“If you always do what you’ve always done, you’ll always get what you’ve always got.”
Since Nigel’s ‘4 Days in MAU’ and Gabriel’s five or so hours at A&E, things have been relatively calm on the health front. Wendy (our VW T4 Caravelle) has provided a welcome distraction and given Nige a whole new family to enjoy – The V Dubbers! Things have moved along for me too. I’m starting to see a future. I’m just not sure I want it…
We took Wendy to our first Wilts V-Dub Club meet on the first Sunday in May. It was great, Nige enjoyed showing the other VW owners our van, making sure they all knew she was mine. He said it with pride but I reckon he just wanted to distance himself from the chintz units I’d created! Whatever the reason, I know he’s proud of me; for what I’ve done with Wendy, for stepping out of my comfort zone and attending a club meet with strangers. It may be deeper than that, but we don’t have those conversations.
The chemotherapy started again this month, at the lower dose which is definitely better for him. In fact on the day he took the last dose, we headed off to Odcombe for our first night away in Wendy. We parked up behind The Masons Arms, a 16th Century inn where we also had a table booked for dinner. My nephew, Seb, and his little family met us there for a drink which was unexpected and wonderful, despite the rain! Nige tired quite early on, which is parr for the course, so we spent an hour or so before dinner chilling out on the bed, watching the rain trickle down the back window. Pretty special, that. Dinner was a real revelation; Nige polished off a massive mixed grill… bar the mushrooms. Honestly, I silently sobbed tears of joy as I watched him clear the plate. What’s more, he managed a full English breakfast the next morning! It’s fair to say, things are looking brighter. We went away again the following weekend, though not over night. Wilts V-Dub Club had organised a day out in Weston Super Mare and Nige convinced me that we had to go. The weather was spot on and the turnout was brilliant too. I parked Wendy up on the beach and then my man and I promenaded all over Weston – quite excellent.
At the beginning of June I had my Occupational Therapy meeting in Keynesham. It’s the next step in getting me back into the workplace and one I’ve wanted to take for the past month. However, after a lengthy discussion I’m not sure I am ready. Day to day I’m strong, I’m fierce and I’m in control but when asked to outline my situation, I cried bitterly for a full 20 minutes.
“I’m not usually like this… I guess I don’t want to go back to the beginning of this shitty story…”
After going on like this, intermittently, for almost two hours, we came up with a plan.
“I think three days a week, maximum would be a perfect goal.”
So that’s it. My plan to get me back to work. Other things I learnt:
- I’m weary all the time because I’m hyper vigilant. Obvious really.
- I’m to have six counselling sessions.
- It’s not Occupational Therapy but Occupational Health. Aha, the difference a word makes.
As if he knew of my meeting (he didn’t) Mark messaged me to invite me on a school trip. I leapt at the chance to show him, and the school, that I was keen to get back to some form of normality. So it was: Mark, ten children and me took the coach to Longleat for the day. For that one day I stepped back into my old life and loved it.
Things were changing and moving forward at a more manageable rate. Nige still had moments of feeling unwell, of course and I was still having mini breakdowns between the hours of him going to bed and my own retirement. But hey,
We spent another night in Wendy, at Blacklands, in Stockley, near Calne – my hometown. The weather was glorious and after just a ten minute walk through the fields, we were at Nick’s house for Mojitos! A happy few hours chatting before we made our way back to the campsite. Nige was tired and left me alone with my bottle of wine. No one to take to work, no one to pick up. Just my man, my van, my wine and the vast night sky.
What else happened in June then? Well, I met my counsellor, Pam Leslie. It was with a certain amount of trepidation that I drove up the long and winding road to her house, sat outside for a few minutes to gather my thoughts. But on meeting her I felt a sort of calmness. I liked her. Then at the end of June we had Nigel’s MRI scan. For the first time ever I felt on top of things in the waiting room. I even offered some warm words to a nervous lady worried about the zip in her dress,
“Don’t worry, my husband has a zip in his trousers and I’m pretty sure they make sure he keeps them on!”
No results until July the 10th.
“I don’t want to know… well, I do want to know but I don’t…”
“It’s a train of thought, it calls at every station…”
When you’re caring for the love of your life and they succumb, not to a related illness but to bloody dehydration, you cannot help but feel a bit useless. Water is such a basic requirement; it’s an absolute essential that we all take for granted in the Western world. It didn’t once occur to me that Nige wasn’t drinking enough – he certainly drank more than me. But once I’d factored in the diarrhoea, increased dose of chemotherapy and his compromised immune system… well yeah, it’s obvious really. So the lesson here folks: DRINK MORE WATER!
Nigel’s stay in hospital had been a positive experience in general. For Nige, there was the constant company. A ward full of men of varying age chatting away the day, the consultant visiting each morning to answer any questions and the wonderful nurses (never the same one twice) with their unerring patience and good humour. For me, once the initial trauma had passed, there was a slowing of time; an opportunity to reflect, to recharge my batteries and to star-fish in bed! I spent everyday on MAU ward with Nige, watching the nurses, in awe as they deftly and sympathetically dealt with our more vulnerable members of society.
*Beep-beep-beep* “DAARLIN’? DAARLIN’?…. DAARLIN’? DAARLIN’?”
“Yes Bob, what can I do for you? I see. Keep your arm straight… There you are. If you bend your arm it will start to beep again.”
*Beep-beep-beep* “NURSE? NURSE?…. NURSE? NURSE?”
“Bob, you need to keep your arm straight. Remember?… There.”
“Am I a trouble maker?”
“No love. You’re absolutely fine.”
These nurses reminded me that when you need to sigh, sigh with a smile. I think my smile had slipped away a while back.
With Nige home we felt revitalised. His appetite was returning slowly and my batteries were on full. To see him eating was a joy and we could see his strength returning. A fortnight later we were walking around Castle Combe Car Boot Sale in the sunshine, something I never thought we’d do again. Although he was shattered in the evening and his right leg had swelled up (quite alarmingly really), he felt great – no pain, just happily tired. Just three days later though, he was back in bed with nausea and the lack of appetite had returned. Back to Dr Brook, in a week.
By the time the appointment arrived things were looking up again. But I wanted to make sure I was on the right path with everything.
“For the diarrhoea we’re taking Immodium. Is that okay?”
“Yep, perfect. I’ll give you a prescription though, on repeat so you don’t have to worry about running out.”
“What about coffee? I’m thinking we should be cutting it out…”
“Absolutely. Also avoid painkillers with caffeine in them – they won’t help in the long run.”
“What about probiotic yogurt type drinks? I’m thinking Yakult or Actimel?”
“Well, I haven’t really thought about that but I think they should balance out the bacteria in the gut so yes, give them a go. I have to say Mrs Lee, you’ve got it all sussed!”
“Yeah, well, I didn’t stop him getting dehydrated did I?!”
Two days after this we were at the doctors for Nigel’s pre-chemo blood test. At the oncology appointment we were both rather subdued. With such an improvement in his health, I was incredibly daunted by the prospect of more chemotherapy causing more trauma. Nige felt the same too. The pharmacist read the situation perfectly and went to talk to Dr Beresford, our Oncologist. On her return she announced that due to Nigel’s low electrolytes (potassium and magnesium levels) they felt it better to skip this month’s treatment; to give Nige another three weeks to get back to full health before his next dose of chemo. We both sighed with a smile.
Meanwhile, back at the ranch, some pretty damn exciting decisions were being made. The first was to update our iMac. The decade old iMac sitting in the office was getting slower and slower – enough is enough, time for a trip to Farpoint (so long as I can get parked). Watching Nige was a delight; he knew exactly what he wanted, what he needed and even haggled over the style of keyboard. So lovely to see him in his element and if anyone deserves a slicker, quicker less frustrating computer, it’s Nige. Anyway, we’ll all benefit from a less sweary and exasperated Nige! Gabe leapt at the chance to set it all up, gifting Nige a rather cool Star Wars screensaver. Now if we can just find a way to get Microsoft Word on there… ahem.
The other decision we made was quite a big bigger. For some years now we’ve been toying with the idea of getting a camper van. To be able to take off whenever the sun decides to shine or when life at home just gets too much has always appealed to us and since we’ve been given this ‘life changing event’ we figured,
‘What are we waiting for?!’
Well, we are waiting no more. Just two days after the Oncology appointment, we purchased a Technoblue, 2002, Volkswagen Caravelle. Although I say ‘we’, she’s in my name so I guess you could say she’s my first car! We’ve named her Wendy.
Nige chose Wendy because of Peter Pan and it worked for me too as I’m Lisa and together we’re Wendy and Lisa… The Revolution? Prince? Yes?? There’s also the much simpler Wendy House analogy so take your pick :p
So we entered May with a new computer and a porthole to new and exciting adventures. Nigel’s health was looking good – yes he’s lost a lot of weight but his appetite was almost back to normal and his energy levels had improved greatly. I chose then to focus a little on myself, deciding to join my neighbour, Michelle on her morning dog walks with Truffle. I set my alarm clock for 7.30am and dug out my walking boots. Let’s do this! Michelle’s a little bit like a super hero, she never changes pace whether going up hills, through woodland or down banks: to be honest I couldn’t have picked a better trainer for our Cotswold Hike! On my first walk we covered just over three miles and I felt epic. I had time for breakfast and a shower before nipping down to the doctors to get Nigel’s blood test done. This one was to check his electrolytes.
After a few hours in bed, at about 2am, I was woken up by Gabe.
“I have this pain in my chest? It’s been there all day and hasn’t got any better. Now I’m a bit scared to go to sleep…”
Gabe has tachycardia which basically means his heart rate is abnormally high, so having chest pains isn’t great. I rang 111 and explained the situation, the operator spoke to Gabe, who was brilliantly calm and very succinct. By 3am there was a paramedic here, checking his vital signs. Although it all seemed okay, the paramedic couldn’t explain the chest pains and so, because of his tachycardia, he took him into A & E. Nige was up and keen to come with me so off we went. Now, it’s a simple thing for most people but for me, so used to making these decisions on my own of late, having Nige by my side was bloody brilliant. However, I couldn’t quite shake my responsibility for his health and so as we entered the hospital I found myself not only anxious for Gabe but also for Nige and the toll this was all taking on him.
After four blood tests (which eliminated a problem with the heart) we were free to go home. We yawned the whole way home and talked about sleeping all day. Aha, bed. As I followed Nige into the bedroom and bent down to take off my shoes, my alarm clock went off…
There’s nothing like a brisk woodland walk to help you reflect on an unexpected event is there?
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.
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…
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.
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!
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…
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!
They say ‘what doesn’t kill you, makes you stronger’ and so I guess I’m heading towards Boudicca status! We’ve had an eventful month, the beginning of which was the highlight… After that, well read on and I’ll catch you up.
As I mentioned before, Nige has had a horrible stomach bug which, due to his compromised immune system, he just can’t shift. The weekend of his birthday we had friends over for a ‘Really Nasty Horse Racing Game’ evening. Right up until they arrived I wondered if I should’ve postponed the event, Nige was so not feeling it but to all of our amazement, he was fine. We didn’t keep him up too late (fatigue still has him in its grip) but he smiled a lot and loved chatting to Bex and Liam about their upcoming French adventure. From that night he picked up a bit and a week later he left the house for the first time in weeks. The spring sunshine helped and the fact that he wanted to get his photo for Harry and Ali’s Nature Challenge! He still had an upset stomach but the anti-sickness tablets kept the nausea at bay. The following weekend we visited Nick and popped in to see mum and dad on our way home – that would’ve been unthinkable 10 days earlier due to him needing to go to the loo constantly. He even had a bite to eat at mum’s, which was a massive improvement on the previous week.
With all this improvement I decided to try popping into work for a couple of hours on Tuesday. I’d had a meeting with Sue and saw a few of my class in the playground and thought, yeah, I can do this! So the following Tuesday I braved it and went in. I don’t know what I was worried about, the kids haven’t changed at all (apart from getting taller) and it felt like I’d never been away. Happy days. When I got home, Nige had been a bit sick. He didn’t look great but I still wondered whether it was a little psychosomatic, it being the first time I’d gone back to work in several months. I asked if he was alright with me leaving him for a couple of hours a week and he said it was fine, so I thought I’d try going in again next week and see how he manages. However, things took an unexpected turn.
On the Tuesday I worked, Nige started his 3rd month of chemotherapy. Generally he’d been doing really well but I think it’s a struggle alongside this stomach bug and the fatigue. On Friday, 24th March, I could hear him being sick in the bathroom so I got up and went downstairs to sort out the cat, make a coffee and breakfast, expecting Nige to go back to bed. But he came downstairs to get his Ondansetron and Omeprazole. When I came into the kitchen, he was at the sink with his tablets, running water into a glass. He put the tablets into his mouth, shaking a little as he was cold. As he took his drink I could see the terror in his eyes; the water wouldn’t go in, the tablets were unyielding and as he turned to me, in horror, I watched as his arms shot out straight, his whole body went rigid and he collapsed to the floor, as straight as a ram-rod. He was unresponsive as I knelt beside him, tried to clear his mouth and put him into the recovery position, his breathing was loud and growling and his entire body was rigid and tight. I screamed for help and in moments Harry and Ali were by my side. Ali rang 999, Harry kept talking to Nige and I explained what was going on to the operator, who was wonderful. The ambulance got to us super quick and Gabe let them all in. From there I let them take over. They talked about it being a seizure due to septic shock and never have I been so terrified. In fact I spent the entire day that way as we first raced through town to A & E, then had to endure hours of tests and different doctors offering their opinions. One even asked about Nigel’s thoughts on resuscitation.
“I see you have Multiforme Glioblastoma. I’m really sorry you have to go through that (!) It would be good for you to think about the right to resuscitation.
“I’m sorry what is that?”
“Well, in the event of you needing to be brought back we can resuscitate but most people have a lower quality of life after that so, I know it’s not a very nice subject and it isn’t an issue now but may be in the future…”
However Nige didn’t hear the last sentence as he was processing the initial answer to his question so when the doctor went he wanted to talk about it to me.
“We have to talk about that thing then. That serious thing.”
“No lovely, we really don’t. Right now we need to get you through this. Then, when we’re home and relaxed, then we can discuss that.”
Honestly, I despair with these ‘professionals’ sometimes.
By the time I left at 7pm Nige was on MAU (Medical Assessment Unit) and was looking a little brighter for all the fluids he’d received via IV. Chest and back X-rays were done, CT scan of his head was done, stool samples were required… I left there certain that this was a seizure due to chronic dehydration, I knew that there was no connection to the cancer and I was absolutely positive that with Harry and Gabe, we’d get through this.
And so, because we missed the bus, Ali chatted, I cried, we strolled home together.