P is for persistent pain

Wednesday 31st May 2017, 3.21 a.m.

I've just come in after sitting outside for about 15 minutes. At this time of night, everything is on go slow, I'm at a standstill ; not that it matters, because the only goal I have is distraction to the point that the pain is dull enough to ignore.

Last night from about 7 p.m. was extremely painful, I really didn't know what to do with myself, the pain was overwhelming to the point of nausea. We had dinner and after sitting on the sofa, shifting positions, until something was bearable for a few minutes I eventually decided to have a bath so Ed ran one for me.. .it was a scorcher... too hot to get in at first so after a dash of cool water I stepped in. It is almost instant relief... the pain doesn't disappear but it reduces so dramatically that I can't help but let out a loud sigh of relief and enjoyment!

Went to Erasmus yesterday morning, didn't need the scan, but did have a blood test.. the phlebotomist was a good one and it was over and done with free from drama without the need to call back up in the shape of Maureen from frozen foods.

We saw Dr Petri dish who had obviously been informed of the latest updates, results of scan etc. Our expectations in terms of suggesting new treatments were low - we basically went assuming that there would be some the appropriate sympathetic noises "jammer" "helaas" (that's a shame, unfortunately, etc.) and then he would sign us off in Rotterdam and pass the baton back to Femke in Utrecht. Well, he wants to know why/how the Afatinib didn't work and see if the mutation has changed, which means doing another biopsy and based on that, deciding if another TKI (targeted therapy) drug could work instead. We must have looked confused and possibly suspicious because he asked what we had discussed with Femke the day before, an that was only immunotherapy.

What happened next was amazing; I shouldn't be surprised because it is normal SOP, but within many large organisations, simplicity and efficiency seem to be illusive. He called Femke there and then, so he could discuss his ideas with her and so that we could hear their conversation. We saw the mail trail between them over the past day or so and it was huge. Basically what I am trying to say (bear with me, it is very early and I am sleep deprived) is that the way that the doctors are working together, exchanging information and taking the initiative immediately instead of wading through red tape is incredibly reassuring. I do have faith in them and in their interest in getting the best treatment available for me. I am still waiting for Dr Herder to call, but will see.. I am sure I will speak to her at some point over the next few days.. I keep banging on about her to Femke (hope she doesn't take offence!) so she keeps sending reminders.

The outcome of yesterday was two-fold:

• The biopsy will determine whether a mutation has developed which can be treated effectively with a different targeted therapy. If it has, I will start with that, also in tablet form and from Rotterdam. If that is not the case, I will start immunotherapy in Utrecht, but the downer of that is that it's via a drip so I have to go there and be hooked up once every 2 weeks (bit like chemo). Well, the manner in which it is administered is of minor importance in the end, it makes a difference to me and how uncomfortable and convenient/inconvenient it is but the critical thing is whether it works or not and how quickly.

• Getting pain in my lower back and leg under control. I need a further scan for that which Femke was busy organising yesterday and I have got one this morning at 9 a.m. If the pain is located at the point where I have been zapped before, then it is not an option, if it's on a new patch, then I can get it sorted. We are talking millimetres here so it's hard to say exactly, they will see on the scan and decide what to do. I really want to it to be radiotherapy because that has always worked in the past. If not, then I need to manage this pain another way, with medication and the dose will just have to get higher and higher. and the thought of that scares me. I wouldn't say I am a wuss, I've had my share of pain and discomfort in the last 7 or 8 months, but the few hours last night really caught us both off balance. Ed was watching me, and asking if he could do anything or just monitoring when I had taken the medication. The big problem is that it affects my walking and sleeping.. sitting up at a desk is ok... I have to shift quite regularly but at least it is possible to find a relatively comfortable position. Walking is just painful and painfully slow... I am one of those really annoying pedestrians who make you think: "Really?! can you go any slower without reversing?!"

I have had to cancel my exam session for today, but have kept the one tomorrow so fingers crossed that I am well enough to do it and don't have anything scheduled in then. Highly unlikely but Femke seems to be working miracles in terms of getting appointments at record speed, so who knows. If they can zap and can zap tomorrow, I will do it!

In desperation last night, I began researching 'self-help' pain relief, or at least complementary therapies like yoga, acupuncture, massage etc. there are two more 'M's to include: Meditation and Mindfulness. There, I have said it... the latter I do have issues with, even though it's just probably testament to my ignorance. I have done yoga now and again over the years; first experience wasn't the best and involved a male yoga master, who shared too much of himself (short shorts and no underwear) a dimly lit, stuffy room, and lots of bodily function noises from the older women in the group. Another time was Ashtan yoga which was more like an exercise class (quite tough) with all yoga moves, another one was restorative which was nice, but I think I just fell asleep, it was that slow and relaxing. Not sure I would be able to achieve that at the moment. Showing my ignorance here, but not sure what the real difference is between yoga and meditation; I presume it's the physical element, yoga being more challenging and meditation focusing more on calming the mind and breathing. I am happy to try anything, of course will continue to take the drugs.. but in the words of Verve, if/when "the drugs don't work' I need something to fill in the gap.

Well, watch this space and if anyone has any tips, please let me know. Like I have said, I am open (despite the derogatory comments) to anything.. what I have I got to lose? (dignity, time, money... but apart from that!)

Going to make my own museli today, I really like cereal and am losing inspiration for breakfast options, but shop-bought stuff is full of sugar, so thought I would try my own.. can't be that hard can it?!

Talking of food... it's still bloody early, but I am hungry. I could go back to bed for a couple of hours or eat something.. or both?