Hairy Cell Leukaemia my Treatment experience

In a previous post, I stated that my treatment would be 5 days of chemotherapy, specifically daily injections of the Cladribine.  Three out of five days, this was the case… but we took a detour in between treatments three and four.  Many of my family and close friends will be already aware of my journey to an extent, as I did update with some details on Facebook, and of course I had my “support groups” on WhatsApp for instant communication and support (we, er.. mainly stayed on topic…. lots of laughs).

My intention for the week was to work from home, go for treatment, chill (depending on how I felt), then crack on with work.  If at any time, like the previous couple of weeks working from home, I felt tired as result of the condition / treatment, just ping work a message and take a break.  The plan was also to eat up to 5 meals a day to top up the weight (MrsQ has turned into a feeder…..).  We planned to choose recipes from the Royal Marsden Hospital Cancer cookbook I’d received from my work colleagues.

Treatment Day 1 – Monday 24th July 2017

With treatment scheduled for 2pm in Enfield Chase, it was pretty much a usual “working from home” morning.  Not knowing really what to expect I was a bit nervous.  We went to the clinic, met the nurse, Mark who would be treating me, had a chat. Then, he administered the injections.. into my belly.  This was something I’d kind of overlooked.  The documentation on the drug did say it could be given as injection under the skin (subcutaneous injection), and I’d seen on the Bloodwise charity, someone had posted about their relative having bruising in the belly.  Belly it was.  I was up and out after 2 mins of receiving the injections and we were on our way home.  Being day 1, I decided to take timeout and lie down, so cued up a playlist:-

  • Miles Davis “In a Silent Way”
  • Miles Davis “Live Evil Disk 1”

After this, got on with normal for the rest of the day, monitoring temperature as requested by the doctors, remember, the trigger to haul ass to A&E being 38 degrees.  Rest of evening pretty uneventful.

Treatment Day 2 – Tuesday 25th July 2017

Again, an afternoon appointment at Enfield Chase, I was old hand at this now, turned up, got injections went home.  Playlist for day 2 was:-

  • Rachmaninoff Symphonic Dances
  • Janacek Taurus Bulba

Stirring stuff … after this, I just got back on with normal work from home day as I had been doing in the morning… apart from “obs” checks… all good.

Treatment Day 3 – Wednesday 26th July 2017

Treatment was early on Day 3 closer to midday.  Like yesterday, uneventful just got on with it.  Playlist for Day 3 was:-

  • Pat Metheny Group “Still Life (Talking)”

Short rest today, and no real side effects to report regarding taking this medication.  Cracked on with work and chilled for the evening.  Yes, continued with the “obs” checks…. all good.

Today’s treatment put me over the half way mark.  6 injections out of 10….. we were on the home stretch.  I also discovered that the nurse, Mark, administering my treatment at Enfield was a fellow cyclist, so we chatted a bit about that.  He and some of his colleagues had recently rode a 75 mile charity cycle (which I later sponsored) to raise funds for the Chase Farm Charity.  Just stop and think about that for a minute, here is a guy who works around the clock, subject to NHS pay and conditions,  works in a stressful environment,  in his spare time, undertakes training to participate in fundraising events so his place of work has up to date equipment!!!  How far would you ride a bike to raise money for your place of work to have equipment? I have so much respect for these people.

Treatment Day 4 – Thursday 27th July 2017

Today, I had a 9:30am appointment at Barnet hospital for an ultrasound on my nodes (not nodejs, sorry geek joke) in my neck as they had shown up in my PET/CT scan.  The doctors were determining whether I may need a biopsy of these also.  Fortunately for me, they were only a couple of percent above normal, and they decided that biopsy was not worth the risk.  I had checked what this involved and thought to myself that I’d escaped a painful one (little did I know what was to come), so we went home, stopping of in Whetstone in the Oak Cafe for a rather tasty Eggs Benedict & Latte.   After this, we went home, I fired up the PC and started to do catch up with some work.  Around midday, I felt a bit woozy so took a temp.. in the 37degree zone so I took a break and had a rest.  Temp kind of stayed here for the next couple of hours right up until it was time to go to clinic to receive day 4 chemo shots.   When we go to the clinic, the staff were all different so they were busy familiarising with equipment / procedures and patients etc.  When it was my turn to be seen, probably around 3pm I think, I mentioned to the nurse that my temp was running a bit high but not above the 38 degree threshold just before leaving the house.  The nurse took my temperature, 38.5 degrees.  I didn’t feel “bad”, I was still up and about, but this it turns out is a critical signal if you are on this medication with this condition, so if you are reading this as a newly diagnosed patient or friend or relative of a patient, take heed!  Temp>=38.0 haul ass to A&E ASAP!!

The nurse asked a few more questions, escalated the issue to a doctor over phone.  The decision was made, I was to be transferred to Barnet for further treatment and observation.  I’d picked up a bug.  We’d driven over so we offered to take care of ourselves, but no, it had to be ambulance transfer direct to A&E for me to be treated ASAP, I was probably going to be admitted to Barnet for a night.  We agreed that MrsQ would pop home in car and pick some things up for me.  We live on good bus route from home to close to Barnet hospital so it was no drama.  I waited patiently for the paramedics to turn up, which was shortly after 4pm I’d say, they’d just come on shift.  Not sure what they were expecting but were a bit surprised when I strolled over to them saying “Hi, I’m your transfer…” We left the clinic, down to the ambulance for checks there, personal details, next of kin, more medical checks etc.  The irony, the route to Barnet was reverse route of one of my cycling training routes… and here I was in back of ambulance, chatting to the paramedics.  We arrived at Barnet hospital A&E and I was brought in.  After about 10 minutes or so, I was taken through to the Adult Assessment Unit and handed over to the medical staff there.  The paramedics were off on their way, no doubt hoping all cases today would be as straightforward.

I was interviewed again, the usual, name rank serial number…. to ensure I was who I said I was.  I was told I would be admitted and a bed was being organised.  I was then brought through to examination room by junior doctor (I kept telling myself, they are not very young, I’m just 15 – 20 years older!)  I would also undergo a series of tests, bloods, urine, general stethoscope listen, ECG and x-ray.  Are you allergic to penicillin? they asked, “not that I know of I replied” (which wasn’t good enough as a no).  So I said, No, I don’t remember having any reaction to any particular antibiotics in the past.  I now know I’m NOT allergic to penicillin, so will get that right next time, marks in the bag.  “What medication are you on?” they asked, me, dopha… phila… amaxa… er… it’s in my notes….check them (another question I was asked frequently).  A cannula was fitted to my left arm and shortly after, was wired up to IV antibiotics, my right arm was to become blood test central.  I sat patiently in waiting room, with my drip, enduring Eastenders on the TV above my head.  MrsQ had come back by this time.  I was seen again by senior doctor to go over all details again.  More blood was taken this time to match for transfusion if that was required.  Again, I was told, a bed was being organised, I would be admitted and I’d require further doses of IV antibiotic.  We went back to waiting area and watched TV, until I was called to go for my x-Ray.  I could have easily walked, but I was wheeled around there in a chair.  The guy doing the x-ray was rather cheery (might be using the x-ray machine for recreational use.. hmmmm 🙂 ) got that done and dusted and was wheeled back to waiting area.  We eventually asked was it OK to go for food, yes, sure we were told.  Of course, by now the cafe and shop had shut, so it was vending machine to get some as healthy as possible snacks.  Doctors returned to report nothing obvious in the multitude of tests, they suspected chest but couldn’t hear anything, if still same next day, they’d do a “scan”, not sure what type.  It was pushing 10:15pm so I asked MrsQ to head on home as on public transport it was getting a bit late.  I was fine, in the best place I could be, given circumstances.

Where was my bed?  Turns out it wasn’t as straight forward as that.  If you’ve ever been in a house buying chain, you can only move when the person at the other end of the chain moves.  My requirement was further complicated in that I needed a private room due to risk of infection (no, people didn’t visit me in full on outbreak suits, just extra precautions).  Also, when a room was found, it had to be deep cleaned.  I sat in the waiting room, watching TV (who do you think you are, followed by a rather depressing documentary on Gun Crime in the US, I despair!)  For good luck (not really) I had one further set of bloods taken.  The nurse said the bed was being prepared, I sat patiently waiting.  Another staff sister did find some food for me at around 11:30pm, I’d have my bed shortly.  Now, I suspect most people reading this would get rather impatient waiting.  My take on it is, I have specific requirements, it isn’t that straightforward, and who do I complain to? the nurse who’s going to treat me if I take a funny turn? Of course not.

Day 4 ended, no more chemo, we had a bug to find and fix.

Treatment Day 5 – Friday 28th July 2017

Day 5 started as Day 4 finished, sat in waiting room, patiently waiting for bed.  By 00:30 bed was ready, I was taken upstairs to the Medical Short Stay Unit where my bed was ready room 42 (answer to the meaning of life, the universe, and everything…. a good omen).  Again, much to the surprise of the night staff, I strolled in, “Hi, I’m your patient…”, I got the impression by their reaction that patients are wheeled in in beds, trolleys or chairs.  After signing some property forms, I got ready for bed, I was told I would first have more IV antibiotics (are you allergic to penicillin….) and 2 units of blood transfused. I said wha?  I’d previously been instructed to take note of any changes in conditions, rashes and notify medical staff immediately.  Of course, I’d notice some hives on my legs getting changed for bed, so when the nurse came at around 01:30 to administer antibiotics I had to tell her, and the process was temporarily aborted while the doctor was consulted.  About 10 minutes later the doctor arrived (they are not young, I’m 15-20 years older, that’s a clip board under his arm, not a skateboard….) and said, hmm, yes they are hives, are you allergic to penicillin? They decided they were just hives, and to proceed with IV antibiotic.  This takes about 30 mins to drip into system.  As soon as that was over, it was blood transfusion time.

At about 02:15 the nurse and staff sister came to fix me up with blood transfusion.  The nurse was from Netherlands I think, the Staff Sister, obviously more senior was from Eastern Europe and had excellent English, but a strong accent (remember this).  The Sister said “I have come to give you your blood…” which is enough to make me think “Bond villain or bride of Dracula”, never mind when being slightly delirious, scared and extremely tired, but add the accent, comedy gold.  I asked a few questions about what I’m looking out for, what should I experience, side effects, and can you confirm this is irradiated blood (very important, Hulk like side effects I suspect, they don’t want people wrecking the place, I must have asked that question about 100 times).  Basically, I needed to know when to trigger the “call nurse” button.  “Oh, this is your first time?” replied Sister.  More terror in my head! She explained what to “feel out” for (you can’t watch out for effects of IV blood transfusion).  Sister reassured me that in her 30 years experience, never any issues, I had nothing to worry about (that accent… wasn’t helping…) Tightness in chest, I picked up on, others I didn’t quite catch… but the blood line was connected via the pump, it was switch on.. blood goes in.  This process would take 3 hours, I would have observation tests after 15 mins (temperature and blood pressure) then increase to 30 minutes.  Usually, if anything untoward happens, it is in the first 15 mins.  I lay there, delirious, terrified, knackered,  but desperately trying to scan all systems for abnormal behaviour.  The human mind is a bonkers, wonderful thing.  You get what you wish for…. I’d heard “tightness in chest” so at about 03:30 I must have fallen asleep and woke up suddenly (that innate jump awake thing we all experience… or a hypnagogic jerk as it is known).  Anyway, in my head IT’S A HEART ATTACK … push the orange button NURSE.  Nurse came in, checked the pump, drip asked me what was issue, I said “tightness in chest”, ok, we’ll get doctor’s recommendation. Things settled down, I had another set of observations, my temp was running high, but they were two thirds way through, we would continue but with more frequent observations.  Shortly after, the ECG machine was wheeled into the room on doctors orders after my reported chest issue.

An ECG machine is basically a dot matrix printer (kids, ask your parents) that prints out your heart trace, and pulse from various points on your body on graph paper (kids, ask your parents).  The sensors for the ECG are on the end of a spaghetti tangle of cables joined together by some controller unit.  The nurse attempted to stick the sensor attachments to the various parts of my body, legs, arms and round my chest.  I have a hairy chest, I was lying in a pool of my own sweat, these were not sticking.   The cables were joined to the ones that did stick, the nurse had to hold down the others using some bizarre variation of hand twister while cajoling the machine to take a reading.  You tend to only hear dot matrix printers in offices nowadays when they are used to print pay slips on carbonated (kids, ask your parents, possibly grandparents…) pay slip envelopes.  This cheered me up a bit as it was payday.  After the ECG, Sister came in to check on things.  The ward I was in contained a few elderly patients who become confused.  Sister reassured me by saying “Don’t worry about the other patients, they are confused, we are not hurting them”… you guessed it, the accent, definitely Bond Villain this time :).  I actually received no word on the ECG test until I asked… answer, “Doctor says carry on, all normal…”. Phew!…

Time passed, blood went in, I was disconnected I could rest.  Except I couldn’t, it was morning, time for meds, another IV antibiotics. By 8am observations, temp was back in 36 degree zone for some time, and I felt much better, so things were looking up. Breakfast, 2 wheetabix (only my nephew Will Power can eat 3!!), coffee… ordered my lunch / dinner and had some back and forth to the support group on WhatsApp, giving updates.

Doctors rounds time, where senior doctor and junior doctor come around, grill you with questions, check you over etc. The thinking then was to wait on the second unit of blood until the recently taken blood for testing gave the haematologists indications of changes.  I would also be moved to another ward at Barnet, specialising in blood cancer treatment.  Doctors hunt in pairs, a senior and a junior, the senior does all the talking, the junior takes the notes, responds to questions from senior (think Dr Cox / JD in Scrubs… but a bit more serious).   I was then visited by a Senior/Junior pair of haematologists, who gave their diagnosis, would wait for test results but continue with IV antibiotics for now.  I would be moved to another ward (this was a bit like, we have a bed for you)… I guess it was same story, needed private room in the other ward, these things take time.  I had no plans.  Temps were in normal range for most of the day, but then started to raise. MrsQ visited and brought some more supplies and a smoothie to supplement my diet.  I was then rigged up to the drip again, second unit of blood being transfused.  Far less traumatic, no imaginary heart attacks this time.  By 6pm my room was available so I was wheeled over to my new spot, my drip pump stopped, line closed and me holding my bag of blood (or what remained to be transfused).  This room, again private (or side rooms as they refer them to as), not en-suite but all facilities within 10 steps of the door.  After uneventful transfusion, I settled down to rest as best I could.

Treatment Day 6 – Saturday 29th July 2017

Pillow hair..

I was woken up by the nurse at 01:00, time for observations and IV antibiotics.  I wasn’t too worried as this was a 30 minute drip then I could sleep.  It was much quieter on this ward.  Next thing I know, it’s 6am, observations, more IV antibiotics.  When this is done, I get up to stretch my legs.  I took the picture to reassure folks I was fine…. hmmm. I was then told that I would have two further units of blood transfused.  I thought, OK, I’ve been through this should be fine.  The first, unit 3 was administered early afternoon after I’d seen doctors etc.  I then had some very welcome visitors to see me.  On Sunday 30th my father in law Julian and brother in law Tom were scheduled to ride in the Ride London 100 mile ride.  I didn’t win a ballot place this year so wasn’t riding, but had offered to feed them up on the night before, ensuring they were fully fuelled for the ride.  Of course, when they arrived at my room, I wasn’t there, I’d nipped to the bathroom. I’m not sure what kind of commotion this caused, but it was a bit amusing, my father in law immediately set off in search of me.

All spruced up..

I came back to my room, seeing my mother in law sat outside, hello, I said, eventually they all popped around, we had a chat for 20 minutes or so, talking tactics for the ride (and the dreadful traffic and the dreadful train journey… HELLO TRAUMATIC BLOOD TRANSFUSIONS!! CANCER!!…. I WIN… 🙂  of course I love’em to bits.. but perspective is funny…  ).  They went off anyway to have a meal at restaurant in Whetstone (jammy feckers) while I continued transfusing.  This was unit 4.  The last hour of this turned out to be tough.  My temps went up, and during the night even after IV antibiotics my temp was high.  Not good.

Treatment Day 7 – Sunday 30th July 2017

Having Tom & Julian ride in the Ride London was a welcome distraction today.  Their progress could be tracked on the an App provided so I felt like I was in “Race Control, Barnet Hospital”.  However, I woke up in a pool of my own sweat (hospital beds have, understandably, non-absorbent mattresses..) at 6am to more observations and IV antibiotics. I really needed time to move quicker so I could get showered and bed changed. However, things move to a timetable, and unknown to me at 07:15 I was scheduled a blood test so a needle in the arm at that time will wake you up.  However, the news was better. My temps were in normal range for the last few hours, I was feeling good, despite the night I’d been through.  When the pair of doctors visited (another different pair) we went through the usual tests and all was positive.  Quite simply, if my temps remained “normal” for 48 hours I could resume chemotherapy (from day 4, so 2 more days).  I felt good most of the day.

I had been communicating with my parents by text on WhatsApp but felt I needed to be a bit more “stern” just to clear the air.  People are very well meaning, but they like to tell a story (yes, I understand the irony writing this).  Basically I had to say that anecdotes from others should be treated as that.  No treatment programs will be exactly the same, no conditions are the same, no two individuals are the same, there are too many variables to compare my treatment and illness with someone else.  I was being treated as I was told, I was on this alternative path with chemotherapy halted as I was told could happen.  It was tough. I know people mean well, but there is always scope for exaggeration (apart from my story here of course…) when the story teller has an audience.  I know, shortly after I receive a big hug from my Mum when I next see her, followed by a swift exit while she reaches for the Irish Mammy’s weapon of choice, “the wooden spoon”.

Following progress of the guys and other friends on the Ride London as I said was welcome distraction. I also had TV in this room (but no remote control?? supposed I could have downloaded an app) so ticked over for the rest of the day.  MrsQ turned up for daily visit with smoothie which was good.

Later that evening I started to fade again, and temps rose. booo….

Treatment Day 8 – Monday 31st July 2017

Again, after 1am IV antibiotic I still had fever during the night.  By 6am observations and IV antibiotics I was back in normal range.  The clock was set again for 48hrs in the good zone.  What was becoming routine now, breakfast, shower fresh hospital PJ’s periodic observations, doctors visit, we were playing waiting game.  My WhatsApp support group kept me entertained, and I also organised for my folks to have a video call which was rather amusing from my side, as they both knock heads competing to have their face in focus (turn the phone to landscape…..!!!!).  I know it reassured them to “see me speak live” and update them on my treatment.

Both MrsQ and my buddy Dale visited Monday afternoon. We had a good natter going through what I’d experienced and what the outlook was for next steps, how close was I to parole.  I suspected I was close as I hadn’t felt as good for a few days, however, this fever appeared to be a bit cyclic so I’d have to make it overnight and well into Tuesday.  Unfortunately, again, this wasn’t to be the case, as things crept up again in early hours of Tuesday, but only for a short period.

Treatment Day 9 – Tuesday 1st August 2017

Tuesday Morning usual routine.  However, temps gain had been in the good range from early morning.  Today would be monitoring and usual IV antibiotic treatment.  I was well enough to watch a few TED Talks (gotta keep those CPD scores up) and do an online training course (gotta keep those software development skills sharp).  A pretty uneventful day, a blood test, the delight of MrsQ’s visits.   As my temps were “normal”, the frequency of observations was increased, I took this as a good sign.

By 8pm observations things were looking good. As I described on Facebook, my temperature and other observations had been in the “Goldilocks Zone” since early morning.  The doctors were starting to talk in more concrete terms about going home, resuming chemotherapy etc, but first some more blood tests to see vital counts.

Treatment Day 10 – Wednesday 2nd August 2017

Usual morning routine, observations, IV antibiotics etc… the doctors visit to say blood tests from yesterday mean I require 2 more units of blood, but as I’d passed the 48hr threshold for being in the good range, I could resume chemotherapy. The feeling of elation when you are told you can resume chemotherapy is a bit bizarre.  We’ve sorted out the illness that was stopping you having treatment for the illness you originally were diagnosed with.  You are now strong enough for you to be pummelled again with chemo drugs.  A nurse came to the door waving saying “Hello, do you remember me? how are you, how is your wife?” me, er.. are you from across.  By now I’d met 10’s of staff some when in silly states. Turns out it was the Nurse who treated me on Day 4 in Enfield, she was here to administer my chemotherapy.  At about 1pm nurse came and administered my chemotherapy shots (more from the stabby school of injecting needles.. I guess all have their different styles).  I couldn’t have been happier at that moment.  My blood had been ordered (is it irradiated, I asked?) unit 5 arrived, was setup for transfusion. 2.5 hour drip this time. Departure was imminent, as soon as unit 5 done, they were lining up unit 6, which when finished I could go. But first, a long whazz.. (not sure if this is side effect, or just that during my stay I’d been putting away at least 2 litres of water a day!).   Unit 6 was setup, the pump was on, MrsQ was informed (was out of town on gig, but would arrive just in time to bring me home).  8:30pm was the target time.  I was given all my medications and instructions, my discharge papers, so I was ready to go when the drip was empty.  I have additional antibiotics to take in tablet form for next few days in addition to my daily medication but other than that all good.

MrsQ arrives, drip finishes, I get detached, get dressed, say bye to staff, and walk out.

Treatment Day 11 – Thursday 3rd August 2017

We are back in Enfield Clinic for my 5th round of chemotherapy.  The last day.  Nurse Mark glanced me a knowing look, “feeling better?” me, yes , much better thank you.  Busy, had to wait a bit, didn’t care.  My turn came, 2 shots done.

I have finished chemotherapy.

I can’t thank the all NHS staff that in some way had involvement in my treatment.  From the nurses, doctors, lab researchers, orderlies, catering staff everyone.  Thank you, thank you, thank you.

I can’t thank all those people who donate blood enough either.  I ended up requiring 6 units of blood.  While being transfused unit 4, MrsQ was in the room.  She received a text message from the blood donating service to say that her recent donation had been issued for use at Northwick Park Hospital.  Every donation counts, to find out more visit the NHS blood donation website.

To anyone reading this in curiosity about your own treatment or treatment for a friend or relative, the official term for the “fever” I was suffering from is Neutropenic sepsis. I would suggest you read up and prepare as soon as your temperature hits 38 degrees.  This is quite serious.  With no immune system reacting as it should, none of the usual illness signals are present, you could be much more ill than you look or feel. Do not delay getting to a doctor or A&E.

What next?

It’s on with recovery for me now, daily medication, weekly blood test to check progress and monthly consultation.  Fingers crossed I’ll have a smooth ride from here.  I can’t thank my friends and family especially MrsQ enough for looking after me at this time.  The messages of support and encouragement we’ve received have given us both the strength to fight these hairy cells.  Each day as it comes… we (well I) stoically march on fighting!

Love and hugs, namaste my friends.

Worrying does not take away tomorrow’s troubles. It takes away today’s peace.

Buddha

P.S.

After proof reading this and correcting a few minor issues, reading back it looks quite dramatic and traumatic.   I guess, as a first time experience, given the circumstances it did very much feel that way in my head.  In reality, I had a series of non-surgical, non invasive tests.  Had a canula in left arm and probably, 14 – 18 injections for taking blood in my right arm, and 10 chemotherapy injections in my belly (I’ve just written that and said that in the Austin Powers fat bloke accent..).  Others are not so lucky.  In terms of cost, nothing but additional parking.  Perspective is everything!