I have written this just 3 weeks in to being told I have a rare eye cancer which will kill me..I have anything from a few months to hopefully 5 years or so if treatment works well. I will update the period leading up to this entry soon, but felt I wanted to try and hare a very difficult experience with you in the hope it helps. Please comment and ask any questions you may have. I will be with you along your journey if you ever need me. This has taken me a while to write. Firstly I would like to thank all those who I wrote too about writing this and their unanimously support they gave me. This is about the three weeks from getting my diagnosis confirmed as terminal and being informed that the treatment they were planning, was purely to try and give me an extra two or three years of life, over what I am facing without treatment. That is from a few months to 2-3 years with rapidly diminishing mental and physical capabilities! We were told this on Monday 27 August 2012. I returned on the Friday for my first chemo (BCNU) as a day patient. They had wanted to put a Hickman line in my jugular but could not get that done untillthe following Friday 7 September and they felt they could not wait another week before starting treatment. The chemo was un eventful but we did not get out until around 7 p.m. We had arranged to drive to our daughters home in South Cumbria (3 hour plus drive) where, over the next few days, we had arranged for all immediate family to visit on consecutive days so I could see them prior to starting this aggressive chemo etc.. Having them visitting while having this treatment would not be a good idea if I am neutropeanic. They all already new about the cancer but non were aware that it was terminal or that it could be just months. 10% of people who get this chemo / radiotherapy regime don't survive to the end of treatment (aprox 3 month)! My wife and I had been able to talk about how we were going to approach this and of course how we felt. We were of course in shock and just didn't believe it was really true, especially as I had had overcome neck and throat cancer over the last two and a half years and thought our lives were just starting to get back to relative normality. We decided that I should have a sort of script / bull it points to cover to help keep on track, especially when it gets emotional. We also agreed a little signal she would give me when she thought the time was right for me to update them. She would give me a little kiss and say she was just taking the dogs out or something. That way I knew she would not be back for about three quarters of an hour. She did not want to hear it time and time again that I was going to die etc. As it happened the family always seemed to arrive late lunch time and had a coffee cake etc. It was straight after that I told them. Boy was it hard, but the script helped especially the first couple of times. They all took it really well, no doubt putting a brave face on for my benefit. Most said that they had thought that this was going to happen, one was pleased as I might have longer than they thought! They all said that treatments are improving all the time and tried to be really positive. After the chat we always went out for dinner at one of the local pubs and the following morning they set off for home and the next small group would arrive. The only exception to this was a quick trip (1.5 hours) to my daughter and her husbands pub in Yorkshire. She is about to star IVF treatment and I just didn't want anything to affect her during what is an in readable stressful period for her and her husband. However we felt she ought to know now before her treatment rather than finding out during treatment. We had planed to go back to Scotland on the Wednesday but I was absolutely drained both emotionally and physically with the effects of the chemo kicking in etc. so we had a lie in on Thursday then a relaxed drive home. I'm not allowed to drive any more so poor Sue had to do it all. I think I dosed most of the way home. The following morning Friday 7 Sept I went in and had my Hickman line inserted in the right side of my neck without any problems. I never felt anything except a very small jag of local anaesthetic. On the Sunday 9 Sept out closest friends drove 3 hours each way after a night shift to see me prior to starting my "bad chemo" on Monday. He is a pensions expert for a large national company and we were able to talk about my situation and he was able to give some excellent advice and guidance on a number of things we should think about. Like setting up "Power of Attorney",ASAP, contacting pension companies re early payment of benefits etc, also to look at what help is available re benefits, disabled parking, disabled bus and train cards, etc.. more on these in a minute. It was great to see them and we'll timed as I am still able to help Sue sort this all out. We returned to the Beatson on the Monday the next 5 days to have the Methotrexate chemo starting at 6 am on the Tuesday morning followed by the CYTARABINE (AraC) approximately 24 hours later. I was not allowed out of my small ward for nearly 3 full days as I had to also have a drip of Sodium Bicarbonate running all the time. If it stopped for to long and I was away from the ward it would be very seriouse. It did give me a lot of time to think about what else had to be done. As I have already said we were/are still in shock and possibly a bit detached from the reality of it. This is a plus at this stage as it allowed us to move forward and apply for anything and everything that we may be entitled to. Not just because it is there but because we know that as this cancer progresses we will need every help we can get and it is better to sort it out now. I never thought at 53 I would need a blue parking badge or disabled bus and train passes, but not being allowed to drive etc means it is the only way I can keep a little independence until I need a career with me all the time. You find yourself constantly having un real conversation. Our plan was to get everything sorted in the next 3 weeks and before the side effects of the chemo start to take their toll. Strangely I feel a sense of relief that I am helping to do this and not leave a mess of stuff for the family if something was suddenly going to happen. I even found a bank account I had forgotten about with just over £100 in it!! Now it all sorted except a couple letters going to pension companies from my consultant I really feel more able to knuckle down and fight this blasted cancer. I also feel very lucky that I have had and still have the time to sort these things out and to talk to and see family and explain my wishes and thoughts. Many people never get that opportunity what with road accidents, heart attacks etc taking them suddenly and unexpectedly. My wife Sue has been immense for me and I hope now we have sorted the crap out we can try and enjoy every good week, day, hour, minute or second that comes our way in the knowledge that I am not leaving a mess behind and a huge weight on her shoulders. No one should have to go through the last three weeks we have but life and death are a fact and I would recommend sorting things sooner rather than later. Not just for your own piece of mind but also for the families piece of mind. Hopefully doing it will help give you more strength to face the coming months or in my case hopefully years ahead with new determination and a lighter load on all our shoulders to carry. The pending death of a loved one is a big enough burden for any one to carry. I am pleased it is the only burden they have to endure and I am in a better place mentally now to support them in carrying it for as long as I am able. It is now a couple of weeks on from experiencing the above. I am sorry if it sounds cold but believe me it was anything but! What I will say is for us doing theses things as quickly we could following the final diagnosis was the right thing to do.. It got us talking about us and our situation. We were/are still in denial which helps us distance ourselves from the mental torment and emotional pressure that is obviously there. I think if my condition had begun to deteriated and we had not already sorted this all out it would have been an unfair burden to leave with wife and family. We are definitely closer and ready for the fight ahead safe in the knowledge that I've done all I can when I could.. You may be different in your approach, but it is not quite as scary as I thought and we found a bank account with over £100 in we had forgotten about! So every cloud has a silver lining.we also found two small pensions who will give me my pension pot, that pays for a couple of holidays. Best wishes to you all Magpie Mike
