Millions have been diagnosed with cancer, many of those millions have died from the disease, and yet in this world of self-centred daily existence we call modern-society, those who it does not affect usually turn a blind eye. What doesn’t affect you directly is often of no consequence and although you may feel some form of mild-compassion for those poor sufferers, hey, what’s it got to do with you? Right?

And now WE join the statistics! A loved one has become a victim and has been diagnosed with the severe onset of lung cancer. Our world has immediately collapsed. The tears flow, the daily reality becomes a roller-coaster of unknowns and raw emotions and nothing seems to matter any more. Everyone offers help and yet what can anyone really do? You find yourself caught in a world where everything is blurred, nothing makes sense and your brain refuses to operate normally. Music brings tears, a photo makes you smile and then grow sad, and yet every fleeting moment you have with this person is the most precious part of life you have ever known.

I am not the victim, it is one whom I love with all my heart who has been given the terrible news only this past week, and yet we are both in so much pain.

The appointments have been made and the tests will soon begin. We are not religious. We are looking at our future in terms of practicalities and with very sure realism.

This is not a call for sympathy – indeed is NOT what we want at all! It is simply a journal of our feelings and a log of the reality that faces us every day from this point.

Update: Friday 4th April 2008

First visit to lung cancer unit at hospital and we were given lots of information as to what may happen, the different possibilities [depending on the type of cancer cells] and a layout of where to from this point.

Blood test taken and a lung function test [blowing into a machine to measure breathing capability].

Next Tuesday [8th April 2008], it’s back into hospital for a Bronchoscopy and Biopsy. Sedation will occur so that the doctor’s can have a good look at the lungs without causing any pain and a small biopsy will also be removed. This will be significant as it will give us a our first real knowledge of exactly what is happening in the lungs. The results can take up to 5 days.

The following Tuesday [15th April 2008] it is back into hospital again for a CT Scan. This is painless and involves the whole body being sliced into sections by a camera so that it is possible to see any other problems in the body that may be related to the cancer. It involves laying on a moving table [keeping very still] as the patient slides through a tunnel of machinery. Much like is seen on medical TV programs such as House.

The big day for us is Friday 18th April 2008, as this will be when we sit down with the doctor and find out exactly what is happening. On the proceeding Thursday all the doctors and nurses involved with testing will sit down at a meeting to discuss the whole issue and alanalyse the test results. It brings together all the relevant facts and will be a time when the lung cancer team decide on the next course of action. We are somewhat apprehensive about this but we need to know. It could be terrible news or they may give us hope.

Update: Friday 4th April 2008

Went in for bronchoscopy and biopsy today. Scared as hell and worried on what they may find. All over in one morning but Anja is seriously worn out and has slept most of the day since. The nurses told us they took extra samples of blood and tissue but an explaination as to why was not given. Now we wait till next Tuesday for the CT Scan which should be painless.

Right now, with my wife’s length of time left on this planet very uncertain [but ultimately very brief], we have both discussed the whole package that dying brings – the pain beforehand, our quality of life, and the moment of death itself. As mentioned before, we are realists and we understand why her death is not so far away, but as much as we are both terrified of the prospect and spend our days on a bizarre rollercoaster of emotions, the practicalities and logics still keep us focussed. Yes, we do realise that what we are experiencing is not a new phenomenon, it happens to millions every year, and yet for us it is all new and all very much ‘in our face’ at all times.

To be truthful, I could write this post a hundred times a day and still come up with different perspectives and feelings nearly every time. Only moments ago, as I read through the last interviews of those who have already passed away, it jolted my senses and threw the floodgates of tears wide open, but now, I am in control again and can smile as I look at my wife, knowing we still have some time left. My wife is scared and very afraid of what the coming months hold. Scared of the prospect of the pain, the burden she feels she will put on those she loves, and scared of the unknown ahead.

And everyone who knows us and who knows Anja, have offered their sincere feelings of sorrow and generous offers of help, but in the end it all seems so meaningless and futile. Of course, we know the doctors and nursing staff will do their best to make this time as painless and bearable as possible and we will remain positive until the end. But the end will come all too soon. We both know this and accept it. Just how we will cope with it is uncertain, as we believe we need to experience this for ourselves to truly know how it feels. We also know though, that when the time comes, no amount of time or talk will prepare us enough.

And how can we describe how we really feel during all of this? Fine one minute and in tears the next. I start to say something and then realise that it no longer applies. We were making plans to move to Edinburgh just before this news fell upon us and now it is a lost dream. Even the mention of Scotland [a place we both love and adore] is almost too much to bear. Every piece of music evokes feelings and sadness. And on the other side of the coin, I watch Anja as she smiles and laughs and tells me she will fight the Reaper when he knocks, and I am just so thankful we still have this precious time together.

And as we both worry about the inevitable decline of health which accompanies cancer, and the rough road ahead that this will bring, I openly admit I am human and I think of myself too. Apart from the fact that any sadness and pain Anja feels, I feel as well, I also wonder what will become of me. The truth – I have no will to live when Anja has gone. Life will have no meaning to me anymore. We share everything we do. We are the closest of friends and share intimacy as only people who are truly in love ever do. I honestly see no point in my life ahead, so why live? Futility has never been one of my pursuits in life before, so why start now?

Conversely, I sit here and think I should be more positive. Perhaps I should take some videos and photos of Anja now while she is still in good spirits and whilst we still can laugh together. I know I will regret if I don’t, but is feels almost morbid to think this way.

An erratic post that does not make much sense? And yet, it is a true journal of where we are right now. Nothing is making much sense at the moment so why kid ourselves that reality is any different than it really is…

Note: The following comments were writen on James’ blog and copied here

Rayne said:

I am searching for the right words to say. “I’m sorry” seems so lame and doesn’t in any cover what you are going through. It also doesn’t help.
I wish it did.

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James said:

This whole thing has shown us a lot about people in general and how some people just cannot cope with the prospect of death. Some very close friends have not been in touch at all and we think it is because they do not know what to say. They cannot handle talking to us perhaps because of fear of saying the wrong thing or just sitting there saying nothing at all.

In the end though, I believe they will regret not making that step and getting in touch. I tell Anja my feelings and we share so much – every moment that we can. It helps to talk and bring things out in the open.

And thank you for your words Rayne. Saying sorry is not lame – it is a gesture of your kindness. To say nothing hurts much more.

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Rayne said:

When I was first diagnosed with my own health issue quite a few friends pulled away from me. When I approached them and asked them why they no longer called or visited they said they couldn’t handle it. At first I was so angry. I was the one with the illness, how could they be the ones not able to handle it? As time has passed I have learned that anger is a waste of precious time and really, what could they do for me? In a way, having my world grow a little smaller is easier to cope with. I, fortunately, have a fairly decent amount of time to work and in the beginning I worried about wasting time. Now, I realize that death isn’t about me, it’s about the ones I’ll leave behind and the best thing I can do is listen, and talk, and give what I can.
I think you are doing the right thing with Anja, talking, sharing, listening, building up a store house of memories.
I think you are right about your friends, too, I do believe they will have regret and maybe shame.

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Anja said:

It is hard to accept that you going to die in the first place. But it is a lot harder for those who have to deal and live with it. When the reaper comes to get me it is over. There is no pain, no suffering and no worries. For our children family and friends they have to deal with it. They have to come to grips and continue with all day life. And that is so hard to have to live without someone you love. I just want to fight the cancer as hard as I can for James and the children.

With a PET scan you first have an injection of a very small amount of a radioactive drug (tracer). The amount of radiation is very small – no more than you have during a normal X-ray. It only stays in the body for a few hours. Depending on which drug you have, the radioactive drug will travel to particular parts of your body. The most common drug is fluorine 18, also known as FDG-18. This is a radioactive version of glucose. When FDG-18 is injected into your body it travels to places where glucose is used for energy. It shows up cancers because they use glucose in a different way from normal tissue. And it will show up changes in tissues that use glucose as their main source of energy for example, the brain. [via]

Unfortunately, this scan was held back for a week, due to some clerical/bookings misunderstandings, but Anja was able to have the PET scan the following week. Another period of apprehension followed as we waited to see the doctor concerning the results of the scan and to be told what treatment would now be able to commence. During this time, Anja has been very weak and having continual problems with her breathing. In her own words, she feels like she has ‘moved her life into slow motion‘ as she can no longer hurry with even the simplest of tasks. Walk slowly, move slowly, breathe slowly and keep calm are all now a part of her daily life. If not, her breathing becomes even more difficult and this can bring on serious periods of coughing. Coughing to the extent that she is gasping for air and almost vomiting in the process. A two-week prescription of a steroid tablet has also helped to control the symptoms, but this cannot be prescribed for too long.

The time to meet with the doctor again finally arrived but again, more news to rock our world. The PET scan gave indications that the cancer may have now spread to Anja’s liver. We sat there in front of the doctor, stunned, as he told us that only a further scan, an MRI, would be able to determine if this was indeed the case. Until the doctor and the cancer team are 100% sure of what they are dealing with, there can be no treatment. We fully apppreciate all that the doctors and the cancer team are doing, and as much as another wait is prevalent as the scan is done – all frustrating and highly stressful – we understand that there is no other choice.

In between the hospital visits and the waiting, life goes on. I am fortunate in that I am able to work from home for the moment and this means I can take care of Anja, who finds it very difficult to get around the house. We have moved our furniture and made lots of changes within the house, which basically means the bedroom has become our little cube of space for 90% of the time. I sit and write this here now as Anja lays in bed beside me. Both of our computers, our TV and other bits and pieces from around the house are now located here. The bathroom is also on this floor, which means Anja does not have to climb up and down stairs. I have taken on all the domestic chores and luckily, my experience as a chef, means we do not go hungry. I probably do not hang the washing as neatly as I should, but hey, it dries, it gets ironed, it gets put away.

Another setback two days ago as Anja had a really serious coughing fit and could not stop for some time. She manged to get to the bathroom and I was able to help her sit on the toilet. You see, as gross as this may seem, when you cough violently like this, you have no control over your other body functions and as Anja so eloquently puts it herself ‘F$%#, I think I’ve pissed myself’. So sitting on the toilet during coughing bouts is the best place to be!

This coughing fit was the worst though. And the inevitable with so much violence being placed on the lungs – blood too. And not just a little bit of blood, but lots and lots. Deep red, clotted and obviously not normal. As much as I hate to watch this happening, I have to in order to be able to report all of this to the doctors when asked. ‘No, not just pink mucus, but deep red clotted blood’. ‘How much? At least half a cup but then it is hard to assess when it is coughed widely all over the bathroom’. And this kind of coughing and the onset of coughing blood, is very, very scary. Anja was coughing, crying and shaking and I was frightened from all the damage I could see this was doing to her. When it was finally over and she could crawl back into bed, she was visibly shaken and scared. A call to the all the medical support we usually refer to was pointless as it was the weekend and out of hours. Many phone calls later and we managed to convince the NHS that this was serious and we needed help. A visit from a doctor and he confirmed that Anja was in need of some hospital treatment and an ambulance was ordered. The thing is, this all takes hours. Anja had her coughing ‘episode’ at 10am and it was 6pm before she finally arrived at the hospital. It makes a for a long, stressful and emotional day. At one point she held my hand tightly and told me she felt like this was it – she was going to die – that moment!

So more tests in hospital, x-rays and blood tests mainly and after being in observation overnight, she was allowed to come home the next morning. She is very fatigued and we are both struggling with all of this. And now we wait for the next scan and more news…

Note: The following comments were writen on James’ blog and copied here

Rayne said:

This must be so horribly, horribly scary for the both of you. I am so sorry that you have to go through with this. I really hope the doctors speed things up so they can give her some relief.

——————–

Jackie said:

Dear James and Anja

I seem to have lost touch with you both over the last year or so. You moved domains and I didn’t realise, it’s only your twitter request James that led me back here.

And then I see this terrible news that Anja has cancer. I’m so very very sorry to hear that, I can’t imagine what you both must be going through. I’ve come to know a tiny piece of you both over the years through your blogging and emails etc. and realise the rarity of the love you share. This must be so devastating for you both. It’s hard to express anything adequately at times like this, but my heart goes out to you, it truly does.

If ever you need to talk, rant, rave or whatever, you have my email. Please do use it if either of you feel the need. Not sure what good I can do, but if I can I’m more than willing.

Words…they do seem ridiculous right now, but I hope I’ve expressed myself without being too clumsy or insensitive.

——————–

James said:

Hi Jackie,

‘If ever you need to talk, rant, rave or whatever…’
I guess the entries on this site about Anja’s cancer, help me a bit. I was reluctant at first to share the details, but now I view it as a journal and hope that I can look back at it in the future and cope with reading it again.

Your words do have meaning and I appreciate them greatly. Being a self-confessed hermit for 99% of my life, now is probably the first time ever, that I am finding I need to talk with others. Keeping it all inside simply hurts too much.

Anja and I know the reality of what lays ahead – our aim at this point is to enjoy every single moment.

It’s weird too, but I am finding the friendship of those online is, in many ways, ’stronger’ than those we know in our ‘real’ life. It seems that many people do not know how to cope with news like this, so they simply keep away. I can understand it, but wish this was not so..

So you, Rayne, and everyone else who has been in touch with me via emails, chat, and however else we have communicated, need to know that I really appreciate your willingness to say something – ‘anything’. It does help us to cope!

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Jackie said:

Hi James

I’m glad your writing helps a little. As a reader I have to say it’s a privilege to be given a window into these difficult times.

People really don’t know how to deal with serious illness, so I’m not surprised to hear the reaction of some of your friends. It’s daft really, illness and death happens to a lot of people every single day yet it’s still a subject that many back away from and would rather bury away somewhere.

Anyway, here’s wishing you and Anja many more moments of joy in amongst the sadness! I’ll be thinking of you both.

This assumption, however, is wrong.

It now seems that we have only a few friends. A handful of people have stoood out heads and shoulders above the rest as true friends, because they have shown they really care about us. They phone and email every day, they offer their 24 hour assistance and they are ‘here’ for us whenever we need them. These friends have helped us cope with this whole crisis and they continue to do so, every single day. They offer support to us not only in the form of words, but also with actions and support that really does make a difference. They offer to do our shopping, our cleaning, our ironing and whatever else we feel we need. One of them is even going so far as to help in chasing up the funeral requirements, because I am finding this particular aspect very hard to deal with, and so they jumped in to help. And they are doing this on top of their own, hectic lives and with no ulterior motive whatsoever. They do it , they tell us, because that is what friends are for, to be there when it really counts. These people bring tears to our eyes and make us smile in the midst of all this pain we feel ourselves going through day after day.

And people online, some who we do not even really know that well, send us emails and open their hearts to let us know they care. One of our closest friends online is even going to visit us from another country. When I asked her why is she coming to England – a holiday or business trip – she replied, ‘because I want to be there for you guys’. This is true friendship. This is more than words and shallow sympathy. It is what real friends do for one another.

But for many of our so called friends, this has been a time when they have chosen to stay away from us and not make that phone call, not get in touch, not even send an email. A part of who we are does not mind this and even understands it. We realise it is difficult to know what to say to people when really what can they say? But, we also believe that when the going gets tough, sometimes in life you just have to go that little bit further, no matter how difficult it may be. You need to make an effort and step out of your comfort zone. And then we have a few of these so called friends who do nothing more than act as spokesperson for the wider fringe of friends and in doing so, they make out that they are in our inner circle of friends and they are really helping. In reality, they are using this situation to be seen as the ‘good’ person, the one who is helping the most, the shining light! Truth be told, they are the worst of the lot, even worse than those who do not get in touch at all.

And how will treat these so called ‘friends’ when, inevitably, I run into them at the shops, on the street or by chance? Well, to be honest, and with how I am feeling right this minute, I have to say that I think I will be blunt, brutally honest and possibly even very negative. I am not one for confrontations, but I am also no hyprocrit. Why make out that I am their friend when I actually have ill-feeling towards them? Perhaps my body language and my lack of response to them will be enough to show them they no longer have a place in my life, but for one of two of them, I think it will be very hard for me to not take that one step further, open my mouth and give them a true account of what I honestly think of them and their lack of friendship when it mattered most.

Anja is not far from from leaving this world forever. She is a wonderful person, and even now in hospital she is forever ending going out of her way to help others. She is terribly sick, she is in pain, she is scared, she is terrified of what lays ahead and yet, even in this extreme time, she still gets herself out of her hospital bed and goes to help others in her own ward who cannot reach that item, who need hug, who need help, who need a friend. She has a sore face from all of her own tears, but this does not stop her from supporting those around her. She makes the nurses cry because she is so positive about the whole situation and she laughs in the face of death. And all of this within her and not a religious thought in her soul.

Anja is more than just my wife. She is my closest and best friend. And I am hers. Why? Yes, because we are in love, but more than that, because we both know we can count on each other, no matter what the circumstances.

To those people who we know online and who we class as our friends [you know who you are] thank you from the bottom of our hearts for your support and your willingness to take that extra step, write that supporting email and in whatever way – let us know that you care! To us, you symbolise the meaning of friendship and show us that distances and differences in world times etc, are no barrier to showing how easy it is for friends to be ‘friends’ in the true sense of the word.

Note: The following comments were writen on James’ blog and copied here

Rayne said:

I know how much this hurts. When I was diagnosed people stopped calling me or coming over to visit. I asked a few of them why and they told me they coudn’t handle it. Others said they did not want to ‘invest their emotions.” What ever their reasons, it still didn’t feel good. At least they were honest.
I am sorry you are having to deal with this. But, I am so glad that there are those that are actually being there for you and you are Anja are not alone.
She sounds like an absoute angel here on earth and with her passing we will all be poorer because of it.
My thoughts are with you.

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Kathie said:

It is so often the case. Friends and family will bow out of the picture, some quickly, some when it really gets difficult. Some will try to come back as if nothing happened; others will, out of shame, never return. Those with depth will stay with you; sometimes you will even crave a little space from them. What I learned was how to be a better friend.

You do not know me; we met when you helped me with a technical problem; however, my thoughts and energy are with you. It is a horrible time, but savor every minute. I honestly wish there was something I could do.

——————–

Sue said:

Your post is so touching. Although I am not *a friend*, I once again send both you and Anja strength.

Sterkte.

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Preeti said:

Dear James,

It was the search for a solution to install wordpress that brought me to your site. But I must say, more than the solution I sought it was the pain you and Anja are currently going through that touched me the most.

Her courage and kindness towards others that too in times when she herself needs it the most make her a special gift from God.

I wish you both strength and courage in these trying times.

Regards,
Preeti

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James said:

Thank you for your comments. Again, all of you highlight that friendship and support comes in many different forms and from many different sources.

Sue thinks she is not a friend [ just so you know - you are wrong Sue:) ]

And even though none of us have ever met and may not see ourselves as ‘friends’ per se, we are very touched by your kind words and feel you close to our hearts.

Friendship always has a beginning somewhere…

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Anja said:

James, my wonderful husband without you I would be totally lost.

I can say I have the perfect husband, lover, soulmate and a friend. He is everything you can imagine in a man. When I look at him I can’t keep my eyes dry. I just cry because I love him so much.
We spend every second with each other and we do everything together. We do not have rules or household tasks or the ‘him and her’ thing. We just do what we think needs to be done and that is that. The natural way of living together in a peaceful and balanced way. We discuss all things that are important and together we make decisions if needed. Never ever did we argue about things ever…

James and I are like one person equal and considered, thinking beyond the thoughts. Erratic as we can be, we just say let’s go for a drive without knowing where we go but just get things we want like coffee for on the road and we are off to netherl and. The Dales or Lakes, does not matter. We enjoy what we do. We enjoy just being together and we do not have to speak or make conversations we just click. We are just so in love. My life was hard though and I always thought by the time I get happy I die.. And so I am.. But I can say that I die happy with all my heart because of my loving James….

I love you James and I never leave you ever – I stay with you beyond.

——————–

Sue said:

Anja,

your post leaves me weeping, and wondering how life can be so cruel. I hope- indeed- that you shall always be with James.

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!

Note: The following comments were written on James’ blog and copied here

Kathie said:

Your posting does not sound like a complaint, nor does it sound selfish. It is honest. It is real. It is a terrible situation…for both of you.She certainly does not deserve this pain! It does not diminish your feelings for her by saying how difficult it is. I can honestly tell you, because I have been there, that you will look back on this and feel good that you gave your whole self to her. She will leave with you in her heart. I am with Anja with it comes to religion, but I do know I still feel the people I have loved around me. You will too. Both of you will get though this.

I don’t really know you, but in my own way I send my energy to you in thought.

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Jamessaid:

Hi Kathie,

Thank you for your words. You don’t really know us and yet you say the words others cannot/ will not speak.

Right now, this moment, all Anja and I have are each other. The sad reality is that sometimes it all gets too hard to deal with and we can easily ’snap’. Frustration, anger, despair and sheer inability to cope, all move in at different times and we feel our souls being eaten away.

If both of us could lay side by side now and take the ‘blue’ pill, and close our eyes never to wake again, we would not hesitate in this decision for too long.

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Sue said:

what a powerful ode to love in a time of despair.

I wish both of you strength .

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Anne said:

[...] I’ve tormented for days, not wishing to intrude. In the end, beauty of the human spirit struck me as too rare a gift to ignore. Vincent Van Gogh said there is nothing more artistic than to love others. There is nothing more beautiful as well. Open your eyes and hearts to beauty, love, and dignity. James and Anja. [...]

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Jackie said:

I’m so very sorry you’re both having to go through this, that daily life is such a struggle. I can’t begin to imagine what this must be like, but I’m sure the reactions and emotions you’re both having are perfectly normal in the circumstances. And even if they’re not, what does it matter? This is your reality and your post is very sincere.

I’m sorry this comment is so late. It’s now 12 days after this post was made, I assume that Anja’s condition is constantly deteriorating. I hope life is at least partly bearable for you both, and that even through this hell there are some small moments that bring you joy. You’re so very right when you say that Anja doesn’t deserve this pain James – life can be such a torment.

The thing is, even before all this came upon us, we both knew exactly how we felt about death and all it entails. The whole ‘funeral thing’ has been an issue with which we see absolutely no point. Consequently, there has been a very strong element of truth in our jokes when we say to each other ‘When I die, just throw me in the wheelie bin – and remember to close the lid.’ I mean, isn’t the way in which we all choose to be ‘disposed’, totally up to each individual? Sure, we need a clean, sanitary method and we are not against other people doing whatever they want in terms of burials and cremations. So yes, we do respect other people’s ideas and beliefs. But for us, the cheapest and quickest method, with the least pain for the person left behind, has always been our perspective.

So we have already arranged for the manner in which Anja’s body will be ‘disposed’, once she leaves this world in mind and soul and nothing but her body remains. A simple ‘cheap’ cremation for those you who really want to know, with no trimmings, no extras and no fuss. This may sound callous of me, but believe me when I tell you, this is what we have both agreed on long ago and is not the result of either of us being cheapskates.

So what do we laugh at? Well, death itself in many different ways, but more than that, the unknown elements that death brings to us all. As already mentioned, we are not spiritual or religious people and we have no idea what lies before us. Perhaps your beliefs allow for a sense of security or comfort in what death brings, but that is not the case for us. So, we make jokes about the funeral ‘farce’, the expectations of society at such a ‘serious and revered’ time, and we even joke about what happens to your body as it decomposes and rots away. Sounds morbid I guess, but when you are at this point in your life, you see life differently.

For instance, recently we had a discussion about what Anja would like to be wearing when she was cremated and being the person she is, I knew the answer would not be the norm. In fact, I was already thinking along the same lines when she said she started to tell me that she would like to be cremated in the costume she bought a little while back. You see, Anja went to this fancy dress party dressed up as The Corpse Bride, complete with the black and white roses, the white face, and looking pretty much like the female persona of death itself. However, what makes this even more bizarre [and really makes Anja laugh openly about it] is the fact that even though you know me as James [as does everyone in real life too], my birth name is Tim – surname Burton. Yep that’s right – Anja wants to do it all properly and be cremated as Tim Burton’s Corpse Bride. Considering we have only been married for approximately 18 months, she says this is the obvious choice. And who am I to argue? Our humour has always been somewhat ‘black’, so why change it now.

And Anja makes jokes about her ashes. Her favourite hobby of late has been to ask everybody to have a barbeque in her honour when she is gone. That’s right – a proper barbeque with meat and salads and so on – and she whispers out aloud to everyone within earshot, ‘just make sure you all throw a few of my ashes around the place too, so you can feel me with you…’

Putting all of this into written words gives the whole laughter thing we experience, a different taint, but you know, with death actually staring us in the face and with both of us absolutely out of our minds with the stress, anxiety and uncertainty that awaits us in the very near future, well then, laughter, humour [even if bizarre and surreal to the extreme] is really not as strange it may at first appear.

Note: The following comments were written on James’ blog and copied here

Jackie said:

I don’t think you’re strange (but then I can be perceived as a little strange by others).
Laughter is the best medicine, and I’d hope I’d be able to take plenty of it in similar circumstances. I know exactly what you mean about funerals, I hope mine isn’t a somber depressing affair, I’d hate that. Nothing wrong with displaying emotion (it’s healthy!) but a room full of long faces isn’t my idea of a great funeral. I’d rather my actual funeral was a simple affair with a great big party afterwards. Funerals should be a celebration of life as well as marking the passing of a loved one I feel.

Good to see you’ve both somehow managed to retain your sense of humour, I’m sure it’ll serve you well.

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Anne said:

Seems an appropriate way to handle things to me, James. My own plans are similar. Mark knows to have a no-frills cremation and urn, and no service after. However, he knows i’m to be taken on occasional outings, rides, to dinner, movies, family events, like that, so he’ll have to get a nice manbag to hold my remains. There’s no reason i should have to be bored in the afterlife.

Love to you both.

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Thaleia said:

It’s nice to see you both still have the courage to laugh and joke… you even made me smile too
It is indeed all up to yourselves how you plan on being ‘disposed’ off… you have to do what you want and not do something to please the audience…

Hugs
Thaleia

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James said:

And then there are days like today where I feel nothing but despair and I give up from trying to hold back the tears.

I doubt I could smile today for anyone…

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Jackie said:

Sorry you’re having a rough day James. I expect you’re having a lot of those lately. I have no words of wisdom, wish I did but there’s hardly anything I could say to make either of you feel better.

Hardly surprising you’re finding it impossible to smile, and you shouldn’t be trying to hold back the tears anyway. Let them flow…it’s natures way of providing a release, even if it only takes the pressure off for a few minutes or hours. But then I’m sure you already know that.

Thinking of you both…

Maar ja…pijnstillers tijdens het eten.. de co-codemol om de pijn te underdrukken. Soms moet ik zwaardere pijn stillers maar ik weet dat dat snel helpt dus als ik nodig heb is het er….dat is morphine fix,…Sjees voor mij de eerste keer die verdovende troep je ligt in sprookjes land dan.

Mijn hart raast op dit moment als of het een marahaton gelopen heeft helemaal hyper.. Als ik nu ga liggen ben ik weer slapen en ik wil niet… nog niet hehee…