Diary

The Only Way

I have no idea how or where to start. I think I’ll just wander through my head and let the words flow. Or not. We’ll see.

Those who have followed our journey will know how determined I’ve been in getting my beautiful man the most dignified route off of this mortal coil possible. A vague and hopeful notion at the beginning which became an absolute after his ‘false alarm’ in August. No thin, blue blankets or dingy side-room, not when the view from our own, lovingly chosen bed, in our prettily decorated bedroom was so stunningly beautiful. No.

I’m sure I voiced this wish of mine but maybe not too loudly and probably not to Nige. What would’ve happened if I’d berated the notion of dying in hospital and then, due to no fault of ours, that was what we got? It so nearly went that way too. So I dug my heels in more and promised Nige he would never go back to hospital. He chose to stop the ineffective chemotherapy and we started visiting Dorothy House instead. I’m crying now at the memory of his face as we walked through the main door, into the waiting room with a sweeping oak staircase on the left and a huge open fireplace on the right. Every week I took him to see Steve for his physio, every week he went in tired and came out invigorated. We did that up to the beginning of December. Nige was genuinely fed up when it stopped but his exhaustion was so very acute that it became unsafe. I hoped it was a blip and that next week we’d be back to it. It wasn’t to be and he never asked about it either.

So it was just me at home really, with a little support from the boys. Things had to change at some point; Ann from Dorothy House told me that right from the beginning. I heard it all, took it all in and filed it away somewhere. “Carers, respite…” No; “Me, home, bed…” And in the end we were both a little bit right. Though I was more right (of course).

After Nigel’s fall on the 18th of December, he took himself up to bed. Although he continued getting up for the toilet, he never came back downstairs. The nurses still came though, to check his blood sugar levels and, slowly, they slipped into my life. I felt comfortable with them there, bathing Nige in bed and it meant that I could share any worries I had. It turns out I had quite a few…

They saw me struggling to get Nige to the bathroom – two days later we had a commode and a bed bar so he could pull himself upright. The commode was the biggest help yet when first offered one I said, “No, no, I’m fine…” It took me almost a week to succumb. Same thing happened with the Over Night Respite Care. Actually, that wasn’t really that helpful. Twilight Nurses? “Honestly, I’m fine…” In just a few weeks the bedroom resembled a ward, with a commode, bed bar, back rest, slide sheets, handling belt, ankle pressure mattress and a whole body mattress topper – you turn your back for a second!

In the final week carers were introduced. It started with a letter from Virgin Care telling Nige that he qualified for care… Then there they were, complete with file, three times a day (four, if I wanted). I know I would’ve got used to them but I didn’t have to. I think we had one complete day – maybe two. On the Friday he died, Anna knocked the door. The nurses had been around a few times to set up syringe drivers and Anna was dropping off more meds.

“I’m so glad you’re here. He’s not right, he’s been different all day.” 

It started with no appetite. Then, at about half 4, his breathing changed. He was shaky, and sounded like he was straining. I told Anna that at first I thought it was serious but then I started to think that maybe he just needed to empty his bowels – it had been 12 days. Anna concurred that he was straining and did a sweep. He was more comfortable then, his breathing, still laboured, was less pained.

“I’m not going to say that things haven’t changed because it’s hard to tell but…”

“I know. I know. But at least he’s less uncomfortable… and he’s had a pretty blonde nurse put her fingers up his bum, which I’m sure was on his ‘to do’ list!”

I think we both knew that the beginning of the end had started. With Gabe at work and Harry in the garden, I perched on the bed and took his hand… His breathing went through stages, each one gentler than the last. As the tears fell he slipped away. I waited and waited for the next breathe… and waited.

*

We stayed in the room, with our man, our sweet, breathless hero who had battled for too long. I don’t just mean the illness. Between tears the boys and I reminisced about Nige, things he said, things he felt. We were his everything, he had told us.
“I wanted my family to be that but they showed me over and over that they didn’t want me. So that’s it; I’m done. I hate them all.”
It was as simple to him as that. And, honestly, I couldn’t blame him.
At about half 11, two District Nurses arrived to lay out his body. We stayed downstairs until they’d finished and joined us.
“You need to call the Funeral Director. Do you have anyone in mind?”
“Not really. Co-Operative? I drive by that one on my way home from work…”
Gabe said, “Maybe anyone else? Other than the Co-Op? I mean, it sounds a bit…”
“Hunt then. They’re in Moorland Road.”
One of the nurses said that they’d used them and they were very good so that was that decided. I rang them up and they assured me the Private Ambulance would be here in about an hour and a half. The nurses took their leave, once again it was just our hero and us. Together we decided to see Nige ‘laid out’. Harry and I had chosen a t-shirt and pants for him to leave the house in. But I think it’s fair to say we were not prepared for the normality clothes added to the whole situation. Before he was Nige, the long suffering patient finally come to rest. Now he looked like Nige; artist, designer, husband, father, lover, friend. We had lost that Nige some months ago, of course, but the mourning of that loss had never really happened. We thought it had but we were wrong. I thought my heart couldn’t break anymore but it did. It shattered beyond repair. As I looked at our two boys, I saw their hearts go the same way.
“He’ll never really leave here will he, he’s everywhere.” 
And Gabe was right. As I gazed around the bedroom, Nige’s art work gazed back. His books filled the shelves and his personality shone out from every corner. That was just one room.
We again went downstairs, awaited the arrival of the undertakers. Alex turned up first, and what a lovely sight that was! He hugged us all, made tea and paid his respects to the man who had driven him to Guildford many a time and who had ensured that he and Gabe had a cupboard full of food before he left them to their studies.
It was after 1am that the undertakers got here. We followed them upstairs – like ducklings really, the three of us in line. Harry cleared the landing and stairway as we left them to it.
“Should we follow them out?”
“I don’t know. Should we?”
“I think the fact we’re finding it so hard means we probably should…”
We did. They carefully carried the body-bag down the steps with us trailing behind, bravely. At the bottom they interred the body in the black Private Ambulance. The road was quiet and empty, not a soul was there to witness Nigel’s last journey from our home aside from Harry, Gabe, myself and his own. It felt perfect. It felt calm. It felt right.
If the first was Nige the patient and the second was Nige the man then this was just the body. Seeing it like this has enabled us to deal with the funeral arrangements with a certain detachment. We know the body in the chapel isn’t Nige; that he is forever here, with me, with the boys, in our lovely little home on the edge of Bathampton woods.
*
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Diary

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.

 

 

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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

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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4 Days on MAU Ward

FRIDAY

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

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

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

I remember you, don’t I?

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

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

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

 

SATURDAY

Come on Gabe!

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

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

He’s not moved yet but we’re hoping…

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

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

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

 

SUNDAY

 

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

Oh, we have a lovely lady!

That’s my wife!

Well, that’s no good to me is it?

No, but it’s good for me!

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

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

You know Trump don’t you Lise?

Well, yeah, of course I know Trump!

Well, she’s got his ‘air…

She did too. Uncanny actually.

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

 

MONDAY

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

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

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

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

Your daughter’s sorting out my phone!

She’s not my…

Shhhh…!

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

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

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

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

 

 

 

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Diary

Dear, well you know who you are,

6

 

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.

dear-whatever-doesnt-kill-me-im-strong-enough-now-thanks-614a9

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Diary

Dear, well you know who you are,

5

We’ve just celebrated Nigel’s 54th birthday. The boys really pushed the boat out on this one, knowing that I had to keep my budget low I shouldn’t wonder. Mum opted for a cash gift which will buy an expansion set for one of our favourite boardgames, Tokaido, in the near future. My gift arrived looking like someone had bled all over the packaging – a lot. We all decided it must be red paint and quickly moved on! So what have we been up to since Christmas Eve then?

Christmas was wonderful. Lots of games played, food shared and fun had. New Year was a tricky one – it is every year. Gabe went out but Harry and Ali stayed in. We raised a metaphorical glass at the top of the garden (even Nige managed the hike up there) and watched the numerous fireworks from Bathford to Odd Down. In the dark no one can see you cry, which I did, onto my sleeve. It’s all very well saying farewell to a shit year but when the one you’re welcoming in has such uncertainty attached to it, well, there’s no joy in that. Not one bit.

 

January 2017

We started the year with optimism. A trip to the cinema to watch Rogue One was a definite boost for Nige, who had an upset stomach and was anxious whether he’d get through it without running to the loo. He did but he was slightly overwhelmed at the digitally reproduced Princess Leia that appeared at the end of the film… Carrie Fisher’s death affected him hugely at the end of 2016.

A week after that we met the very delightful Verena. She’s the masseur I mentioned in My Person Advent. A friend of mine had so kindly bought Nige and I a Holistic Massage each. We had to wait at least a fortnight after the last Chemotherapy session (Christmas Day) as those particular toxins need to stay in Nigel’s system and the massage would expel them. It’s fair to say that on meeting Verena I loved her immediately. A genuinely kind soul who just wanted to give a couple she had never met before some much needed respite, a sort of warm, fuzzy hug with essential oils. As Nige waited in the room next door, I gently poured my heart out to her. Not entirely, I think; I automatically hold back but more than I had to anyone else. The massage was wonderful. Silent tears whilst having all the taut muscles in my back, arms and legs manipulated was extremely cathartic. After an hour we swapped. I smiled as I could hear Nige nattering on throughout his hour.

‘All my male clients do that. Well, apart from my boyfriend…’

Before we left, Verena had booked us in for another the following week – no charge. She even offered to visit us to massage Nigel’s legs when they become cramped. You see, Angels do exist but they’re not ethereal, they’re people, they’re in all of us.

On the 25th we started the 6 month Chemotherapy treatment. We were surprised to realise that it would be oral again. I had assumed we’d be coming in everyday for 5 days of the month to receive it through a drip or something. This was quite a nice revelation though. So 400mg for the next 5 days. Nige still has an upset stomach, loose bowels mainly, no vomit. I do too, I hasten to add but as I’m not doing Chemo, I’m coping marginally better with it!

 

February, 2017

Well, what a shitty month – literally. We can get through this one in just one paragraph I think. Nige continues to feel poorly – I’m putting it down to the Norovirus which is absolutely rife at the moment. Even Harry complained of a stomach ache. However, his turned out to be Appendicitis… I took him into hospital on a Saturday, at 2pm. He was having an Appendectomy by 6pm. In between I went back home to see how Nige was doing. He’d been sick a couple of times and hadn’t really eaten anything. Back at the hospital for when Harry came out of recovery at about 10pm. My little soldier, putting on such a brave face. The surgery had gone really well, but his appendix was a mess – gangrenous in fact. The infection had started moving around to his back and if we’d left it any longer we would’ve been dealing with peritonitis, which is a whole different ball game…  At least there’s a bit of luck on our side. By Monday he was back home, along with Ali. Happy days. Amongst all this was our next trip to Oncology and our next dose of Chemo. We asked about Nigel’s fatigue and stomach bug.

‘The fatigue and breathlessness is a side effect of the radiotherapy.’

‘But we finished that in December!’

‘It can take 3 months for the side effects to be felt so it’s perfectly normal for you to feel this way. With the bug you need to drink plenty and rest…’

I am continually reminding Nige of that last quote…

 

 

There, we’re up to speed. Well, almost. I’ll give you March another day. It’s already been up and down so be sure to tune in!

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