Life Blog – Still Waiting For Treatment

By and large I feel so much better than last week. However, I am still on the morphine slow release medicine and it can be really tiring. I got up today to go to work but was just so exhausted that I had to cry off sick.  I felt something like normal by about three this afternoon.

My treatment has still not turned up and we were getting anxious about this. Peanut chased the consultant’s secretary for it. The upshot is that it has all been approved and applied for but it hasn’t yet turned up from Japan. At least we know it is going ahead so we will stop fretting and wait for it to turn up.

I seem to get anxious about these things when I am off, so my mission for tomorrow is to make it to work and then before you know it, the treatment will have turned up.

That’s it for now and as Biggles might say, “Keep cavey” and you’ll dodge the monsters.

Life Blog – Perfecting The Pout

Well it’s been a tough week that’s for sure. I thought I had come out the other side on the pain front last week after visiting my consultant but it turns out that was not the case. Put simply the pain came back and I ended up in Accident & Emergency at Worcester with unbearable pain.

At first thought I spent 3 hours there in great pain for little result, just 20ml of morphine and I left in as much pain as I arrived. However, that is not the whole story as basically they did fix me.

I got a lot of advice on how to hit the pain with the oramorph. Basically hit it and hit it again. And again. This is what we did back home and I got control of the pain. We kept on top of the pain. 

Today we went to our local GP and we have switched to slow release morphine supplemented by oramorph. This was based on past use and the amounts I have taken recently. I score myself at 80/100 today against 20/100 yesterday. The score would be higher but I need to eat more, resolve my bowels better and feel less tired.

Fun is back in town though, even if it is just trying out a selfie pout. Anyone over 55 feel try to do better! Saying hello and writing a few words here is also an option that just wasn’t feasible. A return to work on Monday is something even my GP thinks can be done.

And then there is Lady P. What can I say? She puts on such a brave front, practical when called for, patient always, kind always, always there with a smile or a kiss and ready to make some fun. Sometimes this journey we are on is not a giggle but her endeavours are just amazing. I can say no more than that she is a new level of superhero in my mind riding high above Biggles, Bond and Elvis. Super P!

Anyway enough of my sentimental tosh, I’m sure it just gets too much sometimes. The salient point is that I feel so much better, I can see the important stuff in life again. I can get irritated by people’s spelling or grammar mistakes, or I would “of” done, if I didn’t want to “waist” my time doing so and then realise that actually, my grammar and spelling is only average at best, so pot and kettle etc.

(Ooh a GP has just revved and throbbed outside, it’s Mrs P back from shopping. Is it lunch or Chaper One of “Shades of Thunder Blue?”)

Life Blog – Consultation at Worcester

Last night just after 7pm I suddenly had a vicious attack of pain in my back and bowel. The pain was simply excruciating and relentless. It appeared that my bowel was blocked and I was repeatedly sick bringing everything up that I had eaten or drunk. I was constipated and nothing would change that. I tried morphine for pain relief but sicked it up half an hour later. 

A hot bath brought some relief and with Lady P holding my hand I fell asleep in the bath. The relief was wonderful. I got out of the bath and the pain returned. I could not find a comfortable position to lie and the pain went on all through the night.

Morning came and the pain persisted. I had another hot bath and more relief as I was able to sleep for half an hour. My Florence again held my hand. I had a consultation today in Worcester. I arrived there in incredible pain. The drive there was horrific. Every bounce and bump of the car reverberated through my body hurting my back and side. 

The consultant immediately examined me. He got me two paracetamol and within half an hour the pain eased! Paracetamol for God’s sake. All that agony and we never thought of paracetamol.

The consultation veered between fixing my pain and discussing my recent ct scan result. It turns out that there was more going on than we realised from our Oxford consultation. Yes the tumours in my liver were growing but so too are the lymph nodes in my back. These might be a part of this excruciating pain as they press on nerve ends in my back.

Repeating the SIRT treatment would help with the liver but not the lymph nodes. The consultant had another treatment up his sleeve that if it works will attack on all fronts. The cool name for it is TAS-102, marketed in Japan as Lonsurf. Oxford are still investigating the SIRT treatment and a clinical trial in Birmingham might also be available from late July onwards. For now though I have signed up for TAS-102.

Back to my pain. The paracetamol had worked sufficiently for me to take all this information in. He also gave me some laxatives, some steroids to decrease the swelling in the liver and more metaclopramide for anti sickness. Back home and I took a cocktail of these and the pain went away. 

I’m shattered, I’m emotionally drained but I’m pain free. I was able to watch the last 20 minutes of the England v Wales match. I cried like a baby when we scored in injury time. I watched CSI and when Grissom and Co found Sara Sidle in the desert I was overcome. She woke in the helicopter and saw Grissom’s name tag on his chest. Tears of emotion poured from me. 

My train journey is a long way along the tracks. The final stop is just over the horizon. I need more track than I have. I need it because I have so much love inside me for P and not enough track left to share it with her. We cried at this.

I’m all cried out now. I’m done with crying. Frankly the pain has subsided and I can’t begin to tell you how good that feels. It means I can listen while P reads Biggles to me. Simple pleasures. Look for simple pleasures in life, but always look for love.

Life Blog – CT Scan Update

Today I went to The Churchill Hospital in Oxford for the result of a recent CT scan. I’m feeling well and looking well so I was expecting bad news as that is so often how it goes when dealing with the Big C.

Well cutting to the chase the results were mixed. The tumours in my lungs are responding to the immunotherapy and are shrinking but the ones in my liver have begun to grow again.

I see my consultant back in Worcestershire in two weeks and he will outline my options, but realistically there won’t be many. He might put me back on some chemo, he might offer me some clinical trials in Birmingham but that is about all.

Meanwhile, Oxford will investigate me have the radioactive bead treatment repeated. This is no certainty and will be assessed on my suitability for a second go, in terms of how much radioactivity I have already had, my response to the first treatment, my current well being and so on. If it is possible it will also have to be done privately, as the NHS will not fund it. 

So that is where we are right now. I hoped for better news but for now there are options. It’s a sunny day, as you can see I’m happy in my cousin’s garden and frankly I’m really fancying a pimms, which sadly is not about to appear anytime soon. Yep lacking a pimms is my biggest worry right now.

Take care and hug and kiss a loved one. Or a stranger, or a friend… X