So I am 4 days into the 10 days of radiotherapy, and some of the the effects have been expected, and some have not. Very little effect from the first couple of days, but Wednesday found some real nasty aches and pains in the arm which I hadn't expected, and when we went for Wednesday's treatment it was a real struggle to lay on the table of the the Linear Accelerator machine: it's solid, and mighty uncomfortable. Added to that for some reason the radiographers could not seem to get me lined up correctly that day and had to keep adjusting my position prior to the treatment: this took about 20 minutes and became exceedingly uncomfortable. By the the time the first treatment was done on the arm I was in agony, and then they had to manoeuvre me to the position for the neck irradiation which did not help either!
To help the pain relief knowing it's coming, as I have explained through this blog many times, is to take liquid morphine (oramorph) which is fast acting against breakthrough pain. I took oramorph as we arrived at the hospital but that wasn't early enough. Having endured the pain in the treatment as we walked out of the hospital the bloody pain subsided!
Plan for Thursday: take the the oramorph "en-route" which we did today and the pain, which today was less than yesterday anyway, was already subsiding as we arrived. Add to that the "setting up" prior to the actual treatment is rather hit and miss because it all depends on exactly where you end up laying on the the table: today took about 5 minutes and the whole process including the treatment took about 20 minutes.
So with Friday left this week and a rest over the weekend allied to the treatment next week being only on one spot (the neck) it shouldn't be so bad.
As always we wait and see!
The sudden realisation that you have cancer hits you like a sledgehammer. On 9th February after 2 months of tests and all sorts thats what they told me. In more ways than one it's a life-changing moment and your mind goes into overdrive thinking all kinds of worst case scenarios.
Thursday, 28 June 2012
Sunday, 24 June 2012
Two Weeks of What Next
So tomo yrrow starts the 10 days of radiotherapy and a bit of a step into the unknown. Preparation last week included creating a method for accurately lining up the treatment machine so that it "fires" the x-rays at exactly the same spot each day. Compared to normal photographic x-rays these are quite high powered as they are designed to remove the cancer cells rather than simply photograph them.
This is done by using the scans from the CT machine and then "marking" the relevant areas using permanent tattoos; they are simply small dots on the skin but are in fact identical to the tattoos we get in tattoo parlours. I have 4 marks: just below the centre of the neck under the chin, one at the base of the sternum, and one at the shoulder, with the fourth at the elbow of the right arm. They enable the technicians to align the machines exactly each time to ensure the correct area is being bombarded.
There are 2 areas of "attack" in this treatment: first is the lesion in the arm itself which is quite swollen and prominent just now, and also pretty painful too. With luck the radiotherapy will reduce the size of the tumour and relieve some of the pain, but we are warned that initially the pain can increase before it gets better.
Second is a suspect area of soft tissue around the 1st thoracic vertebrae. They have noticed something there and feel its worth the treatment so better safe than sorry I say!
This treatment will last over ten days from this Monday, until Friday 6th July with a break on the middle weekend. After that of course we will review the progress and see what effects there are and from then further decisions can be made moving forward about the course and choice of treatment in the future.
One question which has come up in our minds relates to the original bladder cancer which of course was where this all started back before Christmas. The arm which was caused by the secondary metastasing of the cancer has been the big focus for 3 months with really nothing happening with the bladder cancer. We have made a mental note to ask the consultant about that when we see him next so at least we know if we should bear that in mind or whether the previous treatment has dealt with it.
For now it's into the radiotherapy tomorrow at Canterbury every day for 2 weeks and see how that goes.
This is done by using the scans from the CT machine and then "marking" the relevant areas using permanent tattoos; they are simply small dots on the skin but are in fact identical to the tattoos we get in tattoo parlours. I have 4 marks: just below the centre of the neck under the chin, one at the base of the sternum, and one at the shoulder, with the fourth at the elbow of the right arm. They enable the technicians to align the machines exactly each time to ensure the correct area is being bombarded.
There are 2 areas of "attack" in this treatment: first is the lesion in the arm itself which is quite swollen and prominent just now, and also pretty painful too. With luck the radiotherapy will reduce the size of the tumour and relieve some of the pain, but we are warned that initially the pain can increase before it gets better.
Second is a suspect area of soft tissue around the 1st thoracic vertebrae. They have noticed something there and feel its worth the treatment so better safe than sorry I say!
This treatment will last over ten days from this Monday, until Friday 6th July with a break on the middle weekend. After that of course we will review the progress and see what effects there are and from then further decisions can be made moving forward about the course and choice of treatment in the future.
One question which has come up in our minds relates to the original bladder cancer which of course was where this all started back before Christmas. The arm which was caused by the secondary metastasing of the cancer has been the big focus for 3 months with really nothing happening with the bladder cancer. We have made a mental note to ask the consultant about that when we see him next so at least we know if we should bear that in mind or whether the previous treatment has dealt with it.
For now it's into the radiotherapy tomorrow at Canterbury every day for 2 weeks and see how that goes.
Tuesday, 19 June 2012
Radiotherapy
Consultant has decided that the arm and some soft tissue suspect areas on my neck may help if treated with radiotherapy. So the chemo , as reported earler has finished for now after 4 cycles instead of 6, as it was totally knocking out my immune system. Chemo is a whole body treatment and the drugs affect every part of you whereas radiotherapy is location specific: they are going to hit the lesion in my arm and some spots on the neck where they think there are some suspect areas.
Doc gave me some leaflets about radio therapy, and again it amazes me that everything you get is done via Macmillan Cancer Trust. What on earth would the NHS do in regards to cancer treatment and support without Macmillan? Very little I suspect!
Radiotherapy Information from Macmillan
Information on Side Effects of Radiotherapy
Looks like I am in for more tiredness, and some other odd side effects but if I am lucky they won't be too bad. Of course, side effects are simply that: whatever the treatment throws at you you have to deal with it, and I am under no illusions that you have to accept those all as part of the illness, and whatever it throws at me I will manage.
Looks like there may be an increase in pain before it gets better, so might be another consultation with the pain management group if that's the case, we shall see how it goes on that score.
As an aside here I would like to thank everyone who has sent their messages and best wishes especially of course family and for the support that makes such a difference to keeping me focused daily on managing, and dealing with the cancer. Every message, and every comment makes a huge difference. Thanks to everyone.
Doc gave me some leaflets about radio therapy, and again it amazes me that everything you get is done via Macmillan Cancer Trust. What on earth would the NHS do in regards to cancer treatment and support without Macmillan? Very little I suspect!
Radiotherapy Information from Macmillan
Information on Side Effects of Radiotherapy
Looks like I am in for more tiredness, and some other odd side effects but if I am lucky they won't be too bad. Of course, side effects are simply that: whatever the treatment throws at you you have to deal with it, and I am under no illusions that you have to accept those all as part of the illness, and whatever it throws at me I will manage.
Looks like there may be an increase in pain before it gets better, so might be another consultation with the pain management group if that's the case, we shall see how it goes on that score.
As an aside here I would like to thank everyone who has sent their messages and best wishes especially of course family and for the support that makes such a difference to keeping me focused daily on managing, and dealing with the cancer. Every message, and every comment makes a huge difference. Thanks to everyone.
Friday, 15 June 2012
Marking Time
A quiet week really: since we have managed to re-establish that pain threshold baseline in a better place, the arm has been less troublesome, and added to my careful choices about what I actually do with it, I have been pretty pleased with the results.
There's not much happening on the treatment front till the 25th June: that's when 2 weeks of daily radiotherapy begins: though next week we have an appointment for the "preparation" for radiotherapy, whatever that actually means. Unfortunately the radiotherapy is scheduled to be done at Canterbury, rather than Margate which is a longer journey but all things considered Canterbury is not that far. Only takes about 30 or 40 minutes to get there so it could be a lot worse. I have heard of people who travel 2 hours each way for radiotherapy daily so mustn't complain!
One of the most annoying parts of the medication side of things is just how rubbish the doctor's surgery are at understanding the patient's need to get medication in a timely manner. The basic idea is that if you need a repeat prescription you call/contact the surgery and request the drugs you need. Now, doing this with, say, 3 or 4 days supply of drugs left should be ample you would have thought? In our case, the surgery doesn't even seem to look at a repeat request for about 48 hours, and then it might take another 24 hours to actually write and sign the prescription. In this age of modern communication, they insist that all requests are made in writing but are unable to accept requests via e-mail, and the form on the surgery website is disabled! When I enquired about this with a receptionist the other day she actually put the phone down on me. Frankly, doctor's surgery receptionists are so far up their own non-clinical ass thinking they know what you want that they rather lose sight of their responsibility to the patient and that they are there to provide a service where the patient is the most important part of the whole thing! Go to NHS websites and one of the biggest things they always say is that patients should always be treated with care and dignity among all sorts of other superlatives: hmmmm, I wish someone would point that out to the receptionists at our surgery.
There's not much happening on the treatment front till the 25th June: that's when 2 weeks of daily radiotherapy begins: though next week we have an appointment for the "preparation" for radiotherapy, whatever that actually means. Unfortunately the radiotherapy is scheduled to be done at Canterbury, rather than Margate which is a longer journey but all things considered Canterbury is not that far. Only takes about 30 or 40 minutes to get there so it could be a lot worse. I have heard of people who travel 2 hours each way for radiotherapy daily so mustn't complain!
One of the most annoying parts of the medication side of things is just how rubbish the doctor's surgery are at understanding the patient's need to get medication in a timely manner. The basic idea is that if you need a repeat prescription you call/contact the surgery and request the drugs you need. Now, doing this with, say, 3 or 4 days supply of drugs left should be ample you would have thought? In our case, the surgery doesn't even seem to look at a repeat request for about 48 hours, and then it might take another 24 hours to actually write and sign the prescription. In this age of modern communication, they insist that all requests are made in writing but are unable to accept requests via e-mail, and the form on the surgery website is disabled! When I enquired about this with a receptionist the other day she actually put the phone down on me. Frankly, doctor's surgery receptionists are so far up their own non-clinical ass thinking they know what you want that they rather lose sight of their responsibility to the patient and that they are there to provide a service where the patient is the most important part of the whole thing! Go to NHS websites and one of the biggest things they always say is that patients should always be treated with care and dignity among all sorts of other superlatives: hmmmm, I wish someone would point that out to the receptionists at our surgery.
Saturday, 9 June 2012
Lessening the Pain
Last few days has seen an increase in the pain in my upper arm: now it isn't anything continuously so bad that i am climbing the walls, but it has been on and off getting me down. A conversation I had with Andrew Thorne of the Pain Management Group some time back suggested that it was always possible to increase the dose of morphine or gabapentin to compensate for this.
I have currently been taking 60mg morphine along with other meds so a couple of days ago decided to increase that to 90mg. As well as that the regime is based on doses of the morphine and gabapentin and paracetamol in various combinations at 8am, midday, 4pm and 8pm. What wasn't covered was the time between 8pm and 8 am. Seemed a bit silly because when you sleep, and are immobile for several hours, on waking up thats a time when the arm really hurts.
Anyway, to counteract that I have added a couple of doses through the night to keep the baseline topped up, as I tend to wake up every couple of hours anyway. Added to that I have the liquid morphine which can be used to counteract sudden breakthrough pain if all else fails: and last couple of days the arm has not troubled me very much at all. I have also been very conscious to be pro-active regards not over stressing the arm, or using it too much as that often promotes pain: lift something too heavy or pull too hard on a shirt sleeve and 15 minutes later, pain.
Yesterday and today as a result of the better regime I have woken with little or no pain and I have to say that I feel pretty good today. Long may it continue
I have currently been taking 60mg morphine along with other meds so a couple of days ago decided to increase that to 90mg. As well as that the regime is based on doses of the morphine and gabapentin and paracetamol in various combinations at 8am, midday, 4pm and 8pm. What wasn't covered was the time between 8pm and 8 am. Seemed a bit silly because when you sleep, and are immobile for several hours, on waking up thats a time when the arm really hurts.
Anyway, to counteract that I have added a couple of doses through the night to keep the baseline topped up, as I tend to wake up every couple of hours anyway. Added to that I have the liquid morphine which can be used to counteract sudden breakthrough pain if all else fails: and last couple of days the arm has not troubled me very much at all. I have also been very conscious to be pro-active regards not over stressing the arm, or using it too much as that often promotes pain: lift something too heavy or pull too hard on a shirt sleeve and 15 minutes later, pain.
Yesterday and today as a result of the better regime I have woken with little or no pain and I have to say that I feel pretty good today. Long may it continue
Friday, 1 June 2012
aches and pains
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| Getting Blood |
I think most of it is settling and stuff after the operation, which I imagine because of the cancer lesion will take some time as it has to grow round the pin, and the screws that hold it in place, as well as the lesion itself.
Mr Smith the consultant who did the pinning has said he is happy with the results and doesn't need to see me any more which is good news!
Today it's final Chemo, and we are waiting for the radiotherapy schedule: means daily travelling to Canterbury for a 10 minute appointment but that's where they do it so no choice. With luck it will only be 5 sessions, but that may extend to 12 depending on their case meeting this week. We should know soon what the plan is.
I must say that the Viking Day Unit is brilliant: the environment, the staff, and the whole ambience makes for the best treatment one could wish for.
One funny moment from last week: when they did the blood transfusion they gave me 2 units of blood, and they bring the blood from the fridge in a red box which we likened to Dracula's Lunch Box! Picture below, as well as a couple more from Viking.
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| Dracula's Lunchbox! |
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| Staff Nurse Carrie |
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