This was a year ago and I’m still tired and getting ready for the next Relay For Life on 25th and 26th of March 2017. If you can spare a fiver, it would be much appreciated. I’ve only got a third of my goal so far. It’s tax deductible and 100% goes to cancer research. Click here for more info.
I haven’t posted about my cancer for a few days, partly because it would be a boring read and partly because I am fatigued. I knew that the radiation would make me tired, but this is something different and I’ve struggled to find the words to define it.
Fortunately the Cancer Society has information online that helps. It describes it as an overwhelming tiredness (physical and emotional) not relieved by rest or sleep. That pretty much encapsulates how I feel at present
It also says that while the reason is unknown, it may be as the cancer cells die they release waste products. Your liver and kidneys have to work harder to get rid of these toxins, using valuable energy. I like that description because I can then take it that these tumors are being killed and I am beating the cancer.
It also says that the fatigue usually lasts 3-4 weeks after treatment but can continue to last for several months. I’m hoping that’s not the case given that I’m back at work on Monday.
So a couple of days ago I went to an awesome wedding in Tawharanui, a stunning location north of Auckland. I had done some research for a short speech I wanted to give. A little humor and a lot of love for the couple, the bride having been part of our extended family since she was 2 years old.
I couldn’t do it, emotionally I didn’t feel capable of doing something that I am skilled at, that I wanted to do, that I have done hundreds of times at conferences, training courses, weddings, funerals, birthdays and other events all over the world and I couldn’t do it in a place where I was surrounded by family and friends.
It was a wonderful wedding, but I was so fatigued I could barely hold a conversation. The following day, yesterday, was worse. Because we drove home after the wedding, I had arranged to have my radiation treatment moved from 07:30 to 13:30.
That was a mistake, it’s hard enough having a moderately full bladder and empty bowel first thing in the morning, but doing that early in the afternoon, plus a delay before I got my turn was a nightmare. My bladder was fit to bursting before I was called up, so I had to void a little and was about to get rid of even more a second time when they finally called my name.
I lay on the table praying that I would be able to last the amount of time it takes to get me in the right position, do a CT Scan, make minor adjustments and then start the radiation. It seemed to take forever and I was on the verge of jumping off several times.
The strain and pain of holding it back had me fighting an enormous battle between my dignity and my bladder control and I was looking for a button to call a nurse and call it off, but there wasn’t one.
I wasn’t going to risk getting off the table while the photon beams were radiating and risk damaging other parts of my body, but the intensity of holding my bladder was enough to give me a massive headache. When they came in to get me off the table I apologized and said “Sorry I have to run.” I meant it literally. I’m glad I still have that control!
Sorry about the detail, I’ve avoided talking about side effects. Let’s just say that going to the bathroom is not the satisfying ritual it used to be, but on this occasion the relief outweighed the negative aspects. I never thought I’d be blogging about going to the toilet, but this process has lowered my inhibitions.
I had a nurses appointment afterwards and he gave me a urine test to take home (given that I had just saved my bladder from bursting) in the unlikely event of infection and recommended I go home to bed. By the time I got to the car, I was busting again! So I went back and did the test and it was as if I hadn’t been before. It was like letting the air out of a fully blown up balloon!
- Relay For Life rang and asked if I was prepared to do an interview in a local paper about why I am doing the event again. The answer was yes, although I feel that is a lot more public than my blog and social media. But, given that 7 people have been motivated by my story to get tested, that might otherwise have procrastinated and might not have caught the cancer early like I did, if I can help save one person from a serious condition, it’s got to be worthwhile.
- Music. I’ve started reworking a song I wrote for a friend who died of cancer a few years ago and making it more generic. I’ve been waiting for my muse to come back. It’s good to get back into it again.
- I’m hoping to get some more donations for Relay For Life. It’s a real struggle. I know it is still a couple of month’s away. I’m keen for suggestions from anyone as to how I can encourage people to part with $5. It’s tax deductible so you even get some of it back. If you can find the time, I would so appreciate that gesture. The Cancer Society are a charity, the first people I called for help and advice once I knew I had cancer and they get no funding from Government. We also have room for a few more members on the relay team if you can handle taking turns walking around a track for 24 hours. It really is a fun and moving event.
If you’re still here, thanks for supporting me on this journey. I am feeling a bit better today, hence the almost 1,000 words, but also looking forward to a quiet day inside while the storm rages outside. Wishing you all a wonderful weekend. I’m now going to reword the speech I didn’t give into a letter that I can give to the newly married couple.
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you write amazingly about details, i work in radiation field and i totally get what you say, keep it up, you’re awesome
Thanks very much Kian, its certainly different to what I expected. I can relate to tired, but when you sleep for 9 hours and still feel just as tired, its a bit different:)
Just thought I should let you know that I am reading your blog with interest and to let you know although its years since we met and you may have forgotten who I am I do wish you all the best.
regards John Gilbertson
Life Member NZ Motel Assn Admin Officer – Nelson Motels Owner Operator – Executive Limousines Nelson
+64 21 548 568 +64 3 548 5682
5 Jubilee Way and 24 Golf Road Tahunanui Nelson 7011
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Hi John, thanks for leaving a comment, I certainly haven’t forgotten you. You were a kindred spirit ahead of your time in the concepts of location based services:)
yes, the radiation is a grind. I was badly fatigued by the end of my treatment, but was recovering nicely in about 4 weeks. Hang in there, you’ll make it through.