The Walk Beside

The cost of buying more time

Posted on May 13th, 2008 by Cam.
Categories: Let's talk.

I am staggered and humbled by what resources go in to keeping a person alive in the western world. I have certainly used up an extensive share of time, money and resources in the global picture, let alone within my country.

Biological/Personal Cost.
In order for me to get through these last few weeks in hospital, I was given 4 bags of blood and 4 bags of platelets. I guess up to 8 people gave there time and blood products so that I could get back on my feet. Without these people generously giving their own blood products, I would certainly be dead. I felt even more grateful for the platelets as they told me just before they gave me the fourth bag that it took a while to get this one on the drip because there is a national shortage.

Resource Cost
I cannot remember all the machines I have been scanned by or hooked up to over the last year, but they all are important in treating or tracking this cancer. Without them, a lot of my diagnoses and monitoring would be near impossible. I can easily measure my scan films in kilograms now rather than sheets.

Professional Time
A lot of people have studied long and hard to be able to treat people like me. This blows me away. This was made especially apparent during this recent hospital stay as I had about six doctors working on getting me better. Of course I wasn’t their only patient, but they all had a good knowledge of where I was at and did everything they could to make sure I kept living. These folk, along with the nurses, are golden. The time that these people have spent studying is one thing, but then the ongoing toll it takes on their families for callouts, or working back late, or those consultative phone calls at 1am is another.

Financial Cost
In the last 4 weeks, the cost of my treatment has been astronomical. We conservatively estimate the high-dose and stem cell transplant procedure to cost around $150 000 (the allogeneic transplant from matched donor costs $250 000). There is a charge of roughly $500 per night for a bed in hospital, and I was there for the best part of two weeks. One course of drugs that I needed (the injections) cost $2400, and I have had some tablets that cost $30 each. I will be having a PET scan next week. This alone costs over $2000.

Uncomfortable
So basically, the money, time and resources that go into medically giving me as many years as possible, they are all just buying me more time. I have been thinking about this because it does a little to make me remember not to take it all for granted. Thankfully, we are fortunate enough to not pay any significant part of this due to the health care system in this country, but by not having to foot the bill, it becomes too easy to forget about what actually goes into extending a life in the western world. I have to say it makes me pretty uncomfortable also.

Sure I want to live as long as possible, but can you imagine how far this kind of money and these resources would go in a place like Burma, or Halls Creek, to extend and save lives? What criteria did I meet to inherit these lavish gifts that will essentially give me, statistically, another five years? I would suggest the significant criteria would include the freak chance of being born in a place that has the resources to treat someone in my situation. There are so many places I could have been born into where there is no option of receiving bloods, $2400 worth of injections, admission to an emergency department, $30 tablets – the list goes on.

I don’t know how much an extra year of life is worth for an Anglo Saxon educated professional with a mortgage and a goldfish. I know if it concerned my child or my wife, there would be no limit to what I would spend. But how can I justify the cost of extending my life when these kinds of resources could be keeping thousands more alive in countries less fortunate? It is the answer, or my lack of ability to articulate one, that makes me uncomfortable.

8 comments.

Pretty Sick

Posted on May 12th, 2008 by Cam.
Categories: Let's talk.

Back to the hospital today for more tests, namely bloods and chest x-ray. Specialist Brad was on holidays so we were able to see one of his residents who was also superb. My bloods show my platelet count has gone from 40 when I was discharged last week to 120 today. That is great news. When I was on the ward I was receiving platelets because my count was down around 11 or 12. A bit low, really. Good to know I can clot again.

My chest x-ray indicated significant clearing of the infection in my lungs, although it may take a while for it all to disappear. The comparison x-ray taken while an inpatient was obviously a lot worse with heavy patches of compromised lung. Good to have it disappearing.

I asked the doctor again today, “Just how sick was I?”
He was standing up when I asked him, about to listen to my chest. He sat down again, looked at me directly and said “Pretty sick.”

I asked him what constitutes being “Pretty sick” and he went into all the reasons. Having pneumonia caused by an infection along the lines of legionnaires when my neutrophils were zeroed out was a dangerous combination. My lungs were full of infection and it was not easy to identify whether the infection was viral, bacterial or fungal, so they had to treat for all three until something changed. The fact that I am relatively young, with health lungs, and yet the infection was widespread throughout both lungs was apparently also a bad sign. It was hit or miss for quite some time.

The thing is, I have felt sicker. At the end of last year I had another chest infection after being discharged from hospital. I was running a temperature over 39C for at least a week and it got to over 41C for a couple of days. I have never felt as rough, and that is my benchmark for if I am feeling sick or not. So this stint in hospital I obviously underestimated how critical the situation was, purely based on the way that I felt. Even now, it seems like I only spent a week on the ward rather than two because I slept through half of it and was seldom alert during my waking hours.

So now, I am experiencing the lethargy that goes with having your marrow knocked out. I walk at half the normal pace, I talk at half the pace, eat half the amount (I’ve lost 10kg in the last 3wks) but it takes me twice as long and I get tired as soon as I wake up. I was told to expect this so I am not surprised, but it is still very debilitating.

I think I will be in this state for the next couple of weeks, but I am pretty much out of the woods as far as infection is concerned. I am officially within the range of what is normal for guarding against infection. Good to be back in the land of the living.

2 comments.

The three weeks post stem cell infusion.

Posted on May 11th, 2008 by Cam.
Categories: All The Videos, Let's talk.

This is on the 17th of April when I received my stem cells back. An important part of the process, you can imagine. The red goop in the bag are my stem cells collected last November. It was good to be reunited. Two days prior to this footage been taken, I had the high-dose chemo, so the destruction of my marrow was already taking place. Using my own stem cells is called an autologous infusion. One of the later forms of treatment may be to use someone else’s matched stem cells, like one of my sister’s for example. This is called an allogeneic transplant.

Almost a week later, I my temperature started to creep up after getting some kind of infection. Our only option was to head to the emergency department. Due to a bed shortage, I spent the first night in isolation in ED.

Hair falling out. Live. Soon after this footage was taken, Elizabeth shaved my head. To cut a long story short, I got cold when we took the towels off that we had put around me to catch the hair. I got rigors, and shook uncontrollably for the next 20-30 minutes. A nice warm bed and some pethidene put an end to that, thank goodness. It took a day for my body to recover – exhausting.

A day in the hospital life.

Always good to be heading home.

1 comment.

Uncle and Aunty

Posted on May 11th, 2008 by Cam.
Categories: Let's talk.

Uncle Cam

Aunty Libs

Angus grabs Uncle’s finger. At over 4 kilos and full of strength, I am not sure who would come out on top in an arm-wrestle between us at the moment.

Other photos of Ma, Pa and Angus can be seen at www.barrandgirl.blogspot.com

2 comments.

Welcome, Nephew!

Posted on May 8th, 2008 by Cam.
Categories: Let's talk.

What a privilege it is to announce the arrival of Angus Harrison Cam Barr, born 3:30 this afternoon, as I was writing the last post. The birth went well, although Angus will spend the night in the special care nursery after experiencing a small lung tear in his first breath. We are all so proud of our sister Rach and Michael for their part in bringing this treasure into the world.

11 comments.

What comes next

Posted on May 8th, 2008 by Cam.
Categories: Let's talk.

We have decisions to make. That’s what is next. I’ll get to that later.

Today we were back at the clinic for a blood check and chat with specialist Brad about what comes next. My bloods are doing well. Everything that needs to come up is coming up, and everything that needs to come down, is settling. My time back home has been good in that I have only had one vomiting episode yesterday morning and have been feeling fine generally. My neck/headache has been a concern and last night it almost rendered me immobile, as the pain was so great.

It seems each day is only going to be pretty short as the afternoons are spent sleeping. I have just woken up from a three-hour sleep this afternoon and yesterday was not much different. My body always feels like it needs it. There is never a time when I feel I have overslept. Wonderful. My legs have lost most of their strength. A short walk here or there warrants a big rest (can’t get more specific than that).

We had to talk about two main things today with Brad – what next, and kids. The ‘what next’ aspect affects the ‘kids’ issue and it will take some thinking through. There is a drug called Thalidomide that has been proven beneficial as a consolidation treatment to stem-cell transplant treatment. The plan would be to go onto this drug for 12 months to make this treatment as effective as possible, according to current research. Most of you would know about the negative connotations associated with Thalidomide being the morning sickness drug that caused birth defects some decades ago. It can be a nasty drug, but like I say, it has shown beneficial outcomes for people in my situation.

If we choose this road, we would need to sign a stat-dec saying that we are using at least two forms of contraception. According to the drug company, we cannot take the risk of becoming pregnant while on this drug. So our decision involves whether to have this treatment for 12 months, or to start trying for kids as soon as possible. I know it is a decision that only we can make, but it is another one where faith, facts and feelings play a huge part. We have a couple of weeks to decide.

I will be having a full-body PET scan in a few weeks also to see if anything of concern shows up. Brad was very pleased with my progress, and he has been very sensitive and understanding with our required decisions. People can be heroes for one of many different reasons. He is one of mine for many reasons. When your life is medically in the hands of someone who has dedicated such a big part of their life to making folk like me well, I can’t help but be in awe of their commitment. When they go over and above their call or duty as Brad often does, their input into a life becomes more valuable than words could ever say, something that can never be repaid.

I could say the same for the nursing staff I have had. There is something about being at one’s most vulnerable state and being looked after so well that can bring depth to the word ‘gratitude’.

As of 4pm, sister Rachel is in labour and all is progressing well. We’ll be meeting and celebrating the arrival of our latest family member later tonight.

Libs and I after a bit of a trim.

Nurse Sarah taking out my CVC- a brilliant job.

What the CVC (Central Venous Catheter) looks like.

Where it has been hanging out for the last 3 weeks, quite uncomfortably.

6 comments.

Homecoming

Posted on May 6th, 2008 by Cam.
Categories: Let's talk.

I have been home for about four hours and have probably slept for over two of them. Hospital is tiring, even though I felt though I slept for half the time.

A big thank you to my proxy blog writer, Elizabeth, who did such a wonderful job collating and articulating my thoughts and adventures. I will do my best to remember the details under non-chronological topic headings.

The Infection

I went to hospital initially because my temperature started to go up. It was just under the borderline 38C, but by the time we got to Emergency, it was over 38C and a cough started to brew. The Medic Alert card I was issued did its job perfectly as I was fast-tracked through ED and got onto anti-biotics quick smart. I spent the night in isolation in ED and moved the next day to a single room in general surgery ward. The infection continued to develop.

Eventually, it was established that I had legionnaires disease. This is a big deal on its own, let alone to tackle it with no immune system. They eventually backtracked on this diagnosis and confirmed they have no idea what I had. As the infection was in the same stream of infection as legionella, they treated on what they knew at the time and it worked. That is good.

The Haircut

Usually a hair cut would not make the tabloids. For some, however, it is a big deal to lose one’s hair. For me, it is what happened after that made it memorable. I had been getting shivers with my fever for the first few days, which is nothing unusual. To sway between heat fever and cold shivers is tiring for a body, and I was getting tired.

My hair started to fall out in clumps, so we knew it was time to get out the clippers. Elizabeth did the honours after I covered myself in towels and plastic sheets to collect the hair. When we took the towels and plastic off, however, my body went into rigours and just shook violently for about 20 minutes. I jumped straight into the shower and blasted myself with hot water, only to make my skin go red hot. Then I jumped into bed where I started to warm up. I was given a shot of pethidine that made me feel hot and uncomfortable. It took the next day for my body to recover. My head was now bald. I have had more pleasant haircuts.

The Appetite

The appetite went right down to almost nothing. The hospital food was not bad, but I just did not have the energy or desire to eat.

Daily Activities

My brain was reduced to just functioning really. I couldn’t read, write, watch tv or even bring myself to listen to the radio. The maximum amount of stimulation I could handle was watching the clock tick or the IV drips do their thing. I was connected to the IV for the first week and a half. I must have gone through about 30-40 bags of fluid including anti-biotics, anti-fungals, anti-virals, blood transfusions, hydration, glucose and platelets. Being hooked up to the IV pump was pretty much my only activity. That was enough.

The Headache

I had a cranking headache since being admitted. It would come and go without warning and no painkillers seemed to do anything to stop it. This caused some concern and for that reason I had a head and neck CT scan and X-ray. Both revealed nothing suspicious. The headache is still around, but I think being back in my own bed and without the central line in my neck it will have a chance to get better. The headache was quite an issue when it got so painful that I couldn’t cough. I had to cough to clear my chest and keep my lungs working properly, so pain management became a priority.

The Central Line

The central line was taken out of my neck today and the nurse did a fantastic job. I honestly did not feel anything. I feel like I have been released from a portable prison that stopped me from functioning properly for the last 3 weeks. Some people have these lines in for months. I take my hat off to them.

The Bronchoscopy

In order to establish what kind of infection was rattling in my lungs, I was given a bronchoscopy so that they could analyse some ‘washes’ they did of my lungs. I was sedated so I remember nothing of the procedure. I love a good sedation.

The Staff

The Doctors, Nurses and Hospital Staff were, once again, fantastic. There are always going to be a few people in every profession who lack the confidence, knowledge or skill to be brilliant, but I generally had brilliant health care workers who I am forever thankful for. I cannot say enough about how wonderfully I am being looked after. My specialist is very well respected and rightly so. He is incredibly tactful and has demonstrated wisdom in every step of my treatment. We are reminded every day about how fortunate we are in our health-care system with the level of care that we receive.

The Summary

I vomited only about 3-4 times the whole two weeks. I didn’t have any mouth-sores. I didn’t suffer major digestive tract purges. My fatigue is at a manageable level.

Basically, it may seem that if I didn’t have my chest infection, I may not have known that I was sick. I asked one of the doctors how sick I was. It was all carried in the tone, but he just said, “You were sick”.

Now my levels are creeping back up to being safe. I feel like I escaped a huge amount of suffering and discomfort even though I had a nasty infection on top of high-dose chemo and the transplant. I am very thankful for that. As I write this, the news is reporting the possible tens of thousands killed in Burma and 100’s of thousands displaced due to the disastrous cyclone that has moved through that area. My ordeal sounds like a walk in the park.

So that is it, more or less. My main goal now is to stay out of hospital by taking things easy and avoiding other infections. I am back at the clinic on Thursday for a check-up and a talk with my specialist in regards to what comes next.

Sister Rachel was due to deliver on the 1st of May. The little’un still hasn’t made an appearance yet, but will have to by tomorrow or he will be given his marching orders with an induction on Thursday morning. Exciting week.

9 comments.

Day 13

Posted on May 5th, 2008 by Cam.
Categories: Let's talk.

Today is Cam’s 13th day in hospital. Overall, we both feel that it has passed quite quickly. He is nolonger neutropenic. This means that we are now allowed off the ward and are nolonger at high risk of infection. So we exercised our new found freedom with a visit to the hospital cafe. We are just waiting for the results of a head CAT scan that he had today because he’s been having intense headaches. Depending on the results, he should be allowed home tomorrow. Cam has been moved from a single room to a shared room- a four bed room with 2 bathrooms and garden views which at the moment he has all to himself- luxury. We found out today that the ‘legionnaires’ results were only preliminary results and that the final report actually showed no legionellla- good news! Either way, Cam’s pneumonia has responded to treatment and has effectively been treated. When Cam asked his doctor how sick he had actually been and his reply was ‘very sick’. We are very thankful to be through this part of treatment and are looking forward to getting home.

6 comments.

What the….

Posted on May 2nd, 2008 by Cam.
Categories: Let's talk.

So, this morning we got the results of Cam’s broncoscopy- it turns out that his pneumonia was caused by legionnaires disease. This result has surprised us all. We’re not sure how he came to aquire the infection, although we do know that people who are immunosuppressed are especially at risk.

After quickly searching wickipedia and Carmel calling the Infection Control Dept we’ve learnt that the disease is not contagious, so family and friends (and “babies in waiting”) who have visited can rest easy.

Cam’s treatment has been further modified to target the infection. Overall, he is feeling a lot better, his temperature remains down and he’s in good spirits. His body’s just tired.

5 comments.

Progress

Posted on May 1st, 2008 by Cam.
Categories: Let's talk.

The new medication has started working and Cam’s temperature has come down. Unfortunately the drug started to affect his kidneys so it was stopped and a different version of it was started. Cam had a bronchoscopy on late Tuesday. We are still waiting for the results. His neutrophils have dropped a bit again today- so he’ll stay in hosp another few days. He’ll need to be on the new anti-fungal medication for 7-10days but he can have this as an outpatient once he’s allowed home. Cam’s sleeping like a baby- literally- he’s sleeping his way through the day, waking for meals and for the occassional visitor. Hospital’s a good place to be at the moment.

1 comment.

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