Altered Spaces

"Lights will guide you home, and ignite your bones, and I will fix you"

Guest Blog: Cancer Through a Caregiver’s Eyes – by Cameron Von St. James

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Until you are in someone else’s shoes, you cannot comprehend what they’ve been through. My wife has said on several occasions that she does not know how I coped with her mesothelioma diagnosis, just as I can never really know what it was like for  her as the patient. As I share my story as her caregiver, I hope that it can shed some light on what this experience is like, and provide some help for those currently struggling through similar situations.

Three months prior to Heather’s diagnosis, we welcomed our first child into the world. The birth of Lily was exciting and full of joy and we had a whole, happy life envisioned for our new little family. Our spirits were quickly crushed by the diagnosis of mesothelioma. As my wife cried after being diagnosed, I wondered how we would ever make it through this.

I experienced a range of emotions. First, I felt overwhelmed, on the verge of a nervous breakdown. When the doctor started questioning us about important medical decisions, it brought me back to reality. Though I felt overwhelmed and would feel that way for many days, I knew I had to overcome my feelings to make medical decisions for my wife.  This would prove to be easier said than done.

After the diagnosis, my emotions ranged from fear to sheer rage. I used a lot of profane language because I did not understand how to manage my anger. It didn’t seem fair that we had to go through this, and I simply didn’t know how to cope. I knew that it couldn’t go on like this, however, and over time, I learned to manage my anger and channel my feelings into positive energy. I never wanted my family to see that I was afraid, and I knew that they needed me to be strong for them.  From then on, I did my best to be a source of hope and optimism for my wife.

During her illness, I always had a long to-do list. The list included work, travel arrangements, caring for our pets and my daughter, taking care of the house, scheduling doctor appointments; the list could go on forever. I had to learn how to prioritize the tasks and work on what was most important first. This helped keep me from becoming overwhelmed. I also learned to accept help from others, and we were thankful for his help during this time. I am not sure what I would have done without our incredibly supportive friends and family.

There were two months in particular that were most difficult for me. Immediately after her risky and intense surgery, Heather flew to South Dakota to stay with her parents as she recovered and prepared for her next round of mesothelioma treatments: chemotherapy and radiation. Lily had already been staying there during the surgery, which left me home alone to continue to work at my job to support our family. I was only able to see Heather and Lily once during this period.

One Friday after work, I drove 11 hours overnight through a snowstorm. I stopped to get a couple hours of sleep in my car as I waited for the plows to clear the roads.  When I arrived Saturday morning, I was completely exhausted, but so excited to see my family. I spent Saturday and Sunday morning with my family before I got back in the car to drive 11 hours home to be at work Monday morning.

This time was incredibly difficult for my family, but I never considered the time a loss. I don’t look at this time with regret. Cancer forces people to make impossible decisions, but we learned not to anguish in those decisions.  We learned to celebrate and take comfort in the fact that we retained the ability to make choices at all.  These touch choices allowed us to have some small amount of control over a situation that all-too-often seemed completely beyond our control.

I learned a lot from this experience. I learned to accept help from other people and to appreciate the ability to make choices. Making decisions is challenging, but we managed to maintain control during a time of uncertainty. Despite the overwhelming odds against her, after six years Heather is still healthy and cancer-free. I hope that by sharing our story we can help other people make it through their battles with cancer.

 

Written by wideawakewesley

January 25, 2013 at 2:14 pm

Posted in Uncategorized

Rejecting Fate

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It’s been almost eighteen months now since my wife was diagnosed with cancer; and after the hell that was 2011, 2012 has been much kinder to us so far. The experience will never be forgotten; and even though the memory fades, there are always reminders, be it in real life or on TV. It seems it is impossible to escape the Big C.

It may not occupy my thoughts as much as it once did, but I still worry about the future on a regular basis. I will always have hope that this will be the extent of my family’s brush with cancer, but the cold hard stats suggest we’ll be fortunate if it is. The best thing I can do is try not to linger on those thoughts for too long, and where possible keep them private.

I am still immensely grateful for the support of our family and friends, both during the period of my wife’s treatment and afterwards. Most recently that took the form of donations totalling over £1400 in support of my wife as she ran The Race For Life. Emotions ran high that day and my wife’s achievement is one that neither of us will forget. Before 2011, you couldn’t have found a person less likely to want to go running than my wife, but now she’s got the bug. She is dedicated to her training, never missing a session, and there’s a 10k run looming on the horizon.

Thankfully, the best outcome of 2011 is that our kids seems to be completely unaffected by it. Whether they will remember that period of our life is doubtful, but in a way I kind of hope that they do. It may have been an awful experience for my wife and I to live through, but if knowing more about cancer were to help them make good decisions in their life, there might be something positive to take from it, however small.

I will control the future as much as anyone can, but in the end what will be will be.

Written by wideawakewesley

July 10, 2012 at 10:37 am

Posted in About Me, The Fight

On The Up

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It’s been five months since my last blog post and life is slowly improving. My wife has gone through the hell that was six months of chemotherapy and come out of the other side. She still has radiotherapy to come (starting today), but that is much less daunting and will hopefully be far less painful too. All through the last six months, her resolve and strength have amazed me and continue to do so. To watch her cope with the demands of chemo and still manage to be a mother and a wife is a phenomenal achievement. It’s one thing to have to look after two kids, but when you throw this big one into the equation, well that’s a hard ask for any healthy person, let alone a cancer patient!

Along the way my wife has taken great strength from the support of her friends and family. The many of you who sent her a card, phoned her, cooked for us or helped with the kids. Every little bit helped and will continue to do so as she finishes up her treatment. Everything is in a much better place now and from her most recent mammogram, the outlook moving forward is positive too. All of that can change of course and is difficult to contemplate, but having met other women who have not been as fortunate as my wife, I am confident that should the worst ever happen, she has the strength and the support to fight it all over again.

The most important thing that the support from our closest friends and family allowed us to do, was maintain a reasonably normal life at home. For that we are so unbelievably grateful. It’s difficult to deal with something like this alone without having to consider what impact it might have on your kids. Fortunately our son appears to have handled the whole thing amazingly well and if his school report is anything to go by, he seems completely unaffected by this year’s events. He even has a good understanding of how cancer works now thanks to a cool comic (free on the NHS) that explained it all for him.

I would also be remiss if I didn’t thank the amazing staff in the Macmillan Haematology Oncology Day Unit at Milton Keynes General. The very first visit may have felt a little scary, but the staff there were so warm and welcoming. You could not buy better care than we got and I hope that recent and upcoming cuts to the NHS don’t impact on that service. A special mention is reserved for George, the giant Romanian nurse, because while each chemo treatment was a daunting experience, he made it so much easier for both of us.

My wife now has the joy of four weeks of daily trips to Northampton General to look forward to. It’s a complete pain, especially when you’re trying to manage with one car and two kids to collect from school, but I guess it could be worse. Once those four week’s are over, we can finally try to enjoy our summer. I hope for my wife’s sake it’s not too hot (as she hates the heat), the diet she’s now undertaking goes well (-6lbs in one week so far!) and that her hair grows back quickly (not for my benefit, for hers).

There have been plenty of difficult moments in the last six months, but I still have my wife by my side. Nothing could give me more happiness than that.

Written by wideawakewesley

July 13, 2011 at 12:19 am

Posted in About Me

101 Things About Me

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2011 Edition

1. I’m married to the most beautiful woman in the world
2. But I don’t deserve her
3. I’ve never been more in love with her than I am today
4. And I’m either very lucky or someone upstairs likes me
5. I’m not convinced there’s anyone upstairs
6. Because I’d like to think I’m 100% in control of my own life
7. I’d also like to think death isn’t just the end of my existence
8. I hope and pray my wife, son and daughter are always with me
9. And yes, I pray even though I don’t believe
10. The fence I sit on is quite comfy
11. I like to be objective when I can be
12. I don’t like to judge people
13. And I’m probably a little naive
14. I have almost everything I wanted in life
15. No that doesn’t include an iPad or iPhone
16. It does include my health, my wife, my son, my daughter, job security, a loving family, a house, car and a laptop
17. Yes I’m boring, so boring that I once blogged about mortgages and tax
18. I would like to lead a more exciting life
19. But I would only do so if I could keep everything in 16
20. That will never happen because I’d become an actor and actor’s don’t have job security
21. Can you tell I don’t like taking risks?
22. I don’t gamble either
23. I lied, I’ve spent about £5 on the lottery in my life and won £20
24. I’m very good with money
25. And I like to stay in the black
26. I’m a firm believer that credit cards are for emergencies, not for living off
27. Which makes me sound ancient
28. But I’m actually 34 this year
29. Smokey and the Bandit was released on the day I was born
30. And Star Wars was released a week later
31. I love both those movies and many more
32. But I know I’ll never manage to watch every movie I want to
33. Or play every videogame I’d like to
34. I have to stop myself buying them now as I own too many
35. Which became more difficult when a friend of mine gave me an XBOX 360
36. I want a movie/videogame theatre room in my house
37. Which is in Milton Keynes
38. I love it here because it’s very green
39. Which is something I’m prepared to fight for
40. I occasionally fight lost causes
41. Fighting for something gives me a real high
42. But I would never take drugs to get high
43. I have however smoked four cigars
44. And I was surprised to find I enjoyed all of them
45. I wish I had more willpower though
46. Because my weaknesses depress me
47. And my failings anger me
48. My anger is my dark side
49. But I’m more in control of my anger now
50. And I’d never hit anyone because of anger
51. Fortunately there are plenty of walls, doors and other inanimate objects to hit
52. I will continue to strive to become the person I always thought I would be
53. I blame some of my failings on my childhood
54. None of which is my parents’ fault
55. I think my parents are fantastic and I love and respect them
56. But I wish I knew them better than I think I do
57. One day I will start a family history to pass down the generations
58. I’m sure my ancestors will be thrilled to know their great great grandfather was a software tester
59. I got this job when I left University
60. And was offered it before I got my degree
61. Which leads me to believe work experience is more important than grades
62. I’ve worked in the same office for almost twelve years
63. And the name over the door has changed three times
64. But I’ve not moved more than 10ft from where I originally sat
65. Working with computers and loving Star Wars must officially make me a geek
66. Well that and co-hosting Media Pulp
67. Which also probably qualifies me as a journalist
68. I’m addicted to the Internet
69. And welded to my laptop
70. Some of my friends used to view me as a huge pornmeister
71. And I don’t like being viewed that way
72. I do not possess a single pornographic image (or video)
73. And I think the world would be a better place without free porn
74. I spend almost all my time online reading news
75. I’ve seen so much on the Internet
76. That hardly anything shocks me anymore
77. But I think the world needs a dedicated international computer crime police force
78. And I’d definitely be interested in a job there
79. It saddens me that the human race is so tribal
80. I would like to live in a world without territorial boundaries
81. But I’m opposed to half the crap Europe foists on us
82. I wouldn’t want to live in mainland Europe or America
83. But I wouldn’t mind Canada or New Zealand
84. I would love to backpack round the world
85. I’m very jealous of anyone who has managed it
86. But I will never backpack round the world
87. Because I have a wife who loves luxury
88. I have dreams I will never fulfil
89. But I hope my son and daughter won’t experience the same frustration
90. My wife and I always said we’d have two children
91. After one I wasn’t sure I wanted more
92. But I’m happier with two
93. I will endeavour not to push them to follow my dreams
94. But I’d love it if they were a successful footballer, actor or wrestler
95. Then they can pay for my retirement
96. I really hope I get to see the world before I retire
97. But I’m nervous about visiting places that don’t speak English
98. I spent time in a hospital in Tenerife where they didn’t speak English, I don’t recommend it.
99. I could murder one of these right now
100. I can’t understand people who don’t like ice cream or chocolate
101. My mother-in-law buys me Hagen Daas, she’s wonderful!

Written by wideawakewesley

March 21, 2011 at 1:23 pm

Posted in About Me

A Mirror Cracked

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It’s been hard to find the time to write an update recently, but I need to talk today, so I’m going to try and find the words.

On January 25th, my wife had her second surgery. The plan was to remove more breast tissue from around the area of the original lump and to extract some lymph nodes from under my wife’s arm. It doesn’t sound too scary when you put it on paper, but as with everything in life, there can always be complications. Fortunately the operation went well and although my wife was in recovery for longer than we were expecting, there was nothing untoward to worry about.

Her subsequent wound check a week later also went well, with no problems to report, but less than 24hrs later the situation had changed. Although this is common, due to the kind of operation my wife had, she’s now developed a large and very painful fluid build up under her arm. This, combined with a suspected infection in her wound, is making daily life quite painful for her. I’m hoping that the fluid can be drained today and that the weekend will be much more comfortable for her. (*)

Friends have continued to send cards and provide chocolates and cakes to raise my wife’s spirits, all of which are greatly appreciated. She’s managed to venture out of the house once or twice to do some shopping with her mum, but the smallest things are taking it out of her right now, even short visits from her friends. As always it’s a struggle to try and stop her doing too much, and when her mum returns home next Tuesday, I’m expecting one or two battles ahead as she comes to terms with me running the house (or rather not doing everything as and when it needs to be done and by her methods).

If I’m honest, I’m really not looking forward to the next few weeks. My wife runs so much of our lives that it’s going to be a shock to my system to try and take over everything. No doubt I will get a much greater appreciation of not only the work she does, but the work that single parents do day in day out, as I juggle my wife’s needs, the kids, the washing, cleaning, cooking etc. I just hope I manage to find some time to switch off myself. A stressed and grumpy Daddy/Husband isn’t going to be much fun to be around and I have a games backlog a mile high to play through!

Thankfully work continue to be supportive as I duck out left, right and centre to pick up kids, take them to after school activities and my wife to the doctors etc, but there’s surely got to be some limit to the slack they can cut me. While I’m making up any hours I miss, it feels like the quality and quantity of my work is suffering as a result of all the distractions. Which leads me onto the reason behind the title of this post.

Most of the time now I can function as normal, forgetting that this sword is hanging over us, but then there are moments when my mind wanders. Thankfully these moments usually occur when I’m alone, when I have my thoughts to myself, but last night it became too much and I couldn’t hide my feelings.

In case you hadn’t noticed, breast cancer is all over the news today and thanks to the BBC News website, I couldn’t help but read one of their articles where they mentioned survival rates. Now they may well be good for something so serious, but the problem is that they exist at all. When I read approximately two thirds of women live for over twenty years after being diagnosed, I broke down. My wife is 35 years old and the one thing I want more than anything in life is to grow old with her. I’ve never been much good at the whole glass half full thing, so all I read was, one third of women with cancer don’t live longer than twenty years after diagnosis. That would suggest my wife has a 66% chance of making it to 55 years of age. Even typing that now just makes me feel numb. I know there are many other things that can cut a life short, but seeing it visualised as a statistic broke me.

For good or ill, I’ve tried my best to avoid the thousands of websites that contain information about cancer. I’ve chosen not to read any of the accompanying material provided by the NHS either. This isn’t because I want to pretend it’s not happening, but because I know it’s going to be hard. I know my wife is going to struggle to cope with the treatment, that it’s likely to knock her for six etc. Reading the details myself isn’t going to help me and the last thing I want to do is worry myself to death and cry myself to sleep every night. Unfortunately, I just couldn’t help but read that article yesterday and I’m still not quite over it.

Anyway, next week brings the results of my wife’s last surgery. We should know the extent of the damage then and have some idea of the treatment plan my wife will need to follow this year. Regardless of how bad things are, we’ve been led to believe they will hit my wife with everything they have, so in some ways the results aren’t important, but I’m sure they’ll feel it on the day. No doubt my productivity will plummet in the run up to my wife’s appointment.


* The fluid was drained and my wife is feeling much better as a result. We also now have two nurses with opposing views on whether an infection is present. Not an ideal situation, but at least it’s better than two saying there is an infection.

Written by wideawakewesley

February 4, 2011 at 4:12 pm

Posted in About Me, The Fight, Uncategorized

Tagged with ,

Can you hold please?

with one comment

It’s hard not to see the future in much the same way as a prisoner in a movie, marking the days on a wall as we move ever closer to release. When we got the news we were just about to take up a newspaper holiday offer, but that’s had to be shelved now as it’s almost impossible to plan anything for the year ahead. Not knowing where we’ll need to be and when is a pain in the backside at the moment. Hopefully, once we get the results of my wife’s next operation (on the 25th), a treatment schedule will soon be arranged and we can start to plan around it, because right now the future feels like it’s on hold.

I shouldn’t moan too much though. My wife and I remain in good spirits, buoyed by the support of our friends, family and the internet at large (or at least my twitter followers). At the moment, it seems everyone is intent on fattening us up in preparation for the struggle ahead. We’re working our way through some delicious home baked brownies at the moment and are salivating at the prospect of a lemon cheesecake in the near future. It’s making me think we should open a cake shop, because the baking skills of our friends really are second to none and that’s without even asking our master cake maker to rustle us something up. I have to say though, while the cakes are lovely, where’s the PS3 I asked for?

Talking of technology, my wife, the book devourer, bought a Kindle this week. It’s strange actually, because a close friend received one for Christmas, but what actually pushed her over the edge, was a chance meeting with a man in the breast clinic. Mere minutes before we received the bad news last week, I noticed a gentleman reading on what appeared to be the latest version of the Kindle. Being horribly impolite, I asked if he wouldn’t mind giving my wife a demo. What followed was probably the best marketing that Amazon’s money couldn’t buy. Not that we were complaining, he was a lovely man and did a fantastic job promoting the device. I’m sure if he’d offered, my wife would have bought his on the spot.

Shortly after that demo we received the news we’d dreaded, but if nothing else, it gave my wife the perfect excuse to treat herself (although I’m still waiting to be reimbursed for it…ahem). Maybe Amazon should use that in their marketing, “Got Cancer, get a Kindle!”. The Old Spice man has got nothing on that kind of advertising!

Ignoring my horrible jokes for a moment, I often think back to that brief meeting. This was a man that was obviously waiting on news about his own partner, but was kind enough to take time out to help us. I wonder what he must have thought when he saw me stepping out for air after just receiving the news. It was obvious to all that I was completely devastated and it must have been so strange to connect with two complete strangers so briefly before such a cataclysmic event and then to witness the aftershocks. I wish he could see us now.

Note: There’s the premise for a movie or TV show in that last paragraph. If you steal it, please credit me. ;)

Written by wideawakewesley

January 20, 2011 at 9:34 am

Posted in About Me, The Fight

Tagged with ,

Good Thoughts and Good Fortune

with one comment

24 hours after the bomb went off, both my wife and I were in much better spirits. To be fair, my wife has been remarkably strong since we received the news. Friends, family and work colleagues have all been incredibly supportive and if you were to talk to my wife now, you’d be hard pressed to think there was anything wrong. She definitely seemed to recover from the news far quicker than I, but both of us were pretty much back in the groove, or appeared to be, after 48hrs.

During that time, my wife was summoned to the hospital again for a pre-op assessment and managed to get plenty of one to one time with her nurse. It was there that a lot of her questions were answered and to some extent her mind was put at ease. From what she was told, the lump was smaller than the average and it seems doubtful there are any others in the immediate vicinity. That’s not to say there aren’t any nearby or anywhere else, but had there been anything close by, the surgeon would have removed it at the time. It’s small victories like these that we will have to cling to moving forward, and this, combined with support from her nurse, definitely helped to improve our outlook on things.

Now to give a bit of history to events, back around September/October, as my wife and I were passing in the bedroom, I touched one of her breasts. Now, I do like to “cop a feel” every now and then (apologies to any of our parents reading this, it’s only natural), but neither us believe that that’s what I was doing. Anyway, while the motivation of my grope isn’t important, the result very much is. As I touched my wife’s breast I noticed a lump almost immediately, and as I moved passed her, my mind was already weighing up what to do next. I didn’t want to unduly worry her as she was breastfeeding at the time and I know how that changes things. However, the threat of breast cancer seemed too serious to ignore and thankfully my brain agreed. That’s probably the best decision it’s ever made (and believe me it’s made some bad ones), so let’s all take a moment to give my brain a round of applause.

After examining herself, as my offer was declined, my wife naturally started to worry. It didn’t feel normal and it didn’t feel like a normal milk duct blockage either, so a GP appointment was definitely going to be necessary. Unfortunately, the GP my wife saw took the easy way out, declaring it was most likely a blockage and that my wife should return in two weeks if it hadn’t cleared. That didn’t sit well with her, but she did as the GP asked, at least for a week. By that time, she was certain it wasn’t a blockage. It didn’t hurt as they normally do and it felt like it was getting bigger, not smaller. A return trip to the GP rewarded her with a much more reassuring ultrasound appointment and subsequent biopsy.

For those that don’t know, around this time I was suffering from extended heart palpitations, not to mention what felt like a million other issues with the car and the central heating (no hot water etc.). As you can imagine, this was a very stressful period for both of us and I distinctly remember one evening where emotions were running way too high. For those that know us well, Kaye and I used to have some cracking arguments. We’d have them anywhere and everywhere, never being shy about who could see or hear. Thankfully, over the years, our relationship has knitted together to the point where we rarely argue now (which is a lesson to those who bail on them early). However, that night, with dark thoughts at the forefront of both our minds, all hell broke loose as many tears were shed.

That wasn’t quite the worst of it though, as we were soon to find out the results of the investigations into both our health concerns would be given to us on the same day. The timing was incredible and did nothing to help either of us. No doubt, many of you reading this now know I was given the all clear, but the mere thought that both of us could be diagnosed with life threatening health issues on the same day still makes me feel a little queasy. Unfortunately for my wife, there was a minute percentage of her biopsy that looked suspect and required further investigation. That led to my wife being scheduled for an operation to remove the lump, but although there was some initial concern, all parties involved seemed to think it was just routine and would end up being nothing to worry about. This meant my wife wasn’t a high priority and she would be looking at surgery in late January 2011, maybe even February. The result of the biopsy had been in the 2nd week of November 2010.

This is where we got our second bit of good fortune. Now I have no idea whether two months in the life of a cancer is a little or a lot, but I do know that operating sooner rather than later, is ideal. Thankfully many people seem to put enjoying themselves above their health, because in the last week before Christmas, my wife received a call from the hospital. It seems that although my wife was quite far down the list of scheduled operations, no-one above her wanted to have an operation close to Christmas. This meant there was an opening for my wife on December 23rd. Naturally she snatched at it and it’s a bloody good job she did too. I do feel incredibly sorry for any ladies who passed on the opportunity, but I’m thankful they did. Had they not, my wife may still be waiting for an operation on a cancer that she was unaware of and was continuing to grow inside her.

Written by wideawakewesley

January 17, 2011 at 12:48 pm

Posted in About Me, The Fight

Tagged with ,

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