Life Begins…

Well I knew this day would come but, as you know, I’ve said that before… And if that day had actually come, then this one wouldn’t have. If you follow me.

September.-Back-to-work-back-to-school-back-to-books-540x804The new school year usually starts with at least one inset day to ease everyone in gently and this year we got two. Perfect for someone worried about connecting with anyone other than family and who hasn’t had to put an outfit together in almost a year.

So, up early on Monday and managed to cobble an outfit together that looked pretty decent. Nige made me a coffee and we chatted about the weather and what was happening in the world. We haven’t done that in quite a while, Nige preferring to bring our coffee up to bed. At 8.15, with mixed emotions, I grabbed my things and gave him a kiss goodbye.

“Have a nice day!”

“I’ll be home by 1…”

“Will you?”

It’s strange. As I sat in the hall, listening to Sue outline the new term and read through policies read through many times before, the past year just melted away. As if I’d always been in that seat, at that table, in that hall, with Gemma to my right and a bowl of Skittles in front of me. Weird. Then, after that was done we had to go to our classes. Mark wasn’t in so I was left pretty much to my own devices, just a few jobs left for me to tackle. My mind drifted back to last year, when I sat in the very same classroom, cutting out letters for display boards and preparing my desk for the rest of the first week. Only this time there was no desk to prepare – a years hiatus meant that everything at Roundhill had moved on without me – and my class too were grown up by a year.

As promised, I was home by 1pm. I felt quite accomplished, as I trundled along in my van. Refreshed, renewed, hopeful that this little bit of old normality might just balance up the abnormality of my life. For though it felt oddly surreal at work that morning, as I opened the door and was greeted by Harry and Gabe still in their pyjamas and an emotional Nigel, with his hearty,

“Hiya! It’s lovely to see you again,”

I reached up on my tiptoes, planted a soft kiss on his cheek and thought,

Nah, this is surreal, right here. Back there? That’s normal…

I’m going to be fine. I can’t speak for everyone else though.



Diary, Reflective, Thought of the Day

Who are you and what have you done with Lisa?


In conversations with myself, I have formed many analogies. The analogy of an analogy is a familiar scenario that perfectly describes the indescribable, nay, ludicrous scenario you actually find yourself in. It somehow normalises the whole thing, making you feel less insane and on a par with the world around you.

“You remember Terms of Endearment, that tearjerker film of the 80s, where Debra Winger lay dying with loved ones stifling sobs? Or Guardians of the Galaxy with a young Peter Quill refusing to watch his mother pass away? Well, we were there; seated uncertainly around Nigel’s hospital bed, sharing stories, all raw emotion and tears. Disbelief and hopelessness building up within, filling every internal void. Then, as if the universe needed to take a pee, the pause button was pressed. Whilst on ‘pause’ we seem to have entered a different dimension, where things appear normal. Where Nige is well, working in the garden and sawing up wood for a winter he may not see and, instead it’s the family cat that’s taken on his illness; lying on his deathbed, fighting for every breathe… But we can’t appreciate any of this or capitalise on Nigel’s good health because we are too busy listening for the flush of the toilet, for the universe to return and for the play button to be hit once more.”

c9a408e98943f6db7d3d5856b7922ed2--eckhart-tolle-dark-cloudWhen I say life appears to be normal I mean that Nigel appears to be well… from deathbed to flowerbed in just a few weeks. The steroids have made him emotional of course, and the tumour is still wreaking havoc with his memory and vocabulary but in comparison to the Nigel on pause, this one is fucking dandy. But as we navigate through this other world, we still seem to be stuck eternally in the real one, paused or not. The only difference is that the bed covers have changed from being thin, blue hospital blankets to a deluxe feather quilt, the view is no longer a square courtyard but wild birds and flowers blending into the woods at the back of our house and the visitors aren’t crammed around the bed but coming and going, with room to move around each other. Everything else is the same though; same tears waiting to spill forth, same emotions coursing through our bodies and the exact same illness trying to steal the life of a man beloved to us all.

“It is taking every fibre of my being to resist curling up in an embryonic pose in the centre of the bed, with the quilt heavy on top of me and not move forever. To open the post box, retrieve the mail and open it. To care even the tiniest bit about my appearance. But I’m winning, I think. At least, I am at the moment. You need to do the same Harry, ‘always forward, never back.'”

So while we await the inevitable in one world, we have the opportunity to create many 3064d43c36ca1fea6f21a94628603697--black-watercolor-tattoo-watercolor-paintingsmore memories in this one. We’ve been given a golden ticket to a world where we still have the husband and father we so adore, with added quirks and oddities. But there is a cost; Eccles. In essence we have swapped one deathbed for another and, though terribly sad, I’m okay with that. Eccles, our lone cat, has dodged many bullets in his 16 years and has led a life of unparalleled decadence. Anyway, in cat years he’s 76 and by anyones reckoning, that’s a far more palatable life expectancy than 54.

That’s your lot. For now anyway.




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…’


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.


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.


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.


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.


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 🙂

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.


Dear, well, you know who you are…


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.”


“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,


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!



Dear, well, you know who you are…


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.