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.