The good, the bad and the ugly

Let's start with the good: Mark had an x-ray done today and it seems that the needle into his back is actually in the right place after all. The conclusion is, that after the initial positive response, his body became almost accustomed to the dose and so it became less effective. So the dose has been increased and the operation does not need to be repeated. He was walking up and down the ward today so it does appear to be working better so far. He has been moved to the oncology ward nicknamed 'the hotel suite' in part, because every patient has their own TV/dvd player, so he was pretty pleased about that. The bad bit for Mark is that he will miss both of his longed-for 'jollies' as he needs to stay in hospital probably until Wednesday. The reason for this is that he has contracted septicaemia. This is obviously more serious than we thought and he is being treated with four antibiotics at the moment. There is some concern, which is hard to digest when he is sitting up eating pizza, as he was tonight, so we need to hope that he continues to fight the infection successfully and that he can come home next week as planned. Many thanks for your support.

Pass the Patient

Just a quick update. Mark went in to work today to meet with his deputy and teach a literacy class. He found this quite exhausting but dashed home to meet with the physio who has cast his stick aside and replaced it with a crutch. (he feels this is slightly more racy -he can pretend he has a sporting injury...) During this meeting he became noticeably weary and so the physio offered to take him to his next scheduled appointment at the hospital to have a bone infusion. During this procedure he deteriorated further and so after some tests he was transferred to the acute medical unit. It appears that he has some kind of infection and so has been wired up to various drips and tubes. He is improving and seemed quite comfortable when I left shortly after eight. Dr Sebag Montefiore is in York tomorrow so I think the doctors are hoping that he will come and offer his perspective. Mark was also due to see Dr Toomey tomorrow about his malfunctioning morphine-pump so hopefully that will also happen, although it is doubtful whether they will operate while he is still below par. This is still quite problematic as he is regularly in quite a bit of pain.
Through all this, one of Mark's chief concerns is that he may miss his head teacher's conference and/or his weekend in Glasgow... He is hoping very much for fast resolutions. We will keep you posted.

This and That

Just another quick update. First the good news: My brain scan looks to be clear and I fall into the category of 'normal'...(No jokes please) This is a relief and the first actual good news we have had for a while. The bad news comes in two parts. Firstly they are going to have to re-do the back operation completely because they suspect the needle in my spine is not sufficiently far in. This means that my pain levels are still high and I have had to resort to using a stick, so I am keen to get it fixed. Secondly I start chemotherapy on Monday for another full course. Although I am not looking forward to this I am hoping it will keep the spread at bay.
On a happier note I have just spent a great weekend in Glasgow where I did a poetry reading. My two sets were interspersed by excellent music performances and it was a great evening. In fact next weekend I am hoping to be back in Glasgow reading poetry on BBC Radio Scotland and attending the premiere of music written by Malcolm Lindsay (Television Society Award winner). His music has been written in response to three of my poems. I feel honoured indeed.
Let me leave you with a couple of family photographs in which we look better than normal, and bordering on alright.

'Up'

I am happy to be back on my feet and possibly owe this to the steroids that have been introduced to my cocktail of drugs. Last week I was in hospital having a small operation on my back. It went well and morphine is now targeted specifically to the nerve sensors for the lower body. In other words, my head is a lot clearer. I have developed a tendency to headaches which is possibly a temporary side effect of the recent operation. The solution is to lie on one's back . . . tricky in Betty’s. On the subject of my head, my consultant is not fully persuaded that my brain is clear of the disease and as a result I had an MRI scan on Monday. I am awaiting the results and will of course let you know.

We are continuing to receive great support from our friends in Poppleton, meals, lifts, dog walkers and flowers have been forthcoming in adundance. We have also been very touched by messages of support from so many of you as we try to live as normally as possible in the circumstances.

Pancake day

Forgive the dreadful analogy, but I have just been reminded by my children that it is pancake day and ,like the famed pancake, it has been a time of highs and lows.(You see why the poet in this house isn't me...) Last weekend and the days that followed were very rough for Mark and I took the week off work as he was so frail. However, at the end of the week he improved dramatically and began to eat, and get out of bed. It seems that after the initial bad reaction the steroids began to do their stuff.
Mark's brothers all arrived in York on Friday for their relocated 'brothers' weekend' and after some take-away/movie/Betty's therapy It was felt that a great weekend had been had by all. A definite high.
This morning Mark had an operation to have a morphine pump fitted via a spinal catheter. This allows the morphine to get into the system directly without the side effects of the oral morphine. The operation went well, although it is trial and error to get the right dosage etc. so he needs to stay in hospital for a further 2 nights.
In the mean time Mark's parents are staying in town and are poised for hospital visiting/cooking/child care activities. The girls are performing in the Poppleton panto Sinbad the Sailor this week and Gran and Grandpa, myself and Joel will all be in attendance for the first night tomorrow...Oh yes we will!
Thanks for visiting the blog and may all your pancakes be perfect.
Mary

Hi all

Mary and I met with the consultant on Thurdsay so that he could give us the latest news, and I am afraid that it isn't good. A couple of weeks ago when I met with the palliative care consultant she asked me if I wanted to know the prognosis(ie.how long I had left). I said that I would talk about it with Mary, which I did, and we agreed that practically it would be useful on many fronts. So Sebag Montefiori asked me what I thought my prognosis was and I gave an estimate of a year. He said he thought that, unfortunately, I was being optimistic and that we should probably be thinking more in terms of months, although he acknowledged that it was impossible to be precise in these matters. He has delayed the chemo as he felt I wasn't able to tolerate it at the moment. He has also booked me in for a more detailed brain scan as he still has concerns about my periods of confusion. We have told the girls and they are obviously very upset, as are we.


(Mary writing)
I have just taken over the blog for now, as we wanted to get this out to you all but Mark is still a bit too weary. We had plans in place to get away this weekend to try and get to grips with everything. Our friend Rachel came down from Glasgow to be with the children so that we could escape nearby to a hotel but, unfortunately, an adverse reaction to some steroids meant that we had to call out the emergency GP and Mark was bedridden. On a positive note, the good people of Poppleton are proving to be tremendous and there has been a relay team of meal providers, dog walkers, lift givers and supporters. Naomi was whisked away to an audition yesterday at the Theatre Royal and is now one of a team of twenty munchkins to be seen somewhere near Oz in May. Martha has been away on an outward bounds prefect-training residential course this weekend and Joel continues to take pleasure from Spongebob Squarepants...We will update in due course. Many thanks for visiting the blog.

Better late than never ...

Sorry that this is so late. I get caught up with everything. The results of the brain scan were clear, which is good news. It’s one less thing to worry about. The most recent decision therefore is for me to have a course of radiotherapy followed by a course of chemotherapy. That isn’t going to do a lot for my energy levels, but that said, my consultant has said that my fatigue is down to the cancer and not the treatment’s side effects. In other words I am going to have to learn to live with it and adjust to it. The discussions in general have taken a new turn most recently; there has been a bleakness that is new, or rather a sense of coming to the end of useful treatment. For example, the consultant wanted to emphasise that there is going to come a time when the chemo ceases to work and we are down to symptom control, and in light of this I have been referred to a consultant of palliative medicine. I met her today. This whole new approach in itself takes a certain amount of getting used to.

On a happier note, we had a really good Christmas and New Year. I hope you did too. This was quickly followed up by me having my poetry included in an Exhibition of art. I wrote poetry in response to a series of pieces called The Memorandum Series, produced by the artist Melanie Sims, and the exhibition has just opened in The Park Gallery, Falkirk, Scotland. Go if you have a chance; her work is excellent. An accompanying book has just been published featuring both our contributions and I am delighted about that too.

Finally, my contribution at school is under review at the moment - the LEA and the Governors are looking to get the balance right. I have a meeting at 1.00pm on Wednesday and am anxious to get the balance right myself, so we’ll see …

Thanks for reading the blog. I’ll try not to leave it so long next time.