I’ll never forget the day when my wife was diagnosed with malignant pleural
mesothelioma, a rare and deadly cancer of the lining of the lungs caused by
asbestos exposure. On this day, I also became her caregiver, which was something
I wasn’t prepared for. Only three months before this, our daughter, Lily, was born.
We were excited about celebrating our baby’s first holiday season, but soon after,
our lives took a drastic turn for the worse, and we started down a long and difficult
road to beat this terrible disease.
The full implications of playing caregiver to my wife hit me almost immediately after
the doctor gave us the diagnosis. The doctor gave us some information on
mesothelioma and recommended that we see a specialist. We chose to go to Boston
to see an expert in the disease.
The two months following that were horrible. My wife and I had held full-time jobs
before this incident, but she was now unable to work and my hours were cut to part
time. When I wasn’t working, I was taking my wife to doctor’s appointments, caring
for our daughter and arranging travel. I was overwhelmed. I feared that my wife
would die, that we would spend every cent we had fighting it and that I’d end up
alone, homeless and broke with a baby. However, I needed to be strong for my wife,
so I hid my despair as best I could and tried to remain positive for my family.
We were lucky to have so much help from both loved ones and strangers. We’ll
never be able to repay them for their kindness. The best advice I can give to people
who are in our situation is that if someone offers to help you, you should accept it.
No matter how big or small the favor is, it’s one less thing you have to stress yourself
with. There is no doubt that caring for someone with cancer is hard. It will probably
be the hardest thing you’ll ever deal with. It’s essential that you don’t allow your fear
and despair control or overwhelm you. It’s okay to have bad days. After all, nobody
is perfect. However, don’t ever lose hope for a better tomorrow.
Heather endured months of grueling mesothelioma chemotherapy, surgery and
radiation treatments in the attempt to beat her cancer. It took a long time for our lives
to regain some semblance of normalcy. My wife, against the odds, managed to beat
mesothelioma and is still alive and healthy today. My experience with this has
reminded me of how precious our time is. After struggling through this whole ordeal,
I felt well-equipped to go back to college for information technology a dream I never
thought I’d see come true. I graduated with high honors and was my class student
speaker. During my speech I said that if you’d asked me what I’d be doing in five
years, I never would have guessed that I’d be on stage giving my speech. I told my
classmates that no matter what they’d face in their lives, to never lose hope and that
we’re all capable of accomplishing far more than we think if we have faith in
ourselves. Heather and Lily were in the audience to cheer me on, and that was the
greatest reward of all.
It is a couple of years since i last posted. In the meantime my cancer has metastasised to my liver and is now inoperable. Eighteen months of chemo have made little difference but I AM still alive and kicking.
I spent a wonderful morning at breakfast with my son recently. I took along a bag of water bomb balloons for the kids and I’ve never seen such a small investment create so much fun. We all messed around in the lap pool, throwing and ducking water bombs and being thoroughly drenched.
A visitor to this blog has asked if he might post some of his experiences of caring for his mother. This will be my next post.
It’s nearly a year since a cancerous growth was discovered in my bowel. I had a successful operation to remove it and last week I had another colonoscopy. I’m overjoyed to say that I am still free of the big C.
I’m enjoying the lazy life of a retiree living in a village specially for over 45s and waking every morning with nothing that I absolutely have to do. That doesn’t mean that I actually do nothing, however. I have taken over the running of the library of donated books that we have in the village and also make much use of their wonderful facilities. I have more new friends here than I had in my old neighbourhood after living there for 10 years. I’m even involved with the Village Players and we rehearse twice weekly for a show that we’re putting on in November. Silly stuff but a lot of fun – and I’m even allowed to sing!
During the next few days I took time to evaluate my future work options. I have been working well past retirement age and had never seen myself giving up work altogether but now I relise that I must make the most of my life and not continue in a job that i really no longer enjoy. My years as a librarian have been fun, fulfilling and mind-opening but the job has changed considerably over the past few months and I no longer enjoy it as i once did. We have also very recently sold our house and bought into a village complex (not a retirement village) where we are planning to move sometime in July.
I therefore have decided to take all the sick leave my GP recommends, then all the other leave due to me (including long-service) and then slide gracefully into retirement. I would heve preferred to choose the date but might have procrastinated for several more years.
A week is a long time in hospital but I have been very well looked after and am recovering well. There is some advantage in being a stubborn Taurean as this disease has not been allowed to get the better of me; in fact the doctor gave us the welcome news immediately after the op that it had not spread to any other organs, lymph or blood and I have received the all clear.
The following Monday I booked into hospital at about noon and had to repeat the dreadful procedure of cleaning out mt bowel before the operation. At least I had the assistance of the nurses this time. My surgeon came to see me and i jokingly asked if he could perform a bit of lipo on my tummy at the same time (he was not amused).
Tuesday arrived and Iwas exhausted, hungry and thirsty. I was allowed to drink a bit of water early on but nothing after 9:00 am so I just stuck it out, Timo sitting with me all the time. Eventually my time for surgery arrived and I was wheeled into theatre and very soon placed under anaesthetic. Of course I remember nothing about the next few hours but when I came to I had pipes and tubes attached to me at various places and a buttin I could press whenever i wanted to control the pain, not that i used it much.
When my surgeon came to see me he gave me the welcome news that he had removed all trace of cancer and the autopsy revealed that, although it had gone through the bowel wall, it had not spread to any other organs or to the lymph glands.
The first few days of recovery were painful but I enjoyed every tiny positive bit of progress. The first time I was able to sit on my own was exciting and when I could shower without help and without even sitting in a chair I did a little happy dance around my room. Food at first was almost non-existent. I don’t know how much weight I lost but the so-called ‘nourishing fluids’ that followed my ‘clear fluids’ diet was far from nourishing. Nurses asked me every day if i had ‘passed wind’ and when that exciting event occurred I was at last allowed a few solids. When my diet reverted to normal my only regret was that I hadn’t the appetitie to eat everything on the too delicious menu.
I was thoroughtly spoilt flower-wise and the staff said that I seemed to have more flowers than any other ward. The rooms are badly designed in that, while lying in bed, one is unable to see the flower shelves but once I was up and about I moved my bed so I could see them all the time.
While in hospital I kept busy reading, knitting, or visiting and partying in Second Life. What wonderful friendships I have made there; two of them even phoned me in hospital, one from Melbourne and one from Chicago. Nurse say that all my activities probably helped my rapid recovery and friends and relations who came to visit were amazed to see how well and cheerful I looked. I had lots of visitors – one day as many as 10 though fortunately not all at the same time – and laughed a lot.
What reason is there not to laugh? I’ve been given new life in so many ways and don’t want to waste any of the many days left to me. In mid-July I’m going to Melbourne to visit my son and his family (my granddaughter there is almost 8 months old) and at the end of July I’ll be jetting off to Bali for a two week holiday in the sun. before that happens we have to pack up our belongings in preparation for moving house (not sure when that will happen yet). It may be pouring with rain and the wind blowing great guns. We may have had the domed skylight blown off our roof and have to catch the drips in buckets on the kitchen floor. But who cares, I’m alive and life is GOOD.
“You have a growth in your bowel and it’s probably cancerous.”
I couldn’t believe that I had heard correctly. My hand crept out from under the blanket and gripped the hand of my husband, Timo, who was sitting beside me. It’s not true; this isn’t happening to me; I’m never ill; were some of the thoughts that went through my mind. I focussed on the word “probably” and gained comfort from that. Timo, however, heard only the word “cancer”.
For the past several weeks I had felt tired and off-colour, quite unlike my usual self. I’d taken more sick days off work than normal and eventually decided to visit my GP and tell him that I was feeling “bleagh”. He sent me for blood tests which indicated that I was anaemic and as a result he decided that I should have a colonoscopy and gastroscopy to try and determine the cause.
Preparation for a colonoscopy is extremely unpleasant. You have a drink a liquid which doesn’t taste too bad at first, but this has to be repeated again an hour later after your insides have stated to work fast and furiously. I gagged after half a glassful and just couldn’t take any more. Then I started eliminating from both ends at the same time!
Come morning I was exhausted and couldn’t face taking a third glass of the liquid. Timo drove me to Joondalup Hospital and had me ensconsed in Day Surgery where the nursing staff couldn’t have been nicer and more positive. I remember one who had to ask me various questions about possible contact with swine flu or mad cow disease; when she came ticking the latter on the admissions form she said, “No mad cow tho’ she sometimes feels like one”. That raised a laugh and helped to alleviate my trepidation about the procedure.
I didn’t have long to wait before I was wheeled into the theatre and within seconds I was asleep, coming round to feel thirsty and hungry but not able to have more than water for a little while. I longed for the promised sandwich and cup of tea but had to wait until what seemed like ages. I didn’t realise that anyone was avoiding telling me the results, I just wanted my tea and sandwich. Only after Timo returned to sit by me did the doctor tell us the awful news. and advise us that it was probably hereditary and I would need to tell all my close relatives.
I was in a daze when we returned home. I made an appointment to see my GP the following day, Friday, and he advised a CT scan the next morning and made an appointment for me to see a surgeon the following week. Monday June 1 was a public holiday in Western Australia so nothing could be done until after the long weekend.
The surgeon was very positive about the wholel thing telling me that colon cancer is one of the easiest to treat and he had every confidence in being able to remove all traces of the cancer (by then it was a probability, not a possibility). I was booked into Glengarry Hospital for an operation on the following Tuesday and just had to wait. I was so glad that I had some pretty nighties and an attractive dressing gown so didn’t have to go shopping for those.
Wednesday I returned to work to break the news to my boss and colleagues. I didn’t want them all pussy-footing around me so told them bluntly what had occurred and what the stakes were. I also said that I had absolutely no intetion of letting this disease get the better of me and with my good old Taurean stubbornness I was ready to fight!
One of the cool features of WordPress is the easily-viewed readership statistics. I last posted to this blog several months ago but am surprised to find that my readership – or people who visit the site occasionally – has changed little.
My reason for not posting here is that I am concentrating on getting the new Library blog for central TAFE up and running. It is called The Fridge (is that cool?) and we are hoping to involve library users more. Though we try to promote The Fridge as much as possible and posts are much more regular, this semi-dormant blog still receives more visitors. Are people more interested in personal blogs?
What do you think might be the reason?