This week marks the two year anniversary of me starting FCR chemotherapy. The FCR stands for Fludarabine, Cyclophosphamide and Rituximab. This is still a standard treatment for Chronic Lymphoyctyic Leukemia. I started on 11 October 2018 and at the time I wrote a diary. Today for the first time I share on the open internet the edited first part of that diary. This is my way to reflect on what happened, and to express my gratitude that I am very much still alive.

It would be remiss of me not to mention at this point my faith. I know not everyone shares a belief in God, and the rest of this diary will be relevant for you whether you are an atheist or a believer in any faith. But it was interesting to me to look back on the post I shared over on my Christian Patheos blog the morning I started chemo. It was on the subject “Trust and Fear God“. I had obviously written it over a few days as I prepared my anxious heart to face treatment which was clearly going to be difficult, but was very much needed to save my life.

When it comes to Jesus we can be certain that he is worthy of our trust and will not let us down . . . our greatest confidence that we will continue in our faith is that Jesus himself has promised to keep us and he is trustworthy, always fulfilling his promises . . . When Jesus commanded us to ‘repent and believe‘ . . . he doesn’t just want an intellectual conclusion in our minds, he speaks to our hearts and calls for a deep sense of trust and confidence in Jesus and his goodness.

Christians believe that God is all powerful, and that he created the universe out of nothing. We believe God created it good, and when it went bad that he started a rescue operation. This culminated in God himself becoming a man, living a perfect life, dying a death he didn’t deserve for us, and then he rose again from death, before ascending into heaven, where he is now preparing an eternal dwelling for us, and he promises to bless us abundantly both now and in the age to come.

If all that is true, then how can we not understand that he loves us? And if he loves us then we should love him. . . Surely part of love is also trust. And if God has done so much for us already, why shouldn’t we trust him both now and with our future?

If God is for us, who can be against us? He who did not spare his own Son but gave him up for us all, how will he not also with him graciously give us all things?(Romans 8:31-32)

At times we find it hard to trust God because he doesn’t give us these all things immediately. Trust requires patience and an expectation that all will eventually be well, and that in the meantime God will bless us in all kinds of ways. God’s blessings really are already but not yet.

When I was diagnosed with Leukaemia, although my faith was shaken to some extent, ultimately trust in God prevailed and gave me strength. Its a journey I still walk along and my trust is far from perfect. But without trust in God there is literally no hope for any of us.

When bad things happen to us, then often we are tempted to doubt God’s goodness. We believe that God is all powerful and so we know that he could have stopped what is happening to us. I do find the distinction important between him sovereignly turning bad things around for our good and actually being the author our suffering. This is something I speak about in my post Giving Thanks IN Your Suffering, Not FOR It. However the question still arises which C.S. Lewis puts this way:
“If God’s goodness is inconsistent with hurting us, then either God is not good or there is no God for in the only life we know He hurts us beyond our worst fears and beyond all we can imagine.”-C.S. Lewis, A Grief Observed.
Theologians write “theodicies” to attempt to answer that question. To me the best answer is that Jesus wept & suffered for us.But we do also believe that he is graciously doing work in us through suffering. Perhaps the best expression of trust in God, and hope that he is at work planning a positive future for us is one of the most famous verses in the Bible:
And we know that for those who love God all things work together for good, for those who are called according to his purpose. (Romans 8:28)
The phrase ‘called according to his purpose‘ brings us back to the gospel message. Essentially, if God has given us salvation he can be trusted with our whole lives even when it looks bleak.

There is a powerful link between meditating on the cross and resurrection of Jesus and fanning into flame both trust and hope in us. This is why I put together a playlist of what I call “Gospel Hope“. You can easily listen on both Spotify and Apple Music. I listen to this playlist often, because I find that it pulls on my heart strings and reminds me that Jesus is worthy of my trust because of his great love for me. No matter what suffering I am going through, he is with me. And he suffered far worse for me.

I am not alone. Nor are you.

Jesus wants to comfort you right now with his love, and fan into flame your trust in him. And, with the comfort we receive from him in our suffering, we are to comfort others . ..There are many Bible verses which show us how trust in God will help us conquer our fears. But we are also called to a greater fear that casts out lesser ones. Our confidence that Jesus has a secure future in store for us should prompt both our fear and our trust.
https://www.patheos.com/blogs/adrianwarnock/2018/10/jesus-commands-trust-fear-me/

Read the Rest

Jesus Commands: Trust & Fear Me

Approaching treatment – my FCR diary

Written in autumn 2018

So I made it through the family holiday. Am I the only one who dreads such things due to the fatigue? Now I feel like I’m in need of a holiday to get over it! I do feel guilty at not being able to do as much as I want to do. And have a huge sense of loss at not being able to do normal things. I find it hard not being able to do most of the driving for example like I normally would. And I wasn’t able to go on proper walks through the Devon countryside.

But I was able to enjoy taking a few photos and have some family time. It was a welcome break from the constant cycle of GP visits for new infections etc. Was so pleased I didn’t feel like that I was developing anything whilst away.

Now I come back and I have my D-day appointment. For some reason knowing a month ago that I would almost definitely be starting treatment after one final blood draw on 4 September made me feel like I’d be less anxious about this one. After all I now knew what was coming right? Isn’t our visit phobia around the uncertainty?

Well. Let’s just say I got back from holiday yesterday and this morning I woke at 4am and it suddenly hit me the enormity if what’s coming my way after just two more sleeps. Big decision time.

Two CLL specialists have agreed it was time for treatment based on doubling time, lymph node growth, and my symptoms. But one specialist was not so sure. As someone who likes clear evidence based decisions the lack of total clarity even on whether I should be treated right now is a bit alarming. And despite all my reading and article writing assuming I should be treated I’m still not really any the wiser about the best strategy for me especially with an eye on the LONG TERM (I’m only 47).

So I’m thinking of volunteering for the FLAIR trial, so I don’t have to decide myself what to take. But am a bit concerned that my real thoughts about this will be shown by my emotional reaction to learning whatever arm I’m randomised to.

Still.

One step at a time.

Tomorrow ear syringing which will at least mean I can hear clearly for the appointment.

The next day decision on whether to treat or not at this stage. Then screening period for FLAIR (assuming I don’t bottle out before signing the form).

I’m not afraid to admit I’m scared.

Uncertainty is so hard to deal with.

But who says we ever actually had certainty and control anyway? That pre CLL blissful ignorance of any risk to our health was actually the delusion.

So to today. Need to just try and make the best of the day. Enjoy the Formula One. Maybe watch some TV

And rest.

Signing the consent form

A month ago my lymphocyte count was 53 which represented a doubling time of around three months. Today I went back to UCLH and had another blood test four weeks later to the day and it is now 70 which is exactly what the exponential growth curve my count has been on for the last seven months would have predicted. In other words I am on track to continuing to see a doubling of my lymphocyte count every three months which is really fast aggressive growth for CLL. This “chronic” cancer is not behaving in a very chronic way in my case.

The rate of growth probably explains why I’m getting worse and worse fatigue. And my nodes are also growing.

Today my playlets had also dropped another twenty points in a month. Still just above normal limits at 155. But that’s another factor that my doctors say means I need treatment in a matter of weeks when taking in the whole picture.

So I finally decided to sign the consent form for the FLAIR study. Turns out I don’t need a bone marrow biopsy as my count is so high. They will do one to confirm MRD negativity if I get there. So that’s one less thing.

So we have repeated all the cytogenetics blood tests. And I will have a CT scan to size the lymph nodes.

Oddly I feel a huge sense of relief as it’s been clear for a while that treatment was coming for me.

I’m at peace.

I’m hopeful.

I’m clinging onto those stats that at least 80% of people should get at least some response whatever the arm.

I’m hoping and praying that my response will also lead to me FEELING loads better.

Those CLL cells don’t realize that right about now is when we start fighting back. They have no idea what’s about to hit them!

And hit them hard is my hope. In some ways my least favorite option is ibrutinib monotheapy as I want them wiped out. But I will take whatever the computer chooses for me (and dare I say it the hand of God behind the machine).

I have learnt much from those who have gone ahead of me. And for those coming behind I will try to pass on my experiences and together we are so much smarter and stronger and better than we could ever be apart.

For those joining FLAIR or another clinical trial or thinking about it. To be honest the extra time and care the research nurse was able to give me was so reassuring. I’ve always needed looking after. I feel safe and in good hands at UCLH whatever happens next.