Diary

Dear, well, you know who you are…

9

On my walk, on the morning of July the 10th, I spoke to Michelle of my fears for today. I reasoned with her as we trudged along the muddy track along the top of Pussell’s Wood that whatever the result, the only thing that will change is the amount of knowledge we hold. I concluded that I was expecting anything from, ‘You have a week to live…’ to ‘Oh my goodness, you’re a bleeding miracle!’ Though obviously I was hoping for something a little nearer to the latter.

A busy morning with the start of construction of the steps in the back garden and the continuation of the floor preparation in the garage. Then, of course, it was Nigel’s oncology appointment to discuss the MRI findings. Oh, I was not looking forward to this.

Parked quickly and easily, arrived promptly and had bloods taken swiftly. All good so far. Then, at just five minutes after our appointed time, we were summoned. Professor Beresford asked after Nige’s wellbeing,

“I’ve been alright overall. I’m getting these strange nervous attacks which have got more often since the MRI thing but other than that… Actually I do have a headache at the minute.”

Nodding, smiling and with four monitors staring at us from his desk, he replied,

“The headaches do corroborate what’s here on the scan I’m afraid…”

My tummy didn’t lurch like that initial diagnosis back in September, but just fell away a bit. My mouth went dry though. Nige just nodded and said,

“I thought so. Well, I thought something was going on.”

When we visited Dr Barua in Southmead (all of us, en masse), we collectively refused to look at the scan results. Instead, each of us choosing to have a different visual manifestation of the tumour that had, uninvited, attached itself to Nigel’s brain. No such luxury this time with the monitors seemingly encompassing the entire room. Eagerly, Prof Beresford sought to explain the scan. He compared it to the one taken just after the operation last October where we could see just a black chasm. The recent one however had a little extra something next to the same hole. The tumour apparently, back for it’s encore. Odd, I never saw it as a white, fluffy cloud. And where were the teeth? It would appear, and I’m paraphrasing a bit here, that the radiotherapy and chemotherapy thus far has proved fucking useless and the bastard tumour is back. The complete cunt.

*

What next, I hear you cry?

Well, something called PCV chemotherapy. We have a handout offering us a full explanation but the gist is:

There are six courses, each course takes 42 days (6 weeks) and consists of:

A blood test, followed by a trip to the Chemotherapy Day Unit for treatment. This is delivered via a drip, through a cannula. Then we start a 10 day course of procarbazine capsules. Thirty two days off before we begin again. It’s gruelling and a bit of a knock back but, hey, I think we both thought this was what we were getting with the last lot of chemo!

On our return home from this ‘punch in the stomach’ meeting, we were met by Nick, who was levelling the garage floor. I think he could tell by my face that things hadn’t gone to plan.

“It can take years some time to find the right treatment for these things Liz. Hang in there, I mean, so that didn’t work but this might!”

He’s right of course. We always knew that we were facing a full-scale war but we became complacent in the face of his improved health. With everyone commenting on how well Nige looked and how well he’d done, we forgot (briefly) that the problem was still there. As I said earlier, nothing changed except the amount of knowledge we now had. And that’s power.

Whenever Nige went upstairs I cried. Whenever I left the room, I cried. At 8 o’clock I took myself down to the van to apply my long awaited stickers. For a while I stopped crying and started planning. Not anything major, just where the gold stars and the silver stars needed to go…

As I reflected on the day I realised what was bothering me most. It wasn’t the return of the tumour – we half expected that. It wasn’t the thought of 6 months of gruelling chemotherapy – I can support Nige ten-fold with that. It wasn’t even the thought of having to rethink my job situation. No, it was seeing that bloody scan, putting a face to the name (finally) was surprisingly hard. It meant that whenever Nige gets a headache, for all eternity, I’ll see that fucking white cloud buggering up our life. With it’s metaphorical teeth.

 

 

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Diary

Dear, well, you know who you are…

8

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.

img_9461The 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,

“That’s life…” 

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…”

 

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Diary

Dear, well, you know who you are,

7

 

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.”

*Beep-beep-beep*

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. thumb-350-556282The 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.

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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?

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