In New York

In New York

Sunday, 8 June 2014


So you know that Roch and I support a change in the law for Assisted Dying.  I refer you to my blog post (21/01/14) written on the occasion of the death of the beloved but fictional Hayley Cropper of Coronation Street. 
Roch was featured in an interview around that time in the Independent and I included a link to that article in my post at that time.

Recently, Dignity in Dying asked us if we would lend our assistance to the making of a YouTube video designed to raise public awareness and support the campaign for a change in the law. We agreed to help.

Roch and I believe that adults who are terminally ill should be able to choose the manner and time of their death. I speak of those who are of sound mind and able to make that informed choice. They should be permitted to have real conversations with their health professionals about end of life issues. I believe that this  would provide enormous comfort to those who are facing death. 
Public support is growing for a change in the law and my own view is that a lot of the opposition is based on fears that have no basis in the reality of the proposed changes and an ignorance of the safeguards which would be put in place. 

If you're not sure and want to learn more please visit the Dignity in Dying website here:

If you do, you will see a familiar face on their home page.

Roch is in no hurry to die. For me the thought of being without him is to imagine a future that is almost too bleak to contemplate. I try not to think about 'afterwards'. 
We have been married for 24 years and together for longer. You think I want him to die? 

I don't want to lose him but I don't want to see him clinging to what for him I know would be an intolerable existence, unable to move, speak, eat or drink, able to communicate only by blinking, connected to an artificial breathing machine.  For those  who choose this path, I absolutely respect that choice. Everyone is different. This is about making sure everyone has the right to choose. 

Such an existence is not what Roch wants.   But under the current law he doesn't have a choice. 

The YouTube video and link to Roch's story have been posted on Facebook and twitter but for those of you who haven't seen them, you can watch and listen by going to the Dignity in Dying website or tuning in on YouTube.

YouTube Roch's story - #untiltheend

You can find out more at

Please do watch and take the time to register your vote. Ask our politicians to change the law.

It's unlikely that a change will come in time for Roch, but wouldn't you like to have a choice, when you face your own death? I know I would.

Saturday, 17 May 2014


He is beginning to have to think about swallowing now. He tells me that he finds this disturbing.  He is still eating, he can still swallow, he just has to think about it, the way he has to think about breathing and eating at the same time. For years he has been drinking through a straw and he already has a PEG in place. Bolus feeds are part of our daily routine and yet the news that his swallow reflex is beginning to be affected fills me with dread in a way that no other change has done so far.  

He developed a cough on Tuesday. By the evening, Kate and I were exchanging worried glances. His cough reflex is not as good as it used to be. My head was filled with thoughts of ‘cough assist machines’ and ‘suction pumps’ but we don’t need those yet. Next day we decided to call the GP. Roch himself made the call, asking for an urgent appointment. He told the receptionist that he had motor neurone disease, had a cough and that this was beginning to affect his breathing. He was told that there were no appointments and to call back after 3pm. (Note: I have since spoken to the Practice Manager and they are taking this very seriously). At the time we decided that we could not wait and I made contact with our District Nursing Team. Once again, Community Matron Jo came to our rescue. A message was passed to her and she called me back. By lunchtime she was here to examine Roch (beginnings of a chest infection) and she had written a prescription for antibiotic suspension. I ran off to the chemist and he had his first dose within the hour. He has been feeling really lousy but today is much improved. I won’t lie to you, the experience was a bit scary and I think I’m right in saying he felt more secure with me around to look after him, so I took a couple of days off work. Truth is I wouldn’t have been happy anywhere else.

We are missing our Jenny, who has gone home to Australia for a few weeks. That’s right Jenny, no sooner have you left the country than he goes down with a chest infection. See? If there was any more proof that we needed you..! Jenny recently stayed over for a few nights while I visited my family in Dublin. She and Kate ably held the fort in my absence.  My Girls Friday (and Thursday and Saturday and Sunday..!)

We have a new addition to the ventilator – a humidifier has been supplied. This is necessary because after a night on the machine, Roch’s nose had a tendency to bleed. Apparently the delicate membranes in his nostrils were being adversely affected by the cold air. Now the air is warm and another part of the bedtime routine is filling the humidifier with clean, cool boiled water and turning it on before he comes to bed.

In other developments, he is finding it very difficult to lower himself onto the toilet safely now and so we must use the hoist not just to raise him from a sitting position on the toilet, but to lower him onto the toilet also. Standing at the wash hand basin, leaning against it for stability, is a thing of the past and he has begun to wash his teeth sitting down in his recliner, spitting into a beaker. Well, the good news is, he can still spit.

We have been busy over the past few weeks, working with Dignity in Dying to help with their campaign for Assisted Dying in the UK. You will see more about this in later posts and hopefully I will be able to update you next week.

I know that I have been absent from these pages and this has been commented upon. I can only say in my defence that often, when my mind is full of MND (see 'cough assist machines' above for reference) I try to take refuge in writing.  Sometimes the last thing I want to think about is our situation and so I try to lose myself in fiction.  On a good writing day, an hour can go by without me even noticing – and not one MND thought to the fore. I find that when I’m working on a story, I am thinking about it a lot of the time, so as I’m doing the routine caring tasks, like preparing the medication, the syringes for the bolus feeds; or carrying out household jobs like emptying the dishwasher, chopping vegetables, I’ll be working out whether my story ‘works’, how to finish or maybe deciding I need to change something. First opportunity it’s back to the notebook to jot down an idea, and then I move on to the next task. It occupies my mind. In a good way.

Despite the recent changes in his condition Roch and I are still planning ahead. We would like to reassure everyone that we have no intention of giving up. Roch plans to buy a Season Ticket for Brentford. Come on The Bees! We’ve decided not to do the whole journey thing to Ireland this year, as it ends up not really being much of a holiday, although lovely to see everybody! (Hint: You can come to see us.) Instead, I have booked a holiday for the four of us in Dorset for the first week in September. Many thanks to Mandy Garnett for her recommendation! It sounds just the ticket, and I look forward to some family time in a beautiful part of the world (Thomas Hardy country). We will stay in one of three specially adapted cottages, with all the equipment we need, a treatment room and splash pool. You can even order organic, pre-cooked frozen meals in advance. I ask you, what more can we ask?

Well, we could ask for Arsenal to win the FA Cup Final, I suppose.  For God’s Sake, bring home some Silver can’t you lads, for Roch’s sake!

Off to watch the match with him now…





Wednesday, 26 March 2014

NICE and the Qufora System (no, it's not a new solar system)

It’s time I updated you.  Roch is once more gainfully employed, albeit on a part time basis. Back in January, he was selected by the National Institute for Health and Care Excellence as a member of the Guideline Development Group (GDG) for Motor Neurone Disease. He was recruited following open advertising and he is very pleased with his appointment. A GDG is a group of about 15 healthcare professionals, researchers and patients and carers, convened to develop a clinical guideline on a particular topic. Proceedings, discussions and findings are confidential so we will have to wait until the resultant full clinical guideline is published to know more.

So far, he has attended one full meeting in Central London and one day of training. The training day took place after the meeting so that wasn’t particularly helpful, but you know Roch, he takes all these things in his stride (so to speak). He gets paid for his work and time, and also receives expenses, so he’s feeling “useful” again. His word, not mine.

There are mountains of paperwork and he goes through all of this on his i-Pad and laptop, but it’s a lot of work. On meeting days he gets up at 6.30am. Jenny stays over the night before and is up bright and early to start Roch’s personal preparation regime. For the first meeting, Jenny and Kate accompanied him, as he needs two helpers now to assist when he’s out. Yesterday, for the training day, Jenny and David went along.

Roch had two major concerns regarding the NICE Days. One was whether the day would prove too much in terms of physical exertion. Would he be able to do it? He has proved that he can.

The second concerned his obsession with being, as he calls it, “handcuffed to the toilet”. Unable to predict when he may need to empty his bowels and subject to the occasional urgent bowel movement, how could he contemplate a whole day out in Central London? The old way involved taking two Imodium before leaving, followed by a couple of days uncomfortable constipation before the system cleared again. Following discussion and consultation with different health care professionals, one of whom having pointed out that this method of control could actually impede his breathing (pressure on the already weakened diaphragm), Roch decided to consult the experts again. Back we went to the Continence Clinic at Teddington Hospital, where we saw the wonderful Tizzy, Continence Nurse, who came up with a plan.  I sat there in Tizzy’s office, listening to talk of rectal irrigation and it slowly dawned on me that this would be another nursing task falling within my remit as carer. I admit to feeling pretty overwhelmed at that point. It’s not what you envisage when you fall in love or when you take your marriage vows (that stuff about ‘in sickness and in health’ – it’s not very specific, maybe they should work on that?) I’m sure the last thing Roch wanted to hear was a plan to have something regularly shoved up his rectum so it’s not that I’m without sympathy for the patient. But I’d just got used to bolus feeding so I felt a bit sorry for myself. However, we have been amazed at how effective the new rectal irrigation regime is and I have to say, I’m feeling pretty proud of myself. Someday I intend to write about what MND does to a relationship, but that time has not yet come.

The new system is called Qufora, and it’s a very simple idea. It’s basically about training the bowel to empty at more or less the same time every day. Warm water is sent up the rectum to irrigate and empty the system at the same time every day for a couple of weeks, then perhaps three times a week, until the bowel is trained to know what is expected of it.  Useful as it is for us now, how much more useful when mobility is a thing of the past and bowel evacuation itself (not just predictable evacuation) becomes a problem? Results have been most satisfactory. It’s added about twenty minutes on to the morning ablution time, but that’s not bad. It means Roch can be confident of a clear-out before he leaves the house for his NICE meeting – or for any other reason. So far, the Qufora system is working well, although he doesn’t feel confident enough yet to eat when he’s out.  Jenny brings along some Fortisip feeds and the flush equipment for the bolus feeding. Roch gets a separate room for his exclusive use at the NICE venues, which is extremely helpful.

The morning ritual thus begins with removal of the ventilator mask, then a pee, next the essential espresso followed by a PEG flush and a feed. After that it’s the tablets. Proceeding into the wet room, the hoist is set in place and Roch is raised into the opitimum position over the toilet bowl for rectal irrigation! Lowered again, he is left to enjoy at least a modicum of privacy. The evacuation is followed by his shower and stoma site inspection, possibly some extra cleaning necessary there – but not always. If it’s Twist and Shout day, then that takes place, if not, we proceed with towelling and dressing.

Jenny has seen to the ritual for the two NICE days, allowing me to simply wish them well, before taking myself off to the futon upstairs for further snoozing. That’s the deal. If I’m not working, NICE days are my days off. Yesterday, I spent most of the day doing nothing. For the first time in – I can’t remember when – I slept late, had a bath, watched TV and went for a walk. When I got back I prepared dinner at my leisure and waited for the working man to return.

I could get used to it.




Sunday, 23 February 2014

Twist and Shout

So where are we now? Well, the wound or 'stoma site' is looking great and there's minimal leakage, which is such a relief. No more stains on tee shirts. Roch is not feeling as tired and we've started to get out and about again. Last weigh-in, he'd put on a pound. Pretty good as I'd say he'd lost a few pounds over the hospital stay. Kate and I are becoming quite expert in the art of bolus feeding and gradually the kitchen has returned to something approaching normality. 

Ten to fourteen days after the procedure, it is necessary for the 'advance and rotate' ritual to take place. This is to prevent the tissue of the stomach lining from growing round the plastic plate and performs much the same function as turning an earring in a newly pierced ear. 
The 'advance and rotate' was carried out for the first time by the Nutritia nurse. Nutritia is the company who provide the feeding equipment and fortisips. Roch has another name for this ritual. he calls it 'twist and shout'. Actually, he says it didn't hurt but he felt nauseous for the rest of the afternoon. From now on, it's twist and shout once a week.

The goal has been to achieve a new normal, as we've had to do so many times before. I think we're almost there now, and although it feels like something of an achievement, don't expect me to be happy about our situation.  
I'm still dealing with my anger, remember?

Saturday, 22 February 2014

Leaky Peg

Things have settled down nicely here since the introduction of the PEG. All praise to the District Nursing team who made sure we knew they were available day or night. We were glad of them over the first few days, indeed the first week. In fact, the first few days were pretty overwhelming. It felt like we had crossed some invisible line - my role felt more like nursing care than Carer and I think neither of us had anticipated that. 

Day One at home introduced us to the concept of the leaking peg. I'm almost sure there's a character in a Georgian novel I once read called 'Leaky Peg' (she gave her infant strong gin) and for some days the name came to mind as I went through the ritual of cleaning around the 'stoma site'. That first morning we thought perhaps the exertion of being brought to a sitting position in bed and being helped to stand, had caused the fluid to leak. Nobody had mentioned this as a possibility so we had no idea what to think. We called Careline to request a visit from the District Nursing team. Community Matron Clare arrived around midday and was very reassuring. She told us that it looked okay to her, that this sometimes happens and just to continue to clean it regularly. Over the next few days the leaking got worse and it was beginning to make Roch feel bad. Stains were visible on his tee shirts and there was an odour. The shirts were changed and washed and we began to put gauze over the stoma site although we knew the nurses felt it was better to leave it uncovered. But it was making Roch feel self conscious. In fact Roch was feeling pretty rough all round. We had definitely underestimated the effect the general anaesthetic would have. For the first time, he confided to me, since the Day of Diagnosis, he felt like a person who was terminally ill. 

On the Monday, we had a visit from Jo Lambert, our Community Matron. She explained that the fluid was produced naturally by the body, which was attempting to heal itself. This made perfect sense to us and over the days that followed, we realised that when the fluid caked on the skin, it resembled scab material. I just wish someone had told us this before the procedure. A PLM friend of Roch's had told him that he also experienced leakage after his PEG insertion and this did help to reassure us. Thank you Bob.
We were supplied with wound dressing packs and sterile solution to clean the wound. The small hospital table in our bedroom came to resemble a nurse's station whilst our kitchen table was strewn with bolus syringes, sterile water, latex gloves and boxes of fortisip. 
The nurses in the hospital had advised against showers for at least ten days but to Roch's immense relief, Clare introduced us to 'Tegaderm' sterile adhesive film dressings, which meant the stoma site could be protected whilst showering. A Godsend.

For a time after we came home, I felt angry and bitter. Valentine's Day came and went and Roch and I agreed to postpone any kind of celebration. I forbore to post a bitter observation on Facebook but I quote it here to give you some idea of how I was feeling.

"Happy Valentine's Day, and for all you lovers out there, here's a thought. As you lean across that romantic candlelit table to feed a delicious morsel to the man/woman in your life - make the most of it - someday you could be feeding him/her through a tube in their stomach."

Impossible for me to imagine being in the company of 'normal' couples, listening to tales of holidays spent together, experiences shared, without feeling bitterly resentful. 
My counsellor is currently abroad but I have been the lucky recipient of what we like to call 'transatlantic therapy' and over the telephone we discussed ways of dealing with my feelings of anger. So if you see me in my car, mouth open and with a no doubt contorted expression on my face, you'll know I am following expert advice and yelling at the top of my voice in a controlled environment. I don't, of course, indulge in this exercise whilst driving.
I have also found that a good belly laugh offers similar relief. Recently a neighbour popped in and we swapped stories of our recent struggles and family crises. Surprisingly, given the subject matter of our conversation, we ended up bent double, eyes streaming as we howled with laughter over really the silliest thing. I mean, what else can you do? It helped so much.

Thursday, 13 February 2014

One Man and His Peg

Roch received the best of care from medical and nursing staff at the Royal Brompton. He spent the night following the surgery in the Intensive Care Unit and the subsequent two days in a High Dependency ward. On the Friday, Kate and I were given a tutorial on pump feeding by a nurse from Nutritia Care, who supply the equipment and feeds and the nurses on Victoria ward, back in the Fulham wing, showed us how to administer bolus feeds.
The latter are feeds through a special syringe, directly into the stomach through the PEG. There was some confusion at first, as Roch had been transferred to Victoria ward from ICU as a ‘Nil by Mouth’ patient and so had been given no solid food at all. On the Thursday morning we watched as the nurse set up a pump feed, which she explained would administer nutrition over a period of ten hours. They had tried to feed him through the peg in ICU but he hadn’t been able to tolerate much. We were puzzled – surely the idea had been to supplement his diet using the peg? Not to replace food with peg feed? Poor Roch was very woebegone as he had had nothing to eat since Tuesday at tea time on Foulis ward. We waited for the dietitian to appear, who confirmed that there had been a misunderstanding and directed that Roch be given three bolus feeds a day, to supplement his diet, giving him an extra 900 calories per day – but that he could eat as he wished in between. That was a relief, although I watched the bolus feeds being administered with a sceptical eye. How on earth was I going to manage that? It all seemed frighteningly alien to me, although I tried to look confident in front of Roch. In fact, on Thursday he was not himself at all, pretty miserable and very, very tired. Not surprising, given the general anaesthetic. The Consultant was sympathetic and explained that he had, basically, been ‘stabbed in the stomach’ so really not unusual to feel crap. Within 24 hours, in fact, he was feeling a lot better and by Friday he was desperate to get home. A number of factors, however, had to come together for discharge to happen. All afternoon Jenny and I waited with him.
The dietitian had to come to confirm the feeding regime and the physiotherapist had to see him to determine whether, following the few days in bed, it was safe for him to transfer to the wheelchair for the journey home. Medication also had to be arranged from the pharmacy and of course he had to get the all clear from the doctors. Finally, and this was the big question on everyone’s lips – had he evacuated his bowels since the procedure? As long as the answer was no, it looked like he was staying put. One by one, the pieces began to come together but then, despite jubilation over a successful evacuation, news came that they wanted another X-ray. This was because the previous X-ray had shown too much air in the stomach. After the X-ray we waited for the doctor’s verdict and the medication. Bags packed. Eventually we got the all clear. We got home at 8pm. Jenny supervised my first ‘flush and feed’ and then left us to it. Life would never be the same again.

Nil By Mouth

It’s been a topsy turvy few weeks but between the jigs and the reels, as my Grandad used to say, the PEG is in and we are home. Originally scheduled for Monday 20th January, but cancelled then, and again the following week, eventually the procedure was carried out last Wednesday.

The cancellations felt frustrating for us both but especially for Roch, as he had built himself up each time, prepared to face what is an MND milestone. It felt like a blow for him. We did discuss this with medical staff and made our feelings known. On each occasion the procedure had been cancelled at short notice as emergency cases had taken precedence. We understand now how complex it is at the Royal Brompton to manage beds for the procedure. They need a bed for the preceding overnight sleep study, a bed in ICU and a bed in a High Dependency Unit before and after the ICU stay. In the end it was decided to organise two separate admissions, the first for the sleep study, to assess Roch’s condition with regard to his breathing capabilities and the second for the actual procedure.

The sleep study was carried out the week before the procedure for PEG insertion and on that occasion it was possible for me to stay with him, which, I think is always a comfort, for both of us. We expected admission for surgery on 18th but in fact the long awaited call came on Tuesday morning, 4th February. It couldn’t have been timed better – right at the beginning of the tube strike. The surgery was scheduled for 10am on Wednesday 5th and he began his stay on Foulis ward in the Fulham wing of the hospital. Kate and I stayed to keep him company until about 9.00pm and helped him with his meal at teatime. That was the last solid food permitted and before we left, they set him up on a drip to keep him hydrated overnight. He was on the ward with three other patients, all of whom were friendly, helpful guys. Kate and I embarked on our three bus journey home, happy that he was fairly comfortable and pretty confident that by the time we saw him again, he might even have had the procedure.

Wendesday 5th

Next day I woke with the shadow of a migraine and we worked out a better way to get to the Royal Brompton. Taxi.  Roch had sent a text to let me know that the procedure was to go ahead as planned and when we arrived on Foulis ward, there he was in his hospital gown, attached to the drip and waiting. That was at 10.30am. It wasn’t too long before a debate began between the nurses, who came to me for my opinion. They had to get Roch to the Sydney street wing of the hospital to a High Dependency ward to be prepped for surgery and were concerned about the safest mode of transport. Could he manage transfers in and out of the wheelchair safely? Or was it best to arrange a stretcher and transport across via ambulance? Eventually it was decided that stretcher was best, at which point a nurse came in to say that no transport was available. So between us, Kate, a nurse and me, we managed to transfer him into his wheelchair, hospital gown modestly held together behind him – only to find that in fact transport had arrived and two ambulance people were standing in the ward, looking at us in an enquiring manner. A short conference between staff ensued and the result was a transfer from wheelchair to stretcher. Just as well, really, as it had begun to rain heavily outside. We travelled down in the lift together and waved goodbye in the street. He made a frail, vulnerable little figure, as he was wheeled on his stretcher into the ambulance, accompanied by a very kind and helpful nurse who carried his ventilator bag.

Kate and I headed off through the foul weather to a nearby cafĂ©, where we sought refuge and sustenance. We weren’t sure how long to stay away and I was conscious of a pull of nausea directly connected to the developing ache in the side of my head. He had been transferred to Elizabeth HD ward in the Sydney wing and so we headed over there at about 2pm. Two patients to each nurse so a good ratio. There we waited, making small talk and watching the activity around us. Later in the afternoon the anaesthetist arrived and discussed the procedure with Roch. They gave him the option of having a general anaesthetic, an option which he gratefully accepted. The doctor was careful to make him aware of one way in which the procedure could go wrong. As he walked away, saying ‘See you soon, then’, Kate and I looked at each other and hoped Roch would escape a perforated bowel. Yeah, thanks for that.

At around 4.30, he was wheeled away for surgery and Kate and I were encouraged to go down to the canteen to eat something. By the time we got there, all I wanted to do was lie down. So I put two chairs together and put my feet up. At this point I decided there was no going back and so I downed my triptan medication and hoped to doze. The canteen was almost deserted but I was aware of an older couple sitting at the next table. We must have been there about an hour, when the lady approached us, offering us a Metro newspaper. She explained that her young grandson was just out of surgery, that her daughter had called from the ward to say that they could go up to see him. I don’t know what was wrong with him, but she said he’d had something like eight operations so far and confided that the Royal Brompton had, quite literally saved his life. She wished us luck. She knew we were waiting for a relative to come out of surgery. I wasn’t really up to much conversation but I was grateful for her friendliness and concern.

At this point I figured it was safe to stand and test my head. A visit to the ladies assured me that the triptan and rest had gone some way towards seeing off the migraine and we decided to head back to Elizabeth ward to see where Roch was. At the nurse’s station we were told that it was all over and that he had just been brought to Intensive Care, as a precautionary measure, where he would stay all night and the nurse suggested that we go to the canteen to eat something as ICU would not admit us for at least another half an hour. (They are very keen on making sure the relatives are fed). Heigh ho, we didn’t bother saying we had just come from there, but went to wait in the corridor for half an hour. Roch’s Elizabeth ward nurse saw us there and came over to say that there was a waiting room for relatives outside ICU. She advised us to wait there, and let the ICU staff know. Entrance is password protected but there is a phone on the wall and relatives are asked to call an extension to announce their arrival. We did this and then waited to be called. Not long after this, a pleasant man emerged to bring us through and in we went to see the patient post-surgery. In ICU it’s one nurse per patient, which was very reassuring. Roch was a bit groggy and sore but able to talk to us. It was a relief to know that it was all over and done with at this point.
We had yet to experience the aftermath at home. We stayed until visiting time was up and then made our way home by bus and train this time. I rejoiced that it had gone well for Roch and that I had managed to be there for him all day, thanks to triptan medication. All I could think of was bed.