In New York

In New York

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.

Tuesday, 21 January 2014

#Corrie #righttodie

Yesterday the Brompton called to tell us the procedure would have to be postponed. No bed available. There we were, all packed up and ready to to roll. Still, we'll get over it. It's a shame as Roch was all psyched up but in a funny way it feels like a reprieve. Another week PEG free. 

So we were at home together to watch as Corrie's Hayley Cropper took her own life and in doing so, sparked a long overdue public debate about Assisted Dying. Julie Hesmondhaigh and David Nelison as the dying Hayley and her loving partner Roy were incredibly moving and their story must have resonated for countless people watching, as it did for me and Roch.
Did you read the article in The Sunday Express the other day? It made me so mad - the reporter was either shockingly  ill informed or wrote a deliberately misleading article on the issue. Yes there are two sides to the debate and I am willing to listen to your side but only if your arguments are based on the facts. A change in the law will not lead to eventual euthanasia, it will protect vulnerable people. The proposed changes would allow people who are dying the right to choose how and when they die. Assisted Dying is for terminally ill people only, someone who had a disability and wanted to die would not be eligible to request an assisted death. Get your facts straight Daily Express and stop scaremongering! 
Last night twitter was filled with comments on Corrie and sympathy for the fictional Roy. Here is what Roch - a real person -  has to say, published online last night to coincide with the airing of the episode.

Friday, 17 January 2014

Corrie, Assisted Dying and The Sun surprises

Are you watching Coronation Street? If so, you will be familiar with the Roy and Hayley storyline. We're not really into Soaps, but we used to watch Coronation Street all the time. One day we just stopped - years ago - and never missed it. But we're back in the Rovers Return again, watching the Roy and Hayley story unfold as the programme has chosen to run with a storyline which involves an  issue close to our hearts.
Hayley is dying of cancer. She is an adult, of sound mind, terminally ill and her death is imminent. Should she have a choice about the time and manner of her death? Well, 73% of The Sun's readers think so. The Sun newspaper ran a poll of its readers and published the results on 14th January. I  have copied in the relevant page from The Dignity in Dying website below for a full report but please feel free to visit the website yourself, to read the personal stories of their supporters and the statements of support from their many eminent Patrons.

As you know from previous blog posts, Roch and I back the campaign led by Dignity in Dying and support a change in the law which would allow terminally ill adults who are proved to be of sound mind, a choice about how and when they die.
Yesterday Roch was interviewed by a journalist from The Express and once again posed for photographs. He wants his own story to be told to illustrate why a change in the law would give him peace of mind and we both hope that this will help and support the campaign for Assisted Dying.
Here is the full report from the Dignity in Dying website:

"The Sun backs Assisted Dying Bill

By David Pearce

Today The Sun, Britain’s most popular newspaper, expressed its support for a change in the law on assisted dying. The Sun says:

“Lord Falconer’s Bill would ensure terminally-ill patients prove they are mentally capable of choosing death, that they have “settled” on their decision and that they have not been influenced by others.
“These are sound safeguards.”
“The risks of legalisation seem tiny to us compared with the suffering it would ease.”
The Sun survey on assisted dying
This editorial by The Sun comes following a survey conducted by YouGuv, which showed that 73 percent believe that terminally, mentally competent adults should be allowed to control the manner and timing of their death. This is in line with the safeguards set out in Lord Falconer’s Assisted Dying Bill.
The Sun was prompted to survey its readers by the Coronation Street plot about Hayley Cropper. Last year Hayley, played by Julie Hesmondhalgh, was diagnosed with terminal pancreatic cancer and as her condition progresses decides she wants to be able to control her death.

A difficult subject needs to be handled with care

Producers of Coronation Street have faced some criticism for creating the possibility of “copycat deaths”. It is important though to distinguish between assisted death – where a dying person controls the end of their life in the knowledge that their death is inevitable – and when someone takes their own life for other reasons, such as depression. Coronation Street’s producers have consulted with The Samaritans, who understandably advised against providing details of exactly which medication was involved or how the drugs where obtained.
Coronation Street producer, Stuart Blackburn, touched on the sensitivities of such an emotive issue in The Daily Mail, he said:
“This is a very sensitive issue and we will be exploring the effects of her decision on husband Roy who has a huge emotional and moral dilemma over her choice to die this way.
“Not everyone will feel Hayley’s decision is the right one and we fully respect this.”
“For that reason we will be exploring both sides of the debate on screen.” "

Roch and I will be watching with interest.