'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.

Mixed News

Well, we received very mixed news today when we went to get my scan results from the consultant. The good news is that the tumours in my lungs have been reduced by the chemo and that the cancer in my pelvis has not developed in any major way. Sadly, the tumours in my pelvis have not been reduced in any major way either. Disappointing. Also, another worrying possibility has emerged. There have been a few occasions when I have wakened up in a rather confused state. Mary has been unable to get any sense from me. The consultant has mentioned that this could POSSIBLY be a result of the cancer having spread to my brain. He has emphasised that he isn’t saying it is likely, or probable, but he does regard it as a possiblility. For that reason I have a brain scan booked for early January. Although this is an attempt to rule out this spread, we can’t help but be worried.
Other news, briefly, is that they will probably run the chemo regime again in mid-January, as it is possibly preventing further spread in the pelvis. I am okay with this, as I tolerated it pretty well this last time,

Anyway, we are all managing okay, so feel free to contact us by phone, email whatever. We are looking forward to Christmas and New Year … a nice quiet time??
My Christmas cards will be of an electronic nature – hope that’s okay.

I will keep you informed as to the scan times and the results
Thanks for visiting the blog.

More news

So, here is the news. The final chemo dose has been administered and I have just had a scan to see if it has done any good. I will get the results of the scan on December 11th, when I meet with my consultant. If it has done something then I will have the pleasure of having the course of chemo repeated! If it hasn’t had any affect then we will see what the good doctor suggests. I think either way there is a short course of radiotherapy coming in the near future to try and treat tumours which have, sadly, developed during the chemo. The effects of the chemo have accumulated and I have been a bit rough this week. I think it’s because I need another blood transfusion (I have had three) and I am seeing my GP tomorrow to try and get a blood test to measure my Full Blood Count. It will certainly be nice to feel a bit of energy again.

Family news - Joel and I had a trip to Scotland last weekend to see my brother, Simon. I have attached a photo below. It was great to see the sea again, if only for a very short time. Naomi is well, but losing faith in us. She fell over on an ice-rink last Saturday and ended up in First Aid with a very sore arm. I applied all my medical knowledge and experience and reckoned it “looked alright.” Mary agreed with me so we carefully applied a tubular bandage. We eventually took her to A&E on Monday – broken in two places! To be fair, it is one day better then when Martha tore all the ligaments in her foot last Easter. Martha and Mary are also well, looking forward to the end of term. It must be soon.

I will blog again with the results from our December 11th meeting. Thanks for visiting.

Half-Way

Well, I am just over the half-way mark. There has been both good and bad. The bad, quite briefly, is that I get lost in the system every week. When I turn up, they are always surprised to see me and I am never on their lists. That said, they sort it out and I am given treatment. I was, this week, moved to speak to the ward manager who has promised to sort it out. There have been no scans yet, but I have seen my consultant twice and he has decided that the growth of the tumours has slowed or stopped, which is good, because they were increasing at a rate. He won’t, therefore, be interrupting the chemo to deliver radiotherapy. Good news. I was reading the regime information again last night and it was explaining apologetically that hair loss and a couple of other nasty side effects are inevitable. Not so! In fact I am growing my hair back because I have not lost one. I am also avoiding a whole list of other problems, which is making this a lot easier. My pain levels are up again, at the base of my back, and if I forget to take the pain killers during the day, and I do that regularly, I seriously know about it and all activity needs to cease until I take them and they kick in. This can take over an hour. Shall I set my phone alarm? Maybe stop thinking about it and just do it?

The family are all well. Martha regularly advises me to ‘take a chill pill,’ to which I reply, ‘Whatever..’ Is this the right response? Joel is doing well at school, especially in the art of conversation and has been practising answering questions. He had one the other day with his teacher, Sarah:

Sarah: Why is the lion trapped?
Joel: He’s sad..
Sarah: Why is he sad?
Joel: He’s scared.
Sarah: What’s making him scared?
Joel: Stop talking, Sarah.

If only we could end our conversations like that..

We are off to bask in sunny Scotland now. We’ll try and get some photos to post on here when we get back.