To Have a Voice

If you’ve been following our story closely you will know that some time ago, Nige lost most of his voice. He completely lost the voice that we knew and loved, what is left is a scratchy croak that to be perfectly honest sounds a little frightening at times. The condition is called Vocal Fold Paralysis. It is probably being caused by one of his lung tumours pushing against the laryngeal nerve. The damage is most likely irreversible. It basically means that instead of both vocal cords moving together and apart during speech, one is immobile. The cords can’t meet in the middle properly, so diminished vocal sound and shortness of breath ensues.

When I first met Nige one of the first things I noticed was how lovely his voice was. I enjoy beautiful sounds and sights, and with its deep richness and melodious quality Nige’s voice certainly fit that criteria. It didn’t hurt that he was seriously cute either (and manly eh Nige :)). He was often told he should be a DJ due to his dulcet tones.

I miss it. Sometimes I ring our home phone just so I can listen to his voice on our message service.

But I bet I don’t miss it as much as Nige. 

I know many have probably wished it upon me, but I just can’t imagine how hard it would be not to be able to express yourself vocally. For Nige these days, every word is an effort, and needs its own breath before it can be expelled. He has one tone, with very little volume. People struggle to hear him, so he is often ignored or talked over without anyone even realising. There’s not much Nige enjoys more than shooting the breeze with his mates, but that pleasure, along with many others, has been taken from him. As if he doesn’t have enough to deal with. As if a cancer sufferer hasn’t lost most of the control over and expression of their former lives as it is. Diet, mobility, driving, socialising, medication, work, relationships – everything has changed, and Nige has mostly no governance over any of these changes.

When Nige is frustrated he can’t yell, it is physically impossible. He can only squeak in protest, like an angry mouse. And there’s a lot to be frustrated about when you have cancer. You need a voice. You need to be heard. I have become that voice for Nige, another thing he has had to relinquish, another dependency, for this fiercely independent man who loves nothing more than to ease others burdens.

This Thursday he has a chance to regain some of that lost expression. There is a procedure known as an Injection Laryngoplasty that may help Nige regain some sort of a voice back. Here is a brief description of the procedure:

The injection is carried out with patient sitting upright. The nose is prepared with a combination anaesthetic and decongestant spray. A small amount of local anaesthetic is injected through the skin into the windpipe. This will make the patient cough for a brief time.

A flexible endoscope is placed through the nose and a fine needle is placed through the skin of the neck. A small needle prick is felt when the needle enters the skin. The needle is passed either under the cartilage of the larynx (the thyroid cartilage) to enter the vocal fold from below (the most direct route), or the needle is passed over the top of the cartilage of the larynx to enter the vocal fold from above. There is a mild amount of discomfort as the needle is manipulated into position.

After the needle enters the vocal fold the filler is injected into one (unilateral injection) or both vocal folds (bilateral injection). The amount injected is determined by the appearance of the vocal fold and by the sound quality of the voice.

I love how they talk about “mild discomfort”. I have learnt that doctors always underestimate how a procedure is going to feel for the patient involved. After all how many times have they actually experienced their own procedures? Still I guess it’s a good thing. If the description read “agonisingly painful with extreme discomfort and unrest” I doubt many would go ahead!

If after examination Nige is able to go ahead with this procedure, he will be able to both speak and breathe easier. He will probably never sound like the Nige we once knew – another loss to grieve – but at least he will have a voice. We all deserve to be heard.

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Ex-ter-min-ate Ex-ter-min-ate

Time for an update, it’s been an intense few weeks!

Nige was booked in to have his first session of brain radiation in Auckland on Monday the 6th of July. Everything (almost) had been organised and prepared. We just had to wait. But waiting when you have cancer can be the hardest part of all. And for once the universe agreed with us! We got the call on Wednesday the 1st July – they could move Nige’s treatment forward, we just had to be at the treatment centre in Auckland by 1 o’clock – the next day!!

We were in the car at the time, on a mission get to oral Vitamin C, some fish for dinner from our favourite fish place in Cuba Street, just general day to day stuff. Nige isn’t able to drive due to his brain tumours, much to his chagrin, so I am No. 1 chauffeur these days. Sadly I wasn’t offered a cool hat.

After receiving the news we sat there for a bit. Okay this is what we wanted, right? What we were waiting for. But it was so sudden, everything had been planned, was a couple of days really going to make much of a difference? I remember thinking: “Hell yes! Get up there and get your brain radiated now Mister! The sooner the better”, but actually saying to Nige: “Well it’s your decision babe, but if you want to go, I can make it happen”. I may have repeated this sentence a few times, just for impact. I know I have a habit of repeating myself, it must be a youngest child thing, no one is listening! LOL. I remember reading a story growing up about a boy nick-named “Jacob Two-Two” who did exactly this for the same reasons. Just call me “Julia Two-Two” from now on. 

I’ve had to learn to hold back a LOT over the last few months. I like to make things happen. But it’s not my body, my cancer, or my journey. Plus there were others that would be affected by our decision, others that had already juggled their lives around for us countless times. But having cancer entitles you to be a little bit selfish I think, and Nige has been such a giving person throughout his life, I know when it counts his friends and family will do ANYTHING for him. Having that backing behind us has made ALL the difference in this new adventure.

So we said yes. Nige had been mentally preparing himself for Monday, so it was a really tough decision for him to bring it forward with so little warning. But his excited anticipation of the next step after brain radiation, where the rest of Nige’s cancer would be treated, propelled him forward past his fears. The next few hours were a whirlwind of cleaning, booking flights, packing and organising children and animals. I didn’t stop from 12pm to 9pm, when finally I could sit down. But it was great, I love making things happen under a deadline, especially when there is such a good incentive. 

I was up with Nige for the first couple of treatments, which went really well. But I can tell you, you never want to meet “The Mask”. “The Mask” is a close-fitting face cover moulded to fit your mug like a glove, its primary job to keep your head perfectly still while they are frying your brain. You wouldn’t want them to miss and take out a crucial chunk! Poor Nige. He tried to help me understand how it felt. He explained how he’s held down by his face in a mask so tight he can barely move his mouth. It does have a few holes in it, but is made of a very firm substance so it doesn’t bend and flex at all. It would, quite frankly, be my worst nightmare.

 themask

When they first put it on Nige, it was extremely claustrophobic and he couldn’t breath, he had to ask them to take it off a couple of times before he could compose himself. Afterwards, he said he felt almost violated, it was extremely emotional for him. On a shelf nearby, others masks were lined up, awaiting their owners return. I can’t even imagine it. But I tried. I pushed my face down as hard as I could with my hand, covering my nose and mouth and imagined not being able to move at all, not a muscle. It sounds simple but it’s not. I didn’t realise until then how much we do move without being aware of it. But Nige is very strong minded and brave, and it got easier for him as the days went on. I had to fly back on the Saturday night, but luckily Nige’s mum drove all the way from Welly by herself to take over as caregiver, so I knew he would be in good hands while I headed back to the kids and animals. We were to drive back up when the school holidays began the following Saturday. It was a long week, waiting and wondering, but Nige and his mum made it through heroically, right up until the Friday, when things got a bit awful. Nige ended up spending midnight to 4am at A&E hooked up to a drip in order to prevent dehydration from all the vomiting. Believe me, you don’t want to be dehydrated during a brain-frying session!

Radiation has a cumulative effect, and keeps on working for weeks after initial treatment. Because it is attacking the cancer, your body responds as it would to any threat by sending “soldiers” to the sight of the attack. This causes the area to swell, in many cases giving the patient worse side effects than the actual tumours themselves. Doctors prescribe steroids (disappointingly not the muscle building ones) to help reduce the swelling. These make Nige feel permanently wired, even though he is really exhausted, a very contradictory condition to be in. The main side-effects for Nige other than this are fatigue, nausea and vomiting, and sight and auditory changes. While none of these are really funny, there has been some amusement around the latest side effect. Nige turned to me one day and said “I think I’m freaking out. You all sound robotic, like tin men!” That’s right, every now and then over the past few days, his family have been replaced by Daleks from Dr. Who. I’ll admit, with Nige’s permission, we did have a bit of fun with it, one or two of us exclaiming “Ex-ter-min-ate, ex-ter-min-ate!” or “Take me to your leader!” Like I’ve said before, you gotta laugh or you’ll cry. This shows you again how incredibly strong and brave Nige is. I would be huddled in a corner rocking back and forth by this stage.

So here we are, with Nige having only 3 more brain-fries to go through. Again Friday and Saturday were a bit rough, but we made it through, and the end is in sight. Nige is still feeling strong and ready to fight through the next stage -Immunotherapy, for the rest of his cancer. If this works we could see some outstanding results, I barely dare to hope. If it doesn’t there are still options, but this is the best by far so far. For those of you who don’t know, this is what Immunotherapy does, in basic terms: As I’m sure you know, cancer is a mutation that causes cells to keep multiplying when they should go through a normal cycle and die off. Usually our immune systems fight disease, but cancer has a sneaky way of disguising itself, and pretending to be healthy cells, thus encouraging the immune system to leave it alone. Immunotherapy basically blocks the part of the cancer cell that helps it to maintain its disguise, and un-masks it, for the immune system to see. The immune system then attacks the cancer, and it shrinks, and in some cases, goes away completely. There is still much to be discovered about Immunotherapy, while the idea has been around for a long time, its success is relatively new, and it is almost certain there is a lot more going on than my basic explanation above. It doesn’t work for everyone, but there’s a chance it will work for Nige. The side effects are usually mild, and to me it’s a no-brainer that something that encourages your immune system rather than represses it is much more likely to have a long-term positive effect.

So I’m glad that Nige didn’t go too far down the Chemo route, it’s turned out to be the right decision for now. This Immunotherapy drug is so new most New Zealanders have only been treated with it during trials. Nige will be one of the first in NZ to experience it out of trial. 

I know I’ve said before that Nige’s cancer is part of him, and we want to heal it, not kill it and him in the process, but I can’t resist. Bring it on. Let’s exterminate this thing.