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.

The First Dose

Well, no one can say I'm not special. As they sent in the first bag of chemo, I experienced the usual side effects that they warned me about, but I also started to find it difficult to speak and actually form words (queue the Scottish jokes ...), which was obviously a neurological effect. None of the consultants in the hospital had ever come across this in their entire careers and so they stopped that particular infusion and the consultants went on-line. Apparently, and I quote, "A few doctors across the world have come across this, but it is exceedingly rare." They are bit concerned about it and so I am meeting up with my consultant before the next one so they can work out what to do, as it is important that I keep the treatment. Additionally, my haemoglobin is down at 7.6 and so I am booked in for a blood transfusion on Friday.

On the positive side, at the end of day 1 I can report feeling okay. Here's hoping I have another easy ride when it comes to side effects. Thank you to those of you supporting us in prayer and for all the kind thoughts and messages we have received. We are always very grateful for the number of people we have around us.

The Chemo

Well, my Hickman line has been surgically placed, my hair is shaved, I have organised cover at school and I am ready for chemo ... ish. I start on Tuesday morning. The Hickman line was straight forward. It's only when I think about it that I feel a bit wobbly. It went into a main vein in my neck and was fed down into my chest and into the vena cava, which is one of the body's main veins. It means that the chemo can be fed straight into the body without using a needle; it also reduces the side effects. The side effects are a bit grim and infections can be life-threatening. If they develop I have to go straight into hospital in Leeds. Anyway, I have been spared the full force of the side-effects in previous regimes and I remain hopeful that I might be spared the full force of this.

The family are all well and back at school. It hardly seems that we have been away! Our dog Basil has had a great day. I came home to find an empty chedders packet and an empty Soreen loaf wrapper. He was confined to his bed as a punishment, but not to worry ... Joel gave him his dinner. Great.

Thanks for visiting the blog. I will keep you up to date.

Dodgy ...

Well, France turned out to be very sunny indeed – everyday in fact. We spent most days in the pool and fun was had by all. We managed to have a very good break … as hopefully the pictures show. I have just come back from the Greenbelt Festival, where the MET office misled us by saying there were going to be sunny intervals. It was great to catch up with many good friends. I spent an afternoon listening to jazz, but was left with my 30 year-old key question unanswered – who is everyone in the ensemble following?

I might well have overdone it at the festival because yesterday was a very rough day – very fragile and energy-less. The main incident for me was my fainting episode. I strongly believe in committing to 'a faint' and so this time passed-out in a forwards direction, forehead-first onto the corner of a wall. It was just Joel and I in the house at the time, but fortunately he was safe upstairs. Eventually I managed to get to the lounge and onto a sofa and I lay there for a few hours sleeping. Today I feel better, just in time for school on Thursday!

I met with the oncologist last Friday and the results of the scan aren’t good. Everything has progressed slightly and the new tumours are absolutely established. So … it’s chemo time. I had a Hickman line put in today (it goes in through a main artery in my neck and down into my chest and means no more needles for now) and I start the new regime sometime in the next week. It is a tough one and I expect my school life to be reduced by 50%. Anyway, I remain hopeful that I will weather it well as I have done all the previous regimes. However, I am also very anxious that the treatment has effect. Mary and I are very aware that I have worked my way through many treatments and that there are very few left after this, if any. We have a real sense of being in classic cancer territory – strong chemo bringing hair loss, risk of serious weight loss, lethargy etc. It feels like a new land. Anyway, we’re heading into it. I am going to chart the number of times people tell me that I actually suit being bald or that I have a really nice shape of head (all well-meant, I know) The children in my school will be much more direct – “Eh, Mr ‘alliday. Wot ye gone and done with yer ‘air?”

Thanks again for visiting the blog.