SPEECH PATHOLOGY

Today I visited a speech pathologist, to see if they can help minimise the chance of food or fluid entering my lungs. This is required as a tumour in my chest is affecting the left vocal cord nerve, resulting in the vocal cord being paralysed and permanently open. This in turn can allow food or fluid to enter my lungs.

When I got to reception I stated “I have an appointment at one thirty with Jess the speech pathologist”. Only it came out wrong. I got tongue tied on speech pathologist twice and sort of got it on the third go. Good grief!

The consultation started with a check of the muscles in my face, neck and throat by pulling various faces and making all sorts of noises. Quite amusing for my thirteen year old daughter who accompanied me.

Then I drank some water and ate a biscuit while the speech pathologist felt my neck. All appears to be OK, but the only way to make sure that food or fluid is not going into the lungs is to perform a barium x-ray. This involves consuming barium laced food and drink and the x-ray can detect where it is going. However, as I have had this condition  for a long period it is unlikely that there is a problem. Therefore the speech pathologist will write to my oncologists to seek their opinion.

We also have to consider that planned radiation therapy may affect swallowing, so it may be best to wait.

So….there is nothing to do but wait to see what the recommendation is.

Good health and happiness to all. Cheers, Phil

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RADIATION # 3

I visited the radiation oncologist at Buderim twice this week. Buderim is a nice part of the world in the Sunshine Coast hinterland an hours drive away.

The guy who did the last two treatments was not available so the first meeting with the new oncologist was long and detailed. The new onco was not rushed and seems to be the right person. Surgery to remove the tumour was eliminated due to the proximity to critical bits (heart, lungs, throat, etc). Even a biopsy is considered too dangerous.

The plan is to administer the same dosage as was previously applied to my back (ten doses over ten days). It was four years ago and my back is still mostly fine, so fingers crossed for a similar outcome this time around. I had limited side effects before. However, the location and size of the tumour (53mm x 48mm) means I may not be so lucky this time. Potentially the lungs, stomach and throat could all be affected. If they are, the side effects could be cough and shortness of breath, nausea, and pain or difficulty swallowing. All short term and manageable.

They can apply a higher dose of radiation to really knock the tumour, but the risk of collateral damage is too high.

As with all significant medical procedures there are also some major potential complications, but I do not want to dwell on them. Scary.

And, of course, this treatment may shrink the tumour, and may relieve pressure on the left vocal cord, but I still may not get my voice back. That would be disappointing.

We also discussed the need for the speech pathologist. Apparently they may be able to assist with managing swallowing food and liquids.

The following day I returned to set up the radiation treatment. This involved applying three tattoos. Yes, I “got ink done” – again. One in the middle of the chest and one under each arm. These are used with lasers to help put me in the same position each time treatment is applied. Scans were taken. All is ready.

Now I just have to wait to find out when the radiation treatment can be done and when I can see the speech pathologist.

I did have a pretty severe anxiety attack when I got home from the first meeting, not sure whether treatment was the right thing to do. However, I am now comfortable that I am doing the right thing. I hope so!

Good health and happiness to all. Cheers, Phil

 

 

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MIXED NEWS

I will kick off with some good news. PSA has dropped from 66 (May 24) to 48. That’s a pretty good outcome, so the additional layer of hormone therapy is doing its job.

The not so good news is that I can still only muster a whisper when I speak. And I have a bad cough. The oncologist said that the hormone therapy is unlikely to be a quick fix for the damaged vocal cord nerve, if at all. So the plan is to talk to a radiation oncologist to find out if they can zap the tumour to shrink it. Even if they can shrink the tumour it may not help if the damage to the vocal cord nerve is permanent. Anyway, I am getting too far ahead of myself.

Fortunately, I am not suffering severe side effects from the additional hormone therapy. I have loss of appetite, but that is OK. Minor dizziness is a worry, but OK. Increased fatigue is a pain. Shortness of breath is annoying. Unstable emotions is difficult. Yucky mouth taste is bearable.

The oncologist is also checking to see if a speech therapist may be able to help. Seems like a long shot to me, but it always good to have a wild card.

The whole process is moving too slow for me. They are going to talk to the radiation oncologist who has treated me twice before, so hopefully things will speed up. He has been brilliant, so fingers crossed he can weave his magic again. Quickly.

I cannot help but wonder where I would be now if they jumped on this when the scan in early May showed the tumour growing. However, contemplating “what ifs” will only do my head in, so I have to try to accept that it is what it is.

I am feeling very tired and emotionally flat, but things will pick up if we can make some progress soon.

Good health and happiness to all. Cheers, Phil

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PITY PARTY

Well, I am struggling at the moment. I forgot to mention that my PSA went up from 38 to 66 over three months to May. Not good.

I started the Xtandi hormone therapy. In addition to Lucrin. So far so good on the side effects front. But early days. However, I have developed a mean cough. Well, not really a cough. A weird half cough. The Ears, Nose and Throat guy calls it a bovine cough. So, now I cough like a cow. Wonderful.

So what is the big deal? I have a cough. So what? Well, I have started some volunteer jobs that may be affected.

The first is a volunteer rural fire service fire fighter. I fought my first fire in September last year. I felt like superman. It was so great. And…to add to the buzz. I made it into the local newspaper. I may not be able to continue. It is not safe to be on the fire ground with no voice. No radio or other vocal communication with other firefighters can be dangerous. And inhaling smoke when you have a bad cough is nuts. My first Officer asked if I wanted off the roster. I said no. Hopefully, my voice will return. They are short of people during the week so I will go if I get the call. Fingers crossed I can continue.

The second is a volunteer cafe hand at the local hospital. The cafe raises funds to buy equipment for the hospital. I work one day a week. Wednesdays 7am to noon. I can still do food prep, but answering the phone or doing the front counter is a problem. The boss did not like my idea of answering the phone in my husky whisper with “Good morning. Wish List coffee house. Batman speaking”. Not so bad, but you cannot do food prep with a bad half cough. Not a good look.

The prospect of stopping these jobs is distressing. They are challenging physically, but they give me a great deal of satisfaction. An easy temporary answer is to take cough medicine. Not wise. The cough is trying to stop stuff going down my airways, so stopping the cough may lead to trouble with my lungs. Just what I need. Seems like a no win situation. Probably just have to put up with the chest and head aches.

So…for the moment I have to run with the hormone therapy. No idea if it will work or how long it will take. Not very satisfactory.

To add insult to injury my Australian Rules football team (Collingwood) ended their seven week winning streak by losing a game they should have won. No wonder I am depressed.

As always the morning will shine a brighter light on everything. I hate feeling sorry for myself. But it happens. Good health and happiness to all. Cheers, Phil

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WAKE UP CALL

Today’s morning temperature was 2 degrees celsius. Good grief. This is Queensland and it is not even winter yet!

Events today sorted out yesterday’s problems. I volunteer at the local hospital Wednesday mornings, and I dropped into my local clinic when I knocked off. They were great. The Sunshine Coast appointment for 25 June was cancelled and I am now seeing my oncologist 19 June here at our local hospital. All cool. I will start the new hormone therapy, and I will discuss options for surgery and/or radiation therapy in my next meeting.

It reminded me that I had learned an important lesson some time ago. Take nothing for granted. Check everything. Question everything. Get copies of reports and read them. They are full of stuff you will not be told. Use doctor google. Talk to others. It is your life. It is your problem. Take charge. Take notes. Question if you need to deal with people who do not have your interests as their top priority. Get second opinions if you are not sure. It may not work for everyone, but it suits me.

I was lulled into a false sense of security with my new team offering to take the cancer stuff off my plate, so I could get on with life. Nice idea in theory, but in practice it may cause problems. This has been a timely wake up call.

Good heath and happiness to all. Cheers, Phil

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DOING ME SLOWLY

OK where were we? Ah yes, I was off to hospital to make some noise about action to fix the busted left vocal cord, probably caused by a growing tumour compressing the left vocal cord nerve.

Initially, it did not go so well. They suggested moving the appointment forward from 3rd July to the third week in June. The problem is that my oncologist is overseas. Well, I kept pushing and finally got them to make an appointment with another oncologist down the Sunshine Coast (about an hours drive away) this morning.

Just to put it into context, I have been very worried that nothing was happening. Apart from the obvious concern about a growing tumour, the whole inactive vocal cord means more than just not being able to talk with much volume. Your vocal cords also function as valves stopping stuff going down into your lungs. Sneezing and coughing is also weird. You can gag and choke on fluids or food. You can also get infected lungs and pneumonia. Last night I had big problems with my sinuses and the stuff that seeps down your throat. No need for graphic descriptions. Just accept that it was not pretty.

Well, I was starting to wish I had not gone to the appointment. After some time with my oncologist’s assistant updating my history (why?), she asked me what I thought about chemo. I was not keen. Surely this should have been considered in February when my PSA went up 60% in two months? Why use it to target one active tumour? She went to talk to the doctor. A short time later the doctor and the assistant appeared, the former stating “This is what we are going to do.” He must have seen the horrified look on my and my wife’s faces, and backtracked to something like “This is what we suggest.” He then stated that chemo was not the answer, and I should start additional hormone therapy. Enzalutamide. A new cutting edge drug that should shrink the tumour and help fix the voice. He offered no product information and was vague about side-effects. I asked about surgery, as this would eliminate the only active tumour in my system. Blank look. They recommended an appointment in four weeks with an updated PSA test, I commented that I had a PSA test last week, and I am waiting for the result. My clinic should have results. Maybe they could call them? Blank look.

The doctor clearly had little time and a limited inclination for a chat, so we left.

It must be a culture thing, as the front desk also treated us like we did not matter. A confirmed appointment in four weeks was shoved at us. When we advised that the time was not convenient and asked if we could change it the lady said, “No. This is the only available appointment. We are very busy you know, and you are lucky to get in.” To stop my head exploding and ending up with security I had to leave.

On the way home I googled Enzalutamide. It is not a new, cutting edge drug. The side effects are listed as: –

  1. Seizures
  2. Heart problems
  3. High blood pressure
  4. Headache
  5. Joint muscle pain
  6. Hot flushes
  7. Diarrhoea
  8. Fatigue

I know they have to list every possible side-effect, and it does not necessarily follow that they will all happen, but really?

I was not sure what to do. I thought that after chemo last year I would have some clear air to live out from under the cancer burden. But no, the little bugger has a knack of sneaking up on you. This is really distressing for me. It reminded me of an old story from our political world. Some time ago the Australian parliament opposition leader John Hewson challenged the prime minister Paul Keating by asking why he would not call an early election if he was so confident. Paul stepped up, paused for maximum impact, and said, “Because I want to do you slowly.” I feel that cancer is trying to do me slowly. There I go talking about cancer as if it is a foreign object. This is me trying to do me slowly. Hard to accept. Weird.

Anyway, just to add confusion I grabbed my medical file (well, one of many) before doing this blog post. I knew that my oncologist had previously talked about a hormone therapy with minimal side effects, and he gave me some product information. Maybe this would be a better option? To my joy, the side effects were stated as, “This product has minimal side-effects.” It then went on to talk about a clinical trial. Side-effects were similar to those I googled today, but the trials showed no material difference between the drug and placebo group. Imagine my surprise when I looked at the name of the drug. Enzalutamide! The same as I was prescribed today.

Now I am really confused. Maybe it is time for some distraction and a good night’s sleep. I am sure it will all be clear tomorrow. Or not.

Good health and happiness to all. Cheers, Phil

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THE SOUND OF SILENCE

My visit to the throat specialist this morning eliminated any “normal” issues as the cause of my loss of voice.

A camera was inserted into my throat via my nose (really comfortable!), aided by a bit of anaesthetic. All the doc could see wrong was that the left vocal cord was not working. As a result the vocal cords cannot close which makes it hard to talk, cough, drink etc.

Typically this is seen in patients with lung cancer. The nerve to the left vocal cord travels from the head down to the lung and back up to the throat. As a result the nerve is susceptible to impact from lung tumours. As I do not have lung cancer, it is probably my only active tumour (at the aortopulmonary window – whatever that is!?) that is affecting the nerve.

A couple of times the doctor said that it was really bad news and he was surprised that I was taking it so well. He probably cannot appreciate that after almost nine years of dealing with cancer, and beating every life expectancy estimate, this is just another brick in the wall (sorry Pink Floyd). You get a bit of clarity when one of the other options was death some years ago.

Anyway, non-cancer causes seem to be eliminated, so the doctor will report back to the GP and oncologist, and then we will discuss next steps.

If the tumour cannot be treated, the throat doctor can operate to close the left vocal cord. This will enable me to talk but will will affect breathing. Some option!

How do I feel? Well, I was OK at the doctors, but I fell apart a bit when I got home. After the problem with no one telling me about the PSA rise in February for a couple of months I will not let things slide. I am volunteering at the hospital tomorrow, so I will drop into the clinic afterwards and rattle some cages to get their attention.

And………it is always comforting that to know that some people see a silver lining in my dark clouds. An old mate tells me that it is good to have a Collingwood supporter who cannot talk. Nice one, Dave.

Good health and happiness to all. Cheers, Phil

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