Limbo. Here again. It’s different this time, calmer. The water isn’t as choppy. Last time I was here, I was on a row boat, far out at sea without oars. It was cloudy, dark and cold. I couldn’t see land and the boat rocked so hard I had to hold on to the sides. It was a desperate situation. I almost didn’t make it. This time, I don’t feel despair. The water is still and shallow and I’m close to the shore. I have an engine on my little boat. I’m just waiting to start the ignition and take off, back to safety. What does safety look like this time? I have no idea yet but I’m sure it exists. Last time it was a clinic in Istanbul. It kept me safe for a year. And I know it could continue to keep me safe for a long time but it’s just not possible to keep it up. If the clinic existed in Ireland, I would be there 100%. But nothing like it exists here or in the UK. I wish it did! So how do I get out of limbo? Or is it OK to stay here for a while? My therapist and I talked about this… making limbo OK, accepting that this is where I am and allowing it to be. Simple! And it is. It just is what it is. And it’s where I am and if I don’t accept that, where will it get me? Nowhere good, that’s for sure!
See I’m in limbo because I’m waiting on results of tumour profiling. It’s a process where I have applied to have my biopsy from two years ago, tested against hundreds of drugs to see what will be effective in the next phase of treatment. It’s become clear that I’ll need several lines of defence to use the war analogy again. I prefer to think of it as plan A, B, C etc… I’m onto plan C now. Maybe I’ll get to Z someday. Who knows?! A new drug for triple negative was announced in the news today. It was discovered in Galway University. It’s a drug which can increase the efficacy of chemotherapy and reduce the chance of recurrence. It’s about 2-3 years away from clinical trials. After that, it will be another couple of years before it’s made available to use in hospitals. That’s presuming it passes all the trials and gets the hundreds of millions in funding it takes to become an approved drug. I’ll reserve my excitement for something a bit more available in the present. The ever elusive cure is just around the corner. How far away is that corner though? Will we ever reach it? Or do we focus our energies on plans A-Z? As I said, I’m in limbo… it’s a funny place full of questions, what if’s, confusion and possibility. It’s a strange energy to be in but it’s not uncomfortable. Not this time.
I got a letter in the door yesterday with an appointment to see an oncologist in Dublin in September. This is the first step in plan C. I rang up to make the appointment and was told I had been discharged from the system as I had become inactive. I can understand the decision but surely a courtesy call or letter could have conferred if that was OK with me?! I was told I’d have to go back to my GP and get a referral to the breast clinic and go through the system again. The system which left me waiting on a list for 10 weeks to be seen in the first place. Needless to say I declined that suggestion. I requested an appointment in two weeks. It would give me time to get my tumour profiling information back from the UK.
Limbo has been a busy place. I’ve been doing as much of my Istanbul protocol as I can replicate here. I’ve been attending weekly hyperbaric oxygen therapy, high dose vitamin C IVs, struggling with the keto diet, going for bio-energy 1-2 times a week, therapy, distance healing and taking lots and lots of supplements. My leg infection finally healed up after 7 weeks of dressing the wound from hospital. I got another infection in my kidneys which I’m just today finishing antibiotics for. My body has taken a right bashing. I forget how it feels to be fully healthy and able. It’s been a hectic few weeks. But we’ve had some good times in between too, making memories with Ali. We haven’t managed to get away in a caravan as planned but we have had a trips in the last few weeks to Kerry, Limerick and Sligo. Limbo will last for 3 more weeks and who knows what treatment schedule we’ll be facing into then. So we’re making the most of this time and we’re taking a very last minute trip to visit my brothers in America next week. I’ll have to fish the passport out of the bin. It’ll be nice to be going to the airport for a holiday this time instead of travelling for chemo. It’s been a long year with over 20 trips to Istanbul, I’m not sorry it’s come to an end.
My tumour profiling results arrived in an email today, ahead of time. I wasn’t expecting it. I was away from the house so I rang Paul to log into my account and have a look at it. I still haven’t got the lowdown yet. But I’m sure it’s good. He doesn’t seem too worried. Or maybe his poker playing experience is standing to him because I can’t get a read. I’ll be back soon to let you know how it went. Pray for me. Or whatever it is you do. It works. I got this far. Namaste…
I wrote this post last week and have had a chance to decipher the tumour profiling report as well as talk to the doctors who did the analysis. It turns out Paul did have a good poker face that night, the results were considerably less than we had hoped for. Out of 770 targeted drugs, just 1 came back as having evidence of effectiveness. It was only available as a clinical trial, and only in phases I and II. From what I knew of clinical trials, I knew I didn’t want to be on one full stop, never mind an early phase one. An early phase trial meant I would be a guinea pig for dosage requirements, to see how much a body can stand and how much is effective. It didn’t sound appealing to me. We were stunned with the results initially. I thought they must be wrong. How did the chemo in Istanbul work if that’s the case? None of those drugs I had used were listed. We decided not to get too pissed off about it and wait to ring the lab the next day. I wasn’t worried about it at all to be honest, I knew that something would work out for us, it always does. I had a similar feeling to the day I said no to palliative chemo in the Mater Hospital in Dublin two years ago. A feeling which was calm and knowing. Assured. The next path will open up and will not be what we are expecting it to be.
We spoke to the doctor in the lab the following day. We had interpreted it incorrectly, there was another result which we didn’t see. So now there were two options. One was immunotherapy, the big buzz word in modern oncology and the other was a biological drug which was being used for ovarian cancer but has been seen to be effective against breast cancer too. I asked him why none of the chemo drugs I had used previously showed up on the report. He said they don’t test for chemo effectiveness, only targeted therapies. I asked him if it was common to see such few results in a report or was it because it was triple negative? He said it varies. A answer better suited to a politician. Maybe I was better off not knowing. So what now? Limbo continues… Until my meeting in Vincent’s in a couple of weeks. I know that the immunotherapy drug is not available in Ireland for breast cancer yet. And if I want to access it, I would have to get the go ahead from the oncologist to have it prescribed to me and it costs €8,500 every three weeks. Here’s hoping for a miracle.
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