The Alarm is off – it’s all relative!

Back in rainy winter Perth, we are installed at Karrinyup Waters in Gwelup, a very pleasant campsite.

Up until yesterday around midday, I was an emotional wreck, “built close to the water” as my mother would have said – a German expression, plus a sick feeling in the stomach and trouble sleeping.

But then we went to see Dr McDreamy, as Nicki calls him, or Dr Tom Van Hagen as he is more generally known. He is Roddy’s oncologist and we like him a lot. He was the keeper of the PET scan results. Sitting in the waiting room is a gloomy affair. Roddy hates being thought of as the ‘Krebsopfer’ or ‘Cancer victim’ but the waiting room is a visual reminder of what’s out there. He is the exception as he is full of big smiles for the receptionist Kathy and she drool over him too – eye roll!

Eventually Tom asked us to come in and told us that the scan was clear apart from the cancer pea that we knew about. This will be excised on Monday, taking a generous margin. He recommended referring Roddy to a radiation oncologist in order to discuss blasting the left upper arm with radiation to prevent a further recurrence. I asked him about the implications this latest development had on the immunotherapy and he said that should he restart that treatment, it would be a doublet of Keytruda with another immunotherapy drug. However, he thought that Roddy would not tolerate this so well based on the ileitis he suffered early on during Keytruda treatment. So, we will see the radiologist soon and take it from there. Another revelation was the discovery of gallstones on the scan. Tom was sure that these were the reason for the pain Roddy experienced in Kalbarri as no blood clots could be seen at all. So no pulmonary embolism or fake heart attack at all! Only a bunch of bloody gallstones! As this was the first flare up of them, though, we will leave them just now as there is enough else to get on with otherwise.

What a relief! We are actually so happy! I know it sounds weird to be happy about the situation but the big fear is always to have melanoma spread to an organ or the brain which would be truly awful so we are counting ourselves lucky.

A friend asked me yesterday how I coped with the stress that this creates. The implication was that I should seek outside help. I explained that we two talk about everything. The nitty-gritty, everything. The potential outcomes, the preparations for the future; our fears, some rational and others irrational. Talking with each other, talking with my friends and writing this blog keeps me sane. I couldn’t imagine seeking professional help as long as I have close friends and family but each to their own. Plus, I told my friend that we make love a lot and very well, too, I might add, which helps a lot. She probably thought I was being flippant but I was not. She also thought it was too much information but I don’t see a problem in talking or writing about this as a truly intimate relationship (on all levels) is what provides the mutual support I am talking about. Plus, I am German.

My mum died of cancer when I was young, so I have a built in fear of it and tend to be much more doom and gloom than Roddy who has seen many people survive cancer.

Recently, before the latest pea was spotted, I suggested to Roddy that we should make plans for the rest of our lives, not just for the next year or so but really for the rest of our lives. To estimate how long we have, which is of course bound to be a very flawed calculation, and to prioritise things. You might call it a bucket list but I don’t like this term as it sounds so commercial as in ‘doing’ a country or jumping out of an aeroplane. I mean a list of life features such as spending time with my kids and future grand children, getting a dog again some day (soon please), walking through Germany, learning skills and other languages, etc. I haven’t written my list yet but this is something we will do soon. It’s percolating.

When we first met online, we emailed each other for three months on a daily basis – later on I put all emails, together with the photos we exchanged, into a book. We met in person when Roddy flew over to Scotland for two weeks. At the end of the two weeks he suggested we should write down simultaneously what we wanted to happen, what our restrictions where, our obstacles and how we thought we would deal with those. After writing for a while, filling up two A4 pages each, we swapped the sheets and read each other’s. We had written very similar things and it was a relationship affirming thing to do, creating a deeper bond and the openness and honesty we have nurtured ever since. These sheets are also part of the book I made up and are a treasured possession.

Now it is time, I think, to do a similar exercise. Our time together is probably limited compared to many other relationships. I hope not, but realistically seen, it is. So all the more reason to think very specifically about what we want to do with that time. One day it will be up and neither of us want to be complicit in inactivity, leading ultimately to regrets. Since my mum’s death I have always thought that not a single person has ever lain on their deathbed wishing they had watched more TV, worked harder in the office or spent their time wondering, what if? Of course we all procrastinate to an extent but I think it is really valuable to stop and think, to take stock of the situation so far and to ask ourselves periodically what it is we really want to do with our lives. What’s important and what is not? And then to focus on the important, making it happen. If the situation is unsatisfactory then change it, find an alternative. There are always choices to be made. The career has never been “it” for me. It is for some but I also think a lot of people just drift into their careers and assume that that’s just the way it has to be. Some think that a certain job title, power and influence, or bank balance will make them happy. Well it doesn’t have to be like that. Of course, every one should take responsibility for their own livelihoods, making sure that they can afford a roof over their heads, but does it have to be a mansion? It is so easy to get sucked into the ‘need’ for this and the ‘need’ for that. Then again, I just bought myself a lovely practical handbag. Not buying it would not have impacted negatively on my happiness – I do spend more than Roddy on these things. We do, admittedly, spend a lot of money on plane fares but travel and seeing people at the other end are priorities for us and our everyday life is quite frugal: we hardly go out for meals or drinks and, if we do, we don’t choose expensive places. We always cook from scratch. I bake bread and cakes once or twice a week and we go for walks and cycles rather than paying for a gym membership – you get the idea.

Some years ago a friend told me I was quite superficial, things were always easy for me and that I never had any worries. I was quite annoyed about that at the time, really pissed off actually, not serene at all. We all face problems but we always choose our own reactions.

Everyone is in the same boat and this is what an illness teaches you – that all our time is limited and that we just have to accept this but that we should actively be thinking about how we want to spend it, what kind of person we want to be, always keeping in mind that it could be over tomorrow. No need to be depressed about it, just aware.

9 thoughts on “The Alarm is off – it’s all relative!

  1. Such wonderful news and I am so pleased for you both. Yes, live life while you can. In fact that was exactly what Robert told me this morning when I informed him I would put off hiking the South West Coast track in its entirety next year. You see we have already planned another expensive trip next year, so I felt it would be digging into the savings a little too much to do both. ‘Do it while you can’ he said ‘you don’t know what’s around the corner’. You are both right, and when I am no longer able to do long walks I will have a lot of wonderful memories. So for the two of you I hope you get busy creating memories to look back on later in life when you no longer have the physical ability for extreme or not so extreme adventures.


  2. Lots of what you say resonates with me. Not so much about roddy’s illness but realising what’s important in life. For me it’s always been about people and places rather than things. Not having had the silver spoon in my mouth helped me to grow up appreciating what makes me feel good and being extremely grateful to my parents for teaching me what is important. You’re right none of us know when this will be over. And I’m not being flippant but I did buy a rather full flouncy dress with poppies on it today since it made me feel good it felt like fun and will be great to dance in. I almost gave up my dancing but I gave myself a stern talking to and asked what I was gaining by sitting at home on my own on a Saturday night. No more my friends I dance now where ever and whenever I can. I’m buying more music and I sing along to it in the car because it makes me happy. You have a very deep and strong and solid relationship which must help in these dark times. I can’t bring myself to talk about making love it just makes me jealous but I intend to change that and you will get all the information you need on that front when the deed is done! Make your list laugh and love as much and as often as you can. Sending lots of love and warm hugs. Barbara x


  3. I am so happy to read your good news but also so grateful for the words you have written as I feel you are sitting on my front wall having this very meaningful and thought provoking conversation… I miss them.
    Everything you have written here highlights for me again the importance of family and friends and how grateful I am to have this support. So thank you for your inspiring thoughts and wishing you both happy hours planning all you wish to do .Take care xxx


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