Damn Swollen Arm!

While the surgery to pin the fractured bone from March seems to have healed brilliantly the lesion in the bone seems to be causing problems on and off. Basically if the arm isn't kept active, and it doesn't stay in a slightly elevated position especially when I sleep the arm, and especially the hand around the knuckles becomes very swollen and uncomfortable.

It's difficult to be pro-active about this because while you're asleep there is not a lot of control regards the position of the arm relative to the body; even if you start off in the right place it's all too easy for the arm to move while asleep. However it's something that I will just need to persevere with.

Allied to that the radiotherapy affected my hand in that the palm and tips of the fingers became sore to the touch rather like a burn (which I guess that's what it was).

We were prescribed a course of pyridoxine which I am still taking and that seems to help but again, as with a lot of these things its a slow process. What I have also been doing is treating the hand with aqueous cream that certainly moisturises the skin rapidly, and promotes an easing of the tightness and soreness of the skin, and cools the hand too. Aqueous cream is a simple thing but often these are effective, and it certainly seems to help.

Read about pyridoxine here

With reference to the weight loss that has been ongoing for some time i am now down to about 18 stones which means I have lost about 60 pounds. While I can afford to lose it I don't need it to continue and it does seem to be settling out now. What it has meant is that all my clothes like trousers, and shirts don't fit! A couple of months ago I bought a pair of trousers with a 50inch waist that fitted me at the time. We were going out the other day and when I went to put them on they were way to big in the waist again. I have just ordered a pair of 46inch trousers!

A Shoulder is Good!

I haven't written much lately: the radiotherapy which lasted 2 weeks was a boring traipse of 10 days every day to Canterbury for a 10 minute treatment that held no surprises.

Since then I have to admit I have had more than a couple of bad days, more emotional than physical, although I am feeling better today. Jen is a rock and maintains an attitude that rubs off on me for which I am both thankful and grateful for. When you're feeling crap it's amazing what a good attitude next to you does!

Yesterday was a good example: all I seemed to want to do was sleep, and that has to be hugely frustrating for her but I am thankful that her calm demeanour meant I came through that sleepy time and we ended up awake together, watching TV through the evening.

It's difficult sometimes when you become emotional about nothing in particular, and you can't seem to control that, or understand why you feel that way: for me I just want to cry without quite understanding what causes it, or starts it off. It's important to have a shoulder to lean on when that happens and I know Jen gets frustrated too but at the same time she is not afraid to put her arms round me and offer the comfort I need when I feel like that. Thank you darling, it's much appreciated even though it doesn't always seem like it at the time!

We have a wait now for the next appointment with the consultant in a few weeks time and we see where treatment goes from there.

Radiotherapy:

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!

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.
  

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.

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.

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