It's all go here...

We are slap bang in the middle of the Works to the house and it's bad timing but that couldn't be helped. This past week has seen the noisiest, messiest, dustiest part and here I am stuck at home recuperating after my surgery last Friday. However, I don't mean to complain because there's a lot to be thankful for. I've had Maura here all week and she has looked after us all and helped to clear and pack stuff away and been available to assist with decision making about tiles/colours etc. Whilst I've been laid up she's been the contact point between the guys on the job and me, when Roch's been unavailable. To do this she's been up early every day so I can rest up and she can be on hand when they arrive for work in the morning. A Pearl beyond price.

And then there's Tony. He is running the Job. I think I mentioned him before - Roch's cousin. We have absolute confidence in him and it is such a relief to leave this business in his very capable hands. He could not do more for us. I do not exaggerate. He anticipates almost every need and is usually on hand with a solution. He is trying to make sure this whole process is as stress free as possible, given the unavoidable levels of disruption entailed in having your kitchen ripped out and replaced with a shower room, a wall built to make a separate area for a bedroom downstairs, a completely new kitchen and boiler fitted...and that's just what they've doing so far. There are other jobs to follow, including making both front and back entrances wheelchair accessible and adjusting the floor levels - hallway through to wet room. I could go on.
But Tony's not just a decent person who totally knows his job. He's also very good company and it's a pleasure to spend time with him. So like I say, a lot to be thankful for.

I'm surprised and a bit disappointed that I am still feeling crap myself. Tired and weak and really not up to things. You know that feeling where you stand up and immediately feel you want to sit down again? Well, that's it. I'm told the procedure went very well, no complications - so that's a relief. Bit of a scary moment when they were explaining the possible risks beforehand. A pleasant female surgeon from Colombia reeled them off in an attractive, musical accent, ending each sentence with a question in her voice - "So - we could puncture your bladder? Maybe your bowel? Cause a haemorrhage?" She almost made it sound like she was offering a choice of medical errors. Of course I knew the risk was minimal but for a tiny instant fear had me picturing myself running barefoot across the car park, hospital gown flapping open behind me, making my escape...

All the surgical and nursing staff were very good to me and nothing got punctured, except possibly my pride (very difficult to maintain one's dignity in a hospital gown, I find) as James, an extremely cheery and obliging health professional, did up the ties at the back for me after the surgery and assisted me as I made my wobbly way to the toilet. Thank you James.

Through it all I am acutely aware of Roch, struggling up the stairs more, slowing down a lot I think but soldiering on as usual. He's pleased with the way The Works are going - more than pleased -delighted - but it's hard for him when I'm out of action. It's hard for me too. Of course I'm kind of used to feeling a bit weak and having to recover strength after migraines, but Roch has never had that. He's always been the strong one, physically. It's new for him to have to rest after finding that he's done too much. It's like giving in for him. Although he did remark yesterday that one of the good things about MND is that lovely moment when he's b*****ed, when he finally gets to lie down in bed. I was glad to hear this positive thought but may have spoilt the moment somewhat, as my honest response was 'Roch, there's nothing good about MND'. He kindly conceded that as an MND spouse, I was entitled to this view.

So, where are we now?

So, where are we now? Well, Kate is off at Exeter University and Bless her, she has fallen victim to 'Fresher's 'flu' but has settled in nicely and we are so proud of her! It's a wonderful opportunity, but it will be hard for her, and not just for the usual reasons. She knows she must expect to see changes in her Dad - there will be developments between visits and the decline will continue.
As for us, after various delays beyond our control (and some, I admit, within our control - really, none of us wants the building work to happen) we are All Systems Go for Stage 1 - the new kitchen. I find I can't get very excited about it, (for shame Deirdre, who doesn't want a brand new kitchen?) Thanks to Maura for working so hard to clear space in the shed for storage. She made herself ill (!) and of course, thanks to Chris. Well, frankly without Chris's plans we would never have got this far. Enter Tony, Roch's cousin, who is going to carry out the works. The kitchen is chosen (what a palaver) and to be delivered in the next two weeks. Stage 2 is the Wet Room and you're right, Steve, the Clos-o-mat is sooo expensive.

We have been to the quarterly meeting of the local MNDA group, a gathering which I find more helpful now than before, although it's never easy. They had a guest speaker there, a speech therapist with special experience in MND. She talked to us about communication aids and also explained how speech/swallowing is affected. I think I've mentioned that Roch feels there may be a slight deterioration - his voice may be getting softer and he is conscious of a droop at the sides of his mouth. I did ask her about this, and she says that's how it starts, as the muscles weaken. However, this is not obvious to others (Tom will tell you that Dad can still raise his voice when necessary!). Also, at the dentist the other day Roch found it difficult to breathe during the examination. He had to take breaks. Lung capacity seems less. So he'll have to have this tested and we'll see how it's changed. The walking is slow but the wheelchair has not been used since Somerset. Thank God he still drives. Only one fall - and that happened playing football in the hall of our house with Tom! Don't even get me started...he didn't hurt himself, but it was a bit of a struggle to get him to his feet again.

We went to Ikea last night and as we left, clutching our plans and quotation etc., the guy closing up stared at Roch, open-mouthed. We figured it was because Roch was using his rollator. The man's curiosity was so obvious it was comical. It could have been upsetting but we ended up having a good laugh. "He didn't say it out loud, but his eyes said, 'what the f*** is wrong with that guy?" said Roch. This would be the first question - we do know there is a second question, mercifully seldom asked but we guess in the minds of many, and recently posed by an acquaintance, so - "You should have said, "I've got bloody MND awright mate? - and yeah, we do still have sex!!" was my suggested rejoinder to the question in his eyes... So now you all know and you can stop wondering. (I realise this may be 'too much information' for some of you, just forget I ever mentioned it).

As for me - well, isn't the menopause a great thing? I don't know how much of the fatigue, headaches, low moods and cotton wool head is false menopause, real menopause or just mnd wife symptoms! Does it matter? Just two weeks and the fibroid comes out. Hopefully recovery will be swift and I will start to feel much better, as the effects of the hormone injections wear off. Then we'll find out if it's the real menopause...

Last but not least I record here the very sad death of my dear Auntie Maura. Roch and Tom managed beautifully in my absence as I raced home to Ireland for the funeral in Kilkenny. It was good to spend time with family and to have a chance to be part of a very lovely farewell to a remarkable and much loved lady. R.I.P.

Overlea

We have been here at Overlea for almost five days now and are nearing the end of our stay. How can I begin to describe this experience? Well, I can start by saying that it has been a privilege. After the death of her husband Michael, at sixty-one, from Motor Neurone Disease, in January of this year, Frankie Woods decided to open their home, Overlea, to newly diagnosed people and their families. We are the eleventh family to have stayed here this summer, with two more families to come. The Woods had planned to spend their retirement here but now Michael is buried in the wood which he planted on Overlea land. We cannot begin to express our gratitude for the generosity of spirit and openness of heart shown by Frankie in offering their beautiful house and land to families like us. We will never forget Overlea and although we have never met her, we will never forget Frankie.

It is not an overstatement to say that this place is idyllic. From the decked terrace, which runs all along one side of the house, the guests have a magnificent view of the Somerset Levels. Fields and hills, as far as the eye can see. The two fields sloping down before the house belong to Overlea, to the left, a young wood - a new bench just visible, a hint to tell us where Michael is buried. It's not far from the Badger Sett he built. Birds gather to feed in a special area made just for them, beneath a handy tree in which they can conceal themselves from watching guests. Binoculars are provided. Michael was a naturalist and had written a wildlife column for the Western Daily Express for 15 years. Frankie often illustrated his work and there are many examples of her artwork around the house. Everywhere there is evidence of intelligent good taste and an eye for beauty. The peace of this place enters your soul.

The house is adapted for use by a disabled person. In fact, there are two wheelchairs here. One is motorised. The idea is that someone living with MND can test drive it, try it on for size, if you like. Roch has tried it once or twice. Tom has sped about outside on the terrace, showing Dad how it's done. We are just about to embark on the works to adapt our house and we have picked up so many tips and ideas. The outright winner is the toilet that washes and dries you! No hands required. Gotta have one of those.

But the star of the show has to be the Hot Tub. Really, nothing for me can beat lying in the hot tub on our first night here, beneath the stars, gently massaged by the bubbling water, all of us together in peace and luxury! Now that's a memory to treasure.

Happy Anniversary to us!

It may be of interest to note here that it was our 20th Wedding Anniversary on Tuesday. We celebrated in style! Roch had booked a room in a very posh Mayfair hotel. As the room wasn't ready when he arrived, they bumped us up to a deluxe suite! What luxury. We ate out at Langans in Stratton Street and had a scrumptious meal. Our fellow diners just oozed wealth - I mean, you could smell the money folks! We had a great time pretending we were used to the highlife. Actually I could get used to it only too easily. However, the highlight of the evening for Roch came as we prepared to leave and he realised he had been sitting with his back to George Graham's table. I was severely admonished for failing to recognise such an exalted personage (the closest I got was remarking that there was a guy at the next table who reminded me of Jacques Chirac, balding and rather 'weaselly' looking - turned out to be George). Now if it had been Arsene Wenger, I think Roch would have taken him back to the hotel instead of me...Anyway, lucky for me Arsene didn't show so it was back to the hotel for a nightcap (later, minus an arm and a leg, we retired to our suite.)
Just thinking, two years ago we were planning our first trip to New York and we didn't know about the MND although we realise now it was already affecting him. A year ago, we were looking forward to taking the kids to New York and he was walking with a stick, now he walks with two sticks and we are preparing for the wheelchair. You know, that's not as bad as we were expecting. It's true, in a way it's a merciful disease, because you do have a chance to get used to the changes. Well, we are being given that chance. I do appreciate that not every case is the same and some people don't get much chance to get used to one change before the next is upon them. It's not easy, but believe it or not, it could be worse.

Placebo or not Placebo, that is the question..

So you know that Roch is taking part in this Clinical Trial for Lithium Carbonate? We had an interesting conversation about it the other day. We don't know whether he's on lithium or a placebo but he asked me to have a look at the web for side-effects associated with lithium. So I did. The reason he asked was because he feels in general he is not feeling too depressed. Sure he gets low sometimes - but he's sleeping ok and coping well enough. So he wondered whether he was taking lithium and that was what was helping his mood. Maybe so. A symptom of ALS which seems to be almost peculiar to Roch is the tremor. We have discovered that not many ALS sufferers experience this. Now he always had a bit of a shake in his hand - apparently a percentage of the general population does, but the tremor is much worse now and tremor is a side-effect of lithium. There are other side effects which tie in with various physical symptoms he has noticed in the last few months, like that metallic taste in his mouth. It's not proof that he's taking it, but somehow I felt a little cheered by the thought that he might be, and that it might be helping. You've got to take your comfort where you can.

Reasons to be Cheerful

He was out in the garden today, rescuing a field mouse from Oscar, the Killer Cat. I watched as he knelt down by our birch tree, where the mouse had taken refuge under a bucket (don't ask me why the bucket's there - it's filled with stones and bits of pottery). As the terrified rodent escaped to safety (with Oscar watching balefully from inside the house), Roch tried to stand up. I waited for a moment to see if he managed alone; then went out to offer assistance. I found it difficult. He did stand up with my help but there was a moment where I wasn't sure we'd do it. That depressed him, not being able to stand up alone. He says he did his ALS functional rating scale yesterday and he's down to 30 points now. I think I might have mentioned it before - it measures how the person is functioning in different areas of day to day life using sets of questions 1-4 in each area. As time goes on, the person will be able to do less and less and the points rating will fall. Roch says the next level takes him into dependence mode and there's no doubt, things are changing. I noticed last night he had trouble turning himself over in bed, that's a first. He's getting more self conscious about eating, too. He says soon someone will have to cut up his food for him. He says he's dribbling but I can't say I've noticed that. He tells me that people are beginning to say they can't understand him sometimes when he speaks. Now that's not something I've noticed at all. I do think his voice may be softer tho'. Is that part of it? I don't know. He is scared of the future and so am I. It's hard to take comfort from the fact that there is still so much that he can do. As he said today, in an effort to be cheerful - 'What can I do today? Well, I can still drink a coffee without a straw. So let's do that then.'

Not to go over old ground but it really doesn't seem fair, does it? We are twenty years married tomorrow. I don't know how many years we have left together, and please don't tell me 'No couple does.' Yes I know that but don't try to tell me this is the same.



It's not always been easy but something tells me it's going to be a lot more challenging as time goes on. I think I'm doing ok so far, but I know I haven't been tested yet.



'Lord, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.'

As nice as pie

Return to the blog. Have found it really difficult to write recently, as is evident from lack of entries. This stuff isn't easy and although I thought I could write about my feelings, the more I'm feeling the less I want to talk about it in public. Recent weeks brought a new fear to the table and I can talk about it now because it's over. In short, a cancer scare - it was there, the word was mentioned but turns out that the 'unexplained mass' an ultrasound scan showed is a fibroid, which joins the ranks of the 'multiple fibroids' which have recently come to light in and around my 'uterine cavity'. Loverly. Many thanks to Professor Malone (some of you know him as my big bro, Dermot) for assistance with a rapid assessment. Now I may have to submit to a minor operation to remove the most troublesome of these 'motherf***ers' (to quote our Kate). If that doesn't work, a hysterectomy is suggested. Work has already begun and the first of two hormone injections was administered yesterday to attempt to shrink the said motherf****ers. O joy I will now experience artificially induced menopausal symptoms. In my naievety I rolled up a sleeve for the nurse, but this turned out to be unnecessary as the site of the injection was in an entirely different area...

I have to think about treatment carefully - I can't be out of the picture for long. Roch can still manage really well now but if a hysterectomy becomes necessary sometime in the future, that takes me out for weeks and weeks - no lifting (not even a kettle, I'm told). The suggested treatment removes the fibroid in the uterus, may or may not require general anaesthetic, takes an hour, recovery they say in 48 hours (yeah right), bleeding for up to a month afterwards, but it may not work and the thing might grow back. So is it better to risk a hysterectomy now? Or leave it and hope the fibroids can be controlled by medication and other non invasive treatments.

So the last few weeks have been difficult - now I'm thinking about how we can manage with the proposed treatment for fibroids but I'm grateful because let's face it, I could have been wondering who would look after Roch after I died first of cancer of the cervix - and how about the children? It's important that I stick around for as long as I can for them. I tried not to think about it but the cancer word was in my head and I just don't know what it would have done to Tom or Kate to have me struggling through treatments and having that uncertainty. As for Roch, he found it really difficult to talk to me about it. Well of course he did. He was terrified. That didn't stop me feeling resentful. When we found out the good news, Roch said 'Now it can be me me me again, to which I replied 'Roch, it never stopped being you you you.' Well that's how I felt.

So does that make me a bad person? A very dear friend said to me recently that the thing she thought she would find hardest in my situation was having to be nice to a terminally ill partner all the time. Well it is difficult sometimes and I'm not always nice to him, and I do feel guilty about it but I don't think he wants me to change the way I treat him. I can't be nice as pie all day every day and he can be very annoying sometimes. There I've said it. It doesn't mean I don't love him.

Anyway, we are now in complete agreement on one point - there really is only room for one terminally ill person in this house.