands for chocolate and yet another drink).

A little while later a couple of other friends, Gary and Kelly came to visit, which was great as I hadn't seen them for a while.  Sadly, whilst they were here, a sign went up on my door.  I had been marked.  I don't know if it was punishment for leaving the defensive perimeter, but it looks like it may damage my case for release tomorrow.  Basically, after my neutraphil count has jumped up and down over the last few days, today it is 0.5, which is officially neutrapenic and also meant that I should not have left the ward.  Oops, I didn't know.  Open the communications channels here people!  Anyway, all is okay.  I got given my "night time drink" (I opted for hot chocolate, as it is usually the one they can do the least damage to).  I studied said drink and still fail to understand how basic hot chocolate can be made to look and taste so bad.  An enigma scientists will no doubt be debating long after we are all gone.

Anyway, I'll let you know if I manage to will my neutraphils back up tonight and use my get out of hosipal card.  If not, then roll on next "night time drink", perhaps I'll give Horlicks another chance.

Waltzing on the Ambassador's Lawn

I'm still incarcerated in the Wexham Hospital of correction without being charged.

Remember Zebedee from the Magic Roundabout, many years ago?  He was like a spring with a head on and used to boing around everywhere?  Well, my temperature has decided to become just like him.  One minute nice and low, the next it flies up to the highest heights (accompanied by the sound of Kenny Rogers and that woman whose name I can't remember singing some song about something being lifted up where it belongs.  If that makes any sense to you, you're doing better than me).  Now, Mr. Holmes, where it gets even weirder, is that sometimes, when the temp is high I feel ragged and just want to sleep and maybe grunt occasionally and other times I feel footloose and fancy free, desiring nothing less than to waltz, Viennese style (is there such a thing?) across the ambassadors lawn (okay, slight exaggeration, I feel okay and am content sitting up, reading, typing on the laptop and not just wanting to doze.)

Not a lot happening otherwise.  I either lie here, wanting to go home or lie here wanting to go to sleep. 

Almost forgot.  I received a couple of units of blood in a transfusion (sorry if that loses me any Jehovah's witness readers, of which I am guessing there are a fairly vast number).  No one had warning me and when I saw the nurse approaching with a bag of blood I was strangely freaked out.  Apparently, my red blood count had been slowly dipping and they wanted to raise it up.  It seemed to help and made me reconsider my move to not join that marauding vampire gang back in '96.

Well, I think that was one of my most bizarre posts to date.  Not sure what is going on with my brain today, but thought I'd share its outbursts with you, gentle reader.

Until next time...

Achtung! Escape is impossible Englander!

Not so Fritz!  

I'm out!

On Friday, just gone, I was released from hospital on weekend leave, I guess that is like parole.  I was visited by my friend Steve, his girlfriend and their little baby Jack, who I hadn't seen yet.  Being a bloke I just thought, hey, he's my mates baby, cool.  My wife on the otherhand went all gooey!  

"A baby, baby!", she exclaimed.  She then used any excuse or trick to remove said baby from either parents grasp and into her own.  Cooing and ahhing at baby Jack all the time (until he cried, at which point he was handed back).

Basically took it easy on the weekend.  Got looked after and spoilt by my wife, who bought me little treats (yay! go treats!).  

On Sunday evening, I was dropped off at the in-laws, where I would be staying a few days, rather than be sat at home on my own.  

Monday I had to go back into hospital, to have blood taken, get the dressing on my line changed (it had started leaking some blood back and looked horrible) and hopefully to have a CT scan to try to determine what was going on with my arm (and for the docs to have some more pictures to play with.  They like pictures).  

The hospital system really sucks when it comes to getting scans etc done.  It is all done on paper and is a bit random.  They give you a provisional day when you will be done and say they will contact you when they need you and then you hear nothing.  Basically, if the consultant has a more important one to do (in their opinion) then they just bump you down the list.  The best way around that is to make sure that your consultant is harrassing them.  The squeaky wheel definitely gets the grease.  Better still, if your consultant is their mate, then that can prove a winner.  One of my doctors seems to have a bit of power over the CT scan consultant (either she has some dodgy pictures of him or he is just besotted with her), as she seems to be able to make CT scans happen pretty quick.  I was sat in my room, bloods had been done, was expecting a few hours wait when a funny little man with an unusual greasy comb over arrived with a wheel chair.  His name badge identified him as Keith (name changed to protect me from retribution from the greasy haired hospital porters union.  A powerful entity, you don't want to mess with).  He collected my notes and I hobbled into the wheel chair (they don't let you walk, but in my case right then, I was happy to be wheeled).  He zoomed me to the CT scan waiting area (here I am redefining "zoomed" to mean trundle at a very slow speed, with pauses for coughing and regaining of breath).

The CT scan waiting area was a breath of fresh air.  Actually it is pretty rank.  I think the walls were last painted their jolly nicotine yellow many years ago.  Also waiting were 2 other people in wheel chairs.  One who looked like they may have slipped away whilst they were waiting.  They were sat with their head lolling.  Later snores revealed they had somehow managed to fall asleep in such a position.  The wheel chairee next to me either was sniffing or sobbing, but they were so close that I didn't want to turn and look.  

Time passed and wheelie 1 and 2 were taken in and after a few minutes came back out, waiting for their miscellaneous porter to come and return them whence they had came.  This meant it was my turn.

I was wheeled in, then asked to climb onto the bed that feeds through the big doughnut that is the CT scanner.  Sadly the line in my arm was no good for use with the machines automatic dye injector, as "the pressure can cause them to explode" (reassuring!).  This meant that I had to have a new canula put in.  I informed the scanner man, who I knew to be the consultant, that I was pretty short of good veins.  He smiled and said that he is good at putting in canulas and not to worry.  After a few minutes hmmm-ing and arrrr-ing, he agreed that I didn't have many decent veins left.  He suggested trying one on my hand, informing me it'd probably hurt.  He asked like I had a choice, but before giving my consent (or not), he had produced a big old canula needle thing and was jabbing away.  After a few jabs, he had a canula in, but the vein bulged up behind it and it was no good, so that had to go.  He apologised profusely and said he normally gets it first time (I'm getting used to hearing that).  Second time was a charm.  It hurt but it worked.  I was left with a nice spurting of blood up my arm, but that just made me feel manly, so was okay (!!).  Consultant man commented that I was very cheery and upbeat.  How could I be anything else, when I was getting holes jabbed into me?  

The rest of the day ticked on.  They came and changed my arm dressing and then time passed and then my doctor came in.  She told me that the tumour had shrunk very very slightly, but they don't normally measure at this stage.  The fact that it is not getting bigger is good but not to worry about shrinkage at this point.  The scan also didn't show any reason why my arm was still swollen.  Scotland yard were still baffled.  She then said that they will take my line out (hooray) and let me go home properly (until Friday).  After more waiting, my line was taken out.  A process I was a bit nervous about, but which took seconds and was pain free (nice change).  I have to report back on friday, to have a different type of line put in (Hickman line).  This cheeky sucker goes in the chest, which sounds a lot more attractive.  Then, assuming all goes to plan, it is my last cycle of RICE.  

So, I've got a few days of normality (kind of), until once more summoned unto the realm of the physician.

Not happy :(

I'm back to work, but not feeling that good. My stomach has still been giving me grief and I've been getting this weird double vision type thing going on after I wake up (continuing until it kind of sorts itself out).

I thought I'd be pretty chilled regarding my first scan, but little things keep happening that are freaking me out a bit. Yesterday my right arm seemed to be swelling up a bit. This was what happened on my left arm and was caused by the blood clot. I neither want another clot or for the swelling to be due to growing lymphoma. No sir!
Its a bit tender and it seems to be a bit swollen around the forearm only. I'll keep an eye on it.

My previous upbeat (at least I think it was pretty upbeat) mood is starting to fade. I'm getting fed up now and just want to feel well. Hit a bit of a low.

Go for blood and nearly get locked away

Well, I've just got back from the hospital and it was touch and go whether they were going to let me out again. I went in for a blood test and a cheeky CT scan of my sinuses (as part of the ongoing investigation into why I keep getting a temperature and getting ill). Had those, but my stomach has not fully recovered since leaving hospital last time. It's generally grumbly and not being very polite and after I eat it has the audacity to hurt. Most un-british like of it. So, I thought, as I was there and as I felt a bit under the weather anyway, I'd pop in and see the doc and see if they had any amazing ideas. They didn't but as my temperature was 37.7 they were umming and arring about incarcerating me again.
"I've served my time, damn it! ", I protested.
"Guards! Take him down", was almost the reply. Instead, they checked some more results and as nothing was untoward, they let me go with a caution.

Oh yeah, the blood test. It only took two goes this time, but it was the lord high supervisor doing it, who is normally top of the pops and gets blood quick and with prowess. I guess my leather veins are a force to be reckoned with. Hopefully, I will leave a legend behind me, which trainee blood letters can be scared with by their supervisors.

Blood clots actually suck

Now the relief of the Lymphoma not regrowing has subsided a tad, the realisation of having a stupid blood clot has dawned. I went to see the anti-coagulation team at Wexham Park hospital yesterday and they explained the treatment plan. It kind of sucks.
I am currently receiving daily injections of Fragmin, which is a drug which slows down the rate at which my blood clots. The treatment for the blood clot is either: a) daily injections for 6 months (yes, 6 months!) with accompanying monthly blood tests OR b) daily Warfarin tablets (yes, that's rat poison, but it also slows blood clotting) for 6 months with weekly blood tests.
There won't be any further scans or checks to see if the clot has gone, just keep on going for 6 months. Seemed a bit crazy to me. I'll be having some scans anyway as part of the cancer treatment. Surely, if they show the clot has gone, what is the benefit of continuing the treatment? Or at least, why keep going so long. I'll be talking to my consultant about it on Friday.

I must admin, part of the reason is that when on Warfarin/Fragmin you are warned to stay away from alcohol. If I am given the cancer all clear, I don't want anything in the way when it comes to celebration time!

Blood clots rock!

I've got a blood clot in my neck and tonight I celebrate!
No, I'm not completely insane (I have a certificate that says so). If you've been following the blog, it will make sense, if not, then recently I was told that one of two things had happened. Either: My Lymphoma had stopped responding to treatment (bad, very bad) or I have a blood clot (not great, but better than option one). I had a CT scan today. I got to the hospital in Ascot and couldn't find anywhere to park. I was driving round for 30 minutes trying to park and then had to take a chance and wedge my car on some double yellows and hope I got lucky as my scan appointment was getting real close. I ran/hobbled/wobbled to the reception area, filled out a form (you always have to fill out a form of some kind) and within minutes was called in. I got to wear one of the backwards hospital gowns, but only needed to take my top off. I went in, laid down on the magical sliding table, got a needle stuck in my hand (they always have to stick a needle in at some point in hospital). I was pulled in and out of the machine a couple of times and then released back into the wild. Then I got to play the waiting game. Luckily my car was unclamped, which I took as a positive portent of good news (hey, I was clinging onto anything positive looking). I got home, my fence was nearly done and I shot off to get a late late late lunch. Part way through I got a call from my consultant buddy (he's now my buddy, as he gave me good news. I'm pretty fickle).
He said, "...the scan showed two things..."
At this point I held my breath and my mind completed his sentence for him with "1. the Lymphoma has grown and 2. you're a goner!", (not really helping brain!)
He continued, "Firstly, the Lymphoma has reduced in size to 7cm by 2.7cm and secondly, a blood clot is visible in your neck". Okay, so he didn't say it exactly like that. Once I had the first point, I dived in to ask how his alotment was going. Hey, blood clot news can wait!
Anyway, I am a happy boy. Yes, I have a blood clot, but the alternative was not even slightly welcome. Perhaps that is standard hospital policy, when there is some bad news, e.g. a blood clot, perhaps they scare you with a possible worse alternative first, so you're happy with the news! A concept from NLP known as reframing in fact. Even though I know the concept, it still works!

Sat in the sun

Hi. It's a lovely day here. The sun is shining and I'm sitting outside (in the shade, as I burn like a petrol soaked rag right now). I thought rather than type a load of stuff, I'd post up a vid instead. I must admit when I played it back, I scared myself with my double chin. Where did that come from? I never had one of those before! I blame the steroids again (poor old steroids, get quite a rap from me).

Chemo #3

Chemo #3 went down okay. It took a lot less time than before. The Rituximab took 2 hours to go in and the actual chemo was about an hour and a half. Unfortunately, it was really busy at the day unit, so I didn't get to see my usual consultant and had to see a stand in doctor. I went through to see him but he had his face glued to my notes and other than the few words he spoke when he made brief eye contact he spent the rest of the time mainly scribling away in silence. Kind of rubbish. He asked a few bland questions, misanswered a few of mine (i.e. gave me answers that I had to query until he answered them properly or I gave up), also he seemed to have had a major, successful, personality bypass operation. He made me think of a very dull version of John Major!

(a pic of John oozing his usual charismatic presence)

I had to nick name this consultant character, Doctor Charisma. This name got back to my normal consultant who was suitably amused. We then had a quick chat about some discoveries regarding statins and Rituximab (don't ask, I'm just interested in all the technicalities and new discoveries) and then I was good to go home.

During my time there, I spoke to a couple of other fellow Lymphoma friday participants and eaves dropped on another. The main thing was that I was a lot better off that some of the others there. One guy, a 37 year old bloke, had Lymphoma in his bone marrow and pretty much everywhere, another was recently diagnosed, with a delay of several weeks due to a bit of a botch up by an ENT consultant and had Lymphoma in his abdomen, neck and all over. Not nice.

I confirmation from Doc Charisma, that the nodes in my neck are now gone (oh yes! Be seeing you, losers!) and that the discharge notes from my time at Hotel Torbay (the Torbay hospital I ended up in over easter), confirmed that my chest mass had shrunk from 10cm to 5cm, which has me a very happy chappie.

Dr. C did not mention my scan at the end of cycle 3 and I forgot to ask (my head was a bit buzzy with pre-meds though), so I've emailled my normal consultant "The Moule-meister" (he is called Dr. Moule and is very good) and hopefully he can cofirm the details.

People are great!

People are great! I have been receiving loads of well wishing from people I din't really know, via my other blog on bet trading (http://bettrading100to100000.blogspot.com) and today I got a message from a friend who I used to work with a year ago. he said that the guys at the company I used to work at had heard about my condition (my wife had been sending round email updates of the story so far) and they had had a collection and bought me a Nintendo DS to keep me entertained whilst going through chemo etc. What a cool gesture. You guys rock! I was really touched. They popped round today and we had a good catch up and I took possession of my new toy. Yay! See, cancer is good for something!
Anyway, I woke up this morning, feeling pretty good again. Obviously, I don't feel like normal, but pretty good considering. I took my last dose of steroids, so tomorrow morning may be the test of energy levels moving forward until the next steroid pulse.
I've noticed some stinging from the lymph nodes on my neck, where the unwanted house guests are living (eviction time boys!), which I'm treating as a good sign. The nodes feel a bit softer, but that could be my imagination. The cough that had been bugging me so much is gone appart from a few light weight normal coughs occasionally, so that's pretty good.

As a brief aside, I have been taking a few supplements that I did some research on and discussed with my consultant, who gave it the okay. I don't know if these may be part of the reason for my current "easy ride" but I'll mention them anyway.
Basically, I'm taking coenzyme Q10's, with the intention of protecting my heart against some of the doxorubicin effects and it is also a powerful anti-oxidant and energy giver to normal cells.
I'm also taking a maintenance dose of Beta Glucan, with the hope that the macrophages it should be stirring up can go to work munching on those dying Lymphoma B-cells. I'm going to move the dose up when I get my next chemo session, as I'll then be getting Rituximab and I have read a fair amount about Beta Glucan enhancing the cancer killing effect of it. My consultant seems pretty happy with what I'm doing and has only mention a couple of supplements to avoid, so I'm happy.

The Beginning

So, cancer sucks, as I'm sure you're aware. I just never thought I'd have to deal with it, at least not for a long time.

So, here's the story. Around Christmas (2007), I had a cold and it turned into a sinus infection. Nothing too unusual there, but I noticed that the glands in my neck were up. Again, nothing big, but after a week or so they were still up, so I checked on google, I wondered if they might be involved with draining the sinuses or something. I freaked myself out, as the word cancer kept showing up, during my searches. Ok, that's not so bad, but when I checked the conditions that tended to imply cancer, it was when the lymph nodes were: hard and unmoveable, which mine were.
I went to see my doctor and he had a check. He ummed and arred a bit and said they felt suspicious but not to panic as I had just had an infection and the nodes could be hard to move due to their position, etc. I felt a bit better but still a part of me was nervous. I was given some anti-biotics to deal with the sinus infection and told to pop back in a couple of weeks if the nodes were still not down. My heart rate was also quite high (although I was rather anxious), so my doc arranged a thyroid check, just to make sure.
The sinuses cleared up but no sooner had they got better than I started to get a crazy cough. This was a cough like no other cough I had had. My ribs ached and were bruised and sleeping was difficult. The cough was uncontrollable and at night I could see bright white halos around my vision when I coughed. I checked back into my doctors surgery to get my blood taken for the thyroid check and as my normal doctor was away went to see one of the others about my cough. They checked the lymph nodes, checked my chest and said it was just a virus and not to worry about it. I felt a bit relieved but still not sure. The cough hung on and got worse, sometimes to the point on making me sick through coughing so hard. I went back to see my original doctor to get the blood test results, which were all okay but he wanted to refer me to an ENT specialist to check out the lymph nodes.
I checked my works medical insurance, through good old Axa PPP and got a quick appointment. I turned up and got proded, palpated, x-rayed, x-rayed again, ultra-sounded and then a tissue sample taken. I turned up back in the consultants office and he told me it looked very likely that I had Lymphoma.
This wasn't a complete surprise, as I had got a list in my mind of what the problem could be. It ranged from nothing, to something exotic I had picked up whilst out the country, to a nasty cancer to lymphoma. My hopes were on it being nothing special, but I would take Lymphoma in preference to some of the other nasty options I had dug up. He told me that they had seen a mass in my chest, which was causing the coughing and the nodes in my neck. He said they need to do a CT scan to see if it had spread any further.
Another consultation was lined up, as was a CT scan and a biopsy. From 0 to 100 mph in no seconds flat. I had just crossed over from the land of the healthy to the land of the ill, with little or no warning. The transition is smooth.
I had the CT scan on monday (consulatation was on friday), the biopsy on tuesday and by the following tuesday I was in the consultants office again for the results. He said it was definitely Lymphoma but they didn't yet know if it was Hodgkins or Non Hodgkins and had some more staining and testing to do with the biopsy tissue, but the good news was that they could only find any nasty stuff in the neck and chest.
I was then handed directly over to the consultant hemotolgist who specialised in Lymphoma and we sat down in his office to go through next steps.
Rolling back a bit, I forgot to mention, after that first meeting when I was told Lymphoma was the most likely option, I rang my wife and told her and she was in complete shock. She had been berating me for considering I had Lymphoma or anything else and insisted that I was letting my imagination go wild, but I like to consider all options and then eliminate them, knowing that I'm not going to get a nasty surprise. I guess it worked this time, although it involved me being a pain in the ass for a while doing self diagnosis!
Anyway, back to the story. We were sat in his office and he showed me the CT scan and there was this huge mass (10cm) sat in my chest. My previous consultant had said the chest mass had been "unsubtle", now I know what unsubtle means! They put me on some steroids to relieve the symptoms I was getting. Over the last few days, I had started to get swelling in my face, that won me the nickname "Mr Inflated Head" with my wife and friends. I was also having difficulty sleeping, unless I propped myself up vertically. Otherwise, I'd wake up with a nasty gurgling noise in my throat and chest.
So, I was pleased to get the steroids and I was lined up to have a bone marrow sample taken and then it was chemo time. I was a bit knocked sideways. A few days ago, I was wondering what was going on with some lymph nodes, now I was getting ready for chemo, something that had always scared me stupid.