I'm not proud to admit that for my wife and children, at times it has been like living with a time bomb. 99% of the time, I think I have dealt with things pretty well, but 1% of the time, I've not. This has tended to be in the periods between diagnostic procedures and diagnosis. This window of uncertainty is the most difficult time.
Over the years, I've developed different mechanisms for coping. I thought it was high time I shared these.
1. Get some good books/playlists/crosswords etc. You will spend a lot of time waiting around. If you have nothing to do, you will worry. If you've got something to keep yourself amused, it will help.
2. Give yourself something positive to look forward to. This can be big things like booking a holiday when you are in a position to go away (you can't take your cash with you, so enjoy it). This can be small things like having a fry up breakfast after an early morning MRI scan etc. if you tell yourself that you will have a treat after whaetever it is has been done, it gives you something positive to focus on.
3. Trust your doctors, but not NHS bureacracy. It is really important to develop a relationship with your consultants, so that there is a degree of trust. I have had brilliant treatments from the clinical staff. They are the people I speak to and they want to fix me. However, the NHS bureacracy that you have to deal with is frustration embodied. I am awaiting a PET test currently and the bureaucracy has completely screwed this up. I should have had it by now, and they cocked the order up completely. You have to stay on top of these things. If you don't get appointments, chase them up. It is one of the worst aspects of the NHS. The people who move paper around don't know you and don't seem to care. Try not to get upset by this and don't take it personally.
4. Alcohol is not the solution, but.... There are times when it does all get a bit much. Yesterday was one such day for me. The sheer frustration of being mucked about over a test that will determine your treatment options and possibly tell you whether your disease is life limiting or not is something that I found rather difficult to come with. I don't drink on three days of the week and I'd designated yesterday a non drining day, but I simply cracked. I shared a bottle of wine with a mate I was visiting and another bottle with my missus. It certainly helped me. Hitting the bottle is a bad solution, I will have 4 non drinking days next week to compensate. But if it gets a bit too much, don't beat yourself up if you have one too many.
5. Green tea will not cure you, but that isn't the point. When I got my diagnosis, I bought all the self help and diet books. I changed my diet, I started to drink Green tea, stopped eating dairy etc. Yet here I am. Now, I guess that the fact that it's taken eleven years to get hear may mean that it has helped. I don't know, but there are two things I know beyond question. Firstly it did not cure me. Secondly, it made me feel as if I was taking positive action to help myself. This is perhaps as important in some ways.
6. Take someone with you to key meetings. You will need support and a different perspective. Most of all though, you need support.
7. Talk to other people in the same position. Anyone who has had or is going through a cancer expereince will get it. Sadly, people who are not on the journey, don't really get it, no matter how well intentioned. Whether this is formally through support groups, or informally through chats with friends, it will help.
8. Losing the plot is nothing to be ashamed of. Sometimes, it all gets too much. Sometimes you lose it completely. Sometimes you want to scream, lash out, are horrible. Then after you get your act together you feel awful. If you have a meltdown, it doesn't make you a bad person. It makes you human. If you've been horrible, apologise, explain, move on. If you feel inadequate and feel you aren't coping, seek support. Don't be ashamed. It's a horrible experience and sometimes the light at the end of the tunnel hasn't emerged. It is not weakness to get overwhelmed. Accept that you will have such times.
9. If people are driving you mad, it is because they care. It can get too much telling family, friends, workmates etc the same thing. I have moment's when I feel like saying "F, off, I don't want to talk to you about this right now, you are not helping". Sometimes we let that slip out. Sometimes we just bottle it up. Remember when people ask, it's because they care. The number of times I've told people I'm fine and great when I feel like my head will explode with stress is to many to count over the last few years. But people do care. We don't always want to share our feelings, but it is positive that people want us to get through.
10. And finally. Face your fears. Do the things you need to do. Get the will sorted, get the lasting power of attourney in place, get a living will in place. Do this as soon as possible, because the longer you leave it, the harder it becomes. Set up a 'Dead file', that lists all your insurance policies, bank accounts, passwords, etc. Do it on paper, not on line (too risky), have it under lock and key, but make sure people you trust know where it is. Once it's done, its done and people won't be asking you about such things when you really are in no mood or position to tell them,
Some of us come out of this journey scarred and battered, but stronger. Some don't. I am still very positive, my prognosis looks pretty good, but who knows what the journey has on its path. If you've read this and it has helped, then pass it on. We are stronger together. Never be scared to hold someone's hand when you are scared.
And I will leave you with a song I wrote to explain my darker moments. The False Dots performed this at the Mill Hill Music Festival last year. Incidentally, the Festival starts next Saturday, click here for the FULL PROGRAMME. Music will get you through just about anything, so why not come along and have some fun!
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