Chapter 25 - The light at the end of the tunnel

I know we have been talking about the proverbial light at the end of the equally proverbial tunnel for ages now - probably as far back as completing Stage 1 of the chemo. But now I really do feel as though I can see it properly. I am loathe to be too optimistic because each day brings new challenges, but with little chemo to go and the prospect of being sent home (almost) indefinitely once it's finished, I can't help but feel a bit like a climber who has the peak in sight at last and is secretly unfurling his flag...

My old mate, Horace.

What happened to the hallucinations?
I wasn't, as most readers will be aware, looking forward to this round of chemo - last time I had R-IVAC, the Ifofsamide part of it gave me the dreaded hallucinations, nightmares, cognitive impairment and a general malaise which is difficult to describe in any but the most derogatory terms. To play it down a bit I even found this lovely cartoon in The Oldie (below) which summed up the funny side of it if nothing else.

But - and he says this whilst hastily looking around for a piece of real wood to touch - so far so good without any real side effects except putting on 4kg of fluid (rapidly addressed in the form of a strong diuretic which has worn the shoe leather between my bed and the loo) and a slight fuddle-headed feeling of restlessness. Or is the latter just because I don't have anything more serious to concern myself with just at the moment?

The working week
My working week really started on Monday when, rather homesick and full of trepidation as to what the final treatment might bring, I returned for my outpatients appointment with the Prof, after which I was readmitted, with platelets boasting a heady count of 79! More than enough to get started apparently. The first night back in after being home for so long was not much fun at all. Too noisy, impersonal and hot by far.

Tuesday, and Docs' rounds, brought more optimism - with a reduced final dosage of 80% strength, in defference to my reluctant platelet count - Dr Davies seemed quite confident that I should be allowed home after this treatment on Saturday, for at least a couple of days. My last intrathecal is due for next Tuesday 3rd Feb (but will my platelet count allow?).

My chemo started at 1.30pm and the first day was pretty full on - basically a full programme of drips from Horace until well into Wednesday morning, to be repeated over the next 24 hours, but with the intention to pull back the starting time by two hours each day so that Saturday home time becomes a reality. A much better night's sleep on Tuesday, homesickness not so bad, very quiet night nurses (thank you Christina, for a blissfully quiet drip change!). And no real side effects, so a bonus.

I watched in horror as a near neighbour had a bad reaction (as many do) to the Rituximab antibody which is the precursor to some chemo regimens; I had a similar reaction the first time but his was much more violent with shakes and acute breathlessness; but the staff soon had it, and him, under control and all was well.

Wednesday and Thursday passed fairly well, notwithstanding my impatience to be done with this stuff for good. By Thursday afternoon, I was suffering from exercise withdrawal so walked some 3,000 steps to the end of the hospital and back again four times, plus four flights of stairs. I am determined not to slip too far back in re-attaining some level of fitness which has been progressing so well at home. Boring scenery compared with the wide open fields, but it'll have to do until I can get some more of the real thing.

TGIF
Friday - and more Docs' rounds and more good news: providing I continue to progress as well as I am doing, Friday night might hopefully be the last night in hospital! I will have to come back in for my bloods, PICC line dressing and intrathecal on Tuesday but then, hopefully and infection free (PLEASE!) it should be a case of supplying bloods at RHCH every 48 hours to monitor my status. Wahay! (he says rather quietly to himself in case it doesn't happen like that).

It's been threatening to snow in Hampshire but so far our county seems to be the only place in the country to have escaped it. Which is good news as Lizzie is planing on making a surprise visit on Friday afternoon from Devon! What a lovely treat for Sally that will be. And for me too!

Went for another walk round the hospital this morning - and what a beautiful morning it was too! Even Soton General looked tantalisingly pleasant in the sun.

And it keeps on coming
More stuff to fit in now - my haemoglobin levels are a bit low so am going to have to squeeze a blood transfusion or two in between chemo - this shouldn't change anything as the nurses (who know me by now) are on the case and planning it all to the minute. In fact they have nagged the duty doctor into doing my discharge letter and have arranged my take home meds already - a day early!! They are sweeties...or I must have a reputation for nagging.

Safety in numbers
To make up for it, I am being plied with  huge number of tablets, pills and potions: I counted 12 in the morning (anti-sickness, anti-fungal, antibiotic, anti-everything), a couple of horse-pill size jobs (chewable magnesium, dispersible potassium), plus eye-watering eye drops to prevent conjunctivitis - common with this chemo. Then another lot at lunchtime, tea time, and bed time. I am rattling.

In addition, I have to promise to drink 3 litres of fluid on Saturday after my chemo - because they will kindly send me home with Mesna tablets (to protect my bladder from the chemo) instead of lengthy i/v stuff, but it's imperative that it is washed down with plenty of water, or there can be trouble.

Rebecca, Mike, Pauline, Paul, Julia, Jan, Tim and Helena (Jacob took the pic) 

Curtain Call
Sadly the timing was lousy this week for my intention to attend the Curtain Call Awards at the Grand de Vere Hotel, with my fellow thesps from Cheriton and the chance to catch up with some of my wider circle of thespian friends too. so I had to make do with a photo of them toasting me (which I reciprocated), whist I soaked up a freshly squeezed plastic glass of orange squash and a bag of blood.

Great celebrations as young Charlie Hellard won his award for Best Supporting Actor in a Comedy but it's next year for Rebecca and me, I fear!

Cheers, m'dears... (honestly, there's no gin it it)

Chapter 24 - The waiting is over

Trying out the new walking boots - very comfy!

It's now over a month since I went home for four days at Christmas and since then I have become de-institutionalised, if there is such a process. In other words, in the same way as I became institutionalised into hospital life for the three three months before Christmas, four weeks of restful recuperation, peace, quiet, exercise, good food and the company of my family has brought normality and increasingly good health back into my life.

Sunny skies and soggy walks - great for the soul.

On the way up...
But all the time, the shadow of my unfinished business at Southampton General has been lurking over my shoulder: several visits to the Prof's outpatients clinic and the odd blood letting at RHCH with follow-up phone calls to the Lymphoma nurses have seen my poor old depleted platelets gradually rise from 20, to 22, to 24 and then a giant leap to 51 and onward to 79. The magic figure to restart the (final round of) chemo is 75, so the latest visit to outpatients has ended in readmission onto the familiar D3 where I was greeted by hugs and high fives; what a lovely lot these people are. What a shame I associate them with being ill.

There's something satisfying about logging!

My four weeks at home have not been wasted. I am convinced that I have recovered more quickly in the comfort of my own home than I ever could have done here in hospital; I have walked two to three miles a day, done odd jobs around the house (including my ambition, to chain saw and split a load of firewood), caught up with a lot of recorded TV programmes, eaten like a lord and slept like a baby. Yes, I've had a cold - but who hasn't this winter?

...and then back down
So coming back into hospital where, in less than two hours I have had my blood pressure, SATS and temperature taken twice, my neighbours have had copious noisy visitors and I have been forced to listen to Eastenders and smell the hospital food close-up, would have been a real shock to the system if I wasn't steeling myself to slip back into the routine.

Timing could have been better - this week I shall miss the first read-through of Third Week in August, the summer outdoor production at Cheriton, and on Friday I shall have to forego the chance to go to the Curtain Call Awards (*ahem* - did I mention that I was nominated for a gong?).

And then there's the treatment itself: this is the R-IVAC regime, the hallucinatory, weird, nightmare-inducing gaga juice. Not to mention its nausea-making quality and the effect it has on my immune system, including those precious platelets I have been nurturing and incubating for the past month. The upside is that the Prof has decided to give me an 80% dosage this time, in the interests of a speedier recovery afterwards. The other upside is that it's the LAST CYCLE.

My girls (well, three of them): L to R Piggy, Rosie, Sally

Winter drawers on
The weather over the past month of January has been, for the most part, pretty good - cold but sunny, necessitating several layers of warm clothing, scarves, hats and gloves outdoors and roaring log fires and hot water bottles indoors. Today, before my return to Southampton, I took Rosie for a long walk and admired the snowdrops and catkins which are heralding the spring; but the forecast for Wednesday onward is for sleet and snow - the tail end of the storm which is currently affecting the east coast of North America.

Although this is unlikely to affect me in this hothouse it might just prevent Sally getting to me later in the week so I am hoping for her sake - and Lizzie's and Zoe's too, both of whom have to drive some distances for work - that we don't get hit too badly. I only have enough undies to last a week.

The fundraiser goes from strength to strength
The way the donations to the Lymphoma Association fundraiser has kept on coming is nothing short of staggering. The last few days have seen some £1,400 + Gift Aid added to the pot - from the combined efforts of the staff, friends and customers at the Flower Pots, our local. The total to date is now £7,820 - with Gift Aid it's over £9k! Thank you, all those who helped to raise this extraordinary sum and spread the word; wouldn't it be great to get to £10k, double the original target?

So, here we go on the last rollercoaster ride... roll on three weeks' time.

A reminder that spring is nearly here!

Chapter 23 - The Waiting Game

Two things I have learnt since this whole business started: firstly that nothing goes according to plan and secondly don't make any. Plans, that is.

A favourite walk around Petersfield Heath lake

It is now three weeks since Christmas Eve and the start of my four day exeat. Since then I have been readmitted to hospital only once, spent two nights on the ward, had the first (antibody) part of my final round of chemo and been sent home again because of low platelet count (20-30). I have been back to the hospital twice since then, each time as an outpatient, and had my bloods taken three or four times but still the platelets fail to grow in number. For more info on low platelets, have a look at this on the internet.

There are obviously enough to stop me from bruising, bleeding and so on but at the latest count there were 24 (don't forget I started off with over 450) which is really only a quarter of the amount required to restart the chemo. The consequence of administering more chemo with a platelet count this low could be fatal: chemo knocks out the platelets (as well as the red and white blood cells) and if they were to give me the last round now I would, in all likelihood, end up with no immune system whatsoever - permanently - leading to a catastrophic bleed or infection and probably death. So it's a no-brainer really, as far as that is concerned.

Can anything be done?
Not really, except wait for the body to recover. The bone marrow biopsy I had taken before Christmas showed that the bone marrow is producing blood cells - but very slowly. That's good news - it means the bone marrow is working and is likely to recover, albeit slowly, over the coming days/weeks.

So why the delay in recovery? Well, a quick look at my platelets graph which sadly I cannot show you here, says it all - I started with 450+ before the first treatment, which dropped to single figures after the first treatment and recovered, but to nowhere near the original count before the second treatment blasted it again and this was when I experienced that awful chronic nosebleed. Again, the count recovered but only to about 80-100 before being hit yet again almost straightaway. This time the recovery has been, understandably, reluctant and very slow. The other reason is that I am not a young man anymore.

My general level of health is, however, good - since being at home I have been walking every day - sometimes approaching three miles. I have been eating well (I'm now back up to 77kg, a full 6kg heavier than after my last round of treatment) and sleeping comfortably and getting a full eight hours. My deafness is still with me but at least I can hear in one ear.

My stamina is ok but I get a bit puffed going uphill - not surprising as my red blood count is only in the 80s rather than the 120s so I am only getting two thirds of the oxygen I should be getting - but again this will gradually increase.

A look on Google tells you that as well as exercise and sleep, you should avoid alcohol and caffeine, eat plenty of fresh veg and fruit, eat oily fish and Omega3-rich foods and get plenty of Vitamin C. My medical team didn't exactly poo-poo this but their opinion is that, whilst these rules are commendable, following them to the letter will not automatically encourage platelet recovery - this will happen when it's ready and in its own good time.

So what's the cunning plan?
More home time and slow recovery - during which I am getting stronger - more bloods and review in a week's time and wait patiently.

I have to say that, as the treatment is in four parts, when I was told that there is a strong chance that they may give me a reduced dose of the final one - or even not give it at all - this filled me with paranoid dread that the Lymphoma would automatically come back. I would not only be back to square one but back in the box - since chemo would be out of the question, it would appear as though I would be between a rock an hard place.

I find it difficult to keep up but I'm getting there!

But I am assured that (notwithstanding the fact that no-one will guarantee it) the three very intensive treatments I have already had will have already done the job they were meant to do, i.e. kill off the cancer. The final one is a sort of 'belt and braces' job to make sure there is nothing left behind.

So on one hand, as I slowly recover from what I've already had and start to shave again (it's been over seven weeks since a razor touched my chin), my stamina and general health improves and I start to enjoy 'normality' I'm not too upset by the thought of not having to go through the last treatment - which is the hallucinatory one too - but on the other hand I really want to make sure I properly cured before I resume normal life. Burkitt's is, after all, the fastest growing cancer around and you don't get a lot of warning.

The motto continues to be: take each day as it comes. So that's what I'm doing, and although I can't plan anything - like will I be able to go to the Curtain Call Awards on the 30th? Or go away at half term in mid-Feb? - I am extremely grateful I am playing the waiting game at home in comfort rather than a hospital bed, surrounded by other ill blokes. I am keeping myself busy, avoiding daytime TV at all costs (let's face it, that particular disease is incurable) and trying to be as normal as possible without overdoing it.

It could be a lot worse...

Chapter 22 - The Oxymoron

One minute I was back on D3 awaiting my last bout of chemo - date 29th December. Aim: to be home by about 22nd January or thereabouts. The next minute I was back home - well not exactly the next minute: I was in hospital from Sunday night, had the R of my R-IVAC chemo on Monday (this is the antibody which flags up the tumour cells for the chemo to attack so is not strictly chemo in itself) expecting to start the chemo proper on Tuesday. All that changed with the Prof's rounds when he declared my platelets far too low (13 and they should be over 100), and ordered a bone marrow biopsy and a pool of platelets to be followed by home leave until the following Monday 5th.

Platelets: get in - and stay in!

It's curious, this platelet business; although it is part of the body's immune system it seems to work independently of the other cells so, although my red cell count is so a little bit on the low side, my neutraphils, the White Crusaders, are well up where they should be which is good to know.

On my way home - again...

Bitter-sweet
Hence the oxymoron: going home for a few more days is definitely bitter-sweet. Sweet beyond measure that Sally, who was going to have a rather lonely week's holiday (schools go back the week after) will not be on her own after all, and sweet that I can carry on stuffing myself with good home cooking, sleep in my own bed, continue exercising in the form of walks and do odd jobs. But bitter inasmuch as I want to just get on and get this last round done and dusted so I can get on with my life.

The Cunning Plan
To stay at home until Monday afternoon, have bloods taken at Alresford Surgery on Friday, attend the Prof's outpatients clinic on Monday and bring my overnight bag in readiness for readmission. We all should know by now that plans never run on track! The 'early morning' blood test happened at 12.45pm and was not even due to be picked up until 3pm, so any chance of my medical team in Southampton receiving a result on Friday was zilch. So having heard nothing from the hospital over the weekend I assumed that here was nothing life-threatening to stop Sally and I enjoying another weekend together.

At home with my gals.

Extended home leave has been wonderful - building up the walking distance gradually (did a 2.5 mile walk on Sunday), eating well, enjoying one another's company and sleeping through the New Year's celebrations entirely, something I haven't done for many a year. My sister Sue casually reminded me of the time I rang her to wish her a Happy New Year at the very start of 1972; she had a four month old baby, the next day was still a working one in those days and she was not best pleased at being woken up. The casual reminder was not, thankfully a veiled threat to return the favour some 40 years later; to be honest I was so tired I would probably have slept through anyway.

Much time spent in front of this, including New Years Eve.

We have done 'normal things' - bought a new pair of walking boots in the sales (now there's a challenge!) - visited Manor Farm at Bursledon for a walk in the woods, bought crumpets for tea and munched them in front of the fire, caught up on a few TV programmes. As a complete aside, for some reason my wifi connection at the hospital no longer allows me to watch any catch-up TV, YouTube, iPlayer etc - not even live radio. Obviously some new blocking system has been introduced to deter users from wasting their time. An interesting pount, however, is that they allow Vimeo (the alternative YouTube) and facebook, twitter etc. A curious way to ban things.

So with mixed, more bitter-sweet, feelings I went back to hospital yesterday (Monday 5th) for my outpatient's appointment with the Prof. Sally went shopping and was standing by to bring up my bags later, my bed on D3 having being reserved for me earlier. Obviously outpatients clinics over-run as well and it was an hour and a half before I met with my consultant, Prof Johnson, who basically informed me that my platelets on Friday were still too low (30) and he hadn't yet received the results of the bloods I gave when I arrived. The reason for the low platelet level? Not sure really but the good news is that my bone marrow is producing platelets, albeit slowly, there is no sign of Lymphoma in the bone marrow and no sign of the body making antibodies to attack platelets externally infused - which was one worry.

Some gentle exercise is doing me good, I'm sure.

More home leave!
So my stay on D3 this time didn't even rumple the sheets - and before I knew it I was off home again for at least another night, with instructions to ring in the morning - which I did - to be told that Monday's platelet count was down again, to 20! Oh dear, oh dear... I am assured they don't want to infuse more platelets (good, the last lot didn't agree with me) and that the count will eventually catch up and once it does will 'rise rapidly', a sort of snowball effect. I hope they are right and that the damage hasn't already been done to my platelet making capabilities.

One option if the level remains lower than ideal is to give a reduced level of chemo, but we'll see. My next instruction is to go to RHCH Winchester first thing Thursday morning for another blood test and await the results a couple of hours later - with overnight bag ready again and a bed reserved on D3. And so it goes on...

No problem with my appetite at the moment! Have put on 3kg.

Deafening Silence
The left ear continues to provide another oxymoron; it is annoyingly claustrophobic and varies from total silence in that ear to a deafening roar when my own voice resonates back at me. I can't determine where noises are coming from and I must be driving Sally mad with my constant "Pardon?", "Sorry?" and "What?". I literally have to turn my head so I can hear anyone or the TV, and in a crowd it is impossible to pick out a particular voice from the ambient prattle.

Having been told (albeit second hand) by ENT at the hospital, after much chasing, that my case is 'not high priority' and therefore they have 'no immediate plans to review' I am beginning to see red and have even started investigating having treatment privately, which may be part paid for by a medical insurance policy through my work. If nothing else it might kickstart the NHS into doing something; I fully understand that they may not want to start messing around with procedures and minor ops whilst my blood counts are up and down like a yoyo. But that's no excuse for not telling me that, and properly, rather than via third parties.

So, as far as the hearing is concerned, I see nothing I can do immediately except put up with it until my body recovers from chemo, which could be some weeks yet. Regarding platelets again I have to be patient and wait for those numbers to go up.

Come on, body, let's get on with it...