Steve’s Update

It’s been a long time since this blog was updated and even longer since I did an update. We have been staying in touch with close family and friends but even then it’s been a little piecemeal. I can imagine some of our past regular readers may be a little concerned so here’s my take on things.

The last few months have been one hell of a journey for both of us. Helen has been a pillar for us both throughout this experience. She has refused to give up and always looked for the positive view. I’ve seen sides of her I’ve not seen before and become ever closer as a result. This optimistic side has been reflected in the blog entries she has made. This hasn’t told the whole story as you can imagine. Naturally we’ve both had our darker moments and sometimes together. I won’t dwell on this.

For my part I left off back in Port Denaru when my symptoms were continuing to grow more severe. Looking back at what I wrote I can see the emotional deterioration too. I was not only reacting to the other symptoms, but my emotional state was also a symptom too.

By the time we flew to Australia not too long after my last blog entry my mental and emotional state was such that my communications shut down. At that point we had no idea of the cause of all my symptoms but we were in the right place to find out. I remember bits and pieces of the first month but some aspects are a complete blank. Some events (like my brain biopsy) I have no memory of except for one brief one post op experience.

I remember being told the final diagnosis (Primary CNS T-C Lymphoma in brain and spine) and being quite unemotional about that. I was more concerned about everything else, especially my family.

Once I was put on a heavy dose of steroids to reduce the swelling in my brain I had a rapid but not complete turnaround. My double vision and imbalance recovered and my memory storing returned. The steroids had a bad effect on me emotionally. I felt very agoraphobic and withdrawn. Having the accommodation offered by Helen’s cousin Sarah and her family was priceless and we’re eternally grateful. Having somewhere to go and be by myself (with Helen putting up with me) was very needed. The loan of a car from our old friends Janine and Brian was also fantastic as it gave us the mobility we needed to get back and forth to the hospital through the chemo sessions without imposing on the family.

The five initial rounds of chemo soon began. I was administered high dose Methotrexate and Vincristine on each round and Procarbazine on the odd rounds.
The first round of chemo left me in a very dark place though. Dealing with anything was quite impossible. Helen continued to handle everything. This slowly improved in line with the reduction in steroid dose. Anxiety remained a big problem, particularly considering our remoteness, the boat situation and Sam and of course the disease and it’s various consequences.

Somewhere around round 2 I experienced a week of overnight leg pains which fortunately stopped a couple of nights before the next chemo round. I tossed and turned a lot with these pains and gave Helen a bad time sleeping.

At the end of round 4 I was prescribed Sertraline to deal with the anxiety. The combination of this and my general improvement over time later resulted in my returning to more my normal self around this time. I was able to interact with people more positively and I received a lot of positive feedback from those around me. This all helped a lot. It was nice to be able to interact with Sarah and her family without all the internal turmoil I had been going through.

Between rounds 4 and 5 we made our first trip to Brisbane to meet the boat. We were picked up from the airport by Trish from Bristol Rose who have their boat berthed at the nearby Royal Queensland Marina and who now live and work in Brisbane. As it turned out Trish gave us a greater surprise as unbeknown to us she’d picked up Sam in the morning and it was he that met us while Trish waited in the car outside. It was fantastic to see Sam there and to meet Trish again although I was being hammered by a really bad headache which was to last for 4-5 days. We met Rob towards the end of our visit which was equally nice.

At the not too aptly named Morten Bay Trailer Boat Marina we finally met up with Peter on Dignity. Dignity looked sad without her mast but inside you couldn’t tell. Peter stayed for a few days and was incredibly helpful talking to the various riggers, sail makers, shipwrights we had visit. For insurance purposes we needed multiple quotes so there were a lot of visitors. My headache and general condition at the time left me on the sofa for much of the time so this was doubly useful.

We returned to Melbourne for my 5th round of chemo. This was probably the hardest of the lot. While my headache had subsided it was returning in bouts making me sensitive to light and pretty uncomfortable. For the most part it responded to Panadol but one night I needed something stronger and was given some Endone, a much stronger drug. I’m not big on pain killers (apart from the ones you drink) so I’m glad I only needed this once.

Part of my normal behavior is to be a bit fussy about the food I eat. Maybe this was the reason I lost my appetite during round 5 of the chemo. After 3 months I’d finally had enough of the hospital food but I wasn’t feeling hungry. I’d lost a lot of weight by then but was on my way back up. It was a bit concerning to lose my appetite but it soon returned when I was out of hospital.

On rounds 1-4 I was discharged in minimum time when the methotrexate levels in my blood dropped below the required level. On the 5th round I had to stay an extra day. Even after the extra day I failed the blood test but asked them if there was any way I could go home regardless. With some extra drugs in hand I was discharged and able to join Sarah’s family celebrating their eldest son Chris’ 19th birthday.

So after 5 rounds of chemo my initial symptoms are vastly improved. I’m off the steroids but still retain by vision and balance. My mental faculties have returned and my confidence improved. I have managed to take on a lot of the workload Helen had had to assume. This is all good.

Without knowing how others respond it’s hard to really know but I understand I responded quite well to the chemo with not too many side effects. I have been left with some peripheral neuropathy (tingly finger tips and a numb area inside one foot). This is from the drugs and often improves over time. I also have a patch of skin on my left thigh which is numb. This could be nerve damage and probably won’t recover. My strength has been badly impacted as a result of a number of factors but is slowly returning.

After the fifth round of chemo I had two more MRIs (6th and 7th) of my brain and spine. With 8 days to the doctors visit to hear the result we made another trip to Brisbane to work on the boat.

Another nice surprise was bumping into Pam and John from Passages who are also here for a while. The consequences of my condition regardless of the treatment outcome are that our cruise has probably come to an end so it’s nice to keep a little of the old times going by meeting up with good friends.
Sam, who has entered on a young person’s work visa, had found some work and was building on his hours.

This time I was able to contribute more than during the first visit but easily tired.

We returned to Melbourne to hear the results of the MRI. This turned out to be in line with my symptom recovery. The lesions noted in earlier MRIs throughout my brain and spine had reduced both in size and number. A number of ‘shadows’ remained which could be scar tissue from before or still active lesions. Without extremely harmful burrowing through my brain and spine there was no way to know the difference so further treatment is recommended and soon. The recommendation is radiotherapy for whole brain irradiation and something similar for the spine. The spinal irradiation may affect my bone marrow so a drug regime to stimulate stem cell production into the blood followed by a harvest is recommended. If necessary, these stem cells can be used if necessary to treat side effects. The radiation therapy will be followed by two more rounds of chemo, this time Cytrabine.

We’ve spent a lot of time looking at our options regarding future monitoring / treatment. We’ve come to the conclusion that we will need to return to the UK for this and sooner rather than later. It doesn’t look appropriate to interrupt the current treatment as this would involve trying to integrate two disparate treatment protocols as well as creating a potential rediagnosis problem due to the progress made so far. So while we’re pretty sure it’s best to carry on here the future remains up in the air. We continue to research, communicate and learn more.

Next week, on Tuesday again, we meet the haematology doctor again as well as the radiotherapy doctor to learn more about the various treatments and make decisions, particularly about the radiotherapy, as to which to go with. Because my particular condition is incredibly rare, past stats are not in abundance. The last occurrence in Victoria, a state of 5.5 million people, of primary CNS t-cell lymphoma was 5 years ago so there’s not a great deal to go on.

So we’re back down in Brisbane for our third visit. The boat is still our home despite everything so despite having to be busy and not sailing anywhere it’s nice to be here. Having said that, the weather has been lousy the last couple of days so we’ve generally relaxed.

On the boat front, in conjunction with the insurance company we’ve selected our rigger, sail maker, shipwright and electrician. The insurance company has been good throughout as they should be. We have been told that the first tranche of funds has been passed from the underwriter to the broker which we now await so we can pass this on to the service providers to commence work.

The last 4-5 months have been a monumental experience for us and I don’t know how we could have coped (or in my case survived) without the help and support from family and friends.

First and foremost my sincere appreciation goes to Sarah and her husband Russ who opened their doors for us and keep reminding us they remain open. Thanks also go to their children Chris, Jack and Ros who have not just put up with us in their presence but welcomed us as family members going through a very rough patch. I feel a special affection towards all of them.

Again thanks go to Janine and Brian for the loan of their car which we’ve used for hospital visits and a couple of the airport runs.
Thanks also to our friends on Bristol Rose and Passages for the times they’ve helped us and just for their company.

Thanks of course to Peter for getting Sam and Dignity to Australia in one piece despite a problem that’s probably been long in the coming.

Big thanks also to everyone who has communicated to us throughout in any way, be it just supportive comments or with useful information about cancer and treatments. Sorry if we’ve not responded to everybody but please know how important this has been and continues to be to us.

It’s hard to express how much gratitude we have to the medical staff that have looked after me so far. My survival prognosis without treatment was grim so we have everything to thank them for.

Finally, and most importantly, my thanks go to Helen for the support she’s given throughout. Only she knows what she’s had to put up with and endure (even I don’t know for sure). I haven’t the words to really express how I feel for how she has coped with everything. As I mentioned earlier this experience has really brought us close together. Life has turned a corner for us and the future now has a lot of uncertainty. We know we’ve had a great run so far and treasure the moments we get now. The future still exists and we have much to do still. But we have each other to help face it and that is priceless.