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...