Diary

4 Days on MAU Ward

FRIDAY

Strapped into a fold down seat in the back of an ambulance, watching wide-eyed as the two paramedics busy themselves hooking Nige up to an IV, fastening electrodes to his torso – front and back, recording statistics, calling the RUH to warn them of our impending arrival. The Bristolian paramedic driving the unfamiliar route, blue lighting our journey to reduce the ETA. All the while my hand resting on Nige’s head and I’m uttering words of what I hope are reassurance. On arrival I’m left alone whilst the team pass on information to the doctors and nurses in A&E, make him comfortable and stable. Then I’m taken to him. It’s all a little overwhelming and I can’t seem to stop crying.

Four times, to four different people I recounted the morning’s event. Four times, from four different people I received a sympathetic apology for Nigel’s brain cancer and four times, to each apologetic professional, I said, ‘Thank you.’ The fifth person I met was the Macmillan nurse, and so very thankful was I, with her matter-of-fact questions and warm, knowing smile. Brain cancer sparks a real interest in people, especially young doctors and consultants and that’s as it should be – it’s an exceptional area of medicine – but I wasn’t in the mood for going back to page one of our journey, and the Macmillan nurse was on the same page as us.

From there we were sent for CT scans and X-rays of his chest and back. The nurse recognised me;

I remember you, don’t I?

Yes, we saw you right at the beginning, on our first visit to A&E 6 months ago…

I don’t know why but as I waited in the CT area I was overwhelmed with grief. This is where it all began really, this journey of ours. Here, I waited and waited so we could rule out anything serious. I never thought we’d be ruling it in. Then the X-rays. I remembered being here too. More tears. Never have I felt so alone. I messaged Sandra, she messaged back. Ali too had sent a chirpy text to say Harry and Gabe were okay, bringing me back to my senses and reminding me of how lucky I am in so many ways. When they’d finished and we were finally heading to MAU ward, I found an extra reserve of inner strength. The kindness of everyone we came into contact with lent a feeling of security and Nige was becoming more and more chatty as the fluids rehydrated him. On the ward the nurses re-sited the cannula initially put in by the paramedic. He ate a small amount of vegetable soup, followed by ice-cream and by the time I had to leave we’d had a good hour or two of laughter and hugs and chit chat and love.

Having arrived in an ambulance, it dawned on me that I had no car. So, unable to conjure a lift from anyone and missing the bus, Ali and I strolled home. We talked, we laughed, I probably cried a bit, I definitely got blisters on my feet; we conquered. In fact we both conquered a lot on that day.

 

SATURDAY

Come on Gabe!

What’s the hurry? He’s not going anywhere…

Desi, the nurse on duty, rang to say Nigel was moving to Parry Ward. I was a little anxious about my ability to find it but shit, I’ve dealt with worse. Gabe had a shift at the pub so I dropped him in town on my way. On arrival my phone rang again – well Nigel’s phone actually.

He’s not moved yet but we’re hoping…

Don’t worry, I’m in the Atrium. I’ll be at his side in 2 minutes.

Nige was sat on the commode when I got to his bed – charming! A stool sample was needed and anyway, they don’t want him walking far yet. I asked after Bob and Chris (the two men opposite). Nige wasn’t impressed with Bob’s shouting throughout the night. I think it’s hilarious but then I don’t have to endure it for long. Chris is still wandering about, terrifying me as he tears up tissue, drops it on the floor and then tries to pick it all up. Today though he was putting his torn tissue onto Bob’s bed! His son and daughter came in again, they’re understandably worried but I feel sorry for Chris as he is able to get about – slowly – but his daughter wants him to stay in bed or in his chair. Whilst they went for coffee, he took himself off again, to the women’s ward around the corner! When they returned they saw their dad sat down again in his chair. Laughing, Desi and I told them how he was always wandering off to the other ward to see the ladies and I could see them both relaxing as they smiled. For the first time their conversation with their dad was a little less strained. Clive, in the bed next to Nige, was visited by his children too. It was very sad though, both sons cut very forlorn figures as the doctor discussed palliative options with them in hushed tones. Clive hadn’t regained consciousness the whole time I’d been there. He was in a great deal of distress and moaned and cried whenever the nurse tried to take his blood pressure. After they’d left and the nurses had decided to stop trying to do obs on him, Clive’s breathing settled and he looked less like he was at death’s door. I wish I could’ve spoken to his children too. I wanted to tell them he wasn’t distressed anymore.

We have an MRI scan tomorrow morning, at 8.50. The appointment was made months ago but as we’re here…

 

SUNDAY

 

Happy Mother’s Day! Such an early start for me, I was at the hospital by 8.30am, yawning and in need of a coffee. The clocks went forward last night so actually I was there by 7.30… The things we do for love! Just ten minutes after I arrived we were told that the scan had been cancelled. Apparently this was due to the diarrhoea Nige still had. I asked about the stool samples too – we need another three for comparison. We didn’t waste the early start though as I managed to get Nige in the shower. I took off all the sticky pads they put on him in the ambulance and helped him to have a shave and wash his bits. Honestly, it felt great to be of use and just the proactivity of it all lifted my spirits. Back in his newly made bed we learnt that he and Chris (the only two left on their ward) were to move round the corner. More women than men meant that they needed more space so I helped wheel all the relevant lockers, tables and beds round to their new destinations. Chris was so much more settled in his new place – I think it’s because the sun was streaming through the window, making everything feel brighter. Nigel’s new neighbour (other than Chris) was Bruce, who introduced himself by saying,

Oh, we have a lovely lady!

That’s my wife!

Well, that’s no good to me is it?

No, but it’s good for me!

Men! I left them to it at lunchtime so I could have lunch at home and maybe catch up on a few zees.

At teatime I returned to the hospital with Harry. Gabe was busy cleaning and then had to go to work – he’s promised to come with me tomorrow. Nige loved seeing Harry. He proudly told Chris that ‘this is my son’ and Harry must’ve felt the relief of seeing his dad looking so much better than when he last saw him, strapped to a seat, being carried down the steps to a waiting ambulance. You forget – I forget – sometimes what everyone else is going through, it’s good to have a reminder. So for a few hours Harry and I chatted about nothing in particular with Nige. We laughed at his observations, notably of the orderly serving dinner,

You know Trump don’t you Lise?

Well, yeah, of course I know Trump!

Well, she’s got his ‘air…

She did too. Uncanny actually.

We left him to finish his egg sandwich and yogurt. He promised he wouldn’t but he’d try and eat half. Harry bought me a Mother’s Day Schwartz Burger for dinner. I ate all of it.

 

MONDAY

Another morning of hurrying Gabe along. I know we don’t have to be there for 11 but I do like being prompt. Anyway, Nige messaged me at 9.30 to say he was moving to a new ward and would probably be staying another night. However, as before he hadn’t moved anywhere by the time we got there and I’m pretty sure he won’t. They really want him in his own room due to his low immune system but there isn’t one. Besides, Nige would miss Chris too much now – they’ve struck up quite a friendship. As with Harry, Nige announced to the ward in general that here was his other son, Gabe. I love it when he does that. It makes me feel like we’re a proper unit; tight and unbeatable. For an hour or so we chatted as Gabe played with the bed and Nige laughed at him. It’s been a good many months since he’s looked this well to be honest. The interaction has done marvels too – I’m not sure he should come home! We left him eating his lunch though I’ll be back in a couple of hours.

At about 2pm Nige messaged me to say he was allowed to come home!

image

Eight scans?! I had to get Ali to re-read that particular text as I drove her to work. Yep, eight scans that he’d been told would be done next month.

So after dropping Ali at work for 4.30, I parked up and skipped in to see him for the last time – hopefully. Elena (the nurse) assured me that his medications were being dispensed and hopefully we can go home at 7. I told her that Ali finishes work in Medical Records at 7.30 so we worked to that deadline. Chris’ son and daughter came in again. I’d helped him with his phone earlier and he was so grateful.

Your daughter’s sorting out my phone!

She’s not my…

Shhhh…!

Let’s be honest, it’s not the first time it’s happened and as I get older, I’m less inclined to correct people.

At 7.15 we made a tearful departure from MAU ward. Tearful because we’ll both miss Chris; a gentle man recently diagnosed with Parkinson’s and who bears an uncanny resemblance to my lovely dad. As Nige sniffed his way along the corridors to the car park I told him we could always come back in tomorrow to see him. Unsurprisingly he said no.

Back home and back to normal. Nige upstairs, me down. The boys busy with whatever they’re busy with. I’m wondering still if he’s better off here or there…

*

Here. Always he’s better off here, with me at his beckoned call. Though if any of you want to visit, he’s always up for a chat!

 

 

 

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