Tuesday, 2 February 2016
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
|Present time - sharing memories|
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 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
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.
Wednesday, 23 December 2015
Roch goes back to the training room
On 3rd December, Roch held court at one of the sessions on a Study Day Programme for Health Professionals at Princess Alice Hospice. He was there at the invitation of Gill Thomas, (Professional Practice/Therapies Educator). The subject of the study day was ‘Supporting People with a Diagnosis of MND’ and Roch was there to talk about MND from the viewpoint of a Person Living with MND. Many thanks to Gill who made it easy for both of us, ensuring that everything possible was done for Roch’s comfort. Rock's segment of the training day was presented by Gill as a series of questions and answers. Gill had spent time with Roch in advance to talk through his experience and on the day the questions she posed were around those areas of his life with MND which she knew would interest and at the same time instruct her course participants. The session went extremely well and Roch was in fine form - as eloquent and charming as always. I’m sure those present found it very useful. I was relieved that he didn’t run out of ‘puff’ as he says himself.
|Roch with Gill|
West London & Middlesex Branch MND Association 20th Anniversary Dinner
|With Mandy Garnett, Branch Contact - "A Force of Nature..."|
On the evening of 4th December, Roch, Kate, her boyfriend Will and I went along to the West London & Middlesex branch 20th Anniversary Dinner. Chairperson Janis Parks had asked me to give a speech on the night, just before the auction. I spoke about what the Branch has meant for us as the family of a person living with MND. I was flattered and amazed at how well my speech was received and I can certainly record here that the entire night was a resounding success. I was too nervous to eat much, so I can’t really comment on the food (except - Mick Stone did you work out what the flavour of the green sorbet was in the end?) but the company was great, so was the music - and the decorations were very festive. Best of all, I believe quite a lot of money was raised.
|Will, Kate, Me, Roch and Janis Parks (Branch Chairperson)|
|"And another thing..."|
So many people came up to me after my speech and told me that what I had said resonated with them - usually their comments were prefaced by “My husband/wife/partner/brother/sister/uncle…died twenty years ago of MND - or ten years ago - or six years or two years ago” - so many people affected, having gone through what we are going through now. It’s a disease that leaves its mark, even after many years. It creates a feeling of fellowship and understanding, yes - but I notice that amongst carers and relatives, even many years after their loved ones death - the healing must continue, because the scars it leaves are deep. In my speech I mentioned, for the benefit of those present who may not have been aware, that MND comes in different forms and that each person with MND experiences symptoms differently - this is one of the reasons I think, that it is so difficult to find a cure. But although patients’ experiences differ, I believe that the family caregivers’ experience is similar. We all have to watch as our loved one is physically devastated by this cruel disease. Our family is lucky as the progress of MND in Roch has been slow. In its most common form we know it proceeds with a stunning rapidity, which, for family, must be overwhelming to witness.
I talked about my experience of the first Open Meeting we attended (pretty overwhelming) and contrasted it with the latest, which took place on the Sunday before the dinner (amazing). Both were Christmas gatherings. The dinner and the most recent Christmas Open meeting reinforced for me the feeling of being part of another, bigger family. Like family should, the members of this family welcome us, value us and wish us well and I know they will do whatever is in their power, to make living with MND easier, more bearable - not just for Roch, but for me and the kids too. That evening was one hell of a ‘high’ for me.
I cannot end this ‘Highs’ and ‘Lows' blogpost without mentioning one other High - at the Christmas Open meeting we met Branch Patron Jeremy Vine. The usual welcome treats were present, including Santa, a massage for me and plenty of delicious cake but the highlight of the evening for me was meeting Jeremy, who brought his talk to a close by wishing Roch a Happy Birthday and introducing the Birthday cake!
|Happy Birthday Roch!|
Saturday, 19 December 2015
There have been highs and lows since my last post and I will tell all in the next few blogposts, not necessarily in chronological order.
But first, thank you to everyone who contacted me with messages of support. I tweeted ‘The Taxman Cometh’ and was fortunate in that my tweet was noticed by Jim M, who offered great support and advice and signposted us to TaxAid, a Charity which helped us out of our tax hell. Caroline there advised us not to answer the door unless we knew for certain it wasn’t the Bailiffs! This was helpful although slightly embarrassing as I had to call through the door to ask who was there - thank you for that HMRC - but it was good to get practical help on this.
Caroline worked out that HMRC had estimated an amount of PAYE Employer contributions owed by Roch based on the amount paid in respect of Jenny’s employment last year. However, Amelia is self employed and so no PAYE employer contributions were owed. The payroll company should have notified HMRC that the PAYE Schedule should be closed and they also should have filed the appropriate Notices of No Return. They had failed to do this. As you already know, their failure to act left us in an extremely stressful and anxious situation, not to mention embarrassing. Roch had sent them copies of every demand letter asking them to deal with it but they never had. In fact, they told us that they couldn’t speak to HMRC and that we would have to sort it out ourselves. When we eventually managed to speak to someone at HMRC (not an easy task), he told us that this was ‘nonsense’ as the payroll company were clearly marked down as Roch’s agents, as they dealt with payroll on his behalf and he told us to ask them to call HMRC themselves.
As far as we know, they have now filed the necessary notices but they have yet to confirm that they have spoken to HMRC. I feel safe enough to have taken down my notice from the inside of the front door, which reminded everyone in the household not to open the door, without politely enquiring who it was outside. The postman, the amazon delivery man, a few neighbours and a number of people who called to the door in the evening and did not answer my question - were all treated to the “Who goes there?” treatment, the latter few being denied entry as I could not be sure it was not the Bailiffs. So, sorry if that was you out there on the doorstep. You should have answered!
The search for new Carers to add to Team Roch continues…
I was very low about this last month but things seemed to be looking up in the first weeks of December when two people were recommended to us. We arranged shadowing sessions for each of them for the morning routine and Roch gamely consented to be showered and dressed in front of strangers (on separate occasions). I had to admire him for attempting small talk whilst having his morning piss in a bottle. Both women were lovely and we all got on really well, which made it particularly disheartening when neither of them accepted the position. I know they had their reasons but I must admit to a day of darkness when I realised neither was coming on board. All my optimism evaporated and my mood crashed. It was one of those days when tears were never far away and the knot in my stomach got tighter and even more tangled than usual.
Whenever I feel that my life is spiralling out of control - that’s when I need to control the little things. I wake early but cannot rest, my mind full of negative thoughts. I have to get up and I find myself constantly on the move, doing things, ticking tasks off a mental list. It’s only when I’ve tackled most of the items on the list that I feel like I’m regaining some kind of control, but by then I am worn out. I can barely eat when I feel like this so I am probably ‘weak from inanition’ to quote Jane Eyre. As you may have guessed, this was one of the low points.
(Monika, it was at this point that the Daily Energy Routine took a hit after two weeks straight without missing a session. In what felt like a bitter twist I didn't have enough energy for the daily energy routine. However, I am back on track now, hoping to be energised and have clarity of mind coming up to Christmas!)