Oh I am so lucky to have had an unexpected Summer. I still feel extremely vulnerable, which is to be expected. I still feel also extremely lucky. i have had great problems sleeping since my treatment and the sleep problem seems to be getting progressively worse. I find myself, what i call, jumping out of my sleep. I drop off to sleep then jump and wake. I seem to choke as I do this and wonder if it is a psychological problem. i suffer from arthritis in my knees and hips and sometimes this keeps waking me up as the night goes on. The pain gets really bad and I dread going to bed. i wonder whether I am choking awake because of the bad nights. My wife had a bad nights sleep and spent most of the night awake. The following morning my wife informed me of my strange sleeping pattern. Apparently, all night and very often myt breathing gets more and more shallow and then I suddenly snort and half wake up. i start sleeping again and then after a few minutes the same happens again. This carries on all night and sometimes I wake up but mostly do not. I have been so tired recently that I can do nothing at all during the day. I come downstairs, sit in a chair and do not have the energy to move. I looked on the internet and I seemed to have all the symptoms of sleep apnoea. I have been to my doctor and he is going to arrange an appointment at a sleep clinic. We are so lucky to have our wonderfrul NHS. The Doctor thinks that it may well be sleep apnoea. It is possible that some of of the muscles could have been damaged in my neck by the chemotherapy. I cannot get much exercise and I am overweight. This would also contribute to make sleep apnoea worse. I am anxious before going to bed because of the problems sleeping so i drink alcohol before going to bed which also makes sleep apnoea worse. Waiting for an appointment at sleep clinic now.
Well it is that wonderful time of the year when we come out of the Winter and see the light at the end of the Tunnel. The photograph above was one I took of myself on the Tripod and timer. It was taken on a spring morning on my allotment, just after I had cultivated the soil ready for sowing. I have been growing my own vegetables since I first got married when I was twenty one. It was expensive to buy vegetables and so I started growing my own. I have always grown organically. Everything about growing my own vegetables is special, from soil preparation to the eating of my chemically free tasty food. Many people know a different taste of vegetables to the ones I know. When you start growing your own vegetables you soon realize that there is no taste in the shops equal to picking and eating vegetables fresh, sometimes eaten within several minutes of picking. During the long dark gloomy winter months I plan my Summer crops. I read through seed catalogues, writing down what I intend to grow when the weather warms up. In January I start sowing early crops on the window sill of my lounge in trays ready to plant out in late February. Every year this cheers me up. I am lifted from the dark dank days and transported to the time when I can get out and onto the gently warming soil and start the magical process again of creating life. In the photograph I am letting the soil run through my fingers. It gives me vitality and opimism to feel and smell the medium that will soon magically create food from tiny seeds that I will nurture to maturity by feeding, watering and protecting. There is something very deep in my soul that is rekindled every spring. Something I can not explain. Something very personal that is my core.
Because of being ill I have had to give up my large allotment, but not growing vegetables. I have paid someone to take off some of my front lawn and dig it for me so that I can go out of my house when i have energy and spend a few minutes growing. I was very worried that I would not be able to grow vegetables any more. This Spring is very special. I feel very lucky to still be here. I feel very optamistic. I know life is very fragile, but I do appreciate how lucky I am to see another beautiful spring. Ok, so now it is about four months since I last had any treatment. Just going back and remembering where I was a few months ago.
My operation lasted ten hours. That was a very long time for anyone to to be under anaesthetic. I was sixty six, so not a spring chicken. I was in a terrible state immediately after the operation. When I came round I was extremely groggy to say the least. I was not able to remain conscious for long and when I was conscious it was like being a part of a dream. I remember my family standing by the side of the bed. I was in a lot of pain from the operation. My oncologist said before the operation that you will go through hell when you wake up and he wasn't joking. I had a morphine line fixed to me and a button to press to push more morphine into my blood stream when required. I was attached to a paracetamol intravenous drip as well, which was releasing constant paracetamol into my body. I tried to speak to my family but my lips were swollen and I didn't make much sense as I was also slurring my speech. I did not have enough strength to push the morphine button, so my family had to do that for me when I indicated I needed more, which was very frequent. My lovely wife told the night duty Sister that I could not push the button to stop the pain and asked if she could sit with me all night to push the button when required. The kind Sister said that it was not allowed but if she sat next to my bed quietly then it would be ok. When the morning shift came on, the new Sister asked my wife why she was there. My wife explained to her and the Sister was annoyed and said you can not stay any longer and my wife had to leave. I do not know what would have happened if my wife had not stayed. I could not stop the dreadful pain without morphine and did not have the strength to summon a nurse to push it in the night. In any case it was being pushed every couple of minutes. How on earth would anybody without family manage. After two days constantly on morphine, strange things began to happen. I was having hallucinations, although I didn't know this at the time, it was all very real. My family came to visit and I told them the hospital walls moved up and down occasionally and changed colour. I then saw nurses trying to creep up in the night and try and remove my drips. I actually saw them crawling on the floor. I thought they were trying to kill me. I must stay awake and protect myself from them I kept awake all night. The thing is, it was obviously my mind, but at the time it was real and I was terrified. I saw a dog in the ward with two heads and told my family that it should never be allowed to be in the ward. I stayed like this for two days and nights, which were the worst days ever of my life, this was really happening to me. When I told my family they tried to reassure me and said the nurses were not trying to kill me. I knew they were I had seen it, my family either were not listening or they are in league with the nursing staff and want me to die. It was a terrible thing to believe but was so real there was no other explanation. It sounds amazing to me now but at the time I was completely devastated that my family were all plotting against me, I had nobody in the world. I came very close to ripping all the pipes out of me. I wanted to jump out of the windows, I had been deserted by the ones I loved so much. There was no help. Unknown to me my family had been speaking to the doctors about the terrible hallucinations and the morphine was stopped. A nurse came to me and apologised for not realising what was happening to me and I was told that there were other strong painkillers that would not make me hallucinate. Please do not think this is usual. if you are going into hospital and need morphine then you should know this extreme reaction is not common. This was my first time with morphine and my family know it was my last time. As soon as I could move at all I got out of bed and staggered very slowly up and down the ward every hour or so to get exercise. I wanted to get out. The physiotherapists came to see me and said I should perhaps not do so much too quickly. Never mind about that, I knew the way for me to start recovering was to get home. I begged the doctors, oncologist and nurses to let me out of hospital and get me home. After a lot of pleading by myself and my family I came home in less than a week from the major surgery. The nurses were surprised I was going home so early. I was very yellow and suffering from jaundice, possible because of the constant intake of paracetamol all through the week through the drip. I felt very ill, I didn't want to eat much apart from tinned rice and ice cream occasionally. I was very weak for a long time. I was home and mentally upbeat and this was what I need for recovery. I could see my family again, be part of their lives, talking and laughing. I was so relieved to get home. I had an appointment to see my Oncologist yesterday to discuss my treatment. I went for a body scan two weeks ago. I was very nervous about this appointment in case more cancer had been spotted on the scan. I was told that as far as they could see the scan was clear. I was very relieved. I asked if stopping the chemotherapy after nine sessions would effect the chances of the cancer not being stopped. Apparently I had as much chemo as they can give anybody in all the sessions and my oncologist was in no doubt that I had received more than adequate to kill most cancer cells. He went on to say that because the dose was high this had probably damaged nerves in my feet and this is why I had constant numbness and pain in them. The nerves may mend or it could be something that remains damaged and becomes part of my life. If I have a life, then to me this is a small price to pay. He tells me that I am finished in the unit and he will hopefully not see me again. I have mixed feelings about being dismissed from the chemotherapy unit. I am obviously very very pleased that I will not have to have the horrible chemotherapy any more and all the illness associated with it. I suddenly feel very isolated and alone. T_he primrose cancer unit at Bedford hospital is a wonderful caring supportive unit to attend when you are terrified of this awful illness. The unit is attached to the main hospital but it even has it's own entrance which makes you feel you are not attending the normal everyday wards of a hospital. When you walk in to the reception for your first appointment you are surprised at how courteous and kind the staff are, making your day feel better from the start. You sit in the waiting area, with a friend if you like amongst other people waiting for chemotherapy sessions. It is not long before a wonderful volunteer comes round and asks if you would like a drink ,coffee, tea, squash or water. Very soon a nurse appears, calls your name and takes you towards the unit. On your way he or she introduces themselves and tells you that they will be looking after you today. You go inside the unit and I expected to see a line of beds as in other wards. There are easy chairs dotted around the room and small tables and you are invited to sit where you like. Some people are already there attached to pipes going into their arms. There is facility for about twenty people at a time to receive chemotherapy. I see there are four beds as well in case some people prefer to lie down and perhaps doze, I sat, that way I didn't feel ill. There are nurses, about six or seven attending to the patients, changing bottles on the stands, attaching drips to arms etc. Some patients are reading, some talking to each other or sleeping. Nearly all the patients were happy to be there and being treated. Some patients brought in cakes they had made to share with the patients and staff. Apart from the effects of the chemotherapy I received on these days I looked forward to being there. These patients were so happy to be alive and enjoyed every moment they could. The nurses were extremely special. They had volunteered to be here and were a special kind of person. All the nurses were very considerate and worked hard to make the cancer patients feel as comfortable and happy as possible. I have never been in a hospital building where there has been so much laughter between staff and patients. I will always be so grateful to these caring people.
Well this was now stopping, so I will not only miss the unit and staff but also the fact that I was being monitored and looked after so closely. Have to remain positive now, although at the moment it is a bit like jumping off into the unknown. My left arm has become swollen over the last two weeks and I have developed a pain all up my arm into my shoulder. I mentioned this to one of the nurses in the chemo ward as I attended for session ten. The oncologist was summoned and he said he suspected I may have a deep vein thrombosis so chemo could not go ahead today. I spent the morning in the hospital having scans on my arm and shoulder. The photo above is my arm with a PICC line inserted into my left arm. The PICC line, short for peripherally inserted central catheter is a tube pushed up my vein in my arm and eventually into a vein in my chest. This is left attached to me permanently for the length of my six months chemotherapy treatment. The line allows direct access for the chemotherapy to be administered. One of the possible problems is that it can cause a deep vein thrombosis to occur. It has been confirmed that I do have a deep vein thrombosis in my chest. So annoying, this means that the chemotherapy now stops at number nine. I am worried that I have not had enough to kill any rogue cancer cells, but nothing else can be done. I spent the afternoon in another ward of the hospital waiting to be treated. Eventually I was given an injection of heparin which is an anticoagulant. The nurse injected this into my stomach. I was told that heparin is fast acting and I must inject myself every day in the stomach for a month. What was that again, inject myself, I don't think I can do this. I went home not feeling my usual sickness from the chemotherapy that should have been but very scared of what tomorrow brings, and I could not see how on earth I was going to stick a syringe into my own stomach.
Ok, the time had come on the next day for me to open the box of syringes and do something I thought a couple of years ago would be impossible. I sat on my chair with my belly exposed and a syringe in my hand. It was not about the pain I was worried, but by the actual act of injecting myself. I sat for a few minutes thinking. I realised in the end that there was no way out of this situation other than to go ahead and inject myself. I squeezed some flesh together, hovered the end of the needle over the flesh. I tried to angle the needle straight then plunged. I was surprised I hardly felt anything. I pushed down on the plunger until the syringe was empty then pulled the needle out in as straight a line as I could. I had done it, I was so pleased with myself and relieved that today's ordeal was over. Each day for a month I went through the same procedure, each time the fear and reluctance. As the month progressed the fear gradually got better and now it was becoming a normal accepted procedure. I was surprised how quick I could get used to it. Before I had been diagnosed with cancer I had a great fear of needles, which now has gone. After the month my stomach was a mass of holes and black and blue from bruising caused by the injections. Towards the end of the month I attended a warfarin clinic at the hospital and received warfarin tablets and a book to record blood tests in. I was to take tablets for six months to thin my blood and disperse the blood clot safely. I was to go for a blood test every two weeks to make sure my blood readings were right to disperse the clot. It is funny how we go through life thinking we know exactly how we would react in various different circumstances that may happen to us. It is not until we are faced with them that we find out what is in us. We sometimes act and feel different from the way we imagine we will. Nobody wants to have cancer but I am stronger person because of it. We do things we didn't think we could and we are desperate to overcome this illness and live. I have found an inner strength that I never knew was there. I have just had chemotherapy number nine. Things are getting tough now. The chemotherapy is gradually building up in my body and I feel terrible most of the time. I am very weak and have a job to do simple tasks. If I am in the house on my own I usually just sit and doze if I can or look out of the window watching the birds. Making a cup of tea is too much like hard work and besides I feel sick most of the time. My feet and legs are very numb now all the time and my hands and arms are beginning to get the same. I keep telling myself that this is a small price to pay and is part of the cure, which makes me feel stronger. I couldn't eat anything during the chemotherapy day and struggled not to be sick in the afternoon. I did not want to be sick in the chemo ward. Everybody attached to pipes and feeling bad would not appreciate me vomiting in front of them. The days are nice and warm at the moment and this helps a lot. I spend a lot of time sitting in the garden in the sunshine feeling very lucky to be where I am. I sit and shut my eyes and suddenly I can hear everything clearer. Things I had not noticed when my eyes were open suddenly become more apparent. I can hear the birds calling now. The most striking thing though is the buzzing of the bees. My eyes shut, I turn my face towards the sun and feel the warmth. I can hear bees all around me and I imagine them flitting from flower to flower in their search for nectar. The bees are overcoming the nausea. I realise I am sitting in this position, alone, eyes shut tight, facing towards the warm sun, listening and with a big, big smile on my face.
Ok, here we have Spike and Cara. Spike and cara the greyhounds belong to my son. Sometimes we dog sit and have the two of them here and look after them if my son is going away. Thought you might like to meet them. Spike is on the right he is a very big laid back dog that takes everything in his stride. Cara on the left, she is a bit nervous and is always suspicious that you are trying to trap her and she usually goes away if you call her to come to you. These are rescued dogs that would probably have been put down, they were only three years old when adopted, but their racing lives were already over. Who knows how they were treated in their previous lives and how much their treatment has affected them. We also have a greyhound called Millie. The three of them get on very well and Millie looks forward to the sleep overs I think.
Just finished Chemo number eight. Feet and legs have got worse with pains and numbness. Sickness worse as expected. Decided I am keeping this to myself. Taking the risk and not telling oncologist, I don't want to stop treatment yet unless I really have to. I have not told my GP yet either. When I was talking to my GP recently about all the things I am feeling he said, well it is a very strong poison we are putting into you and people can die from it. Not many sessions to go now and each extra session must be helping zap any cancer cells. Ok enough for now, All the best to you all, Paul x Hello,
Found these beautiful bluebells in a wood near to me. I had Chemo number seven the other day. I needed to cheer up and went here to take some photographs. The wood was deserted and I sat on a log feeling very sick and fatigued, but very happy. I sat and watched and listened to the birds singing. They were singing to me and telling me to enjoy the spectacle around me, as I was still here. I am extremely happy around nature, I always have been, but never so much as recent times. Perhaps I have taken nature too much for granted, thinking I will always be able to see it. Anyway I have never seen the bluebells look more beautiful. I had a job to walk on the rough ground in the wood as my feet have gone numb, the numbness is slowly creeping up my legs. Oncologist says it is the chemo affecting the nerves and if they get too bad I will have to stop the treatment as the numbness could be permanent. I am now in a predicament. If I stop treatment then will it be enough to kill the cancer cells. If I do not stop and I live, how bad will nerves be affected. I am carrying on for now and hoping damage will not be too bad. I am too scared to stop treatment. Hello again.
I have now finished chemo number six. I hope to do twelve. Halfway now. I am now feeling very sick after each session and completely fatigued on chemo day. I have a job to walk upstairs to bed when I get home. I usually go up stairs slowly on all fours. My wife often helps me to get undressed and guides the attached chemo bottle and pipe through the sleeves of my clothes for me. I feel fatigued for the first week after chemo, then for a few days do not feel so bad, but know the next session is due soon. It is the worst feeling I have ever felt but take great comfort in the fact that hopefully feeling this awful means any cancer is feeling worse and is wiped out :) . The steroids I took was to stop a lot of this nausea but they caused terrible insomnia. I spoke to my oncologist and asked if they were necessary in treating cancer. My oncologist said they were purely to stop a lot of the sick feeling and the choice was mine whether to keep taking them or not. I have chosen to stop them. I was getting hallucinations at night which apparently sometimes steroids can do so I prefer the nausea. Will let you know if that is the right choice ha ha. A few days before my chemo I managed to get outside in the garden and felt well enough to take some more photos for dreamstime. I love setting up my camera on the tripod and using the thirty second timer. I work out how I want me (Senior man) to look in the photo. I often dress accordingly and practice my pose in the mirror. I focus on the spot where I will be, press shutter dash into the photo area then pose accordingly. Perhaps a happy or angry man using mobile phone or lie down on grass twisted up simulating a garden accident. I love researching what customers are buying and trying to act out the scene they need to buy. I have acted out many strange scenes in my garden. I am usualy in the house on my own but goodness knows what neighbours must think if they see this strange behaviour. Thank goodness I have this pastime. Bye for now, Enjoy every minute. xx Well been some time since I was last here. I wasn't up to much for ten days after the chemotherapy, some days worse than others. Since Saturday I have felt much better so I am trying to enjoy my good days before we start all over again on Wednesday. My hair has started falling out now. I am grey of course but had a good mop of hair. If it goes I will not mind too much though, it will be interesting to see what I look like bald if it all goes. I was talking to a lady yesterday that has been through the same treatment as me three years ago and she said her hair has grown back even better than it was before her treatment. Not as dry and course like hair goes when it becomes grey.
You never know I might grow jet black hair back that I had as a young man. I might in fact become younger again. I always thought when I was younger that I would not age like other mere mortals but stay forever young, perhaps this is the turning point ha ha. Perhaps I was mistaken and my body was meant to age and it was my mind that would never age. I do not feel any different to when I was twenty one. I still think the same, I still like all the things I did then and still get just as excited about life as I did then. I know I will never be old in my mind like some people of my age seem to be and get very grumpy about everything. I am very lucky to still enjoy everything and be passionate about being alive. I Just dropped off my youngest son for his induction courses as a mental health nurses. He has just finished three years training and starts a new job very soon. Two days induction then he will be on the wards, fantastic. Ok time to put on the coffee machine and enjoy another of lifes pleasures. Bye for now. Paul x. |