In New York

In New York

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!

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