Posted on February 3rd, 2011 by Cam.
Categories: Let's talk.

Setting: Bed ‘A’ in a hospital ward room. Bed ‘B’ man is snoring. Bed ‘C’ man is snoring and asphyxiating. Bed ‘D’ man is snoring, farting, asphyxiating and sleep-talking the word ‘Fantastic!’. Such are the joys of being in a shared hospital room. Still, I was so fortunate to get into a single room as I had for the last 5 days. I actually feel incredibly relaxed here at hospital, and know that it is the right place to be at this time.

A couple of days ago, the decision had to be made to postpone the wedding date… again.

This was a heartbreaking decision, and one that we have really battled with. Ash has planned both the weddings with phenomenal detail, creativity and class. The beautiful themes and ideas she has been able to develop have been just brilliant. It has been the most difficult set of decisions over the last few weeks and months.

I haven’t written in the last few days I have been in hospital as I have unable to write at all really apart from a few short letters. I haven’t been able to focus on any reading and writing due to the drugs making me very dizzy and they make me see at least two of everything. Even as I write this , my vision is very dizzy and my hands are jolting uncontrollably it seems. I am sure once the pain killers come down I will return to normal.

Over the last few days, we have been waiting anxiously for the results from my tests in order to qualify for what is called the Panorama Trial. In it, I am given two control drugs, Velcade and Dexamethasone, and a test drug called Panobinostat. I do not know if I get this drug or a placebo – it is a 50/50 chance. But I am on the trial for the control drugs, as they worked very well for me last time.

The hospital now pays for my drugs, and they will provide a year’s worth of the drug all up. If I take it for 6 months, and it makes a difference for me, then they will give it to me for another 6 months approximately. Very thankful for this. Dr Brad has done a lot for me in getting me onto the right trials and treatment. He has been amazing for me the whole time. Relentless.

A couple of days ago, I had to have the last of the tests which was a bone marrow aspirate. This is the one that they knock you out for a little while with Medaz. Usually it takes about 3 vials (15mg ofMedaz) to get me to the point where I am up for it while still carrying on a very intelligible conversation (so I believe). This time I was out cold after one injection. I think I was just so physically and emotionally exhausted after the previous week I could have been knocked out quite easily with a sip of mouthwash.

Everything went well. Yesterday, the results came through and I just qualified to have the trial. This was both the best news, and the worst. It was the best news because I could now receive the only drug that we know of now that can reduce the tumor activity and stop it from destroying bone. That is what I have been most worried about. I can’t do much by way of sleeping or relaxing knowing that the pain is associated with bone destruction. Call me old fashioned.
Last night, I got the news that I had qualified for the trial…just.

Nurse Louise will be my Trial Coordinator for the length of the trial. I think peripheral neuropathy will be a problem for me on this trial. It was the last time. It is when you get the sensation that your hands and feet are burning up. It is a terrible sensation, and quite destructive to your nerves. Nasty stuff.

Ash has been amazing. Looking after my every need and just being by my side whenever she can. She has been able to take in the parts of the conversations too that I miss being mostly drugged up and unable to concentrate on any detail. It has been great to have her mum Pam over at this time too. Just been perfect timing.

I took my first drugs last night. Before I did this however, I had to have a series of ECGs to monitor my heart rate and output capacity ratios. All tests went well and I officially started the trial with a shot of Velcade, Dexamethasone Tablets and Panobinistat or it’s placebo. I feel like it has made a difference already, in that the Dexies shrink the lesions and take the pain away. They also reduce the destruction caused by the tumors to the bone.

I am expecting the Velcade will begin to make me feel a little lethargic tomorrow as it kicks in. As long as it is doing its job.

So the wedding has been postponed, and that is the most difficult thing. Ash has put her everything into these upcoming events, and now we have to reschedule. We will wait until we know how things go for the trial before setting the new date. I really felt like I was crumbling under many pressures to be able to take on while in such a state, and I knew there would be an intense weekend of testing, being unwell, monitoring, more injections and more uncertainty. It was going to be a big call to make it to a celebratory marriage whilst feeling like I was having chemotherapy.

I am expected to be in this hospital until Monday. Will write more when drugs calm down.



Comment on February 3rd, 2011.

praying, praying


Comment on February 4th, 2011.

Thanks for the update. Let’s hear it for drugs.
Sad that you need them, but glad that you get them.


Comment on February 8th, 2011.

I’m not the most religious person, but I understand the power of prayer. I ask God every so often, to make sure you get better. I know he listens, even when we don’t. I also asked the pastor of a local church if he wouldn’t mind praying as well. He agreed. I actually have no doubt you’ll get out of this. xx


Comment on February 8th, 2011.

Heya Liv,
Thank you so much.

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