“I didn’t think I was going to be able to do it!”

I’m glad she told me after she’d done it!

This is my account of what happened to me on the final day of Cycle One: Week Three. I should have been chillin’ down and relaxing with nice thoughts of nice things to in the coming “furlough” week. Instead I was in spasmodic pain from increasingly acute urinary retention. I was even staying in a high quality accommodation unit where VIP patients get to spend a night before having tests or whatever. It isn’t a Ward. It had a great view too.

By the way, I’m looking back at this from a few weeks hence. I have yet to share the intervening weeks’ events; there were several noteworthy ones! I might have to concertina the timeline a bit to get it all written down before I forget or move on.

It was the Tuesday morning and at 08:30 the bladder scan showed 600ml. Certain essential blood tests need to be completed on a pre-established schedule to determine how long the Trial Drug remains in the body – it’s an essential safety check.

By 13:00 my bladder scan reading was 900ml. There was a two hour window at lunchtime so I was shuffled down to the Private Emergency Treatment Department where I was met by the most disarmingly beautiful, young, French Registrar. She took me off to a small treatment room, fired questions at me relating to the origins of my condition and told me to undress! I petrified and jabbered! In the face of such charming, calm professionalism my brain froze. It is ignoble of me to talk of beauty in these moments of medical intervention: I feel I have degraded myself. However she completely maintained my dignity and comfort at all times.

With dextrous skill together with squeeze or two she eased in the catheter foley and – well she should have had a bigger receptacle! It reminded me of a Jasper Carrott story on his first LP (that’s how far I go back!) In the ‘BBC Medical’ narrative “Well, He should have had a bigger bottle!”. I was both embarrassed and slightly soaked! But – what relief! Like a well pleased nodding dog I thanked her. She went off for a quick hose down and to get, for me, some spares. I lay on this gurney with various grades and hues of disposable waterproof papers with a now complete absence of spasmodic gripping pains for the first time in about 36 hours.

She returned, with her composure intact, handed me the spares and told me to get dressed. At this point she confided that she as glad it had worked as she felt she might struggle with my super-enlarged prostate. With all this additional pipework, bags, belts etc I was helplessly hoping for some miraculous nurse to come sweeping in and pull me together. No – I had to unfreeze and simply do my best!

Eventually I got it together. with my basic level Urology spares kit under my arm I limped off and found my way back to the Clinical Research Facility to resume the blood testing. Accompanied by my most recent, nasal sensitivity of the fragrance of urine! It’s an anathema to me. As you know my current career as an Entertainer in Care Homes – I’ve got a nose for such things. It’s not a perfume I like to associate with myself!

I realise that none of this is contemporaneous and would’t stand up in Court. But who’s judging. I have been a little bit out of order and I apologise to the young Registrar.

I had a week off the Trial drugs. I had been so looking forward to a week off no drugs, no pump no strangling PICC tube. Instead I’d returned home with one elsewhere; more sensitive and potentially embarrassing. But actually it was less bother than I thought – delusional me!

One day we met up with the Luton LeukaemiaCare support group at Stockwood Park. We had a lovely time and we we all wore spots to showoff the Spot Leukaemia campaign. It kept warm and dry. During this little jolly we met our former colleagues from Mind; took me back a decade or two.

Of course we lost the dear old Queen during these days. Sad but, my word she lived out her Christian faith as a just and godly monarch. She’s showed up most of the politicians she tolerated as scheming scallywags and self-interested shisters.

It was good to be freed from the pump and its swinging straps or gut-squeezing bum-bag mode. I couldn’t make the most of it because I was caught hook, line and sinker with another set of paraphenalia!

While we were all grieving Her Majesty life continued on this adventure and on the Monday I was back on Thameslink down to the Royal Free; pity they don’t do Frequent Flyer bonuses. On the Tuesday I resumed Treatment back on the full dose. I’d done a week on Maximum, but then had a week off – so basically my system had reset itself. Usual care was taken and complete with filled pump I toddled back home. All was well until bedtime – 8:00 in the evening now in our house! I was feeling decidedly groggy, hot and clammy and very uncomfortable. Kym took it on herself, wisely, to call the Royal Free and get advice. It only took a few moments fo them to reply – “Call paramedics – it’s an A & E matter.” I was not really with it at all. Within a short time the bedroom was filled with paramedics and Dr Jasani, my Consultant called and spoke with one of the emergency team.

They did their observations and following Dr Jasani’s advice carted me off to the Ambulance. Speedily, but with no Blue Lights we were transported to the Luton and dunstable A & E as if on a Magic Carpet. A short wait until a Room was available – compromised immune system must have some advantage! Eventually we were seen, observations completed and a drip was stuck in my arm. A calms eventually enveloped me. Kym advised the young Medic that the Royal Fee Consultant wanted her to phone him – no matter what time. It was obvious to me that she was reluctant. Silly really; she could have saved herself anxiety and mental effort by speaking to the expert. She could have learned much too. After about four or five hours we were allowed to return home; a taxi this time – not cheap!

Home and bed: sleep and then a call from Dr Jasani at 08:00. He was glad I was feeling somewhat better but disappointed the Medic didn’t call him. He booked me in at the Royal Free for the afternoon and overnight. Would you believe it I slept like a dream – no issues – just they kept waking me up to check my vital signs! All’s well.

Nothing much then until dear old Queen’s funeral. What an event! And all that queueing! Blimey people (well most) are made of strong stuff and really wanted to show respect and admiration to our late Monarch. We had been booked into a hotel so the next cycle could begin promptly on the Tuesday morning. the drug can only be issued once certain criteria in my blood and body were met. We enjoyed a nice toddle around the Lakes at the foot of Hampstead Heath and bought a little buffet from Marks and Sparks (I think there’s one in every hospital). As I was already being pumped through with the drug, there was no change, no kick starting. We were topped up and left for home – feeling OK. Home exhausted, supported and ready for sleep!

Next adventure set out to rid me of the Catheter. I’d managed to get an appointment at L & D Urology clinic for the Thursday. I was willing and had high expectations when the Catheter was whipped out. However my prostate and Bladder were having none of it! Drinking litres of water, a coffee a walk around the hospital perimeter and still no joy. When it came to the flow test – just like the River Lea in July, August and September – nothing! I had barely produced enough to perform a Urine Infection Test. I coyly spoke to one of the team and admitted I was in pain and this ”test” wasn’t working.

“Mr Huxley,” a clearly professional voice called, ” I’m going to re-catheterise you to save your discomfort, this isn’t working!” Tell me about it; thought I. Within a couple of minutes a contained flow was induced and the feeling of relief renewed! I left with a slight spring in my step and a bag of tubes, velcro, and vinyl paraphernalia. I had the taste of disappointment in my throat as this catheter business, although convenient, is a little undermining to my self-image.

Clinical Excellence with the Urology One-Stop Clinic linked me to the Community Nurses and the Supply of all the relevant paraphernalia. I received a phone call from the Community team- activating the supply chain and more importantly confirming their telephone Number. Great. I never imagined I would be calling that number so soon that same evening. Also never imagined it was alive number; answered by a real Nurse. Within half an hour a Nurse was in attendance, clered the blockage, changed the Leg Bag and fitter the night bag and gave me tips to maintain a good flow and minimise the risk of infection. Not looked back since. Oh I have – but thats for the next episode!

This chapter is struggling towards its end. The trial drug had been kicked off at 2:00 and i was composing this blog from about 4:00PM. An anticipated side effect of the drugs – Trial (headache and nausea) and pre-med (steroids) a headache was becoming present: but didn’t deter my verbal rambles. I had planned to watch both “Bake Off” and the International Footie: both starting at 8:00PM. I hadn’t quite got to the end of my ramblings but the headache had worsened; to the point I couldn’t really cope with the pain together with the jeopardy and humour of the “Bake Off”. So power off with the iPad and away with ”Bake Off” and on with the Footie (at least until Half Time.)

I’m going to bring this episode to a close here. There has been enough personal jeopardy for one day. I’d eaten a lovverly home made Burger and Chips for my Tuesday evening meal: all of it with no nausea etc.

Next episode has more to tell; not that, at the time I could recall much. The First cycle was all about Cardiology. The Second Cycle all about Urology and any guesses which ”ology” takes pride of place in Cycle Three (so far)? All will be revealed in a day or two.

5 thoughts on ““I didn’t think I was going to be able to do it!”

  1. My dear friend what a journey you been taken! So proud of your efforts 👏you are a truly hero 🙏🏿 I am sending you lots of positives energies to help you through your journey. 😘🙏🏿🌈🍀

  2. Keep up the great work, Roger.
    By the way, if you need any distractions check out the Larry Carlton Trio live at Lugarno Festival on You Tube. Absolutely Brill!!
    Also guitarist Frank Gambale is a bit special.
    Jenny sends her best wishes.

    1. Cheers Annika, I hope you’re still doing well and not leaking! It’s good to hear from you. I’m struggling along a bit – but it’s more inconvenience than anything apart from some leg pains, but the leukaemia seems to have turned a corner for the better, thank God,

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