Standing By My Wife Through Her Cancer Journey (by Cameron Von St. James)

I was contacted in December by someone who wishes to share his family’s personal story.  This truly inspiring account written by Cameron Von St. James demonstrates the power of hope.  It has also inspired me to revitalise this blog.  Thank you Cameron.

Standing by my Wife Through Her Cancer Journey

family - Portland

On November 21, 2005, my family’s lives changed forever. On this day, my wife Heather found out that she had malignant pleural mesothelioma. It had only been three months since we celebrated the birth of our first child, and instead of getting ready to celebrate our first Christmas together, our lives were heading into a chaotic period.

Before we even left the hospital, I knew that I would have an important job ahead. Caring for a cancer patient would be extremely difficult. After the doctor told us about mesothelioma, he gave us three places we could go for treatment. My wife was speechless after learning about her diagnosis; therefore, I made the decision to go to Boston under the care of Dr. David Sugarbaker, a renowned specialist in the treatment of mesothelioma.

During the next two months, we were living in a very chaotic situation. Heather and I both used to work before she was diagnosed with cancer; however, after her diagnosis, she could no longer work. As for me, I could only work part time. I had to care for my wife, travel to Boston, and take care of our daughter. I was so overwhelmed and often thought about the worst possible outcomes.  I was terrified of losing my wife and being left alone to raise a daughter who would never really know her mother.  On several occasions, I found myself breaking down and crying when I was alone.  However, I never cried around Heather because I knew she depended on me to be strong for her.

We were blessed to have so many people to help us. Many people would give us  both words of comfort, and financial assistance which we so desperately needed.  I was so hesitant to accept their help at first, but as soon as I let go of my pride and started accepting the generous offers that were coming our way, a huge weight was lifted from my shoulders. If there is anything that I would tell people dealing with cancer, it would be to take any offers of help offered to them.

Caring for someone with cancer is difficult, and most people will experience a ton of emotions; however, it is important to not let the fear and anger take control. By continuing to have hope, life is easier to manage.  It was the most difficult journey of either of our lives, but after Heather’s intense treatment involving surgery, chemotherapy and radiation, she miraculously beat mesothelioma, a feat so rare it is almost unheard of.
After this ordeal, I decided to go back to school to study Information Technology.  My experience as Heather’s caregiver helped prepare me.  I graduated with high honors, and at my graduation, I was the student graduation speaker. During my graduation speech, I informed the audience that I would have never imagined giving a graduation speech five years prior; however, by having hope and never giving up, people can accomplish more than they have ever dreamed of accomplishing.  Heather and Lily were in the audience to cheer me on, and that was the best reward of all.

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Relief: a brief update

I’m happy to report that my visit to the hospital on Wednesday did not bring me bad news.  I was told that radiotherapy can continue to affect the treated area for some considerable time.  My reaction is not common, but thankfully it looks as if it’s not cancer-related.  Most of me feels very reassured by this.  I can finally relax knowing I don’t have to undergo any more treatment.  Yet there is still an anxiety inside me which persists.  Somehow I just can’t accept that the cancer has gone, or that it won’t return.  I wonder if there’ll ever be a day when I feel totally free from cancer.

Uncertain Times

Since having cancer my determination to stay alive is something that permeates my consciousness.  I am ever-aware of my fight for survival.  Stronger still is the need to make the most of each day.  At first this was a pressure which had the effect of stifling my creativity.  I was so desperate not to waste time that I cupped it in my hands like a trapped butterfly, afraid to let it go.  Once I became aware of what I was doing I slowly unfurled and now my spirit feels free again.

But once again I am facing uncertainty.  After a visit to my GP I have been referred for more tests, which are scheduled for July 13th.  The familiar feeling of not knowing what’s in store, not really wanting to know yet disliking being in the dark – it all buzzes round my head like a swarm of angry bees.  It’s possible that the changes in my breast are due to lymphoedema, but it’s also possible there may be a more sinister cause.  I’m so scared of the worst scenario becoming a reality.  I feel as I’m in some kind of limbo.   Being suspended from a great height and looking down at my situation has its merits in that it stops the panic taking hold of me.  But then there’s the frustration that I might be wasting precious time. It’s that not knowing – it gnaws away at you like an invisible worm.

I think this is something I may have to expect from cancer.  Overcoming one hurdle and then stumbling upon another when you least expect it.  I wonder if I’ll ever feel  truly free from the shadow of cancer.  If this latest scare turns out to be just that – a scare – I’m almost certain there will be more.

But whatever happens I know that I won’t go down without a fight.  I am very clear about what I value, and I’m not going to relinquish what I value just because the mountain I’m climbing suddenly gets a thousand feet taller.  July 13th will come and go.  Before then I’m going to London as my Guide dog Trudy is a finalist in the Guide dog of the Year Awards.

Trudy’s award is a welcome distraction from my anxieties, and I think if I look hard enough I’ll be able to find a few more.  But although distracting myself is one way of dealing with anxiety, I’m also trying to accept what I think and feel.  Learning to accept that this is what I’m feeling rather than always trying to push it away, might well preserve my energy for when the fight is really on.

I will be so relieved when this particular uncertainty has evaporated – whatever the tests reveal.

Post-treatment Free Fall

When I first found the lump I did what several people do – tried to ignore it.  Sometimes I could go for months without thinking about it.  But then (usually in the shower) the niggle would start to worm away inside my head: “What if it’s cancer?”

When it was just my lump it was my secret.  Deep down I knew it was cancerous, and it was more than a general anxiety.  I knew in my heart that this was nothing to do with hormones or my menstrual cycle.  So in the end it was a case of when to visit my GP, not should I?  shouldn’t I?  I kept it to myself as long as possible, but all the while I knew that my lump’s hiding place would have to be exposed.  Confiding in a friend was the first step on the “cancer journey” for me.  She came with me to the GP, and we both talked ourselves into thinking it was nothing serious.  The statistics of breast lumps are that around 80% turn out to be benign, so I put myself in that 80% camp – though deep down I knew I wouldn’t be there for long.

The GP visit fuelled a whirlwind of events.  Within two weeks I was at the hospital undergoing a mammogram and biopsy.  My guide dog Trudy was behind the curtain with a friend, and I could hear her crying while the needles went in – first under my arm, then into the breast itself.  Although the axillary biopsy was quite painful, I found myself calling to Trudy to reassure her that everything was going to be OK.  But within half an hour I was listening to the Consultant: “I think you have a small breast cancer”.

The shock sent waves round my entire body, but I didn’t feel emotional.  My friend appeared more devastated than I did.  I went into fight or flight mode, and the battle was definitely on.  The results were confirmed two days later, which was exactly a week before Christmas day 2010.  I remember being surprised that I felt OK.  I was still exactly the same, except that I knew I had cancer.  The lumpectomy was booked for New Year’s eve, and after that it was an agonising wait for the pathology results.  Those two weeks dragged their feet as if they were shackled by a ball and chain.  I thought I was definitely going to need chemo, and tried to joke about losing my “barnet” although I dreaded the prospect.

But thankfully as far as cancer results go, mine were positive.  It had been caught early, and was not an aggressive cancer.  I was prescribed tamoxifen as my cancer was oestrogen-positive, and told that 5 weeks of radiotherapy would begin in about a month.  The tamoxifen affected my mood and I became very irritable and depressed.  The physical side effects (i.e. nausea, hot flushes, itching) were nothing compared to the sudden change in my emotional state.  Since coming off tamoxifen 2 months ago I now know that this was definitely the cause of my depression.

The radiotherapy didn’t affect me until the last two weeks.  My skin broke down completely and became infected.  The fatigue began taking its toll.  I literally couldn’t resist the urge to lie down – it was like a magnet pulling me towards the sofa or bed.  As the radiotherapy treatment was out-of-County in Cheltenham General hospital, that became my life for about 6 weeks.  It was Cheltenham, home, bed, Cheltenham, home, bed… Trudy’s routine was out of the window, and for this reason I decided to board her with Guide dog volunteers while I was having treatment.  But the separation was more painful than I’d anticipated and my life fell apart.  After two days, she came home and we endured the “radiotherapy days” together.  Trudy’s companionship and unerring support kept me from going under.

Then suddenly (or so it seemed) the treatment finished.  No more hospital appointments or doctors, just an empty space.  Was I supposed to be “back to normal”?  Was this it?  My empty space became a haven for fears and anxieties, suppressed anger, confusion and a sense that I should be happy, relieved, even grateful.  In truth I felt that I’d been abandoned, and was free-falling into an abyss far away from everyone.   The invisible cancer curse followed me everywhere.  I couldn’t express my fears easily as those who cared about me were rooting for me to be my “old self” again.  But my old self has left, and at first this realisation annoyed me because I felt the change had been forced upon me through no fault of my own.  Now though, the rawness of cancer and cancer treatment is slowly starting to heal.

I’m beginning to feel that I’ve been given a second chance, and it’s up to me what I do with this second chance.  As time goes by, I’m hoping my fear of a recurrence or that the cancer has already spread, will lose its grip on me.  There’s now an urgency about life, which gives me zest, and flattens complacency.  I consider myself very privileged to have had such a rude awakening.  None of us knows what lies ahead, but if you’ve battled with cancer or something similar you make damn sure that you value what you have and make the most of it.  I have Trudy who is unconditionally loyal, I have friends who have stuck by me even during my “tamoxifen tantrums”, and I have life.