Guest post by Cameron Von St. James: Lessons from Caring for my Wife

The role of caregiver is one that is often overlooked. Carers may be called upon to become the solid force upon which their loved-ones can rely – making tough decisions, working hard, and carrying a heavy emotional burden often without support. In this guest post blogger Cameron Von St. James shares his experiences, and offers some tips for fellow carers. 

In 2005, I became a father, a role that I was excited and proud to take on. However, I never expected to become a caregiver for my wife just a few months later. On November 21, 2005, I turned into a caregiver when we found out that my beloved wife, Heather, had cancer. Specifically, she was diagnosed with malignant pleural mesothelioma. This shocking diagnosis came when our daughter, Lily, was only three months old.

I do not know if anyone can truly be prepared for news like this. I certainly was not prepared to hear this news, and I was not prepared for the role of caregiver. One of the first things that I had to do was make life changing decisions about my wife’s medical care. The doctor gave us three options for treatment locations, and then waited for Heather to express interest in any of them. However, she was far too shocked and terrified at that point to be making any major decisions. Her eyes pleaded for help, and I knew I needed to be there for her. I told the doctor that we would seek treatment with a renowned mesothelioma specialist in Boston. I knew that if Heather had any chance of beating this disease, she’d need the best care possible.

Over the next few months, it seemed like everything descended into chaos. Heather had to leave her job, and I scaled back to part time in order to be able to care for her and Lily. In addition to working, I provided my wife and daughter with the care they needed, scheduled appointments and made travel arrangements, made sure Lily was cared for while Heather and I went to Boston – the list was endless. I quickly became overwhelmed with the responsibility, and more than once I broke down crying on the kitchen floor when my family wasn’t around. Luckily, I found out that we did not have to walk this path alone.

Heather and I were blessed to be surrounded by supportive friends, family and even strangers during our journey. It goes against my nature, but I had to learn to rely on these people for help. When I accepted the help of others, it relieved some of my heavy burden.

When people hear about our experience, they often ask me if I have any advice for other caregivers. The main thing that I tell them is that it is OK to ask for help. There is simply no way that you can do everything on your own, so do not put that burden on yourself.

I am so thankful to report that Heather is now cancer-free. Our journey through mesothelioma surgery, radiation and chemotherapy was not an easy one, but we are stronger for it. If you are caring for someone with cancer, stay strong. It is fine to have bad days once in a while, this is inevitable and even necessary, but remember that no matter what, you must never give up hope.

Cameron’s Top Tips for Carers: 

• If anyone offers you help, take it.  It’s one less thing for you to deal with, big or little, and it should remind you that you are loved and surrounded by people who care enough about you to help. It helps lower the stress levels too. 

• Take time out for yourself.  I like to remind caregivers to take time out for themselves. You’ll fell better and be able to offer better care if you do; and remember, you are human. Caregiving can be stressful, allow yourself to make mistakes or to have an off day. Spend time with friends and socialize. Keep up your hobbies – try to keep as normal as schedule as possible. Sometimes caregivers feel guilty when they take time for themselves. If you find yourself feeling guilty remind yourself that taking time for yourself today can actually help you be a better caregiver tomorrow.

• Take care of yourself.  Put your health first. Make sure you are getting plenty of rest and eating properly. I found that in the short run I could substitute food for sleep. I’d eat more when I was getting less sleep. I could only do this for a few days at a time. Know your body and your limits. Some people tolerate sleep loss and stress better than others. Try to exercise daily. Even a quick walk around the block can be refreshing and help reduce stress.

• Don’t be afraid to ask for help.  Ask family and friends to help when needed. Mobilize your support system and engage with the people around you. Many individuals say they would help if only they knew how. Be specific with your needs and the ways in which they can help.

• Educate yourself.  Learn about the cancer and treatment options. Learn about possible side effects and ways to reduce them. Don’t be afraid to take a notebook into doctor’s appointments and ask questions. There are also excellent online resources available. You might consider joining a support group to learn more and meet other caregivers.

• Use tools to organize and manage your time.  You can reduce your stress by keeping all appointments and important information neat and organized. Use a notepad or computer to help. Keep important information such as insurance forms, medical papers and medication lists easily accessible.

• Prioritize.  You may find yourself with a never-ending list of things that need to get done, or paid, or otherwise, that occupies your time. Prioritize, start with tasks that have to be done sooner or are of the greatest importance and work from there. Ignore all the unimportant stuff, and again remember to call on family and friends to help with your list.

You can check out Cameron’s blog at: http://www.mesothelioma.com/blog/authors/cameron/ 

Resolutions for a New Year

It’s harder to write a blog when you are not well. One of the reasons for my writing this blog was to provide an insight for newly diagnosed people and for my friends that wouldn’t be as alarming as some of the results that appear when you search for metastatic melanoma online. Writing with this incentive becomes more difficult when you have spent the majority of the last two months ill in hospital.

I am now much better, but I had a pretty bad dose of the infamous IPI colitis that rendered me confined to a hospital bed for much of the lead-up to Christmas and made me lose over a stone in weight. In the end the steroids that they normally give you for IPI colitis stopped working, and I had to be given two separate doses of Infliximab (Remicade) that worked almost instantaneously. It is an incredible drug. My gastroenterologist described it as: “The L’Oreal of medicines, because you’re worth it.” It’s so expensive that they only administer it when they really have to. I got out on Christmas Eve and spent the whole of the Christmas period at home, which was excellent.

Early on Wednesday morning of this week however, in my attempts at getting back to normal, I was getting ready to pick up a really good friend from the airport when I leaned over and something in my back “popped.” It was a real Miranda (Sex and the City) moment – you know that one where she does her back in in the shower and she’s lying naked on the floor? That was pretty much me. Two nights in hospital, many strong painkillers and an MRI later, the doctors think I snapped a ligament in my spine – the area already weakened by the melanoma in my second lumbar vertebra. This now means that I have to be extremely careful with my back, because basically I’m at high risk of vertebral fracture now – so no jumping around for me!

I’m sure many of you have already made New Years resolutions, stuck to them, grappled with them, and perhaps started all over again. New Years is an interesting time, because some people love it and put all their energies into dancing headily into the night, whilst others would rather bury their heads into the pillow until the fateful hours pass into a new dawn. This new dawn, however, is the beginning of a blank page for a whole new year. I think it shows a lot about people as to how they react to this blank page before them – do they become excited by the possibilities of a fresh start, or do they wish it were all over so that they can go back to the comfort of the ‘determined norm’ for the rest of the year?

For me, this New Years was a strange one. From August when I started treatment up until now, the plan was certain: four treatments with IPI, see how it goes, and then scan at the end of treatment. Now, however, I won’t be getting my fourth batch of treatment, because of the severity of the colitis I had from it. Instead, I will be having a PET scan at the end of January, and after that – uncertainty. This year really is a blank page for me. I have no clue what I will be doing in May, in September, or even in February for that matter. It all depends on the results of this scan, which is slightly unnerving.

I think New Years resolutions can be a way to put a level of certainty and planning on that blank page that is a new year. The New Year can be daunting, scary and sobering, but it can be ‘tamed’ using a series of sentences that allow the person in advance to neatly write their first new page. These hopes and ideals allow those people with their heads under the pillow to come out again and breath the fresh air of the new (not-so-blank) page.

My New Years resolution is to do more of those silly things that scare me and I therefore never do – e.g. diving into pools, going on roller-coasters, white-water rafting… Perhaps the decision to do more of those daunting things that I would normally say no to will conversely make everything else that is uncertain and frightening about this year seem a little less so.

All I know is that having great friends around you makes all this uncertainty a little less daunting, and luckily that’s what I have.

 

“Are You Ready?”

Unlike many of the other blogs I have been reading on my journey thus far, I am not beginning mine on “Day 1.” In fact, I only began to think about writing a blog a few weeks ago. I found that by reading blogs written by other people with melanoma, I was picking up useful information and finding a great amount of comfort in knowing that someone else was going through the same thing as me. Melanoma is not a “sexy” cancer, it is not splashed all over the news, and not many people know just how serious it is. It helped me especially to see that there were other people of similar ages confronting this disease.

I realised that I may too have some things to say that might help people on a similar journey to me. And so I contemplated writing a blog – a very un-Irish thing to do.

The famous British wartime maxim reads “Keep Calm and Carry On.” If there were an Irish version of this, it would surely read, “Keep Calm and Don’t Tell Anyone About It.” But what might a good-ole’ American version state? “Keep Positive and Tell Everything”? I think it is time to take a feather out of that American hat.

I don’t know if anyone will read this blog, if it will be well-written, or if I will even have the motivation to write in it as much as I would like to, but I hope it will be informative or helpful in some way. It might help keep some of my friends updated, and it could be a good way to vent some of my own feelings. So here I will begin my blog, on “Day 68” of treatment. I’m not going to try to fit the whole story into one post, but I’ll do my best to give as good a backdrop to my current situation as I can.

In August of this year, I was diagnosed with metastatic melanoma of the liver and spine. I have a few “hot spots” in my liver, and one in my spine. This was a pretty serious diagnosis for a 26 year old.

As I wrote in my “About” section, I had been diagnosed with ocular melanoma in December 2006, but within about a year I was free of melanoma and went back to living my life. At that time my doctor had told me that my chances of getting liver cancer in the next ten years were 50:50. I looked at this fact as the sort of thing I would deal with when it came to it if I had to, so I never researched what it would mean if I came out on the wrong side of that fence.

All that changed when my oncologist told me in August that I was indeed on the more unfortunate side of that equation.

My tips for dealing with a diagnosis like this:

1. Do not look up your diagnosis online blindly, only do so when you have already been given some valid and appropriate information from your doctor. I made this mistake. Looking up “metastatic malignant melanoma” and “liver” throws up a myriad of horrific web pages where they tell you have three to six months to live. I was terrified. One website stated, “Don’t worry, you don’t have to go home and die like your doctor told you.” These are not the types of things you need to be hearing when you have just been given a shocking diagnosis. This is also not the sort of thing your friends (who may not know any better) need to be reading, so tell them not to. Much of what is online is outdated and the developments in melanoma treatment options within the past ten years have proven to be very exciting. I would only advise beginning to look online once you know more about your treatment options and only after your doctor has fully explained your diagnosis, options, and prognosis. Only then will you have enough knowledge to know which sites are reputable and which you should not take any notice.

2. Make a decision from the start to stay positive. When it seemed that my doctors were not happy with the results of my yearly scans in August this year, I got some excellent advice from my brother. He said to me, “You know Aoife, you’re going to have to make a decision now to stay positive. These results may not be good, you may be facing some difficult times ahead, and you may even have to get some treatment. The thing you need to do now is focus on staying positive. That’s the most important thing.” I cannot stress this point more. I believe that staying positive is a decision. It’s the decision that says, “I’m not going to feel sorry for myself, I’m going to fight this thing, and I’m going to stay positive as much as I can while I do it.” The power of positivity is great, and once you make this decision, it is possible to keep on being positive throughout. There is no point in feeling sorry for yourself – it’s not going to get you anywhere. You cannot change anything at this point, so you may as well get through it with a smile on your face and a happy thought in your head.

3. Make a plan. You might have to take some time off work while you have your treatment, and you may be spending a lot more time at home than you would normally. Try to make a positive plan out of this time, and think of the things that you dreamily envisaged doing when you were writing that difficult report, or that time you were stuck on the bus wishing you could be somewhere else. Take this time to plan a few things that perhaps you didn’t have the time to do before. Yes you may be quite ill, but right now you have the opportunity to do some of those things you always wished you had the time to do. Start practicing the guitar, get out for that walk, join the gym. Even if you may not be able to do these things the whole time, being able to say to your friends, “No it’s quite good actually, because I’m going to have the time to finally learn to bake,” can be very empowering. This is your time to look after yourself – to do what you want to do, to see family and friends when perhaps you were too busy before, or to learn something new. Try to recognize that silver lining.

And so I made my decision to be positive. I got excited about finally getting back to piano and guitar. I had just passed my driving test but was still a pretty nervous driver, so I decided to work really hard on my driving. My nurse called me up. She answered all my questions and arranged my first treatment appointment. She told me that she knew I was a cheery person who didn’t seem to let things get me down, but she wondered if I really was okay. I assured her that for the moment, I was fine, I had a brilliant support network of friends and family, and I was dealing with it well.

She said, “Okay, this is it! Are you ready?” I was.

I started IPI, or Ipilimumab (Yervoy) on the 5^th November and I have now had three treatments. I had hoped I would begin this blog by saying how well I am doing on the drug, but unfortunately I am writing it from a hospital bed. However, I believe this to be a good thing.

More to come in a few days…

As a footnote, I want to draw the attention of anyone who is interested to three of my favourite melanoma bloggers who inspired me to write this blog:

http://rickvscancer.com/

http://adventurewithmelanoma.blogspot.ie/

http://melanomafighter.blogspot.ie/