Not the Best of Weeks – Jan 2019

All too quickly the time comes for me to start round 5. I sort of don’t want to go through it and I’m not sure why. But I brace myself and remind myself that I’m counting on it to help me shift another half stone. I’ve been a bit remiss and forgot to book into the surgery to have my bloods done in advance of the tele conference to let me know if we’re good to go. While my surgery are normally very accommodating they simply can’t squeeze me in but I can get them done at a walk-in service at the hospital so David takes me there. Trip one of the week.

The next day I have the telecon and they say unfortunately my bloods have been lost and can I come in two hours earlier on Monday, the treatment day so they can take some more. This is a bit irritating to be honest. They’ve never got lost on previous occasions when they’ve had to travel ten miles from Loddon to Norwich but when I have them done down the corridor, they do? Ah well, I can kill a couple of hours – luckily a friend is dropping me and David is picking me up so at least no one else will have to sit around.

Monday comes and my friend Sue drops me at the Colney Centre. A nurse, Joy takes my blood. She asks if I mind waiting out in the waiting room while they test it and they’ll call me in at 4 for my treatment. Previously when they’ve tested my blood at the Colney, they just run it through a machine and get the results in minutes so I wonder why they have got me in so early but there’s nothing to be done so I wait. Just after 4pm I am called back in and nurse Joy tells me everything is fine, she’s just going to prepare my drugs. She says my bloods are fine, there was a question mark over my kidney function but its all ok. Well this is unwelcome but actually good news. I’m on!

Except there seems to be a problem, Nurse Joy is very apologetic but for some inexplicable reason, they are out of Lomoustine, one of the three drugs that make up my chemotherapy. She is very sorry but can I return tomorrow? The pharmacist is certain she can get them for tomorrow. I suggest I get the intravenous part to be going on with as the Lomoustine is just pills but Joy thinks I need them in the combo. I see an opportunity and seize it, “maybe I should defer a week, come back next week?”. But I am assured there is no need. The drugs will definitely be there tomorrow and we can proceed as planned. Trip two ends with me celebrating an extra evening of feeling relatively well.

The next day, Tuesday, I go back for the promised treatment. Now is when things take a turn for the surreal. I am told there is no way I can have my treatment. My platelets are too low and on a downward trajectory. They will have to defer me a week. The doctor overseeing treatment comes to speak to me as, despite myself, the tears have started again. I’m just so confused and I’ve revved myself up, braced for treatment, I don’t understand what’s happening. “Nurse Joy said everything was fine!” I explained to him. “The drugs were missing or she’d have given me the treatment yesterday!” The doctor is patient and kind and tells me that my reaction is quite natural. He is sorry about the mix up but they simply cannot proceed with the treatment, it would be too dangerous. He tells me it could be catastrophic. Which leads me to wonder what would have happened if nurse Joy had had the drugs available yesterday? He says they will look into why there was such a mix up. I don’t feel entirely satisfied, I don’t have to understand every part of the process I am undergoing but I need to feel secure that the people administering it do. I ask him what the benefit to me is in continuing the treatment versus stopping at this stage, after all I was originally told they would be delighted if I made four. He tells me he is not a brain specialist but he will ask Dr. P. to contact me.

My misery that week was not confined to the treatment rooms. Come Friday and I was back to hospital again to have an MRI scan. This time my friend Sally brought me and we arrived early so I could have a canular inserted in the Colney. We checked in and waited. I asked how long it would be and was told just a few more minutes but as time ticked away I got more anxious. I explained I was worried they would think I hadn’t turned up so the receptionist tried to call through to let them know but inevitably, they were engaged. Finally, Sally and I were told to go to the Acute ward to have the canular put in and we were back on track.

Of course, when we got the MRI department I was told they had me down as a no show. It seems the Colney receptionist had not been able to get through. I explained so they agreed to fit me in and after a wait of 45 minutes I went into my scan. But things were just not destined to work out for me that day, after they’d done the first set of scans, they tried to put in the contrast through my canular, “Can you feel a stinging in your arm?” I was asked and indeed I could. “The canular has failed” he said. I don’t know if he would have been able to get a new canular in to me but I didn’t feel inclined to give it a go, even had he shown any enthusiasm to do so. I was in the scanning trucks outside, I think these MRI staff have been contracted out as they don’t wear hospital uniforms but all wear matching sweaters. While this may not mean they aren’t super with a needle, they don’t inspire huge confidence. No we ended there without a full MRI scan achieved thus an entire waste of everyone’s time.

On Monday I returned to hospital to have more bloods taken and to wait another two hours to see if treatment would be given. It came as no surprise to be told my platelets were still not up and treatment would not be given. I hadn’t been called by Dr. P. but an appointment had been made for that week and I would go to that to discover whether we were going to be pursuing any more chemo or not. My fifth trip in eight days left me absolutely at the end of my desire to spend a moment longer in the hospital grounds. I felt spent, exhausted suffering from a massive sense of humour failure and struggling to see any point in the whole sorry business.