Diary

Life, Death, Life.

The very last place I expected to be on a Tuesday evening was in a tiny room, with an insufficient amount of tissues and, as it turned out, hope. Whilst Nige lay on a hospital bed, Harrison and I set our faces and allowed the words to wash over us. A few phrases seeped through – one in particular rang out,

‘We can’t say for sure but he probably won’t make it through the night…’

Not enough tissues.

Gabriel needed fetching first; everyone in one place, this place. As I made my way back to the van, I returned my brother’s call. It was as incoherent as it gets I’m afraid – poor bugger definitely wasn’t expecting that. After that the ranting continued. It continued as I drove past Victoria Park. consumed me along Julian Road. It took my breathe as I sat at the lights on London Road and it burst out of me as I grabbed Gabe in the doorway of our home. All I remember of the journey back to A & E was Gabe sobbing loudly and rubbing his face, then, as we drove past the hospital entrance I saw Harry, waiting for us, his face still set, his mouth tensing up as he drew on a roll up. When we reached him he offered monosyllabic words of comfort to his brother but his eyes betrayed his inner stillness. As Gabe and I fell apart on the outside, Harry did the same from the inside. In this dangerously damaged state we huddled around Nigel’s bed and started on the final path of our cancer journey.

*

The staff asked about family.

‘Just us really…’


Wednesday

Imagine my surprise when, at 3.30am (Wednesday), his mum turned up with his three sisters. Our eight hour vigil of just us three and Lois was crudely broken up by their arrival. Our dignified grief mocked by the ridiculous bickering of sisters who, until now, had shown absolutely no interest in making amends for the years of wrongs laid by them upon our beloved. I had some sympathy for his mum, of course, as she cut a forlorn figure leaning over Nigel. She’s been poorly herself of late and watching her trying to grab back a long-since gone relationship with her son was heartbreaking. But then she asked a sobbing Gabriel, ‘What’s wrong Gabe?’ The sisters put it down to absent mindedness but for Gabe it was a flash back to those years of torment bestowed upon him by her and for me it was a reminder of how she had disowned Nige in a letter upon the word of a now discredited brother. The words of that letter, in her own hand, burned into my head. As I met Gabe’s gaze I knew they all just had to fuck off.

‘I swear, if you die now, with them clawing at you, I will punch them all in the face.’ 

was my uncharitable and overwhelming thought. Gabe did better though, he asked them to leave. And they did.

*

As calm descended once again and Nige had clearly made it through the night, we made a plan. Neither Harry or Gabe really wanted to leave but both had, by then, been awake for over 24 hours and both needed rest. Gabe chose to sleep for a bit in the van whilst Harry opted for a mind-clearing hour and a half walk home. He’d barely put his head on the pillow before Nick turned up at 10am and Harry came back to the hospital with him. By then Nige was sitting up communicating well. It was just bizarre how the more drained we became, the livelier Nige appeared; as if our love was the ultimate drug. Though I may have to concede much of the credit to steroids. By the time Seb and Anoushka arrived for a visit later that evening Gabe was home in bed, Harry was still hanging in there and Nige was looking much more like himself. Before our visitors left (taking Harry with them) we were moved to ASU. We had another side room which we were told we’d have so we could say our goodbyes privately, and they even brought me in a bed. After a straight forty plus hours awake I finally managed to put my head down.


Thursday

Happy birthday to Gabe! He had a great time, I think. He and Alex called in to see Nige at about midnight and the three of them sat up chatting and scoffing sweets until 2am. I drifted in and out but with a happy heart.

*

A surprise visit from an Oncologist this morning. I registered this, telling him that I was told we wouldn’t be bothered by anyone, that all the nurses had been given permission to prescribe any drugs we may need. He replied,

‘When I read the notes on your husband I didn’t expect to walk in a room and see someone sat up, chatting, smiling and who could move his arms and legs.’

He ordered another MRI scan for a comparison and set about treatment. I mean positive treatment. When I asked about the bleed into the tumour he said there wasn’t one… He went so far as to tell me that the CT Scan was misinterpreted and that there was a good chance he’d be coming home. Later that day another Oncologist visited us and corroborated what her colleague had told me, adding that we may also be able to continue with the PCV Chemotherapy Treatment.

‘Wait… What?? But we were told to say our goodbyes…’

‘No, no. We think there’s more to be done. We’ll move you onto the Oncology Ward and work out the correct dose of steroids. You should be home soon.’

Can you even comprehend that? I mean really?? We spent from 8pm Tuesday until 8pm Thursday coming to terms with this gorgeous man’s imminent death. We endured an incredibly unsettling and awkward ‘final’ visit from his estranged family that, quite frankly, none of us want repeated. Each of us found a space within ourselves to temporarily carry the grief until we had the time to lay it bare and go through it all together. But suddenly we didn’t need that – we were just left with the raw grief within us, with no plan at all on how to offload it. Incredulous, delighted, bewildered, we fragmented. I stayed with Nige whilst the boys went home. Both went on to deal with the colossal weight of emotions in their own way. It’s no surprise at all that the one who had remained as stoic and as in control as humanly possible was the one to crash and burn.


Friday

As Nige continued to defy the odds and regain his former strength, Harry disappeared. Gabe kept in contact with me throughout all this and so between us we managed to resolve the situation. I say ‘resolve’, there’s still much to battle through but suffice to say, by 4am, Saturday morning he was home safe. Sound may take a while but hey, this is not the week to be taken by surprise.


Saturday and Sunday

We have a brand new Harry! One who talks, one who sobs openly and one who suddenly seems to be able to handle our altered situation as well as finding himself newly single. It’s shifted the brotherly relationship somewhat too, which has always been a disjointed one. As a consequence to everything I came off Facebook. Honestly, I was shocked at just how obsessed we all get with other peoples lives; how we offer words of support to relative strangers really and yet, right in front of our eyes our own flesh and blood are struggling to be heard. It’s just so wrong that if Harry had written a status about how he was feeling he’d have had oodles of support. But he didn’t so he was left unheard. I feel utterly shit about that and so yeah. No more Facebook, time to stop looking at the world though laptops and mobiles. Time to put them away and look people in the eye, read between the lines. Less statuses, more words.


Monday

Today Nige started to slur his speech a bit. I think they may have reduced his steroids a bit too quickly. Thankfully we moved to the William Budd Ward, on Oncology, where the Oncologist upped the steroids. Harry and I were with him as they wheeled his bed into ‘Bay 3’ and the distress on his face was plain to see. He wasn’t disappointed but, rather, confused. He had no idea really on what to expect but he just said he thought it would be ‘different’. Sensing his distress, the three other blokes on the ward stepped forward to make him feel better; a wonderfully courageous thing to do given the advanced stage of their own illnesses. Lionel in particular took a shine to Nige, and Nige really liked him. Pete the Pilot too offered many sage words but Rob (or Leslie) looked bewildered and bombarded me with questions about his upcoming chemotherapy treatment. It’s fair to say that some proper bonding happened on that ward over the couple nights Nige was there and I can honestly say I’d never met three braver men.

For the first time in a week I spent the night at home. Comfy, yes, but I’d sooner have been with my man.


Tuesday

Harry continued to improve in spirit. Eating and sleeping still weren’t on the menu but there’s time. The lovely Lionel was off having treatment when we got to the hospital. When he returned he looked like a shell of a man. It reminded me of One Flew Over the Cuckoos Nest. When his son arrived he reached his arms out and just sobbed and sobbed on his chest. The tears just flowed from both mine and Nigel’s eyes. Poor old Lionel, poor, poor lovely Lionel.


Wednesday – Discharge Day

Emotions are very mixed up on discharge day. I know this from experience! This morning Harry and I turned up to a teary Nige. Lovely Lionel had had an awful night, battling the effects of all the radioactive shit coursing through his body. Nige spent a couple of hours holding his hand, giving him something to focus on. It took it’s toll on him though and even after we returned home he talked about how scared he was of Lionel dying.


So there you have it, our fucked up week during which we almost lost one, rescued another and learned more than you can ever know about ourselves. We’re home now, with the promise of Dorothy House support and a far more open approach to each other.

PS Still no Facebook – it feels great 🙂

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Diary, Uncategorized

PCV Chemotherapy Treatment

We knew that the tumour would return, of course, and we knew there was another treatment to try after the last lot. I guess that I thought the last lot of chemo would’ve been this lot – PCV – as it’s specifically for brain tumours. However, it seems we were to endure the first and second round of chemo before this more gruelling one of six cycles lasting 42 days.

So what is it?

  • P – Procarbazine (taken at home)
  • C – Lomustine or CCNU (taken on day one at home
  • V – Vincristine (given on day one through a cannula at the Chemotherapy Day Unit)

A week before our first cycle Nige had a blood test. This needs to be done before each of the six cycles to ensure that he’s okay to proceed. Then on the 24th July, at 2.15pm, he took his Ondansetron (anti sickness) pill. They tell you to take this between 30 and 60 minutes before the treatment although I never give it an hour before in case the appointments are running a bit late. Nigel’s appointment was at 3pm but we would’ve been fine until quarter past. The 24th was a mixed up kind of day. Firstly, it was Harrison’s 24th birthday – 24! I was so thankful his girlfriend was down for a few days and we did have some birthday giggles in the morning whilst Nige slept. But it seems that the tumour has really taken hold of him, causing his speech to slow down and even affecting his eyesight. Still, we made it to the RUH and Nige shuffled into the Oncology Unit where we waited just a short time before being called through to the Chemotherapy Day Unit. Our chemo nurse was Annie and she went to great lengths to explain what was going to happen. Apart from struggling to remember his name (slightly alarming) Nige coped brilliantly. The cannula was placed first time and after just 20 minutes or so we were all done. Annie brought over the bag of drugs that needed to go home – Procarbazine, Limustine, Ondansetron and Metoclopramide – and went through the dosage and timings with me:

  • Day 1 – Ondansetron (home), Vincristine (hospital), Ondansetron & 5 x Lomustine (home)
  • Day 2(all at home) Ondansetron, 4 x Procarbazine (after food), Ondansetron
  • Day 3(all at home) Ondansetron, 4 x Procarbazine (after food), Ondansetron
  • Day 4(home) 4 x Procarbazine (after food)
  • Day 5(home) 4 x Procarbazine (after food)
  • Day 6(home) 4 x Procarbazine (after food)
  • Day 7(home) 4 x Procarbazine (after food)
  • Day 8(home) 4 x Procarbazine (after food)
  • Day 9(home) 3 x Procarbazine (after food)
  • Day 10(home) 3 x Procarbazine (after food)

After which there’s 32 days rest before it all starts again.

In the hospital we were given a ‘Chemotherapy Diary’. It’s full of all Nigel’s medication and has two pages of symptoms to check for. If he’s experiencing any highlighted in yellow, I need to ring the Chemotherapy Helpline. The problem I have here is that many of the symptoms, I feel, are related to the tumour and not the chemo… It’s so tricky to judge. Let me explain.

When we returned from the hospital, where he was already a bit disorientated and had spoken slowly, he went to bed and wasn’t hungry at all. In fact I struggled to get him to take his medication as he was so sleepy! Tuesday, he ate breakfast in bed and got up just before lunch, when he ate a tuna mayonnaise salad sandwich. He managed a large dinner too, going to bed at about 10pm. Hmmm, things were looking up. Wednesday he awoke with a headache and refused breakfast but went on to eat a large lunch and dinner. He went to bed at 7.30 though. By the end of the week it was clear that the chemo induced tiredness had kicked in but that the appetite was still there. Nige was struggling to use cutlery though and I definitely need to rethink soup in bed.

By Tuesday, 1st August things were looking grim. Virtually no speech and some very crooked facial expressions, along with a complete collapse down the right side of Nigel’s body induced me to call 999. And not a moment too soon. We were admitted to hospital at 7.30pm and Nige was rushed through for a CT scan.

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Diary

Dear, well, you know who you are…

10

Taking on the role of carer to the love of my life hasn’t been easy; to watch him in pain, to see him stumble up the stairs, to hear him falter over familiar words. But because he is the love of my life, I’ve found my capacity to endure has grown larger, wider and deeper. Yes I cry most evenings and okay, I dare say I’ve let myself go a bit too but honestly, I am happier here right now, with Nige, than I could possibly be anywhere else.

Through the following days after being informed of the tumour’s return, Nige became withdrawn and understandably morose. As I thought, having the image of it seared into my head only served as a conduit for tears each time he reached for the Co-Codamol. The optimism, however mis-placed, of the past few months had gone. It’s fair to say ours was not a happy house and so, with the encouragement of Gabe, I decided to book us a long weekend away in Wendy. Nige had mentioned Paignton in Devon and, though not a fan, I busied myself finding a fairly plush campsite with good facilities on site so we didn’t need to walk too far for anything. On the Friday, bookending our shitty week, we set off on our mini road trip to Whitehill Country Park! I love watching Nige when we go away. He’s always been so gregarious and chatty but I guess in the past, social convention held him back (or perhaps it was me). Not anymore though, and I’ve grown very thankful for it. As I sat supping wine, Nige took himself off to the toilets. Not 100 yards past our van and he was nattering to an older couple sat outside their caravan with an ageing Golden Labrador. I put down my book and listened in;

“We’ve got a T4 thing, well I don’t drive, Lisa does. I’ve been banned.”

“Oh right.”

“For health reasons.”

“Oh…”

“Yeah, I’ve got brain cancer. It’s, well, we thought it had gone but it’s back so…”

“Oh I’m sorry about that.”

“Well, that’s life.”

Tears in my wine again but tinged with pride. It was a relief to hear Nige say it. It told me that he knew what was going on this time. Originally, back in September last year, I don’t believe he did. You’d’ve thought that Nigel’s frankness would be off-putting to strangers but hats off to this couple, they chatted away to him for a further ten minutes before he ambled off to the loo. Already he was more vital than he had been at home earlier in the week. We were actually quite active; exploring the campsite, taking the bus into Paignton and strolling around there for hours then on our final day we stopped off in Brixham. I parked so far out and so high up, it was quite arduous both ways! The little harbour town was beautiful in the sunshine and we sat eating lunch gazing at the Golden Hind, listening to Morris Dancers. As we headed for home though, he told me that throughout our trip his headache had barely gone.

Back home. On the Tuesday I took both Gabe and Nige to the doctors for a blood test. Gabe had an X-ray on his wrists last week but also needed a blood test to check for arthritis and Nige had to have one in preparation for his PCV chemotherapy treatment. The next day was an even busier one. First thing in the morning we had a chemotherapy information meeting at the RUH. They gave us a slide show almost, highlighting side effects and what to expect on arrival to the Chemo Day Unit. By this time Nige was tired and struggling to find certain words. A far cry from the chatty guy in Paignton just 4-5 days earlier. After lunch Harry and Gabe had their first driving lessons. Both left slightly anxious, both returned smiling. There, good shit does happen. Then at 3pm it was my penultimate Counselling session. I’m not sure what to say about that other than I think I’ve made progress… The rest of this week I spent worrying about Nige. He started talking in short, monosyllabic sentences, often leaving them hanging with no ending and I noticed his walking had become slower, causing him to lose balance on occasion. I entered the weekend, and my momentous Macmillan Cotswold Hike with a heavier heart than I’d anticipated.

 

177791_472432096118803_880384552_oOn Saturday, 22nd July, I got up at 5am. I had time to grab a super-strong coffee, bowl of Cornflakes and my previously packed back-pack before meeting Michelle and Paul out the front at 10 to 6. Paul dropped us off at Queens Square and we had plenty of time to find the coach and make our way to the start of the hike in Hillesley with thousands of other wannabe hikers! Marianne, Dominique and their Michelle arrived early too so the five of us started a little earlier than our planned 8am. As much as I’d love to go into details I’ll refrain. This isn’t the place for that, though I promise I will write a review of ‘My Mighty Cotswold Hike’. I will say though, that the rain came down and the mud swallowed our feet and on the occasions where I found myself alone, my thoughts were always with Nige. Surrounded by so much countryside and so little noise, my mind wandered through pathways not explored before. I confronted the fact that he’d been deteriorating in front of me since the tumour had come back. I marvelled at how, for those 2 weeks between MRI and results, he’d been optimistic still and on the one hand I thought,

“Psychosomatic.”

Then I countered that with,

“It clearly grew rapidly between MRI and getting the results. So no, not psychosomatic.”

img_9501Then my heart ached for Nige and I just willed this hike over with. And guess what? In just over eleven hours it was! As Michelle and I marched through Victoria Park to the finish line who did I see first? Yep, he’d made it out of bed and Paul brought him down with him. Amidst applause, I grabbed his hand and walk the final 100 yards with him, over the finish line. Me and my man. And a well deserved glass of Prosecco!

 

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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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