FOREST HOLME HOSPICE

hospice (noun)….”A home providing care for the sick or terminally ill”.

I first set foot here about eight or nine years ago. Elaine had had a terrible reaction to the chemotherapy drugs and steroids she was then taking.

They de-stabilized her mind causing massive anxiety and horrific panic attacks.

As she gradually got over all this she wanted to have counselling and having seen what her illness had put me through insisted that I go too, though separately from her.

I really didn’t feel that it was necessary for me, but Elaine pulled the “Please do it for my sake” card so my fate was sealed, and an appointment was duly made with Linda.

I clearly remember sitting alone in the waiting room thinking “What the fuck am I going to talk with a complete stranger about for the best part of an hour”.

Linda appeared on time. Middle-aged, slim, neatly dressed with short well cut grey hair and kindly inquisitive eyes.

We went through to the counselling room where I had to fill out a questionnaire about myself. I well remember the one asking “Have you had suicidal thoughts?” –might answer that differently today!

When this was all done we sat facing each other and Linda said, ”Well Mark tell me why you’ve come here today.”

I almost replied “Because Elaine told me to” but it was too early in our relationship to be flippant so I began with Elaine’s history of cancer and it was honestly like spitting petrol on a candle flame.

I didn’t stop talking, it just poured forth. Poor Linda hardly got a word in, but she was very patient and we went on to see each other over several years.

It was so easy to give up despair and fear to someone who is at first a stranger and later, not quite a friend, but who you know understands with impartially. I never regret going to this day….reckon I’ll be back again soon.

Monday 21st December pm.

Elaine and I complete our journey to the hospice arriving there about 1:15.

Since we turned onto the main road Elaine has seemed asleep most of the time and we have not spoken. I don’t think she was asleep that much, more pretending so as to avoid conversation which really could have had only one subject matter, ie our destination.

I’ve parked opposite the hospice as the little car park is already full. As I help her out Elaine’s weakness and fatigue is evident and I gather up her bags quickly as she slowly makes her way to the front door.

My phone rings.

“”Hello Mark? It’s Dr Chakrabarti here.” (Elaine’s oncologist in Poole).

“I’ve been informed that Elaine is being admitted to Forest Holme Hospice sometime today.”

“Yes that’s right we’re here now – just about to go in.”

“I see, I think this is the right course for her now, it’s the best place for her to be.”

Oh God, he’d just as well have been stood in front of me and kicked me straight in the balls.

His saying that this is the right place now for Elaine to be, is like an official confirmation of her fate.

A rubber stamp if you like, signed, sealed and delivered to death.

I’m reminded of Pilate, washing his hands as they led Christ away to the cross. It’s unfair I know. If it wasn’t for this man, his team, and their dedication, Elaine and I would never have gotten this far, it’s just the timing that’s at fault.

“OK Doc – thanks” I manage to say, and hang up.

“Who was that?” asks Elaine.

“Doctor Chakrabarti” I reply.

“What did he want?”

“Just to wish you well.”

“That was nice of him.”

“Yeah.. it was.”

We’re at the door now and I press the buzzer for admission.

Inside we are greeted by Sister Gill and one of the nurses.

After passing our temperature checks for Covid 19 they lead us through a short corridor to what is going to be Elaine’s room-number 9.

We pass through odd sized double doors, one containing a small curtained window, into what is quite a large room.

There’s an easily washable fake wooden floor throughout, and a large window taking up most of the wall opposite the doors. The window blinds are up.

A wet room with shower and loo is to the immediate left, and a basin and bin next to the door leading to it.

The room is dominated by the large hospital bed at its centre. A chest with drawers is off the end of the bed with a flat screen t v on the wall above.

Between the bed and the window is a huge electric reclining chair. Its bizarre colour scheme of bright blue and baby shit brown can only have been decided upon late on a Friday afternoon, when all other options had been dismissed.

I do not realise at the time just how familiar this chair and I are going to become.

Directly in front of the chair there is an outside door, leading to a path which I later discover goes around the building and to the car park.

Outside and opposite this door there is a tiny patio area with an even tinier metal table and a single metal chair.

I assume this set-up was for the smokers, so they could suck cancer into their lungs whilst their loved one in the bed was trying to cough it out of theirs.

I note there is no ashtray now.

I put her bags down on the bed as Elaine sits down in the chair.

“Would you like a few private moments before you go Mark?” asks Gill.

“Please” I reply.

So Gill and her companion retreat and close the door behind them.

I sit down on the bed and take Elaine’s hand, she speaks first. ”Thank you darling.”

“What for?”

“Getting me in here. I feel safe here, they’ll know how to get this pain under control, we couldn’t manage it at home anymore.”

We are sitting looking directly at each other.

Elaine continues, ”I’ll be ok Mark, this is the best place for me to be right now, I know it is.”

(The words of Doctor Chakrabarti from a few minutes ago come back to me ,”It’s the best place for her to be.”)

There wasn’t a hint of self pity in Elaine’s words, no fear either. But it was a bloody hard job for me, fighting to keep back the tears, I just didn’t want to leave her there.

Sensing this she continues” You’d better go now Mark. Have you got something for your tea?”

“Eh…yes, no..I’ll stop in Wimborne on the way back and get something.”

“Make sure you do, don’t just go home and drink a load of Stella’s.”

“I’ll drink the Stella’s anyway but I will get something to eat.”

“OK babe then I’ll call you later.”

“You know I won’t be able to come and see you for a while?”

(No visitors are allowed due to the pandemic situation. There may be some leeway on this for Christmas day only, but that’s four days away.)

“I know Mark, but I’ve got my phone so we can still talk to each other, I’ll be alright. You’d better get going now.”

“I love you darling.”

“And I love you to, and drive careful.”

We kiss, and then again, and I kiss her hands. Then I walk round the end of the bed to the door. Pushing it open I turn back to Elaine and mouth the words I LOVE YOU.

She smiles and waves as I close the door.

Gill and the nurse are waiting there. I don’t know which of them reached me first as my knees just went and I slumped against the wall crying like a child whose toys have all been broken on Christmas day.

The voice was there again, deep inside. ”You know she’ll never leave that room alive.”

And the bastard was right.

To be con’t…

A Drive in the Country

Elaine always did say that the saddest thing when doing a house clearance was coming across the Christmas decorations. “These people never knew when they put them away that it was for the last time ever.”

We had to keep many of them so that they would ‘live-on” somehow, or so she thought. Consequently our own trees used to groan under the combined weight of so many other people’s Christmas pasts.

Eventually she was forced to purchase a seven foot artificial tree with a metal frame and limbs that could handle the annual load. Testament to it’s being one tough son of a bitch, is the fact that when we got Sammy and Rita as kits’-four years back- they lived in it for two weeks, only coming out for food or a crap or when captured at bedtime.

It’s well over twelve years old now and still going strong.

Monday 21st December.

“Do you want to open Christmas presents now in case you’re still in the hospice on Friday?” I ask Elaine.

“Do you think I will be?” Her voice is steady but quiet.

“To be honest yes” I reply.

“OK, just a couple maybe”.

I am looking at my wonderful wife of almost twenty five years. She is pale and fragile and obviously physically weak. We’ve just been through possibly the worst night of our lives together. Her painkilling meds’ aren’t working right and she has suffered so much because of it.

The pain has eased somewhat, but the vacancy is being filled by fatigue and mild confusion. Cancer is on the move now regardless of us believing it or not.

There’s not much time as we’ve got to be at the hospice in less than two hours. But I don’t want to rush these oh so precious moments that are left to us.

Elaine has always been like a big kid at Christmas. She loves everything about it especially the presents and always has to have a present on Christmas Eve to placate her until the big day.

Her ‘big’ present this year is a Samsung Tablet which I bought with the help of our good friend and IT expert Bob. He’s got it all set-up ready to go, we switch it on and she runs her fingers lovingly across the screen.

“I’ve always wanted a tablet. Thank you darling.”

There’s also a couple of items I bought from the other Vintage Barn sellers and a metal watering can shaped like an Elephant that she saw in the Summer and just had to have.

I can never be certain about presents for Elaine. She loves the off- beat and quirkiness in things most of all, (don’t quite know what that says about me!!).

I change clothes and leaving Elaine to get ready, go downstairs. My insides are in complete turmoil. That voice inside me is talking again;

“You’re taking your wife to a hospice. That’s the Last Chance Saloon, isn’t it? People go there to die don’t they.”

This can’t be real can it, CAN IT!

Twenty minutes pass and I go in search of Elaine.

She’s sat on the floor of our spare room, her work room, packing material into a large ‘boot bag’.

“What are you doing love?”

“I want to get this ready for Liz, to go with the rest.”

Liz and husband Jack are fellow Vintage sellers and Fair organisers. Elaine has asked them to come and collect all of her material and costume stock as she knows I won’t know what to do with it if she is not here.

“We’ve got to get going Elaine.”

“It won’t take long.”

“Leave it darling, I can sort it out with Liz when the….if the time comes.”

“It’s just…”

“Now sweetheart.”

“OK help me up.”

I collect her bags and other items, including the Tablet, and go downstairs.

Elaine follows slowly and stops halfway down the stairs to catch her breath. Watching her I feel fear nibbling at the shrinking hope inside me.

She walks straight through the kitchen to the far door and goes outside. I follow and lock up behind us.

I notice she hasn’t said goodbye to the cats. Nor does she look about her outside. She just looks ahead of her and keeps walking, this is totally out of character.

Normally she would make some comment about the trees the garden or the sky. She’d look for birds or gaze across the park. She was always observing life, looking for fuel for her writing and the inspiration of new ideas.

I open the gate and then the car door for her, and help her in.

It’s time to leave, and I’m sure now Elaine knew well enough that for her it was going to be for the last time.

Now there are two routes open for us to get to the hospice.

The most direct is through the park then turn left out of the security gate and drive up to meet the main road. To turn right is to follow the route taken by Elaine every morning and evening to get to Bruce.

It’s a journey she had been doing for several years, until recently.

It follows through a narrow country lane leading to a winding country road for just over two miles.

Not long ago Elaine said she wanted to take the car one morning and drive this way again just to remember Bruce and for the love of the trip itself. His death hit her extremely hard, I don’t think I realized quite how hard at the time.

She has her eyes closed as we pass out of the gate and turning right head downhill.

We finish the narrowest part and turn onto the slightly wider section.

At any time it is a captivating drive.

In Spring Summer or Autumn, the colours smells and sounds vie with each other to dominate the senses. But Winter bleakness gifts it a beauty born of desolation and quiet solitude.

The green of the damp fields shows bright against the grey and muted browns that make up everything else. The air is fresh, but not cold, and the sky white rather than blue, shows a vibrant life of its own to the world below.

A bump in the road, and Elaine opens her eyes and looks around.

“Do you know where we are?” I venture.

“Yes…yes I do.”

She’s looking all around now, like a child seeing Wonderland for the first time.

That fabulous sunshine smile dawns over her face. It can’t mask the truth of her condition but it brings its own light to force reality briefly away into the shadows.

I feel the lump in my throat as if it were real.

We pass hedgerows and fields so familiar. There’s a particular meadow beloved of swans and many other birds and Elaine cranes her neck to see into it as we slowly drive by.

Her blue eyes, wide open now I notice, have a gentle milkiness to them but no sign of tears. The smile shines on. If she is feeling any pain it’s been diluted in a sea of unexpected happiness lapping on the shore of memories.

I thank God or whoever for our coming this way.

We cross the narrow stone bridge over the river and head into the village beyond. Elaine closes her eyes but the smile remains and I know she is ahead of us now and turning into the yard to see Bruce waiting at the stable door.

The voice inside me is saying that she knows this is the last time she’ll pass this way. Deep inside you know it to, that’s why you chose this route.

But I don’t want to believe in voices or intuition or any such bloody thing, they can all go to hell for all I care. We’re a team Elaine and I, and you can’t have a team of one. Who’s Bonnie without Clyde? Butch without Sundance?

I will not believe in her dying, I just can’t. But the voice is persistent and getting louder.

We re-join reality at the main road and turning left, head towards Poole, and the hospice.

To be continued…

A NIGHT TO REMEMBER(?)

 I can’t believe that she’s gone. I was there when she died.

 I’ve seen her dead in her coffin.

We’ve had her funeral, but I still can’t believe that she is not going to burst through the door any moment now saying “YEA! fooled you all. Now which miserable sods didn’t cry or send a card”.

Sunday 20th December. Elaine goes up to bed about 9.30. She’s been on the go all day, as much as depleted energy levels will allow. It looks to me as though she is tying-up loose ends, getting things in order.

She is back downstairs inside an hour.

 I say the stupidest thing possible, “You ok?”

“No, I just can’t get comfortable Mark. I feel bloated and my tummy and back have started to hurt like hell. I’m up to date with the pain killers. Just wish they would bloody well start working”.

She is on slow-release morphine based meds’ plus morphine sulfate liquid as a back- up.

Elaine feels thirsty so I make ginger and lemon in hot water, a favourite, but it is hardly touched. Any attempt to eat or drink and she gets awful acid reflux and violent hiccups.

We sit and watch TV for a while. Christ knows what was on, I don’t remember.

Elaine becomes more and more restless. She tries sitting on the stairs, in the kitchen, lying on the floor and back to the sofa. Nothing seems to help her as the pain level creeps upwards.

“You go to bed Mark, I’ll shout if I need something.”

So I go upstairs but sleep and rest elude me entirely. I hear her moving about and after half an hour or so I go back down.

One look tells me this is getting bad. Elaine has never been a complainer but if ever desperation had a face I’m looking at it now.

I suggest more meds but Elaine tells me none is scheduled for another two hours.

“Bollocks to that you can’t put up with this lot, take another 2.5ml now at least.”

She doesn’t take much persuading, so I prepare the syringe and she swallows the sickly sweet liquid and rinses her mouth with the offered water.

We wait.

We try bed together for a while but the result is the same. Elaine has to keep moving to try and stop the pain from catching up with her.

We’re back downstairs by 1.30.

Time comes round for the slow release meds but over an hour passes with little relief to show for it. Elaine calls the emergency helpline direct to the Hospice and speaks to a nurse who advises another 2.5ml of the liquid. There is concern that Elaine’s medication is not working correctly.

(We find out why later in the week).

It’s difficult for me to express here how utterly helpless I felt. Here was the person who I love more than life itself, yet I could do so little to help her at this wretched hour.

Why do these things always happen in the middle of the fucking night?

When I was in my early teens my mother started to suffer severe asthma attacks. I well remember the look of hopeless desolation on my father’s face as we watched mum fight for breath on so many occasions. We could do little to help and it always seemed to be worse in the early hours.

I knew if I looked in the mirror now I would see my dad.

At 4.30 I ring the Hospice.

“Hello’ yes Mark, my colleague spoke to your wife earlier. She should be having a better response to the pain relief by now. If she were my patient here I would give her another 5ml of the liquid now. It may take up to an hour to kick-in, the only other option is call an ambulance and get her to hospital.”

“Hospital?”

“I’m afraid so. We can’t take her in tonight. I’ll put her down as an emergency case for the Macmillan nurses, they’ll contact you after nine o’clock in the morning.”

I hang-up. Hospital, A&E no bloody way! We’ve been too many times before.

If Elaine ends up in A&E with all the Covid-19 restrictions I can’t stay with her, she’ll think she’s been abandoned, this next dose just has to work.

She’s sat on the edge of the bed when I go up.

“What did they say?”

“Take another 5ml now, another 2.5 in two hours”.

“Are you sure?”

“If you don’t take it I fucking will, it’s that or A&E.”

This is all the coaxing she needs and the sickly liquid is quickly dispatched.

We sit together on the bed, Elaine takes my hand.

“I can’t continue like this darling, I need to be somewhere where this pain can be controlled”

“That means Hospital or the Hospice”.

“It’s got to be the Hospice. If I go to Hospital I might catch Corona Virus and die. Then the cancer would be so pissed off.”

We both giggle, then sit in silence. Later she goes onto the landing and curls into a ball on her side.

I feel so helpless.

Elaine has the other 2.5ml around 6am and settles sitting upright in bed. She now seems sleepy, also slightly confused. I put it down to the medication and am just grateful we seem to have dodged A&E.

Downstairs I make coffee and leaning on the rail of our Rayburn cooker I look into the mirror above it. My hair is now so grey (when did that happen?) and my skin appears to have a misty morning tone to it, but it’s my eyes that hold the attention. They are completely without any light whatsoever, none from within and none reflected back. Just soulless hollows looking back at a lost soul.

I turn away leaving the glass to its own reflections and pour the coffee. I don’t eat, breakfast is the mouthful of fear I’ve been trying to swallow all night.

I’m back upstairs at 8am. Elaine has been quiet for some time and I find her propped up in bed eyes closed. I’m not sure if she is sleeping but deciding not to disturb her I sneak back downstairs.

The phone rings just after 9am.

“Hello Mark? My names Hazel, I’m one of the Macmillan nurses. Sounds like you’ve had a rough night?”

“Bloody awful Hazel, we can’t do another like it Elaine needs help.”

“You both do Mark. Do you think she would be happy to come into the Hospice?”

“Yes she’ll be ok with that.”

Right, I’ll try and make the arrangements this morning, will call you back after 10.”

Upstairs Elaine is awake.

“Who was it?”

“Hazel, the Macmillan nurse, she’s trying to get you into Forest Holme. She’ll call back after 10.”

“Thank you darling.”

Julie, Elaine’s best friend, is coming round at 10.30 for the traditional Christmas present swap. I ask Elaine if I should cancel, but as always she wants to see Julie very much so the arrangement stands.

At 10.15 Hazel calls to say a final decision on Elaine is yet to be made and she will call back after 11.

Julie arrives a bit late due to a fallen tree blocking the local road. Her smiles disappear as I tell her the situation. She fixes them back when she goes upstairs to see Elaine.

I make tea and Elaine tries some, but 2 sips and the acidy hiccups start again and she leaves the rest. She seems very weak. Julie and I communicate with silent looks.

Hazel calls back shortly after 11.

“Hi Mark, all fixed, Elaine can come in today. They want her here by 1.30 at the latest to start some blood tests. She’s only being admitted for assessment at the moment, not palliative care. Shall I arrange an ambulance?”

“No don’t worry about an ambulance Hazel, I can bring her in myself.” (An idea is forming in my mind).

“Ok Mark if you’re happy to do that fine, but please be here by 1.30.”

“We’ll be there, thank you, Hazel”

“It’s why I’m here, good luck.”

My idea is a slight deviation off the direct route between home and Forest Holme.

I go back upstairs to where Elaine and Julie are now opening presents. They look up as I come in.

“Pack a bag, we’re off to the Hospice.”

To be continued…

INTO THE ABYSS

As you will know by now Elaine has gone, but the end of her story has not yet been told. I’m Elaine’s husband Mark, and as I am now the ‘last man standing’ from the Blog title, I guess it’s down to me to complete the journey with you that she began just a short time ago.

There are two reasons for my doing this:

 1. Elaine herself. To leave things just hanging and unfinished was not her style. She loved writing and the interaction with her readers, and I believe telling of her struggle to stay one step ahead of cancer, intermingled with observations on life and her surroundings really did help to make sense of what fate was casting her way. I know she would want to see the final full stop in place.

She asked me on several occasions to contribute to horse husband cancer, “They’ve heard from the horse, the cancer and from me. I want them to hear something from your side, but I can’t say it for you.”

I simply never got round to it, and neither of us would have envisaged these circumstances for me to begin.

2. Myself. You would think after thirty years to practise I would be fully prepared for Elaine to die. But let me tell you that no amount of prep’ can ready you for the total and utter finality that is death. The fact is she isn’t coming home again, but it’s a fact that I just cannot at present grasp or believe in.

Elaine was simply my world, and I’m left feeling like some future space traveller, able to stand on the event horizon of a massive ‘Black Hole’ , I’m staring down into the abyss to where my life, love, hopes and dreams once existed, but there’s fuck-all left, empty, gone stolen away, and I’ve not a clue as to where to begin looking for any of it.

Maybe writing this will bring me some ideas.

Please understand that I am not the eloquent wordsmith that my wife had become. The only way I can do this is to tell it using my own words and language- I won’t praise it by calling it a style! I have help with the more technical side of this but words, expressions and emotion is 100% me. The events are true.

Elaine was quite candid and open about her illness and treatment, so I’ll carry on in the same vein. Her last post was December 10th, so we’ll pick up the reins from there; Elaine had not eaten properly for some time, nor was she drinking a great deal. She had awful acid reflux and recurring hiccups that was getting on her nerves as much as it was getting her down. Her abdomen had become very swollen and painful. There was also pain in her lower and middle back.

She had a high pain threshold so if she said something was hurting, I knew it had to be pretty bad. We assumed the bloated tummy, (“Looks like I’m full term with twins!”) was due to IBS caused by all the steroids she was on, to counter internal inflammation in turn caused by the Targeted Therapy, but this proved not to be the case.

It was one of the Macmillan nurses who first mentioned a condition called Ascites. This is a build- up of fluid in the lining of the abdomen. The cancer stimulates an over production of this fluid and as Elaine’s lymph system was badly compromised by tumour growth it could not rid her body of the excess. It simply stores the fluid where it can, hence the bloating and the pain. An ultrasound scan confirmed all of this. The fluid would have to be drained.

She had an overnight stay in hospital where they drained off 5 litres of fluid. A week later it was all back.

Always before it had been the treatments to halt the spread of cancer which had caused Elaine most of her health problems. What was happening now meant we could no longer keep our heads in the sand, it was apparent the cancer had upped the game and was cruising in overdrive around her body.

An arrangement was made for Elaine to have a semi-permanent drain fitted. She was quite pleased with the idea of this solution saying to me, “Isn’t it strange how things become appealing when the choices are so limited.”

And so the date and time was set,- and then un-set, as corona virus put staff out of action her op’ was cancelled and re-scheduled for Tuesday 22nd of December.

Lack of sleep was now the norm for both of us. Elaine would go to bed around 10pm, and then be back downstairs about an hour later. She then would try to get comfortable on the sofa or maybe sat at the kitchen table. The painkillers she had seemed to be fighting too much of a rear guard action. She was becoming desperate now as the fluid building up was causing the pain and discomfort to increase rapidly.

I came downstairs one night around 1.30 to find her sat at the kitchen table. In front of her was a small jigsaw puzzle of a plate of Brussel sprouts. Trying to get her mind focused on this was her way of distracting herself from the discomfort and reality of the situation that was now unfolding.

I sat beside her and we tried a few pieces of the puzzle together.

She spoke first, “It’s not looking good is it?”

“Sprouts never do, even in a picture”.

“I don’t mean the fucking sprouts, you know what I mean”.

“Yes I know, I just don’t want to believe all this is true. I want to wake up from this shitty dream”.

“So do I babe, so do I”.                                                      

I went back to bed around 3.30. We’d got half of the ‘sprouts’ done by then. Elaine completed the rest on her own.

By Friday 18th the pain had reached new levels as the pressure from the Ascites fluid increased . Elaine was on stronger pain medication but the results were limited so the hospital brought forward her appointment to that afternoon and she was in there by 4pm.

Not allowed to visit, I didn’t see her until I picked her up 24 hours later. When Elaine came  out I was full of hope, but this was dashed when I saw her. She walked very slowly and looked so tired and weak. The drain and a small bag with a tap came with her. Nearly 4 litres of fluid had gone already.

“Don’t expect too much Mark, I’m not so good”.

Her words were flat and toneless and I helped her into the car without comment. She wanted to go home via the Christmas street lights in town, she always loved to see them.

A voice inside me was screaming, “She knows it’s the last time.” Somehow I managed to silence this liar.

Despite more painkilling relief Elaine suffered another bad night being unable to sleep for no more than about 45 minutes at a time. Sunday morning saw some relief, as an early call to Macmillan at the Hospice resulted in permission to increase the morphine dose, she even managed a couple of hours sleep.

Elaine kept herself busy for much of the day, at least as much as the fatigue allowed, even now she refused to give in to a situation which would honestly have floored most mortals. The fluid kept draining.                                   

I wasn’t to know it then but that Sunday night would be our last ever at home together. It was an utter bastard…!”

To be continued…

I would just give my thanks for all of the lovely comments about Elaine after last week’s post. Also a big thank you for all your encouragement to me at this most  difficult time”. -Mark

Carrying-On

Happier times at the Goodwood Revival

Dear Readers,

It is with the deepest sadness that we have to tell you that Elaine Kirsch Edsall passed away peacefully on January 5th at Forest Holme hospice in Poole.  Elaine battled bravely against cancer for 30 years.

Her husband Mark was with her, holding her hand.  Rest in peace darling wife, dearest friend.  You remain forever in our hearts.

Elaine’s funeral was held on January 19th.  The words that follow were shared at that service.


Elaine’s words

“Despite the cancer trying to kill me at annoyingly frequent intervals, I’ve had a lovely life.

I only ever wanted to be with Mark, see my friends, spend time with my horse and do my work…and that’s exactly what I did.

Without the depth and strength of Mark’s love I couldn’t have lived so long; I didn’t know it was possible to love and be loved so much and feel so utterly content in his arms.

My wonderfully loyal inspirational friends who carried me over bad times, rejoiced with me in the good, cried, laughed, giggled, healed, and have always known the best answer to any problem was cake. My life became so much richer because of you, so much better.

Generous horses found me in unexpected ways. They taught me to reach inside myself and find a simpler way of communicating. To listen. To feel. To find my Quiet Place. They showed me joy in small achievements and that no matter how often you start over, it’s where you end that counts.

I nearly became a horsewoman; I ended in exactly the right place to start again next time around.

Work was never really work. I loved the excitement of buying stock, even when doing so meant getting up at some ungodly hour. I loved setting up stalls and selling, but most of all I loved organising the vintage fairs. All the people coming together to create a wonderland, and all the people coming to buy and saying how much they enjoyed it.

I’ve had the pleasure of indulging my passions throughout my life, I’ve made the best of what landed at my feet, and now I fully intend to make the most of dying.                                                    

I’ll leave you to carry on living for me.

Make sure it’s good.”


Mark’s words

“It’s strange how a life changing moment can arrive hidden in a seemingly ordinary day.

Such a moment came to me some 31 years ago, when I went to help paint a cottage, outside of Wimborne.

On the second day, I heard the words “Hi I’m Elaine” and I looked up.  Before me stood a vision in tight blue jeans and a tee shirt, with masses of curly chestnut hair, bright blue eyes and the most amazing sunshine smile that simply lit up my world.

I was lost for words- a rare occurrence- and little did I realise it then- but that smile would be lighting up my world for the next 3 decades.

We bonded over cigarettes and tea, became friends, fell in love and married some 5 years later.

Elaine lived life at full speed; she was always on the go, rarely resting except when she was actually asleep. I was soon roped in to her world of Antique and later Vintage Fairs, Auctions, Boot Sales and later house clearances.

Elaine did the planning- I did the more practical stuff and as we each found our levels, we worked better and better as a team. We must have spent more time with each other than many couples who have been married twice as long as we were.

Elaine’s other great love was her horses. Her last, Bruce, was an injured challenge when she got him but typically, she would not give up on him and he owed his last 11 years of life to her dedication. She was the first to acknowledge what she owed to him. As her health suffered, his needs, both physical and psychological, kept her mind focused on him and away from the darker areas of her own situation.

In her last years, greatly encouraged by horsewoman, author and friend Anna Blake, Elaine turned to writing and discovered a new talent with words and story-telling.

She had work published and also wrote a weekly blog: “A horse, a husband and cancer”, which was full of her wry observations on life, death and all the quirky stuff in between. It was hugely well received. Elaine was working on a book of her life and experiences when she died.

Cancer was ever present in our relationship, but Elaine refused ever to ‘wear it like a badge’. She would say “I want people to see me first and not the cancer”

 Some people would come forward with sympathy when they found out- but Elaine would have none of it. There was no time in her world for lowered voices and hushed tones. She just wanted to get on with life and let the possibility of death stay suspended in the background- almost out of sight.

I have lost count of the number of hospital visits, scans, operations, procedures, radiology and chemo she endured. Yet there was no self- pity or “Why me” from Elaine. I knew that it was for us as a couple that she went through it all and it was for us that I stood by her side.

The only good thing about her illness was that it brought us ever closer together in a bond of love that remained defiant to the end. “I won’t be scared if you are there with me” she once said about dying and I promised her that I would be there.

I stayed with her at the Hospice to make damn sure that I would be there and it was a bittersweet privilege to hold her hand as her life gently faded away.

She wasn’t afraid of dying. She would say; “I’m going off to start a new adventure- it’s just that I’ve got to start this one on my own.”

Life was one long adventure with Elaine. There was laughter and tears, hope and despair, humour- mostly black- and tons of love.

I have been blessed beyond words to have had such a partner to love and be loved by, and with whom to face life’s challenges head on.

Elaine promised me that she will be there when it’s my time to go. Sat in the stillness of the hospice at night, I pondered on how this reunion might take place:

I think I’ll ‘wake up’ by the large copper beech tree in our driveway and I’ll walk down towards The Lodge. The truck will be parked outside and fully loaded- in fact it will be overloaded. Elaine will be sat in the passenger seat. She’ll wind down the window and say:

“Come on Ted, where the Hell have you been, we’ve got a fair to go and do.”

I’ll look at the back of the truck and as always, there’s enough to fill several stall pitches… But I’ll just sigh inwardly and walk round to the driver’s side, all the time hoping that she’s remembered the cold beer and Indian takeaway for later on.

I’ll climb in beside her, start the engine, beep the horn twice, and we’ll say “All aboard the Skylark”- A silly ritual we shared and I will look over towards her. And that sunshine smile will come and light up my world once again.

 Then we will be off and it’s the start of a new adventure together, only this time it’ll last forever. I can honestly say that I can hardly wait for it to begin.

Goodnight my beloved darling- don’t wander far without me.”


Elaine would want to thank you for reading this blog , and for the time being, I am going to keep the blog running, to tell how it was in those last days with her and to try and convey my own personal feelings  and my take on how things are now in my life without Elaine.  -Mark

half empty, half full or need a bigger glass?

Depending on whether you’re a glass half full, or a glass half empty type of person, I’ve either had a very good week or a very bad one. There’s been high drama, hospital procedures, a lot of humour, incredible kindness and emotional turmoil that’s gone beyond visceral and chartered the unknown territory of unbearable. I’ve been the centre of attention and I crave some peace.

I want what I can’t have. I don’t want to deal with what I do have. I yearn for what I had. I’m getting bored with cancer. It’s taking over my life (pun not intended).

A Horse A Husband and Cancer. The horse has gone, the husband is fragile and needs to work things through in his own way, and cancer is boring. So where does that leave us? It’s not the end of the blog by far, but I think it needs a tweak. It needs to find its own words again, because right now I’ve lost mine.

Midwinter melancholy is chipping around the edges, I’m dying on my feet and I need to start living again. If you’ll bear with me while I cast about looking for direction, we can grow together as friendships do when they move side-by-side through new adventures, instead of relying only on past experience. A Horse A Husband Cancer and Us. Its a start.

new month, new drug

A new cancer drug has a frisson of excitement impossible to ignore, and multiples of new drugs are excitement beyond belief. But as we’ve all found from experience, every yin has its yang, what goes up is certain to come back down (generally with a splat on your head), and as everyone with cancer knows, new drugs are huge divas, always accompanied by a gaggle of groupies touting side effects like there was no tomorrow.

My Targeted Therapy drug failed and in September I stopped taking it. It certainly lived up to its Wonder Drug epithet (after the first few months of hideous SE’s) but it gave up too soon for my liking. Its successor took a month to prove its mettle before floundering at the first fence; those fences might look flimsy but they’ve repelled everything to date including the test of time, so I bear it no malice.

Next in line is Carboplatin Platinum Therapy. Even dressed up as a fancy-schmancy Therapy it’s still a chemotherapy with chemotherapy pros and cons. I last used it in 2011 and it worked. These days it’s accompanied by a new level of support drugs which I’m about to road-test. Re-using a drug has the drawback that cancer might remember the best way to avoid a prolonged discussion, but these days slowing the disease is good enough. I no longer build expectations, re-cycling is very fashionable, and who am I to turn down an opportunity?

And so, through a long series of tiresome events (a whole other blogs-worth) I was sitting in a hospital bed on Tuesday having a blood transfusion. It’s a time-consuming affair, especially when the blood arrives some hours later than promised (did they first have to catch a donor?) and I’d already been in hospital for four hours before the bags arrived. Time to wait is also time to think, something I’ve avoided for the past few months, and here I was staring it in the face with nowhere to hide except watching Homes Under The Hammer on TV.

The debilitating abdominal and back problem I’ve had for the past few months is the first time in twenty-nine years my actual cancer has caused me pain. I’ve dealt with enough medication complications, side-effects, reactions, and over-ambitious treatment to make your eyes water, and nursed enough post-operative wounds to make Florence Nightingale proud, but until now I’ve never felt my body physically abuse its self. I’ve joined the generals making decisions and avidly read war reports, but I’ve stood outside watching the war raging within without stepping into the arena.

Since September, I’ve blamed everything except cancer growth for the pain. Some things rightly – high-dose steroids, gastritis, Bruce’s dying, IBS. As a result I’ve not dealt adequately with palliative care. Why would you need morphine when you simply have gas? I have never avoided the blatantly obvious to such an extent as I have for the past twelve weeks. Until yesterday, when I stared at it from a hospital bed.

If I’m being drawn in to war I need armour and fighting togs. My first weapon of choice is eight hours uninterrupted pain-free sleep, and regular bowel movements are second (I’m sure Boadicea never had this problem). Concise geography of the battlefield is an advantage because chemotherapy may carpet-bomb the entire site, but guerrilla battles will be fought in the rubble. I have yet to choose my fighting attire, suggestions welcome. I’m fighting For Us.

The palliative-care nurse visited this morning and I have a prescription for my armoury. I’m studying my scan reports against Dummies Guide to Anatomy to better visualise the cancerous-lymph-node barracks, along with the routes the outriders are scouting. Yes, they’ve gained ground, but it’s a war neither of us will win. It’s taking part that counts.

Cancer Under The Hammer? Cancer had better get his tin hat on. He’s gonna need it.

The Unappreciated Days Appreciation Society

It’s horrible not being appreciated, and nobody feels this more than Days do. We say we don’t like Mondays (poor Monday, he’s got quite a complex about it) and we can’t wait for our holidays, or Saturday, or Christmas day, and along the way we completely ignore the day we’re having, which can be just as special if we give it the attention it deserves. The truth of the matter is that Days suffer from massive expectations, and overload is common in their workplace. They need space to offload the stress of having to be Special and feel the joy of being Just Another Day. A weekday, a normal day, but a glorious day nonetheless.

Producing a stunning sunrise is a huge drain on Daily reserves. It has to be stunning and precisely choreographed, and unexpected OCD (Overcast Cloudy Day) can ruin everything. The sun must rise, breaking through optimum amount of cloud to give a rosy glow at the exact moment a flock of geese fly past, honking for home. As the sky turns from drenched dawn to azure blue, clouds are puffed into unicorn heads and poodle tails, and the air adjusted to reach ambient breakfast temperature. The morning chorus of birds begins, and then, at a single tap of the conductor’s baton, it falls silent.

Everyone scurries out of bed, into the shower, checks the weather on their phones and drives to work. The worldwide office switch-on reveals numerous screensaver pictures of sunrises and honking geese, while outside, Day taps vainly on shaded windows whispering “look outsiiiide . . .”

Lunchtime is not happy hour for Days. Two diva stars have demanded 24/7 shining, and Day has spent hours patiently explaining why this cannot happen. (Night really should exert more discipline). All this troubleshooting has made Day late getting everything ready for the crescendo of midday’s half-time score.

The best weather must be arranged because people don’t want to walk in the park in the rain or the blazing heat. Days and Weather politely exchange a Secret Santa at the Christmas party but inter-departmental collaboration was only ever viewed as cost-cutting, not a universal panacea, and in order to get a decent lunchtime forecast, Day has had to call in a few favours which will need repaying in kind.

Mid-afternoon is spent arranging the sunset. Planning starts early because there’s no overtime in a Day’s day, and sunset has to be spectacular. In between juggling shades of red-and-pink, paperwork has to be filed, a conference call fielded and ozone repairs overseen. The holes in the ozone layer might actually last if they were still allowed to use cotton-wool infill instead of organic thread, but Upstairs says no, and at least the endless cloud mending keeps the elves employed. A strict early evening deadline leaves Dusk and Evening holding the fort until Night arrives in all its starry glory, and Day makes a few last minute tweaks to the sunset before sinking into a comfy chair and having a well earned cup of tea.

Weekends are just as arduous. Perfect Days are expected for brides, Sunday walks, BBQs in the garden and outdoor activities. If things don’t live up to expectations the blame is laid firmly at Day’s door.

“Oh it was a terrible day.”

“Rotten day, nothing went right.”

“Thank goodness today is over.”

These comments resound through the ether making our Day want to sit and weep at the ingratitude, if only it had the time to spare. Days work a seasonal rota, one season on, one season off. No sick-leave or free weekends and burn-out is rife. Working practices are archaic, but training to be a Day is a vocation not just a job, and I haven’t dared mention the Holidays; Christmas, Thanksgiving and birthdays. Pandemics are not Day’s fault either, they’re a whole different department, but of course Day gets the blame for long lockdown days.

We on the ground must stop taking Days for granted. We could volunteer for Day Care; its easy work. Just send kindly thoughts for the Day itself, respect the work that’s gone into making each Day special and give thanks for those elven clouds and sunrises even if you don’t see them. Store precious memories from the red-letter Days, try to have a nice Day and carpe diem the rest. Lets appreciate all our Days and live them with open hearts! Days, we love you and we appreciate ALL of you!

Sammy Nutkins

Sammy Nutkins is a poet. He’s also a ginger cat, but we all need to find our own place in life even when it follows an unconventional path.

A particularly handsome ginger cat, with a slightly academic air and symmetrical marmalade stripes, eyes the colour of liquid amber (when they’re open), and an elegantly long tail which harks back to his Siamese ancestry. He is well aware ancient Egyptians would have worshipped him.

Being a poet cat brings numerous problems; Sammy’s main bugbear is his little sis Rita. Rita is tortoiseshell, as mad as a box of frogs, and as boisterous and in-your-face as he is pedantic and thoughtful.

When he’s not asleep, Sammy spends a lot of time sitting and thinking. Maybe he’s pondering rhyming couplets, or maybe he’s wondering if there’s time for a nap before tea?

A Time to Ode

A hearty breakfast and tummy tickles

then sleep on the comfy chair.

My little sister stalks the house until she finds me there.

She snuggles up and steals my space, snoring in my ear

and doesn’t move the whole day long, til supper doth appear.

The humans love to stroke and pet

we have to grin and bear,

always laying on our backs to show our tummy hair.

We’re tempted back to sleep some more, endorphins make us purr,

‘pon waking, we always wash and dry our crumpled feline fur.

Then sister says she wants to play,

running round the house

the humans shout and reprimand, they think we have a mouse!

I always win the fighting game, my stature is much higher,

then I need a little rest; in the comfy chair I retire.

But now the woodburner’s well alight

logs and hearth are warm,

to the fire for evening sleep, sis and I are drawn.

I sit and watch the flames a-flicker, and think of words that rhyme

I’d like to ode the whole day long . . . if only I had the time.

Back on Track

It hasn’t been easy since Bruce died. There, I said it. My horse died and I’ve been struggling. It’s taken me some time to admit I am only human after all. I seem to process things in hindsight. At the time I think I’m fine and then I realise it’s just me who believes that. Those I hold dear have held me close enough times to know how it works; I pretend I’m okay in the hope it’ll become reality. It doesn’t, and they’re there to catch me. Every time.

Things got more complicated than just Bruce because I don’t have a single life-shattering event, I have a series of them. Mark and I know by now to stay under the kitchen table until the world has stopped crashing. And then we come out with caution because snipers are more common than you think.

Shortly after Bruce died my routine CT scan showed the cancer meds had stopped being effective, and the cancerous lymph nodes in my abdomen had grown and multiplied. It sounds positively biblical. It’s tactfully called ‘progression’. I had higher hopes for this new Targeted Therapy I was on, but my cancer is a clever fellow and it only took him a year to figure out how to bypass blocked DNA. He’s got more adept at freeing himself from the ties of treatments as the years have passed. If it wasn’t cancer and it wasn’t inside me I’d applaud his brilliance. The thing he hasn’t quite twigged is if he kills me he kills himself, which is my rather black trump card. Unfortunately I won’t be around to say GOTCHA!

My inflammatory levels were running very high and I was on large dose of steroids to control them, which caused severe gastritis. The gastritis (inflammation of the stomach lining) was extremely painful and eating was difficult. My weight plummeted and the steroids stopped me sleeping; hungry and tired is a foolproof recipe for misery and along with the progression, it sent me into a spiral of OMG-I’M-GOING-TO-DIE. The fact everyone has heard it all before doesn’t make it any less real, to me at least. I looked gaunt and the bags under my eyes were more like portmanteaux than carry-ons. What I now know was referred pain from the lymph nodes pressing on my gut, caused constant pain in my back, sides and shoulders, and I wasn’t a happy bunny. It’s the first time my cancer has caused me actual physical pain, it’s usually caused by the surgery or treatments. I had to keep reminding myself that feeling shite is probably better than feeling dead, although at times it was a fine line between the two.

I had a consultation with the nice oncology Professor to explore treatment options including chemotherapy, and I’m afraid I swore at him. I keep forgetting I have limited treatment choices and I should be grateful there are still options. He said I could swear as much as I wanted, which just goes to show how nice he really is. A PET scan, a barrage of blood tests, and an endoscopic biopsy followed in quick succession before the Prof made his decision to start me on Fulvestrant injections combined with Palbociclib tablets. Neither are drugs I’ve used before so it will be interesting to see how their side effects compare with others. The injection is intra-muscular, which means a monthly jab into each buttock, and yes it is as painful as it sounds.

The culmination of everything has given me IBS. I look (and feel) like I have Winnie-the-Pooh’s big tummy, and to be blunt, the worst problem is gas. When it was trapped it was okay for everyone else but not for me, and now it’s liberated itself I’m more comfortable but others are suffering. This is one of the downsides of cancer they don’t tell you about.

I’ve spent two months at rock-bottom. I know Mark was worried sick about me and I was worried sick about me too. Last weekend, sometime between trying to fart quietly and pretending everything’s okay, I realised it actually is. Really and truly okay. This is as good as it gets. I trust the new drugs will work, my gut will recover its robust good humour and I’ll regain my strength and zeal for new projects. I’m back on track, just don’t walk behind me.