Friday, 18 February 2011

CANCER

Right now it seems that the horrible disease of cancer is dominating everything. The start of 2011 has been a nightmare and there are worrying signs for us ahead. As you will know we have 2 children with cancer and also Samuel is battling with a tumour as well.

After my trip back to the UK I came back to Kenya to find Peter, the 13 year old boy who has been battling with a tumour on his head, having arrived back at the same situation he was in 13 months previous. We were had reached the stage of Peter receiving his final chemo session at the start of January, but just as that was due, a smal bump came up in the same spot as before on his forehead. It was very hard to take and when I did return from my grans funeral the lump had really grown, chemo was halted and tests were done. It was now time to face the docs and get an update. So in the midddle of January we had a meeting and were told the surgeons said they could operate and try to remove the tumour, but there was no guarantee they could get it all. Peter woudl then need to go on chemo for another year or so with possible radiotherapy too. The complication with chemo though is that as he has had so much already the cancer will have started to evolve and build up some immunity so it woudl be tricky in choosing which chemo drugs to use. The prognosis wasn't good and the docs left it to us to decide whether we go ahead with surgery and treatment or call it a day on trying to cure Peter. We walked away from the meeting devastated, how on earth could we make such a decision on someones life?? either give him a chance or call it a day and bring a death sentance on him.

We met the next day to discuss but none of us could come to a conclusion. I was getting ready for the Mount Kenya trip and I knew I needed more time to think. Also I was hoping to talk about the caase with 2 people on our mount kenya trip who were senior and experienced hospice doctors. So for the next 2 weeks I was away on the expedition, thinking, questioning, and in all honesty was probably more worried about how I could live with myself if I decided not support more treatment, its something I am ashamed to say that in a way that worried me more than the choice for Peter, how could I play God???

So a few weeks went by and I got some good advice from the hospice guys, they said ask what his chances are of surviving beyond 5 years. I got back to Nairobi after the mount kenya trip and emailed the doc asking that very question. He came back to me saying that 'IF' surgery worked and he received more chemo etc, his chances of lasting more than 2 years was 2 in 10. As soon as I received this email it was now clear in my mind. We could not put Peter through such painful surgery, loads more chemo and pretty much end up in the same place. It was clear we had come to the end of treatment for cure but now focusing on making the best of the days he has left. Thankfully his legal guardian and extended relatives all came to the same conclusion and there was a great deal of reassurance in that we had reached the decision together and shared responsibility in it.

Peter still doesn;t know what is going on, but I have now registered him at Nairobi Hospice, a place I once went to as a school boy on my first trip to kenya, to help out for a week. How could I ever believe that 15 years later I would be back there with a boy I am caring for. Next week on thursday we will go to day care and with the help of the nurse, counsellor and doctor there we will break the news to Peter. I am dreading that day and just cannot imagine how Peter will take the news, a boy aged 13 knowing that his life is going to end soon. We don't have a time scale and no-one can predict, but with the location of the tumour and the rate it is growing it is not looking great.

In the coming months we are going to face some very diffficult times and some seriously heart breaking ones. It seems so unfair that after all this work, after taking him through so much we are now in this situation. But I am glad of the support of the hospice and I know we will be really relying on them for help. Their vision is "Putting life into their days" so not worrying about extending life, but making the most of the life we have. This has made me think about Peter and the time he has left. I want to do something special for him, while we still can. I remember in the UK that there are charities that organise special things for kids who have terminal illnesses, such as disney world trips etc. If I could I would take Peter to Old Trafford to see Man utd, the team he absolutely adores, or I would take him to disney land Paris. But I know this is not possible, too many complications, getting passports, money, and risks of taking someone in his state overseas. But what I can do is organise a trip to Mombasa, its not Old Trafford, or disnety worl, but ist the closest thing to ana amazing holiday for a kid from Cheryls. I have spoken to a resort called Turtle Bay, an all inclusive place in Watamu. Its not my ccup of tea, but they seem to do things for kids, its a safe place and they have a great swiming pool etc. They have agreed to help us out and are giving me resident rates, with a 20% discount on top, plus the childrens rates are really cheap. My plan is that 4 of us would go down. Myself and Peter, plus a best friend of Peter (someone he can choose) plus James, who helps me out with lookking after Peter, James is one of our older boys who has finished school and spent many a night in the hospital looking after Peter.

The cost of the trip for 5 days which includes petrol etc is roughly £1,000 for the 4 of us. Its not often I would use this blog to directly try and raise money, but in this case I must, because I don't have this kind of cash available. I would be hoping to do the trip at the start of April, I can't wait too long in case his health detriorates and we couldn't travel, but I also need time to get organised and raise some money. The hotel have also agreed I don't have to pay the 50% deposit until a week before so they have given me more time than usual. we cannot put this money through the CWK charity as it would not necessarily fit their Trust Deed, so in raising these funds I would just need to receive them in my UK bank account and then I can pay the hotel here in a bank in Nairobi.

As I say i don't often use this to appeal for money directly but in this case the blog seems the best tool. We will still be spending money on Peter's medical care and we do have some funds in the bank to keep going with this, hopefully we will have enough in the long term, but for now we are ok. So I need to raise £1,000 for this special trip for Peter, a final gift, pretty much the last thing I can do for him other than organise his care. If anyone can help please email me and let me know, small or large, anything would be really appreciated, I want this to happen for him, I want him to enjoy the time he has, I want him to get the chance to play in the ocean, mess around in a swimming pool, have some laughs with some friends on the beach, eat some yummy food and for a week just pretend like everything is ok and forget about all this cancer stuff, I want to put life into his days. my email address: kjbkenya@hotmail.co.uk

Finally I must say thank you for all the support so many have given towards Peter over the last 18 months. Your prayers, your financial support have been overwhelming. I am gutted the outcome is not different, but if it wasn't for so many people getting involved perhaps he wouldn't have made it this far. Please keep praying, there is always room left for a miracle.

Thursday, 10 February 2011

MOUNT KENYA - PHOTOS ALSO BELOW POST

ON TOP OF THE WORLD – After years of talking about it, it being a distance dream.. (of mine I’m not sure, but of somone’s, yes), the time finally arrived for our expedition up Mount Kenya, Africa’s second highest peak after Kilimanjaro, only 900metres higher. Our expedition was to take 5 nights traversing and ascending into Mount Kenya’s peaks and valleys before climbing the to the summit (or Point Lenana, which is as high as you can walk). We set off, gear in hand to Old Moses camp. The pace is always slow at the start because the biggest fear is getting altitude sickness which at the least means you have to get off the mount, and at the worst means death. The slower you walk the better because it means you acclimatise quicker. Slow walking??? Thats my kind of mountain trip! First camp we were in tents, a little too short for me and David, windy and cold at night and arriving in the dark and trying to find all your stuff was no fun. Our porters carry our stuff, plus some plastic table and chairs for us to dine with, total extravagance. That night at Old Moses there was a hut so we ate sat in side, a delicious meal and then headed to bed. David and I both struggled to sleep and by 2 am, without any sleep we decided to pack up our stuff and head into the hut to sleep in one of the small dorm rooms, so for about 4 hours we slept. Next day we continued to climb, the vegetation changing around us, no more trees, mainly bush, heather and some very unusual looking plant life. We headed up to this beautiful valley which would be only ours for the night. IN the bottom we could see a tiny hut which would be the kitchen and bedroom for the porters, for us it was tents again. The valley was stunning and amazing it was only us there. Through the whole journey we could see some of the peaks of the mount, mainly covered in some snow and it was always drawing us and pulling us closer and closer.

That afternoon as we rested and recovered at camp we start to see what initially looked like cloud moving into the valley. After more inspection we realised it wasn’t cloud but smoke from a fire. Above a whirring noise kept coming and we watched as a helicopter kept going back and forth above us. We discovered through phone calls to basecamp that a fire had been started by Poachers on the Chegoria side of the mountain (supposedly a stunning landscape which we had been saving for our descent). People were being rescued from the fire and it soon became clear we would not be descending the mountain that way. This did bring some initial disappointment from the group but then relief we hadn’t come up that way and got caught in the fire.

The next day we packed up and I was ready early. Because of my bad asthma our expedition organiser had given us extra guides, so Paul one of the guides encouraged me to set off early ahead of the others so we could tackle the first initial climb which would be tough. It was much easier for me to walk at my own pace and control my breathing, my strategy was keep going slow and steady with stopping as little as possible. It was all about rhythm, breathing and walking in rhythm, that’s how I would control my breathing so everytime i stopped it was hard to get back into the rhythm, so me and Paul set off, at my pace, and before I knew it we were at the top of the first hard bit of the morning. I was so pleased and realised if I was going to get to the top the next day I would have to do it this way, on my own with Paul as my guide. The others caught up and we descended into another valley and slowly headed to Shiptons, our final Hut before the summit. The landscape continued to change and became more and more weird with what looked like alien plant life. The closest thing I could compare it to would be a Star Trek ‘set’ from the early episodes in the 60s or 70s, it was crazy.

Reaching Shiptons we felt the cold and could see the mighty task before us to reach point Lenana. It was standing there above us, proud and majestic, partly snow covered with an almighty steep scree just before it. All of us felt anxious, how was this going to be possible???? Even knowing that thousands had gone before us in time, it still seemed crazy and impossible. There was an air of anticipation in the camp that night, as we ate, read our books, talked with some crazy Israelis who were also climbing the next day. We kept going outside the hut to see the mountain, I guess hoping in some way it had changed shape and wasn’t quite as bad as the last time we looked, or perhaps maybe just we had missed looking for an easy route. It never changed, and remained the same shape all night funnily enough.

I woke at 1am, knowing that in an hour we were to get up, so I put my ipod on and watched the minutes tick by. At 2am we rose, started packing our things in the dark, (having all pretty much slept in the clothes we were to climb in that day). Tea and biscuits for breakfast and then back packs on and for the first time, really warm clothes, rain coats, gaiters, waterproof trousers, basically the works. My day pack was filled with snacks and energy stuff to keep me going. As usual I was ready before everyone else so Paul grabbed me and said lets go. We set off, the first to ascend the final stage. I had my head torch on, walking poles at the ready and set off in the pitch black. My plan was clear, using my head start, stay as long as you can infront of the others, so then when they catch up and go past hopefully there would not be as far to go so I could reach them and join them at the top so they wouldn’t have to be hanging around for me. So head down, breathing kept in control and realise its just going to be uphill for the next 3 – 4 hours in the dark. As we set off my head was down with the torch just lighting the way in front of me, the ground sparkled like it was covered in thousands of diamonds, the gravel, the grass, the plants, the rocks, the sand, everything sparkled, it was magical. But soon this began to end and we got to the scree, climbing each step but occasionally the feet slipping back. I tried to just look forward and not think of the others behind me, but after not long I could see the torches below getting closer and closer and then I heard talking. As we stopped to breathe I looked behind and realised it was the Israelis, who had set off the same time as the rest of my crew behind me, but seemed to be powering on hard. We let them pass, and began to walk again, my crew still a fair way behind, mayb 15 minutes gap. We carried on at the pace of my choosing, slow and steady, one foot at a time in front of the other, breathing in breathing out hard, breathing in, breathing out hard, we just kept walking and to my shock somehow we seemed to have caught up with the Israelis, they had slowed right down and were struggling. We passed them but they kept up and then they passed me, it was like playing tag for about 20 minutes, until I was ahead and had created a gap between me and them. I wasn’t trying to race them, I was trying to concentrate on my own pace, but secretly inside I was pleased to be back in the lead again. My own group seemed far away but I knew the higher we got the slower I would become and I was sure they would catch me anyways. We stopped to rest by a Tarn, still in the dark, we sat myself and paul, rested and he told me the next step is the last stage, 1 hours climb. I looked down and couldn;t see any lights, we sat for 10 minutes eating and resting. My eyes were adjusting to the light and I could see the peak looming ominously above me, a large black rock shape that was obviously bigger than a single rock, but there it was. I began to see how steep it was around us and that the scree just ran straight down, if you got dizzy and fell it would be a long way rolling down the mountain at this stage. One Israeli met us and sat down, but we had rested enough and set off again. At this stage it began to dawn on me that perhaps if I could keep going maybe I could get to the top first... me the asthma boy, overweight and unfit might just make it there for the sunrise and the honour of being first (although I did have a head start so it wouldn’t be that amazing).

We set off and boy did it get hard, then harder and even harder still. Soon we were scrambling over rocks and the steps up and over rocks grew bigger and harder, harder to control breathing, legs aching, oxygen getting lower and weather getting colder. The closer we got to the top the more I could see and the more it felt it was getting further and further away. I began to stop more and more to breathe, the torches below getting closer and closer, I knew the Israelis were picking up the pace and I had resolved to myself I had got this far being in the lead I must get to the top first, I was not going to let the Israelis snatch victory in the final stages. We kept pushing, higher and higher, the top getting closer but the climb getting harder. I could see the last stretch, I dug in deep pushed hard, threw caution to the wind and worked my way up to the final moment, a large rock to climb up, Paul gave me his hand but I was determined to do it myself, I pulled my way up and there we were, on top of the world... well the small bit of world around me. I could see the flag on the final few rocks, Paul waited and let me rush to it, I hugged it and leaned on it, breathing and seeing the sun just start to peak above the horizon. I had made it, I made it first, I was at the top, in time for sunrise.... I could not believe it. For a few minutes I had the place to myself, it was mine, my flag, my summit, my view, I had done the impossible. What relief and what joy. The Israelis soon joined me and I shook their hands (with a little smugness inside, but really just happy, and pleased for them too). About 10 minutes later the rest of the gang joined. I think we timed it perfectly, I had left maybe 15 mins before them and so it was perfect we were all at the top at the same time.

We spent 20 – 30 mins at the top, watching the sunrise, taking photos and trying to take it all in. BUT it was freezing... I was struggling to control my breathing and soon it was time to go down. This was the hardest bit, we had to cross a very steep rocky and snowy and icy section which at times meant being on all fours holding on to the mountain. One bad slip and you would be sliding down to major injury if not death! This threw me, it wasn’t the height or danger but in concentrating so much on climbing down I forgot to control the breathing and I lost it, and for an asthmatic thats a big deal. We got to the point of being able to walk a bit easy down but my breathing had gone, my body was devoid of energy and I trudged down, the back of our group, defeated by my inability to breathe. There is a small hut on the other side which we were not using and I just got there, lay on the gravel slope on my side curled up, I was done, I was spent, I didn’t want to go any further. I was sad at that point, I thought of my grandmother who had just passed and sat their slowly attempting to eat a pop tart but each chew required too much strength, tears rolling down my cheeks through my glasses. It was my lowest moment. I gone from total joy and jubilation from being at the top to being lost, sad, grieving and drained of energy. Everyone was ready to press on down. I picked myself up, wiped my cheeks, Paul who had come to know me very well came over as I set off down he just took my day bag off me, he knew I was spent and had little energy and was struggling to breathe. He took my back pack and we headed down, past the glacier down another scree, past the most beautiful pool at the bottom of the glacier and by 11:30am we reached the next hut. I was done, I was wrecked, we had breakfast and I went to lay down. I was worried my breathing was still not right.

An hour later they called us for lunch I began to eat a sandwhich when suddenly I realised the sandwich had peanut butter in it, i couldn’t believe it, it was the last thing I needed. My lips swelled a little, there was an itch in my throat and a pain in my chest and started to feel sick. I tried to blank it out but I couldn’t. I went to lay down, I slept, relaxed and in time it faded away. By evening I had regained some strength, the breathing was better. Next day we continued down Naramora side, at pace, the plan to reach the hut and then next day walk to the gate. Word came though that there was a problem at our last hut etc and so perhaps we would be picked up there and go stay at someones house. In a way I was sad we wouldn’t walk to the gate but as time pressed on and the first rain set in I decided, we had done it, we had done the mountain and it was time to go. The final 9 kms on the last day would have been on a dirt road, we would not have seen much so I was happy we were leaving, I was stinking, I was ready for warm weather and a shower.

So we had done it... in fact the hardest bit of the whole trip was sleeping at night, it was horrible, but the climbing, when I was able to do my own thing was fine and despite a rubbish descent I had made it and done it well. We were slow, but that was to our advantage as none of us had issues with altitude sickness and hadn’t taken any tablets to prevent this. I loved the top and I am so glad I did it. I joked with my friends and people who had organised the trip beforehand, trying to show I was forced into the trip and didn’t really want to go and well if you asked me a week before I really wasn’t interested in the trip, i had so much going on at work and in my life I was struggling to face the thought of doing the mountain. But having done it, it was fantastic, hard, fun, tiring but great. Don’t think I would be going to the top again, but maybe the next challenge is Killimanjaro... we will see.

Mountain Photos... more below this post
















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