Charting the way ahead

What the last weeks have shown me is that fear is simply unbearable and I must find ways to get it under control. It achieves nothing. It spoils the now and it makes it almost impossible to think straight. The only way to deal with the fear is to face it down. By that I mean - work out what is it that I am actually afraid of and tackle it one by one. Even articulating to myself what those fears are is terrifying. But as I work through what they are it feels more like grabbing a nettle to avoid the sting. 

Accepting that death is inevitable sounds rather obvious given my situation but this has been what the last few weeks have been about emotionally. Of course death is inevitable for all of us and who knows when that day will come - but I think I had imagined I had years and now realise that, while I will fight tooth and nail for years that may not be possible. My breast care nurse recently discussed my referral to hospice care. A precaution and simply good to know where they are and start building a relationship with them. My Aunt was in a lovely Hospice and her death was so dignified. But it is not really what I want to be doing at this stage in my life. I know it is sensible but I have grand ambitions and I think my struggle has been that if I contemplate the end in any detail perhaps that will jinx my attempts to outwit death. Somehow my body and mind will know my heart is not in it 100%. 

Most of my fears relate to what will be left behind and in order to take control of these fears I need to understand what troubles me the most. The children and Rupert of course. My family and my friends too but my children and husband are what hit me the hardest when I think about my fears. They range from the very practical - how will the household timetable and logistics run? I, for most of their lives, have been the organiser in the background. I may over estimate how essential I am in this role, and the children are older now and the older ones pretty much take care of most of their movements but it is all those bits in the background that make it happen. Signing the permission slip for x trip, paying the Duke of Edinburgh fee via parent pay, fixing the date for the birthday party and related logistics, knowing where things are, thinking ahead to make sure uniform is washed before the week starts again, helping make sure homework is done and not at the last minute, mediating sibling confrontations, mediating father son confrontations when they happen (I think Rupert would call that interfering :)), mediating confrontations over who is going to walk the dogs, organise what we will do in school holidays and half terms. And the list goes on. When I look at it I can see that if I took me out of the equation the world would not stop and that Rupert is perfectly able to (and frequently does) much of the above. It is just that we share it and there are always invisible tasks that one partner does that the other is barely aware of, or is very happy not to be engaged in (emptying bins, sorting out car insurance for me). The boys have already started to take on more responsibilities. This is partly through need as I am not quite the whirlwind I was and partly as we prepare them for life. Most recently we have been teaching Will how to use the washing machine independently (and that includes basic instructions about not mixing colours and whites). And so on. 

I plan to write a list of things I need to have prepared. And this includes writing a logisitics list where I download the various domestic details that I am almost certain only I know. What does the E7 error code on the washing machine mean and how do you resolve it? Where did I pack the winter hats and gloves? I also need to list all my various user names and passwords for the numerous services I use and devices I have. Net flicks, itunes, gmail, easy jet … Transferring bills that are only in my name to Rupert’s so we don’t get stuck in that rut whereby you are told they can only deal with me unless I have given them permission for Rupert to talk to them. All of this could be done by power of attorney but easier at this point to just move them earlier than later. 

After the logisitcs there are the messages and memories I leave. Who gets the chance to polish their legacy! Rather than dying old and doddery, when my kids roll their eyes frequently and say ‘just ignore her’, I intend to leave lessons for life which will take on great meaning and hopefully actually be helpful in guiding them in someway, or at least giving them comfort. I have also thought of leaving some podcasts (for want of a better way to describe them). But I first need to work out how to do this and be in the right frame of mind. I would like to write something to the so many people, family and friends, who I love and maybe leave them something that will remind them of happy times. And if that list isn’t enough I still have ambitions to type up my old diaries and even get on to writing something more substantial for the kids and Rupert. In between all of this I need to cram in lots of lovely moments doing either what I love or what I have always meant to do.

I know this may seem dramatic but I feel as if the last few weeks have been a period of transition. I am reaching some level of acceptance and realise what an amazing opportunity I have to manage my departure and in doing so hopefully make it less terrible for everyone. The grieving process for many, including myself and Rupert, began when I was diagnosed last January. I threw myself into investigating ways to cheat death. I have had a bump which has reminded me that cancer is a clever bastard and I may well not be able to do that, but I am determined as hell to carry on trying.

The sun coming out feels symbolic. It is so much easier to feel the beauty of life when the birds are tweeting, the wood pidgeon cooing, the wind blowing warm and gentle and the blossom bursting. Knowing that all of that will still exist when we are all gone. 

I have a lovely summer planned which I am determined to be able to enjoy. Part of my fear is that I may not even enjoy this if I have to change treatment again. I am not enjoying the xeloda (the chemo pill) - it makes me tired and burns the palms of my hands and feet. I am on my third two week stint now with a scan later this month to see how things are going. My bloods have been going in the right direction but I still feel my liver hard and uncomfortable so am not convinced that it is exactly dissolving the tumors - even if it manages to keep it stable for a while. So I am on the road again to investigate what other options are out there. 

I am writing this from the Hallweg Clinic near Stuttgart. It is a private oncology clinic which appears to be using a range of new approaches. I am only here for one day, for a face to face consultation. I just want to know what they would suggest if I were their patient. It may be that there is nothing else, or that I cannot access it, or that I do and it does not work, but I am determined to work out what the cutting edge centres in the world would offer. The treatments for cancer are opening up. I can’t sit and have ancient therapy when there are new, less toxic, approaches being developed. I still may miss the boat, but truly believe they are getting closer and closer to cancer being a chronic disease which they have to actively manage to stay ahead of the game. I may never get rid of it, but imagine if I could find a treatment that bought me some more time, giving time for another option to become available and so on - until (she wishes big) perhaps some of these may actually be available for patients in the UK. 

I caught a plane from Gatwick this morning, easy jet to Stuttgart. It was so straight forward and we landed 20 minutes early. I had only hand luggage and was almost first through immigration. The sun here is shining too and this area of Germany is beautiful. The Hallweg sent a car to pick me up (eye wateringly expensive but for a day trip and my first trip it is the easiest choice) and a smiley old guy was waiting for me. The first song that came on the radio was ‘Don’t worry, be happy’. I looked out the window at the sky and the occasional cloud and decided this was a sign. The words to the song are great …


"Don't Worry, Be Happy"

Here's a little song I wrote

You might want to sing it note for note

Don't worry, be happy

In every life we have some trouble

When you worry you make it double

Don't worry, be happy

…….when you worry your face will frown

And that will bring everybody down

So don't worry, be happy

Don't worry, be happy now

I am not sure I have ever been driven so fast in my life. At one point we were driving at 180 KM/H. I once thought - wouldn’t it be easier to just die in a catastrophic car crash now. Then I thought no! I am not ready - I have just spent the past few days working through what I want to get ready so that I feel more at peace with the whole situation. Another sign. I have a choice as to how I deal with this. My maternal instinct kicks in and making whatever time I have left calm and loving and happy is really important to me as are getting all the above in order. In the same breath I will equally, maternal instinct also, fight as hard as I possibly can to keep one step ahead of the cancer. To do this I need a level of acceptance, which for the moment, I think I am reaching. So planning a dignified peaceful exit while at the same time running as fast as I can to keep ahead of the game to avoid this exit completely. 

I have been continuing my meditation training using the Headspace app. Ten minutes a day, so not very impressive, but everyday so I hope I am absorbing some headspace behaviours and will automatically use them throughout the day and especially to help when the fear comes knocking. I have also finally put up the infra red sauna that I bought. It has been in boxes for about 3 weeks. Actually it is not entirely true that I put it up. I asked a friend (a new friend I have made through cancer is pants who has his own sauna at home) if he might be able to help me. It turns out he has a far infra red sauna and mine is a near infra red sauna so mine is totally different to his. It looks like a tent. It has a simple pine frame and a big canvas that goes over it and three big bulbs in a heating unit which hangs inside the tent. Not at all what I expected. So glad to have it up now as it is another approach I can use in my stay strong plan. (I have added some information about infrared saunas and their benefits below). The only place we could fit it was in Ella’s room so when she gets back from University she will find her room is now dominated by this canvas tent contraption. 

Note - Not a picture of me! And mine did not come with comfy pine floor and chair

Note - Not a picture of me! And mine did not come with comfy pine floor and chair

On the cannabis oil front, I tried to increase my dose but it just makes me so sleepy and while I am sure sleeping is very healing, when you have children and things to do it is pretty debilitating wanting to sleep all the time. So I have reduced the amount I started taking (which wasn’t that much in the first place) and am looking into a CBD only variety to take in the day and the CBD/THC mix at night. The night dose certainly makes me sleep heavily and I can feel a bit whoozy in the morning. I am not anywhere near the Rick Simpson dose and so am not technically doing the protocol properly. I am not sure whether to or not given that it will mean I will be almost unable to function for a good few weeks. I am also not too sure how powerful it is. If you search and search for success stories on the net you realise you keep coming back to the same group of people with their stories regurgitated on lots of different forum. I would love to hear from people who have used this protocol successfully because at the moment I am not sure if I should throw myself into it properly. 

Work has been a major issue. I continue to work but recognise that I simply cannot fit in what I need and want to do in the coming weeks and months and that the reality of treatment and my disease is that it is so unpredictable. If my time is limited then I have so much I need to fit in and working the amount of time I do at the moment makes it very difficult. The trains to London are so frustrating and on a bad day it can take 5 hours door to door and back - that is a lot of hours in a day and makes you exhausted. Changing my work status and pattern is really hard to contemplate as it simply adds to the wholesale life transformation this disease is instigating. Perhaps this is what I need though and through making more space in my week I can achieve those goals I have as well as being able to have the time to implement some of the lifestyle changes I need to support me - including more time for exercise. I am midst negotiations to see what balance will work. I have worked with my organisation for almost 12 years and love the people - I actually can’t imagine them or the work not being part of my day to day life. They have been incredibly supportive and I have an interim plan to continue but to not travel to London as often and to keep an eye on things so if I need to change things I can do so at any point. Of course were I to miraculously find a treatment that worked for a good period I may have a long period of stability or remission but I will never know how long such a period will be (or if and when I might get one) so I need to be flexible. 

It is Brighton Festival time. Every year I do not take advantage of living surrounded by so many cultural, musical and artistic performances and events as I find I am too busy and assume I will do it some other year. Not this time. I am planning a whole day to go around some of the open houses. My usual open house experience is randomly walking past a building and seeing an open house sign and deciding on the spot to have a quick look - rather than planning a deliberate route so that I can take advantage of many of these annual displays. 

I wrote this couple of weeks ago now - and have since changed my treatment plans having spoken to an amazing woman who helps people ‘navigate the cancer maze’. This is after someone who reads my blog from Australia contacted me after reading about my wobble - and I am incredibly grateful to her for doing so. It shows what a global world we are in - information is power and in my game you need to be queen of information and any help from all corners of the globe is so very welcome. More on this in my next post.