In New York

In New York
Rochsmefeller

Friday, 17 June 2016

There's nothing good about MND. An Anniversary Reflection

Yesterday it was seven years since diagnosis. I’ve been going through the blog, reading my posts for each anniversary. I notice that as each year passes the frequency of my blogposts diminishes. I have spoken before about hitting a wall with this, feeling too sad, tired and demotivated to blog. What is there to say? What acceptable words can I find to describe how I’m feeling? Nobody wants to read depressing blogposts. But that’s the reality of MND. As my mother said years ago, “There’s nothing good about MND."

2010 So tomorrow is 16th June. A full year since Professor Kaplan gave us the news. I remember sitting in a narrow hallway outside his room. I stared at a sign on the opposite wall which said'Apologies for the inconvenience caused by the refurburbishment' (sic) and watched another couple nearby who looked just as small and scared as I felt. I think Roch and I both knew it wasn't going to be good news but we were stunned anyway. It was a really hot day and afterwards we went for lunch in Twickenham. Both of us cried a bit. And now a year later, we've had a good year, like I said in my last post. Maybe what we're feeling is the knowledge that each year now will be not quite so good as the one before. And I keep telling myself that I need to live in the moment and I know it's true, but somehow I'm finding it more difficult than ever. There is one thing that is guaranteed to cheer me up. Guess what it is? Today I drove round the corner of our road and the first person I saw was Roch. I immediately felt better, lighter. He can drive me crazy sometimes, but no-one is there for me like him. He's my man.

2011 It's an anniversary today. Two years now since the diagnosis. That's pretty good. It's reason enough to celebrate. He's just beginning to need the wheelchair, he's still working, still able to enjoy food and drink. We're lucky I guess. I had a look at my post of a year ago. Roch was using the two sticks, and getting used to the rollator. It was just before our Venice trip. There's no doubt that the monkey is getting stronger but we're not done yet, not by a long shot.

2012 “This is not the end, it is not even the beginning of the end, but it is perhaps the end of the beginning." Churchill 

So here we are, three years on and so much has changed. From the word go, our strategy has been to maintain normality as much as we could and we succeeded, I think. It was the best approach, especially for the children. But in recent weeks we have had to accept a new approach. Phase one is over.

In 2013 and 2014  I did not record my feelings on the anniversary. 

2015 Coming up to the sixth anniversary since Roch’s diagnosis, it feels like a time for reflection. Neither of us thought that he would last this long and to my surprise I’m finding that reaching this stage requires a change of mind-set on my part. In fact, our reactions to the reality of his survival well beyond initial prognosis appear to me to be quite different and I find this interesting. On my part I realise that I no longer view my husband as someone with a terminal illness. It’s true - his deterioration has been so slow and I am so used to his level of disability that although I find it trying at times and struggle with the limitations it imposes on both our lives, I don’t see him as a dying person. To me, he’s just Roch. I have ceased thinking about his death and this means I need to focus more on acceptance of Life as it is now and for the foreseeable future. 

2016

Well, reading through the above entries, I'm not sure I'm following my own advice. The longer this goes on, the worse Roch’s condition gets and the more I grieve for a life together lost. It's hard to accept Life as it is now. 

Last night I went outside in the dark to bring clothes in off the line. In the beautiful scented summer air of our garden, I watched the moonshadows cast on the grass and wondered how I will feel about it all when he is gone. About the garden, the house - everything. I think on some level I keep it all going for him, for us. Our home, our garden. The place we created for our family. Without him, it won’t feel the same. I try to focus on the now but the Monkey’s strength is growing and it’s hard to ignore it. Elsewhere in the blog I speak about the Wisdom of Uncertainty and how each moment, even if full of pain, will pass, the moment endlessly renewing itself. We never know where the next moment of joy will come from. Each moment that passes brings us closer to the final moment and then that, too, will pass. What then? Live through it, I guess. There are still moments of joy but the Monkey’s shadow is long.

People ask how things are, how we are. Most people don’t want to know the truth. Today I found myself answering someone as honestly as I could. I said that his condition continues to head downhill, that we have begun pump feeding at night as we are worried about his nutrition levels, that he is tired all the time, that it is seven years since diagnosis. That really, we are not feeling too great. This was met with dismay. So I rescued them and assured them that he could still enjoy a pint. Relief was palpable. We focused on the positive.
“There’s got to be some nutrition in a pint!” they remarked cheerily. 

It’s all very difficult, isn’t it? People mean well and they are fond of us and wish us well. I do know that. And I am conscious in writing this honest blogpost that people will worry and that is why I hesitated before I began. But really I can’t protect you. He’s worse than he was, but that’s to be expected. It’s harder than it was, but that’s not surprising. It’s all getting tougher, but I think you knew that.
All I can say is, there’s nothing good about MND so if you ask me how things are, be prepared for an honest answer.
Oh and if you do ask, and I tell you,  please don’t try to give me advice or tell me to be grateful for the little things. I don't expect you to solve it for me. You can't. Just acknowledge that there’s nothing good about MND and be brave enough to listen. 



Sunday, 29 May 2016

All Party Parliamentary Group on Carers - The Carer's Strategy


Back from Clare I had to shift my focus sharpish. Before my holiday I had been asked by the MND Association to speak at Parliament before a joint meeting of the APPG on MND and the APPG on Carers about my experience of caring for Roch. Rt Hon Alistair Burt MP was to be in attendance and the purpose of the meeting was to discuss the Governments Carers strategy. It was a chance to put forward concerns and highlight the issues. On the flight home I began to think about what to say. I knew I had five minutes to speak and both the MND Association and CarersUK had requested that if possible, I include a number of points they felt it was important to stress to the Minister, both points of information and issues of concern. I decided that I would try to weave our experience around these points.

For an excellent report on the meeting I can do no better than refer you to the following link from the CarersUK blog. I hope I presented, in the time allowed, at least some of the universal concerns shared by my fellow carers, and not just those caring for someone with MND.


https://www.carersuk.org/for-professionals/policy/expert-comment/5200-the-carers-strategy-at-the-appg-on-carers


An impressive number of MPs attended and the meeting was chaired by Baroness Gill Pitkeathley.


I think so many MPs came along because so many have been affected by a caring role. One MP referred to the 'Army of carers out there' and it was generally agreed that more and more people are unexpectedly faced with the prospect of caring for a family member. I was happy to hear that there was understanding about how at the moment of diagnosis, life changes forever for the person who is about to be catapulted into a life as a Carer and MPs agreed that speed is of the essence in offering support and information at this early stage.
Afterwards I had the pleasure and privilege of meeting with Barbara Keeley MP, Shadow Minister for Carers, who spoke so eloquently during the meeting about Carers' needs.
With Barbara Keeley MP and Richard Arkless MP
 
With our Tom, who supported me throughout the day. 
In the Shadow of Big Ben
 
The Minister speaks

I spoke also with Richard Arkless MP for Dumfries & Galloway, who recently lost his mother to MND. There is a shared understanding and mutual compassion between people whose loved ones have MND. After the meeting we hugged. He told me that my speech had resonated with him in all respects. All around me I saw the human face of Parliament and indeed Alistair Burt made this very point. We think of Westminster perhaps as a place very removed from us but the reality is that MPs and Peers are human too and the issue of caring touches so many - some disclosed their own personal experiences around caring. For all of us Carers out there this is a good thing, because it means it is an issue close to their hearts and they will want to make sure the new Strategy on Caring does right by Carers. 

The Minister announced that the public consultation was to be extended by a month, so there is still time to have your say and a chance to influence the Government's strategy on Carers. 

https://consultations.dh.gov.uk/carers/how-can-we-improve-support-for-carers

A Carer's Break


It's been busy lately and I've been lucky. In mid May I had a break from caring when Roch's long awaited respite stay at Princess Alice Hospice came round. For months those with my best interests at heart (and Roch's) had been encouraging me to take a break and get away, to do something just for me. I wanted to, but it took me a long time to get it sorted. The hospice stay was arranged well in advance (before Christmas) and I found what I thought would be the perfect holiday for me - a painting course in one of my favourite places in the world.


The course was called 'Abstracting the Landscape' and was set in County Clare, in the West of Ireland at The Burren College of Art, an extraordinary place which blends in perfectly with the limestone landscape of the Burren.
I can't describe how beautiful this place is and how much it means to me. For years our parents brought us as children on holiday to Ballyvaughan, a small village on the shore and when our children were young teenagers, Roch and I brought them there, to clamber over the rock and swim at the beach in Fanore.
In fact, the last time we were there was in 2010, the year after Roch's diagnosis. There was a strong current at Fanore and he struggled to bring himself ashore - the weakness in his legs and arms meant it was no longer safe for him. I remember that he fell on the wooden walkway, on the way back to the car. It was the beginning of the end of that kind of family life.

Fanore


So I guess everywhere there were memories for me, happy and sad. Perhaps it shouldn't have come as a surprise to find myself overcome on Day Two. I seldom cry but something in me seemed to break and I found myself unable to stop. I hardly knew why or what had caused it. Our teacher told me later that she thought I was abstracting the landscape from within as well as without. I was unprepared for the intensity of the experience. I think almost without realising it, I had tapped into something deep inside and out it came. The studio was open 24 hours a day and so although I took myself off on Tuesday afternoon, back I went with Maura in the evening to make up for lost time and managed to produce some work.

Abstracting from Within

The level of dedication, skill and hard work in our group of Abstract painters was impressive and I was proud to be a part of it.

I cannot praise our teacher highly enough. Her skill as a painter is phenomenal. I found some of her work breathtaking. She makes it look so easy! We could not have had a more encouraging or approachable teacher - or one with more knowledge of her craft.
Last Day Selfie with Maura and teacher Cora

http://www.coramurphy.com


Surrounded by the beauty of the Burren landscape and the support and friendship of the group (not to mention the loving presence of my sister, Maura) I couldn't have had a better break.


https://www.burrencollege.ie








Friday, 15 April 2016

Back to Blog

For the last few months I have been avoiding the blog. I have been struggling with new medications to control the migraines. Fatigue levels have been high, mood has been low. Could it be the medication, is it the menopause, or is it simply that life with MND is so shit? I've been here before - in the sense that I have been reluctant to share on the blog. If it's not real, I don't write about it here because I have to be honest. On the one hand, I don't want these pages to be simply a boring moanfest - on the other hand, this is meant to be about the reality of living with MND and that's where I've been at.I put finger to keyboard early this month and was not happy with the result, but I publish it below to give you a flavour of the mood.

It's complicated having Carers here. Roch copes with it a lot better than I do. My room has become my sanctuary but although I have more time to write, I have hit a brick wall. I seem to have lost my motivation and my confidence has plummeted. The only way up and out is through and I know this but no matter how much I tell myself to get on with it, just do it, write ANYTHING, I stare at the blank page or at best produce a paragraph of rubbish and I don't know where I'm going with it.

So, welcome to the moanfest.

Blogpost 6th April 2016

Seven Years On - Does it get easier?

The word for me at the moment is Intrusion. For so long I looked forward to a time when the day to day caring tasks could be shared, giving me more time for myself, resulting in a less exhausted Deirdre. Now we have what might be called a team of Carers (or Personal Assistants) and I’m still not happy. I tell you now I did not anticipate how difficult I would find the constant intrusion into our home, our space. It’s not that they are not lovely people or that they don’t look after Roch well but essentially they are strangers in our home. I thought I would get used to it but having someone here every day - although this was the plan, the plan for ME - I find incredibly difficult at times. 

I mentioned this to an old friend recently, and I found her response very helpful. Maybe some of you will too. She reminded me of a time in her own life when she had to accept help in her home. It made her angry, she told me, and she resented the intrusion so much that she sometimes found it difficult to hide her feelings from the people who came to help her. She said she felt so bad about this that she spoke to her priest about it and he told her “You don’t have to be grateful, you just have to be civil.” She said that helped her enormously. 

It can be hard work, too - there are lots of issues to deal with, both personal and practical. We have a lot of help from RUILS but employing a bunch of Personal Assistants brings its own challenges in many ways. Rota, training and induction, insurance, payroll (Roch and RUILS deal with this) - simple human interaction feels beyond me sometimes. Their presence, welcome though it is on a practical level, is a constant reminder of how much further this disease has ravaged him physically. It’s hard for him of course. He’s not an old man. He’s only 54 and who wants to be wholly dependent at that age? I know it’s hard for the kids, too. It’s been seven years and the last four years have been gruelling. Our kids are marvellous. They are, quite simply, the Blessings of my life. People tell you to count my blessings and I have.

Count Your Blessings


The weight of her head on my shoulder,

the warmth of his fingers in mine;

these are the blessings I treasure,

their hearts beat the measure of life.

DM 2016

                           

Oddfellows

After a long absence, I recently attended an MND Carer’s Meeting. My situation was very different from that of the other Carers present. Both had partners recently diagnosed. I feel for them but how can they support me? My needs are very different from theirs. I mentioned that now we had Carers to help.

“What do they do?”

“Well, they get him up in the morning and shower and dress him…” I began.

“Oh I don’t mind doing that for my partner.”

I know the remark was less a comment on me and more a personal reflection on their own situation, perhaps checking in with themselves about where they were with that task - but it was difficult to hear and inside my immediate response was defensive and angry.

“You wait until you’ve been living with it for seven years, mate, and showering your partner for four of them.” 

Of course I didn’t say that. 

Roch calls himself a freak. His Neurologist calls him an Outlier. I felt like an Outsider, a Veteran, if you will, somewhat jaded by experience, careworn and still struggling with feelings of guilt, anger, resentment, grief. But I didn’t feel I wanted to express any of those feelings there. Our Seven years brings others hope but the reality is that the longer it goes on the harder it gets.

Tuesday, 2 February 2016

News from January

The new year began with a chest infection for Roch. Lucky we had our emergency supply of antibiotics on standby and once again, we nipped it in the bud before he could get really ill, although he was quite unwell for some days and it took a while for him to recover fully. I didn’t want to diagnose and dose him myself so as advised at the time the tablets were prescribed, I called our District Nursing Team. It was just after the New Year and they were very busy and told me to call the GP, but the line was busy and I couldn’t get through, so I called NHS 111. I spoke to a clinician who asked lots of questions and eventually advised me not to give him the antibiotics as Roch had said the cough was dry, although he had a slight temperature.

I didn’t argue with her although her advice to me at the end of the call was so patronising and demonstrated clearly that she did not have a clue about MND.

From my recollection: “What you’ll do now with the antibiotics you have is - you’ll give them back to your pharmacist and call your GP as and when you need an appointment.” You stupid woman, I thought. Now I don’t trust any of your advice. Later that night, when Roch tried to cough and (hurray!) managed to bring up some suspicious matter, I decided to give him the antibiotic. Next day I called the GP to let her know I had started him on antibiotics as he had a chest infection. She was fine with it. Some days later our lovely District Nurse Fiona advised that next time - if there’s a temperature and a cough, just do it. I will.

All the Consultants we have seen recently - Dr. Matthew Hind at the Brompton, Professor Al Chalabi at King’s College and Dr. Burman at King’s College - have asked if we have an emergency supply of antibiotics on hand. 

Parnika, Roch’s dietitian visited last week and brought a weighing contraption with her. This was fixed to the hoist and together we weighed him. Not sure how accurate it was, but he has certainly lost weight. He was 68.3kg in July and now he’s 63.3kg. This means more regular supplemental feeding and careful calorie counting. We’ve got to build him up. I think it’s been a gradual loss - he often has little appetite and stubbornly refuses the supplements. But he probably lost some weight when he had the chest infection. We are all busy stuffing him now.

January saw Team Roch grow and now, by George, I think we’ve got it! Marianna (who worked with us for a time when Jenny left) is back with us and will do two nights a week, Amelia will do her three days when I am at work and the wonderful Agnieszka has joined us - she and our good friend Carolyn will pick up the rest of the shifts. 
Both Roch and I were delighted when Carolyn offered to help. She saved my sanity before Christmas when she said she would come in for a day here and there to give me (and Amelia) a break as Amelia was trying very hard to be there for us - not just when I was at work, but on other days, too, so that I would have an opportunity to be 'off duty'.

Welcome to Carolyn!










It’s always lovely to see Carolyn at the door - her presence is so bright and cheerful and she has such a lovely sense of fun. As some of you know, Roch worked with Carolyn back in the day and it’s great for him to chat to her about work and catch up on news and the world of housing. 

A Little about Agnieszka

Agnieszka - the newest member of Team Roch

Amelia kept telling me the right person would come along but I was beginning to lose faith. Then, out of the blue we were contacted by Agnieszka, who through a series of personal circumstances, finds herself looking for a position where she can work flexible hours. She and Amelia worked together in the past and that's how she knew we were looking for someone. There was an immediate connection. Cheerful, gentle and with a great sense of humour, Agnieszka is a nurse, registered in Poland but working in the UK in the Caring profession; she lives near us, she drives - and she likes football! If she isn't an answer to prayer, I don't know what is.

So Amelia, you were right and the right person has come along. So I give thanks for Agnes. Folks, we may be able to settle into a life where we are a family again and Roch and I can enjoy just being together. 

An Interesting Meeting with The Professor (no, Roch not that Professor)

In fact we talked about being a family again at Roch’s appointment with Professor Al Chalabi last Thursday. He asked me if I had had recent respite and then reminded us that 2016 is the Year of the Carer. I told him how important it was for us to organise carers for Roch so that we could simply be a family again and Roch and I could enjoy our relationship as husband and wife. We agreed that the whole dynamic of the relationship changes when your partner becomes your carer and I mentioned something Kate said to me recently. She said she felt that it had been unfair (although nobody’s fault) to have told us to view Roch’s illness as terminal and make preparations for the end. Given the slow progression of the illness for Roch, over the past few years we have had to shift our focus from “Goodbye” and begin to live and plan for a future where Roch is still with us, but severely disabled. It’s a completely different ball game. Back at diagnosis they had no way of knowing that he would survive this long and MND is always fatal so it’s hard to see how their advice could have been different. 

Professor Al Chalabi paid us a beautiful compliment about the strength of our relationship and commended the way in which Roch and I had adapted to the changes throughout Roch’s illness. It meant a lot to us.

To update you in terms of Roch and the progress of the disease - Professor Al Chalabi says that Roch is now in the 2% of patients with MND who live beyond eight years. He counts the years from onset of symptoms. There is no reason to suppose that the progress of the disease will hasten - it’s likely that it will continue at the same pace - a gradual, slow decline. The good news, he added, is that given Roch’s longevity, he may well live to see a treatment emerge - a treatment which would not cure the disease but could very well halt its progress. Now folks don’t get too excited about this. He wasn’t promising anything and it’s important to understand that. Roch has mixed feelings about the possibility of any future treatment - the worse his condition, the less welcome a treatment would be which would keep him in a ‘state of decrepitude’ as he says himself. Professor Al Chalabi will make no more predictions - Roch is an outlier and we will just have to wait and see.

Roch also had an appointment with Dr. Rachel Burman, who is a Palliative Care Consultant, specialising in MND. In the past he has spoken to her of intrusive thoughts of death and how the end will be for him (Roch has given permission for me to speak of this here). Without being patronising, Dr. Burman encouraged Roch to think about his day to day life and consider whether he had enjoyed his day - yesterday, the day before - was he looking forward to anything? She suggested that he try to put away thoughts of the end (nobody knows when it will be) and concentrate on his life now. She prefaced her suggestion by saying that she recognised how annoying it might sound coming from someone who was not living with MND and inviting him to wheel forward and give her a punch if he felt annoyed by it! She also told him that she felt inspired by him and that she thought he was amazing and had grown as a person throughout his illness. 

You and I know this is true  - how good that the Consultants recognise it. 

As always, the faithful Gerry was chauffeur for the occasion. He makes an otherwise onerous expedition enjoyable. The journey flies by. This time we got to see the Queen’s Horse Guard at Hyde Park Corner. It was such an archaic sight and felt so weird to see the sun glinting on their silver helmets. I imagined them galloping towards ranks of infantrymen, enemies of the Crown, brandishing their swords. We agreed that the horses looked in better shape than any of us!

Wednesday, 6 January 2016

Christmas Charades

Present time - sharing memories

Christmas Table!
We had a good Christmas Day. Roch enjoyed his meal (that's seven Christmas meals since diagnosis, although now we feed him) and joined in a game of charades afterwards, to our great delight! This is not an easy thing to do, when you have to use one hand to lift the fingers of the other, offering spasticated clues as to the number of words or syllables involved. I think he would agree that the whole enterprise was pretty hilarious and he had us in stitches (mostly deliberately).
"Five Words!"


I failed to anticipate just how tiring Christmas preparations would be, combined with the demands of the caring role and less help for us over the holiday period so found myself in bed for much of Boxing Day (St. Stephen's Day to my Irish friends). Roch, Kate and Tom went to Griffin Park for the Brentford match. (Brentford drew to Brighton and Hove). Evening festivities recommenced when they got back and I once more rose to the occasion.

 Magnificent pudding provided as always by our Mauri

At Griffin Park

Christmas Day selfie!
I have resolved that next year I will have to let some things go and accept that I can't produce Christmas in all its perceived perfection unless we have a lot more help in terms of Care next year. I have got to admit that I cannot do it all - well, I can, with help from the kids, but then I collapse. I've come to realise that I carry on my own private Christmas charade each year. It's a world of make believe where I try to convince myself that if I can just reproduce our Maher Family Christmas...I can prove nothing much has changed for us. But it's an illusion. Everything has changed.
I made a promise to myself on Christmas morning when I woke up feeling more exhausted than I ever have before at Christmas: new family tradition will be Christmas Eve takeaway. So far, that's my only concession to MND but I suspect there will have to be more. It's a shame, because I love it all. I'm thinking the Christmas cookies have to stay...

Still, despite fatigue and the occasional tearful moment (many thanks to my wonderful children for all their help over Christmas and for providing the occasional shoulder), there were lots of happy moments together and new memories to treasure.

"It's a song!"







Saturday, 26 December 2015

Back to the Brompton. A Christmas Ordeal.

On Tuesday 22nd December we had an appointment at the Respiratory Clinic at the Royal Brompton. In the months coming up to the date, it was tempting to rearrange as the thought of travelling there and back and being stuck in that hospital corridor all afternoon two days before Christmas was pretty dispiriting. But back in November the local Respiratory Nursing team advised me not to postpone. His cough reflex, they told me, is so weak now that we need to talk about cough assist machines. This caused the usual skipped heartbeat for me - which I notice is what happens when I recognise an MND landmark moment.

So we didn't postpone. I arranged time off work (once again, thanks to Paul and Amy) and arranged for hospital transport on the day. I alerted our friend and neighbour Michelle to the imminent arrival of an ambulance (to allay the fears its arrival would inevitably cause amongst concerned neighbours) and made the necessary preparations. The ambulance arrived early and off we went. They had left plenty of leeway in case of traffic, which meant we arrived 45 minutes ahead of our appointment time. And so the waiting commenced...

We have plenty of time to observe. There is tinsel everywhere and a rather nice Christmas tree at Outpatients, downstairs. Several female staff members sport jolly Christmas earrings.

The appointment is for 13:00 and the usual routine is followed today. First, but not until 13:30, Roch is called for the FVC (Forced Vital Capacity) test, where his lung capacity is measured by blowing into a tube ("Take a deep breath, now blow - keep going, keep going, keep going..."Lung capacity is measured on a chart, which is added to his file. Then we return to the corridor to wait for the blood test. Eventually he is called the the Blood Room (in my head I call it 'The Bloody Chamber' a la Angela Carter). As described in previous posts here, the patients are given a choice - wrist or ear? Roch usually chooses wrist as this tends to bleed less, although it's more painful. However, there are fewer nurses with the skill to extract from the wrist and we hadn't spotted the usual skilful individual so he chose ear. Mistake. It still hadn't stopped bleeding when I was putting him to bed that night.

Back in the corridor, ear sporting an enormous wad of cotton wool, held in place by a cartoonishly large clip in startlingly bright blue, we wait again, senses on the alert for any sign of an elusive Consultant. There are always two at the Clinic. We hope to see Professor Polkey but today there is no sign of his tall, genial presence. Instead we see the female Consultant we saw last visit and my eyes immediately meet Roch's in a mutual "Oh no!" We do not want to have come all this way, waited all this time and be met with well meant platitudes. Might as well have stayed away and wrapped some presents. More useful.

Then I spot a vaguely familiar figure striding past. I don't remember his name but I know we have met him before. There is something instantly likeable about the way he interacts with a patient who stops and addresses him in the corridor. His manner is friendly and respectful and he gives her all his attention, although given the growing line of waiting patients, he must be keen to start his clinic.

So now we wait and wonder which Consultant it will be who emerges to call Roch's name? We see both conversing at the end of the corridor and they disappear together into one of the consulting rooms, presumably to divide up the afternoon list.

The female Consultant is out first and to our relief, she calls a different name. As the patient and his companion follow her down the corridor we hear her explain loudly that she is one of the Consultants this afternoon and that she often takes this Clinic. Do  I imagine I see their shoulders droop in disappointment? The door closes behind them.

Next the gentleman I spotted earlier emerges and calls Roch's name. Relieved, I pick up the respirator bag and follow Roch as he drives the wheelchair down the corridor.

This is Dr. Matthew Hind and I am right, we met him when Roch had the PEG fitted, back in February 2014. Dr. Hind appears to remember Roch, too. This is a good start. After a preliminary chat, he gives us the test results, which are extraordinarily good. Blood gases are excellent and FVC is unchanged since last year. What? That can't be right. A whole year and no change? It means his respiratory function hasn't disimproved at all. Dr. Hind is surprised himself, but there is no doubt. He tells us that he has no explanation for this. Roch is unusual. This is not the way the disease usually progresses and he cautions Roch against advising in online forums based on his experience. Roch is aware of this, however. Roch, as usual, describes himself as a Freak. Dr. Hind smiles but does not agree.

Throughout the consultation Dr. Hind's manner is energetic, interested and engaged. He is careful to include me at all times. He has clearly read through Roch's file and his attention is fully focused on Roch, who he watches carefully.

I draw his attention to Roch's cough reflex and he agrees that this is weak. When I enquire about cough assist machines he asks if we have ever been shown how to use the ventilator as a cough assist? No? Well, then, let's get someone up to demonstrate that now, shall we? Immediately he picks up the phone and Adam is asked to come up from Victoria Ward to carry out the demonstration. We chat for a few minutes and as there is no sign of Adam, I suggest that we return to the corridor to wait as I am aware that there is a long list for the afternoon. Dr. Hind simply says "Would you? That would be great." But I note that the suggestion didn't come from him. We say our goodbyes and return to the corridor to wait for Adam from Victoria Ward. Thank goodness I brought the ventilator, I think.

At this point it's about 15:00 and I am starving. Roch says he's okay but he's only had a Fortisip for breakfast so I doubt this. I ask the nurse from the Bloody Chamber to check the ear and she removes the blue clip and cotton wool. As it's still bleeding steadily she puts two plasters on. Roch urges me to alert Hospital Transport for the trip home and I do this reluctantly as I'm afraid they will come to pick us up before we are done with Adam. Ha! I need not have worried about that.

Adam arrives within fifteen minutes (we have met Adam before, he supports Shrewsbury - football banter ensues) and we follow him down to Victoria Ward, where he explains that the ventilator aids by giving Roch more air (he holds it in) which then gives more strength to his cough. He shows me how to use the ventilator for this purpose and guides Roch through the breaths. He also shows Roch how to breathe in, close his mouth and sniff twice through his nose to build up enough air to fuel a stronger cough, without using the ventilator. It works. Let's hope it works when it matters. Both Dr. Hind and Adam think that at present, Roch doesn't need an actual Cough Assist machine. We are relieved as it means one less piece of equipment for the present.

Adam advises us to go straight to the Hospital Transport waiting area on the ground floor and we get there just before 16:00. At this point I am 'wall falling' with hunger (I imagine that means the stomach walls are actually on the point of collapsing inwards and sticking together. That is certainly what it feels like.) But I approach the rather cross gentleman on the phone and wait hopefully.

"Benfleet (?) I don't care where they are. Just get them back here NOW. What are they playing at?" Then he slams down the phone. I presume he is the Person In Charge. I give him Roch's name and he tells me he's waiting for the Crew to get back.

"He's down for collecting at five," he tells me with a glare that says 'Don't argue with me, love.' In my head I add the inappropriate endearment - he looks the type. He needn't have worried as I am so weak from hunger I would be incapable of forming another sentence. Any strength to resist has evaporated. Perhaps this is why they arrange lunchtime appointments. Mental note - next time bring food.

Hoping very much that Roch hasn't overheard this exchange, I return to him to tell him we may have to wait a while. I can tell by his face, which gets that set, angry look, that he is not pleased. I don't blame him. I ask if he wants a coffee or anything to eat. He refuses so I go in search of sustenance for myself, vaguely remembering that on a previous occasion, the small coffee dock was closed when I arrived on a similar errand. Happily, today the smiley lady is there and I grab a packet of crisps, a twix bar (no surprises there) and a hot tea. Why is it that hospital shops only seem to provide unhealthy food? However, I am not complaining and return to the dark alcove that is the Hospital Transport waiting area to devour my treats.

Another couple wait there, he is in a wheelchair, she sits with her head resting wearily on her hand.Having eaten something, I am sufficiently restored to take notice. She asks where I got my drink and I tell her although I fear that by the time she gets there, Smiley Lady will have closed up shop. Moments later she returns, empty handed. I smile in sympathy and a conversation ensues. Her husband tells me that he has MND and I share the fact that Roch also has MND. At this point I can see Roch is growing very impatient and is in no mood to converse with strangers. I don't blame him one bit - in fact the area is not conducive to his repositioning the wheelchair for conversation. I am happy to be distracted while I wait and the couple are very interesting. Out of the corner of my eye I see Roch manoeuvre his wheelchair so that he can approach the desk to complain. The Person In Charge having left, he argues with someone less belligerent in manner but equally unhelpful. I am even happier now that I am engaged elsewhere, although I guess being stuck in that chair since 11:30 this morning with no food and having to wait around constantly cannot be easy.

I don't think I can share all that couple told me here, as it wouldn't be right.  But to my amusement, they too say they had noticed the Lady Consultant and their hearts sank as last time they saw her -"All she did was blab, blab, blab," the woman confides. Just as with us. Sadly, the news they had been given was not as good as the news we had received. My heart sinks for them but they have  already agreed to seek a second opinion. They have not been in touch with the MND Association although like Roch, he was diagnosed in 2009 and I suggest they make contact. They smile politely. He also has lower limb progression. I liked them both very much and truly wish them well.

As we wait, a driver attempts to chat and passes round some chocolates in an attempt at Christmas cheer. Nobody takes one. "They're Belgian," he urges. He can't believe anybody would refuse a free chocolate.

At 16:30 Roch's name is called and we leave the hospital. We get home around 17:20 and although I am glad we endured it, as we saw Dr. Hind and had a good report of Roch's respiratory condition, Roch is adamant he is never going back. I have to agree, it is something of an ordeal.

He will have to go back, of course - Respiratory care is essential - but Dr. Hind says he doesn't have to go back for a year, unless something drastic happens.
"Let's make it Christmas Eve next time," Roch says, with uncharacteristic sarcasm.
"I'll be here," Dr. Hind replies, unfazed.

When we get into the house, Roch heads straight for the back door, and cigars and beer must be produced, in that order. The only man in medical history whose respiratory condition improves with cigars. I ask you.

The mood is black.

"I'm sick of it," he says. "Sometimes I wish they'd tell me I'm worse, so I could just get it all over with. How long is this going to go on?"

I cannot lie and say I never ask myself the same question, in darker moments.

I know he is tired and hungry. I know with food and cigars and beer, the mood will improve. Or at least, he will be able to put those thoughts away for the present. He has always been good at distracting himself. He is a man with resources - his reading, his music. Years ago, when he left Dublin for London, his mother told me,

"I don't worry about Roch too much. He can be alone. He has the inner resources." Mary knew her son well.

I think of the couple I met in the waiting area. I wonder how we would feel now, if the positions were reversed. If we were talking about a second opinion because the news was bad, and they were at home, she lighting his cigar, he declaring he would never go back. It's an interesting question, because I am not quite sure of the answer.