Escaped

Mark here. I was discharged this afternoon and am very happy to be home. Our family life is actually quieter than the ward! The man next door to me wanted to tell me all about an autistic adult he knew and it really was an exceptional account in terms of length. I had just held my breath, turned blue and dropped senseless to the floor just to make it stop when ... it did! He took a break. I got up, lay back, stretched for my book when he said, "Now, as for his sister ..." A difficult time.

I had a pretty heavy conversation with my consultant this morning. It turns out that I was much more unwell than I realised and the septicemia proved very hard to shift. He doubts that I will receive more chemo because he doesn't think my body will be able to fight the infection if it returns when my immune system is low. To be honest it makes me feel very vulnerable indeed as I caught this infection from one of my tumours and I need to stay free from infection in general and this one in particular. Anyway, for now I am enjoying my new found freedom and it is great to be back with the family. Betty's here I come!!

Birthday moments

A short update: Mark has been moved back onto the ward, but he won't be bored because the man next door loves to chat...Also it was Joel's 9th birthday today so here are a few photos including a special father/son time, and Basil having a pensive moment missing his master.

Hanging out on ward 31

Things have thankfully been a little calmer since my last entry. Mark has a new morphine pump, which is working well, and the balance seems to be adjusted correctly which is a big relief. He came off of the intra-venous antibiotics but the infection quickly powered back and so he had to be re-attached. In a day or two the oral anti- biotics will be tried again and then it will depend how Mark responds as to whether he will be allowed home. We're holding out for Thursday at the moment. As you can imagine he is quite fed up, desperate to be well enough to be 'free' and very eager to come home. He is missing his on-line contacts but has been cheered by his many visitors. (We continue to hope that the population of York remains healthy so that nobody more ill will need his room...) I also hope that you may read the words of the weary poet himself on here in a few days..!

Snakes and Ladders

We are feeling a little one step forward and two back at the moment. Mark continued to leak from the port and it was decided to re-do the operation. This was scheduled for mid morning on Tuesday so he was nil-by -mouth from Monday night. When I went in on Tuesday at about 4.00pm the operation had still not happened. He was desperately hot and thirsty and also uncomfortable as he hadn't been able to take his oral medication for many hours. At about 5.00pm he went down to theatre and I returned at 7.00pm to find that the operation had apparently gone well but he was still in recovery. At about 8.00pm it was felt that he had stabilised and Mark was returned to the ward, but things deteriorated very quickly. It became apparent that the pain relief was either not working or was ineffective and he was quickly struggling. He was given oral morphine and his usual oral medication but nothing made any impact. At this point I think I became a gentle nuisance as Mark tends to suffer fairly quietly. The anaesthetist was called but was in theatre, so someone was dispatched to A and E to fetch some gas and air and after a while a doctor arrived. Alarmingly he looked about 13, but was clearly capable and decided on some intra- venous morphine - which then had to be mixed up... This was all very distressing as Mark was quite desperate and everything seemed to be taking ages. He was in acute pain for a long time. Finally Doctor Toomey (consultant anaesthetist) managed to break out of theatre and come to our aid. He quickly sent an anesthetic down the newly laid tubes and relief finally came just before 10.00pm
The night was quite calm and the new pump has been adjusted to give a greater concentation of morphine and to allow the boost option more frequently. However, Mark's temperature went up over night and there are more concerns about infection so now he has been told that he needs to stay in hospital for a further 7 to 9 days... On the positive he does now have a room of his own and is happy to receive visitors!

(Please forgive my apparent neglect of many e mailers and texters- all contact is appreciated but it may take me a while...)

Moving on

Things have moved along a little. Mark appears to be fighting the septicaemia successfully and it is now being targeted specifically with just one antibiotic. He is feeling quite well in himself, although his haemoglobin levels are still low in spite of blood transfusions. The main concern now is the issue with pain control. Mark had a very bad night on Saturday with escalating pain. It turned out to be the morphine pump which was steadily running out of battery power...The fact that there is no warning system in place is a rather disastrous design fault.
Having sorted that there was further alarm when there was a leakage of spinal fluid out the port in Mark's abdomen.This has lessened, although It now appears that the anaesthetic is leaking which accounts for more increased pain. If this problem does not sort then the operation will need to be re-done after all. This all adds to Mark's frustration as he is very keen to come home, get back on track and begin the chemo as planned.
Back at base we are managing pretty well although we seem to be banking up practical niggles; We have an MOT-less car, a toilet that won't flush, a broken pipe outside which gushes onto the window when the sink upstairs is emptied and today Joel attempted to recreate a spiderman moment by apparently scaling the chest of drawers, drawer by drawer. This led to an almighty avalanche of books,dvds,dvd- player,tv,drawers and chest. Thankfully, and perhaps miraculously, Joel escaped with a few bruises and an impressive black eye...I was grateful for a visiting samaritan who came armed with lemon drizzle cake, a willingness to shift furniture and instant contact with a nurse (just for reassurance...!) Thanks for visiting the blog.

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.