Please note before reading: this may sound like a letter of complaint, a long-winded whinge or perhaps even selfish of me to write. However, it is none of the above. It is simply an update on our situation and the reality of our lives after Anja being diagnosed with terminal lung cancer.

Less than 4 months ago, life felt extremely different than it does for us right now. In fact, it was only back in March over the Easter weekend, that we went up to Edinburgh and came away with a plan to start a new life there within the next 12 to 18 months. One week later that dream was shattered of course, when we were told the devastating news that Anja had lung cancer. And at the risk of sounding totally depressed, pessimistic and out of hope, I have to say in all honesty, it’s very much been a downhill trip from that point to where we are now.

Obviously, the news that Anja does not have long to live, is in itself hard to deal with, but as the last few months have passed, our daily way of life has also been shaken to the core. Life for us, is not what it once was, even just a short time earlier this year.

I have been very fortunate in that my place of employment has allowed me to work from home. This means I am here to care for Anja, able to do everything for her and can ferry her backwards and forwards to the hospital and doctor as necessary. If my employment had not allowed for me to work from home, I hate to think what life would be like for us right now. And before you think this may sound like an extended holiday, but let me assure you, it is anything but relaxing.

I do not know if this applies to every cancer patient, but Anja struggles with most of the simple daily tasks. She is on a high dosage of steroids [which act in helping to keep the inflammation to a minimum on her brain tumors] and as a result of this, she has very weak muscles and her whole body has become very ‘puffed’. Skinny for her whole life, for the very first time, Anja finds herself looking very overweight and unable to move many of her joints because of the tightness of her skin. And yes, she has added about 5 kilo to her body weight, because another side effect of the steroids is that they turn a mild sparrow such as Anja – into a ferocious, snarling wolf when eating times arrive. But it is the water retention that has caused most of this change of appearance in her body shape. She cries every time she looks in the mirror because she sees someone she does not know. It is very hard to deal with for us both. Even a simple daily task such as going to the toilet has become an event. She needs help to walk as her muscles are so weak. We now have a stool in the shower for Anja to sit on, as standing is simply too much for her. I help her wash and dry and dress. And again, she cries as a result. She is embarrassed and feels she has become too much of a burden because of this need for so much assistance in all she tries to do.

We have also changed our house dramatically. Previously, we lived downstairs and spent over 90% of our time in the living area below, but now, we live in our bedroom. I have moved the computers in and we have extra areas to cupboard food and those everyday things we need. I cook and wash and clean and cook and wash and clean day after day. It is never ending. I do all this with a smile [well, half a smile] because I do it with all my love for the woman who means so much to me. But it is extremely tiring when added to everything else that needs to be done. Anja’s day is almost like the situation when she was in hospital for a long period. She watches the clock for meal times and if it is late, it is frustrating and ruins her day. So, I wake up and make breakfast, the daily medicine/tablet ritual begins and by the time breakfast is over, it is time to clean, empty the bins, make the bed, wash Anja in the shower, do the washing [clothes/dishes], vacuum, go shopping and generally make sure that everything is done so that I can be there for Anja when she needs me at different points throughout the day. There is no time for procrastination or putting things off. To do so, only spells disaster later in the day. Each week we have doctors’ visits, nurses who come to our home, hospital appointments and then the occasional visitor who drops in as well. The house must be kept spotless because of Anja’s weak immune system and with all this that is happening, we are both emotionally drained. Crying is now a part of our daily existence. We try to remain positive and we laugh and we smile too, but the pain of the situation is very real. To hold back the tears is not a good way to live.

I am never bored. In fact, finding the time to write this update has taken me the best part of 2 weeks. I generally find that by the time I finally get to sit down and actually do something for myself on the computer, my brain cells are mashed and my mind is just not in the right frame.

Since Anja no longer is able to work, our finances have also changed dramatically, and although she is receiving some sick pay and a small amount of welfare assistance, there is a dark cloud hanging overhead as we know that bit by bit the money will stop coming in very soon. Consequently, I try and take on as much work as I can in the form of the WordPress help that I offer via this site. This involves working through the night in many instances because it is the only time when I can do the work without distraction.

And just because I am able to work from home for my real job, this does not mean I can simply ignore the ever-increasing workload that I receive via emails every day of the week. I am in charge of developing a learning gateway and this is a huge project. Much money and planning has been put in place for this venture. The past 12 months have been long and difficult as the whole staff have slowly come to grips with the ‘idea’ of this project, let alone the actual task of using such a tool. But the time has come and the rubber has hit the road. This means that as the staff begin the arduous task of using the learning gateway, every day is filled with requests for assistance by individuals, departments and the whole staff overall. It is my job to make sure that everything is running smoothly on that score, and to also keep development moving forward. Again, I am very fortunate in that I have a great set of colleagues who are able to assist in this area, but at the end of the day – the buck does stop with me. It is an enjoyable and challenging project and is exciting to be a part of, but it comes with the added stress and mental strain that any worthwhile project contains.

Our life has also changed in that we are unable to do those simple things we have always loved. Both of us love driving in the car – not just to get from A to B, but also from B to C and across to F via P, R and Z. It is Anja’s 48th birthday on the 21st July and we are desperately hoping she is still with us at this time. You see, we have these short term goals and one of them [at Anja's request] is to try and go for a long drive, with a flask of coffee and some pre-made lunch. The Yorkshire Dales and Moors have become our second home since moving here to England and there is nothing more that Anja loves than to head off early in the morning and be sitting on a hilltop, sipping coffee and feeling the cool morning air in our hair. Unfortunately, the cancer, the pain, the steroids, the other huge amounts of medication, have put an end to such simplicity. It is too much for anja to drive so far. At best, we may be able to go out for an hour and take in some of the local beauty instead.

And as a result of all of this our relationship has changed. Not because our love for one another is any less, but more because we cannot do those things a couple in love normally do. Pain has put a stop to many of Anja’s normal feelings, including those special intimate moments, and whereas we would normally run/race across a hilltop together, obviously her immobility has meant this can no longer take place. When Anja is able to walk in public, it is at a snail’s pace, with the rest of the world being the gawking, misunderstanding lot that we all are. The public do not see a cancer-ridden person in front of them as they grow impatient behind. They just throw snide remarks about her weight and puffed looks and make the whole attempt to ‘get out’ seem pointless and futile. Being the fiercely independent individual that Anja is, this is very hard for her to cope with, and means tempers flare. My attempts to calm her often falls on deaf ears and we could even go as far as argue – something I can honestly say – we have never ever done since meeting one another. And we know this is because of all this stress and worry, day after dafter day. It eats away at us both and will not let go.

The side-effects of the medicines are making Anja’s life unbearable. For instance, she has a symptom known as ‘clubbed fingers’ which basically means her finger ends have grown larger than the rest of her fingers and as a result, her fingernails grow and cut into her skin. Picture a small tear on your finger and how annoyingly painful and irritating it can be, then times this by ten. Sounds like nothing too much doesn’t it? But then consider that this is combined with extreme water retention, diarrhoea one day constipation the next, painful mouth ulcers and fungul throat infections, severe fatigue and tiredness, muscles aches and pains and a myriad of other ailments. You then get some idea of what cancer and all it’s accompaniments can do to a person. Oral morphine is part of anja’s stable intake. Without it, she would simply scream and cry all day.

Anja’s lung cancer has spread and continues to do so. The doctors’ have given up doing weekly scans because every time they do, they find more cancerous tumors.

The emotional impact this has on us both is extreme. We are both a mess to put it simply. every moment that Anja is alive, I truly treasure, but watching her suffer in this way is almost too much to bear…

How she manages to smile, laugh and still try to help others every day she is alive, makes the tears in my eyes swell up and flow without restraint. For someone with such a wonderful, positive and optimistic perspective of life, to fall victim to such a disease, certainly proves to us both, there is no such thing as a loving god overseeing our lives.

In fact, dare to mention god, religion or anything involving faith in a deity within earshot of Anja and you can expect her to sneer and growl. She does not deserve this pain!

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