Well time goes by so quickly and here it is August 2017.
I am minded to write this post as I have just referenced my blog in another forum, as it may be of help to those just starting this journey.
Update:
Still here still having some problems but nothing like before. Some things you just have to get used to with having this operation, it does cut you up a bit and leave lots of scar tissue which pulls and pushes against your inner bits.
The digestive system still has a mind of it's own and continues to surprise me now and again with it's response to certain foods. My learning curve has got better and I don't fight it so much although I am still my worst enemy sometimes and eat things I shouldn't and then pay the price. All in an effort to 'be normal' which after this you are not.
It is interesting that after all the diagnosis and operations and after care, all of a sudden it all stops after 5 years and you are on your own. And I mean on your own, no more support no more check ups no one in the proffesions taking an interest in you. Apart from immediate family and friends there is no one. It has all gone away. This is when support groups like the OPA (Oesophageal Patients Association) come into their own, they fill in this gap and give you connections with others that help and make this part of the journey bearable. The OPA helps earlier of course, from first diagnosis and through the treatment and operation, but I have found them really helpful after all this has died down and there is no one helping any more, so make sure you find your local OPA go there and let them help you, it is really worth it not just for how it helps you but for how you can help others just starting on this journey.
Thursday 17 August 2017
Monday 2 June 2014
I have been having some problems with food intake these last few months, mainly difficult to digest my food, and some resulting problems with that, but my good news is I have found a way to get past this. I bought a Nutriblast blender and now use this to eat my veg and fruit blended up. It seems to be working well and my system has settled down. Still experimenting with the composition of the blends but haven't felt this healthy in years, loads of energy and am accepting that red meat and heavy foods are a thing of the past, but hey that's no price to pay for health. Take care all and let me know if I can be of any help
Bryan
Bryan
Friday 31 May 2013
It has been a while since I posted last, but the good news is that as of last week and my latest 6 month checkout, all is clear and now I have moved out to 1 year for my next checkup. The feeling is fantastic, to get this far and still be here. I still have problems, but to do with the effects of the operation, eating and suchlike, but hey, who cares! (smile)
Hope you all are well who read this and if I can be of any help feel free to contact me.
Bryan
Hope you all are well who read this and if I can be of any help feel free to contact me.
Bryan
Friday 30 December 2011
Poem on finding out you have cancer
I wrote this when I found out I had cancer, it is a window into my world at this time. I share it now so you can understand the feelings that we go through, those of us unfortunate enough to hear those dreadful words, "yes, you have cancer".
Past tree lined streets and moonlight ways I drive, still as the night while all the world scrolls past in a dream, like a film, with me in the centre
I do not want to arrive, for then I have to talk, to explain, and then will come the tears, the fears and all that follows. I want to stay in the car for ever, just driving from the doctors to my home and back again, never arrivingI pass the familiar streets, turn familiar corners and hurry home as I’ve done a thousand times before, I don’t want to arrive, to shut the engine down and sit in silence
This time I wish I could drive for ever more, from the doctors to my home, this time I do not want to arrive. To see the lighted windows, feel the warm wind as I walk up the path; hear the chattering of my children, the sudden laughter, and the dog barking as she knows I am home. The cat will rub against my leg; my wife will hug me with a smile, and look deep into my eyes to search for truth which I do not want to give her.
Friday 25 November 2011
What's been happening!
Hi all
A bit of a late post, but been through a difficult time over the last 3 months.
I was doing well up until August and then developed severe pains in my arms and shoulders, also my neck. This went on for a few weeks, got worse and so a visit to the Dr was made. I had blood tests which were ok then an Xray on my shoulder to see if it was a 'frozen shoulder' but that was deemed ok too. It carried on and then I saw my Consultant who requested a bone scan. You can imagine how this feels, I was doing well and now it looked like 'something' was coming back or happening.
I had been mentoring a fellow sufferer through June and July who unfortunately died at the end of August. He didn't make it. As so often happens with this cancer it won, but I must stress that survival rates are not as bad as painted in the press recently, you may have seen these articles. I think they were very misleading, especially the statements about drinking and overweight contributing. I know many people who have this cancer and most of them NEVER smoked and are NOT overweight.
Still it has been a personal worry. My results came back and were clear which was a huge relief. I honestly was begining to think that it may be bone cancer. I had many sleepless nights.
So here I am now, been through the mill a bit, worried a bit more, but tried to keep it from my family and friends (they have been through enough)
I still have the pains, but am learning to live with them. My fantastic Macmillan nurse Caroline says it is probably 'old age', and I hope she is right.
This time last year, today, I had my operation. My brother Keith phoned me to tell me that one year ago today Sara my wife phoned at 8:30am to say I had just gone into surgery. She phoned again at 3:00pm to say I was still in, then she phoned at 6:30pm to say I was out, in intensive care and had smiled at her (I think it was wind!)
So here we are a year later and so so gratefull to all the NHS people who looked after me and made this possible. The chemo worked, it shrunk the tumour, the operation was had and now it was recovery time. I will continue the Blog now from this point on, with a view to helping those who go through it.
Please remember that if you or anyone you know has symptoms of reflux, difficulty in swallowing, etc or something not right in your throat, get it CHECKED out, and if you are not happy and it continues, DO NOT LEAVE IT and hope it gets better, keep on until you KNOW what it is, it may save your life!
much love and health to you all
Bryan
A bit of a late post, but been through a difficult time over the last 3 months.
I was doing well up until August and then developed severe pains in my arms and shoulders, also my neck. This went on for a few weeks, got worse and so a visit to the Dr was made. I had blood tests which were ok then an Xray on my shoulder to see if it was a 'frozen shoulder' but that was deemed ok too. It carried on and then I saw my Consultant who requested a bone scan. You can imagine how this feels, I was doing well and now it looked like 'something' was coming back or happening.
I had been mentoring a fellow sufferer through June and July who unfortunately died at the end of August. He didn't make it. As so often happens with this cancer it won, but I must stress that survival rates are not as bad as painted in the press recently, you may have seen these articles. I think they were very misleading, especially the statements about drinking and overweight contributing. I know many people who have this cancer and most of them NEVER smoked and are NOT overweight.
Still it has been a personal worry. My results came back and were clear which was a huge relief. I honestly was begining to think that it may be bone cancer. I had many sleepless nights.
So here I am now, been through the mill a bit, worried a bit more, but tried to keep it from my family and friends (they have been through enough)
I still have the pains, but am learning to live with them. My fantastic Macmillan nurse Caroline says it is probably 'old age', and I hope she is right.
This time last year, today, I had my operation. My brother Keith phoned me to tell me that one year ago today Sara my wife phoned at 8:30am to say I had just gone into surgery. She phoned again at 3:00pm to say I was still in, then she phoned at 6:30pm to say I was out, in intensive care and had smiled at her (I think it was wind!)
So here we are a year later and so so gratefull to all the NHS people who looked after me and made this possible. The chemo worked, it shrunk the tumour, the operation was had and now it was recovery time. I will continue the Blog now from this point on, with a view to helping those who go through it.
Please remember that if you or anyone you know has symptoms of reflux, difficulty in swallowing, etc or something not right in your throat, get it CHECKED out, and if you are not happy and it continues, DO NOT LEAVE IT and hope it gets better, keep on until you KNOW what it is, it may save your life!
much love and health to you all
Bryan
Wednesday 21 September 2011
What's been happening
Hi all
Sorry for the delay in updating my post, I have been having a bit of bother lately, due to possible strangulated hernia in operation wound site, followed by a severe infection. Ho hum ain't life great!!
Hernia turned out to not be strangulated, what a relief, hate those strangulated bits and bobs, gets in the way of living (smile) Infection cleared up now after a spell of antibiotics, so back on a reasonable level keel again.
For those who asked, my knee is really crap (excuse language) hurts all the time, the joint goes out every day, sometimes I can walk and sometimes I can't, but I am really good at sitting and watching the world go by. Only real problem is lack of sleep as it wakes me up a lot. BUT the good news is that if I keep on getting better then there is light at the end of the tunnel and I may be able to have the knee replacement next year Woot woot!
I looked at my diary for last year and will post this soon, but wanted to get something on here as I bet you all thought I had gone away (smile)
Sorry for the delay in updating my post, I have been having a bit of bother lately, due to possible strangulated hernia in operation wound site, followed by a severe infection. Ho hum ain't life great!!
Hernia turned out to not be strangulated, what a relief, hate those strangulated bits and bobs, gets in the way of living (smile) Infection cleared up now after a spell of antibiotics, so back on a reasonable level keel again.
For those who asked, my knee is really crap (excuse language) hurts all the time, the joint goes out every day, sometimes I can walk and sometimes I can't, but I am really good at sitting and watching the world go by. Only real problem is lack of sleep as it wakes me up a lot. BUT the good news is that if I keep on getting better then there is light at the end of the tunnel and I may be able to have the knee replacement next year Woot woot!
I looked at my diary for last year and will post this soon, but wanted to get something on here as I bet you all thought I had gone away (smile)
Wednesday 3 August 2011
Chemotherapy July 12th - August 3rd 2010 and some tips...
Weight loss
Well what a 2 weeks that has been! started at 16st 13lbs (237lbs) and down to 15st 11lbs (221lbs) a loss of 1st 2lbs(16lbs)
Eating
Can only manage very small amounts as can't swallow, and need to supplement with energy drinks, hence the weight loss as not getting much food inside me
Taking Chemotherapy drugs
still having to dissolve in warm water as can't swallow tablets and each session takes about an hour to get the stuff down. I keep trying to be quicker but am sick, so have to sip slowly and force it down, but at least it works.
Side effects of Chemotherapy
When I came home from the first 'all day session' on the 7th July and started taking the drugs I felt sick, but the tablets they give you for the first 5 days help stop this happening, however one of the effects I had was lack of sleep and agitation. I would sleep for a bit but then get very agitated and restless, getting up in the night and coughing up phlegm, back to bed for a few hours and then up again. I would go down to the bottom of the garden and cough and cough, getting up phlegm and trying not to be sick. We are surrounded by fields so I was not too concerned at the neighbours hearing me, although the cows in the field came over to see how I was and lend their support. The night can be peaceful and calming when you are ill and after a bad session I would sit under the stars and get my strength back, and think about the future and what was coming up for me. I must admit that at times I cried, I know this may sound like self-pity, but honest it was really hard to remain positive. No matter how much support you get from family and friends (and boy I had a lot of support) the bottom line is that you face this alone. It is you who go through it, you who are sick, you who face the future, no matter what it will be. And it is you who has to come to terms with your own mortality.
On hearing this news I became very practical, men tend to do this. I made sure my will was up-to-date. Bought a funeral plan, and listed all the jobs I needed to do in case I didn't make it.
Back to the side effects, I developed sores and redness around the groin area, treated with Sudacreme. Developed tinnitus with loud ringing in my ears and dizziness, felt very unsteady.
Got a runny nose and took temperature regularly, this is the one to watch, because your immune system is very weak, as a result of the chemotherapy, you can get blood poisoning very easily. Any infection, rise in temperature is very serious and you need to go straight to hospital. I kept an eye and was alright, this time.
I developed incredible constipation, just could not go, this was a result of the chemo. I had a word with my chemo nurse Caroline Marshall. who suggested a laxative from the doctor, also through this time had to stop taking the chemo about half way through as started being sick and just could not keep it down, this happened a few times, but eased off after a few days and I got back to 'normal'.
Got very tired and had to lie down in the afternoon, I couldn't keep my eyes open and needed a couple of hours before I could get going again, this was the same all through chemo for me, very, very fatigued.
I developed pains in my chest, a little on the 16th July, more by the 23rd, it was coming and going. On the 24th I phoned the hospital as pains bad, they told me to come into A&E straight away. This was at 10:35 at night. Arrived in Lincoln County and was shown to an area away from others, as still very susceptible to infection. You carry your red book with you at all times, and this lets them know you are on chemotherapy. They did tests, blood pressure, blood tests and I saw the Doctor at 3am. She said heart ok, but need to keep an eye on it. One of the side effects of the chemo can give heart attacks, so you have to watch it.
24th of July was also memorable as my hair started to fall out (18th day on chemo). It came out in clumps, from different places, mostly the side and back of my head at this point.
I went for blood tests at Louth hospital on the 26th in preparation for my next 'all day session' at Lincoln. Appointment with the Chemo Doctor in Lincoln on the 27th July to check how I was doing and have a look at my blood levels. This is to see how the chemo is affecting you and whether you can go for the next session. My levels from the Louth visit were low so they took them again and they were ok, so back into Lincoln on 28th July to start my second 3 week cycle. Got home at 6:45 had tomato soup and first chemo, again dissolved, was ok but got very sensitive legs and itchy especially from the knee down and especially the right leg. Very tired but eventually got to sleep.
Result the same as the last session, very tired, hard to take chemo, couldn't eat very well, constipation, dizzy, tinnitus and feeling sick all the time, especially the first 5 days.
Have developed a pain in right arm, an inner vein has collapsed as a result of the chemo being pumped in all day and is very sore. Have to keep an eye on it.
The dietician has been in touch to review what I am eating and help me balance my diet.
That's all for now, I'm tired (smile)
Bryan
Well what a 2 weeks that has been! started at 16st 13lbs (237lbs) and down to 15st 11lbs (221lbs) a loss of 1st 2lbs(16lbs)
Eating
Can only manage very small amounts as can't swallow, and need to supplement with energy drinks, hence the weight loss as not getting much food inside me
Taking Chemotherapy drugs
still having to dissolve in warm water as can't swallow tablets and each session takes about an hour to get the stuff down. I keep trying to be quicker but am sick, so have to sip slowly and force it down, but at least it works.
Side effects of Chemotherapy
When I came home from the first 'all day session' on the 7th July and started taking the drugs I felt sick, but the tablets they give you for the first 5 days help stop this happening, however one of the effects I had was lack of sleep and agitation. I would sleep for a bit but then get very agitated and restless, getting up in the night and coughing up phlegm, back to bed for a few hours and then up again. I would go down to the bottom of the garden and cough and cough, getting up phlegm and trying not to be sick. We are surrounded by fields so I was not too concerned at the neighbours hearing me, although the cows in the field came over to see how I was and lend their support. The night can be peaceful and calming when you are ill and after a bad session I would sit under the stars and get my strength back, and think about the future and what was coming up for me. I must admit that at times I cried, I know this may sound like self-pity, but honest it was really hard to remain positive. No matter how much support you get from family and friends (and boy I had a lot of support) the bottom line is that you face this alone. It is you who go through it, you who are sick, you who face the future, no matter what it will be. And it is you who has to come to terms with your own mortality.
On hearing this news I became very practical, men tend to do this. I made sure my will was up-to-date. Bought a funeral plan, and listed all the jobs I needed to do in case I didn't make it.
Back to the side effects, I developed sores and redness around the groin area, treated with Sudacreme. Developed tinnitus with loud ringing in my ears and dizziness, felt very unsteady.
Got a runny nose and took temperature regularly, this is the one to watch, because your immune system is very weak, as a result of the chemotherapy, you can get blood poisoning very easily. Any infection, rise in temperature is very serious and you need to go straight to hospital. I kept an eye and was alright, this time.
I developed incredible constipation, just could not go, this was a result of the chemo. I had a word with my chemo nurse Caroline Marshall. who suggested a laxative from the doctor, also through this time had to stop taking the chemo about half way through as started being sick and just could not keep it down, this happened a few times, but eased off after a few days and I got back to 'normal'.
Got very tired and had to lie down in the afternoon, I couldn't keep my eyes open and needed a couple of hours before I could get going again, this was the same all through chemo for me, very, very fatigued.
I developed pains in my chest, a little on the 16th July, more by the 23rd, it was coming and going. On the 24th I phoned the hospital as pains bad, they told me to come into A&E straight away. This was at 10:35 at night. Arrived in Lincoln County and was shown to an area away from others, as still very susceptible to infection. You carry your red book with you at all times, and this lets them know you are on chemotherapy. They did tests, blood pressure, blood tests and I saw the Doctor at 3am. She said heart ok, but need to keep an eye on it. One of the side effects of the chemo can give heart attacks, so you have to watch it.
24th of July was also memorable as my hair started to fall out (18th day on chemo). It came out in clumps, from different places, mostly the side and back of my head at this point.
I went for blood tests at Louth hospital on the 26th in preparation for my next 'all day session' at Lincoln. Appointment with the Chemo Doctor in Lincoln on the 27th July to check how I was doing and have a look at my blood levels. This is to see how the chemo is affecting you and whether you can go for the next session. My levels from the Louth visit were low so they took them again and they were ok, so back into Lincoln on 28th July to start my second 3 week cycle. Got home at 6:45 had tomato soup and first chemo, again dissolved, was ok but got very sensitive legs and itchy especially from the knee down and especially the right leg. Very tired but eventually got to sleep.
Result the same as the last session, very tired, hard to take chemo, couldn't eat very well, constipation, dizzy, tinnitus and feeling sick all the time, especially the first 5 days.
Have developed a pain in right arm, an inner vein has collapsed as a result of the chemo being pumped in all day and is very sore. Have to keep an eye on it.
The dietician has been in touch to review what I am eating and help me balance my diet.
That's all for now, I'm tired (smile)
Bryan
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