a bastard.

cancer is a bastard.

it suddenly creeps up on you like a puddle of water rolling across the floor that you haven't seen.
Even worse when someone tells you it has spread and is terminal you think "Oh shit! what now?
Not much left"

Suddenly there are alarming thoughts that take over the whole mind.

Legal, Stupid, silly, ridiculous thoughts, why me? what next, don't even go there, how the fuck does one type straight, how do you think clearly and so on etc etc

Just a very quick post for those who have been following Paul's blog.
After an almighty effort to get down to Cornwall to see his Mother ans Sister and the tremendous effort to get both himself and me (Jen) home, he has taken very ill and has been admitted to the hospital, the prognosis is not good, i'll not be lying to anyone , however now is the time to enjoy every day as it come and to not hang ones head so with that in mind , if anyone who knows Paul wishes to see him please leave a comment and contact here and i will try to find a way.
Jen

Oncology-schmology. The best laid plans, and all that.

So here was the plan: Canterbury hospital at 12.45 Thursday, review treatment going forward, grab some lunch, and drive to Cornwall for a few days with mum and sister. Simples! Errrrrr nope!

For a couple of weeks before this appointment my hand had been swelling and the moment we walked into the oncologist's consultation his eyes went to the hand and he was focused on that. "We need to do a doppler scan to see if the cause of the swelling is some kind of blockage. We can do that straight away. Nurse will arrange that"

This is now 1pm and she comes back: earliest doppler was 3pm. So that was a wasted 2 hours at the start of the afternoon. We eat lunch, and wander down to the Deep Vein Thrombosis department to get the doppler sorted, which involves booking in here, then somewhere else, then back to the original place etc etc but finally the doppler gets done and they decide that there's a partial blockage way up at the top of the arm near the collar bone which may be causing reduced blood flow down the arm and hand resulting in the swelling. Because of this they can't let me go!

Now they must do a blood test, and wait for results!

We wait, and potassium is low, haemoglobin is low, white count is high, and the blockage needs addressing. None of these will wait, and Cornwall looks like it may be receding into the distance. Upshot is we have to start taking Clexane. Clexane thins the blood allowing better flow, and is self-administered via an injection in the fatty part of the tummy which nurse duly shows me how to do, and that's all good.

We depart Canterbury around 6pm for Cornwall and of course it's all stress and getting tired, bank holiday weekend, crap traffic on the M25 and M4. No chance of getting to mum's that evening we book into a Travel Lodge at Reading (Jen is more than relieved by that idea because driving like that was not a good plan)

Friday morning we drive West and get to mum's late afternoon, with me totally knackered having run the gauntlet of hospital, tiredness, stress, holiday traffic, bad weather and more. I have to admit I cannot do the "jump in the car and drive to Cornwall" thing any more. That will need to be planned in advance for sure!

Plans are being made for the return on Thursday as I have to attend hospital Friday and Monday for further tests. Oncology are wanting to see me in 8 weeks, and we have decided that we will push these people in a more forecful and pro-active way to ensure that all the issues that keep coming up are not glossed over "till next time"

Up and Down

Seems that while I sleep and my arm remains motionless it swells. That means waking up two or three times a night in pain. Once i get up and start moving,have a shower etc within an hour or two the soreness subsides. So it's a bit of a catch22. Jens regime to keep the baseline of pain relief set is working well so thats good.  By spreading out the tabs better it seems to have stopped a lot of the profuse sweating that was a real nuisance. She is very good at coming up with plans like that and doesn't often get them wrong so I am grateful to her.

As mentioned before the next big date is 23rd August when we see the oncology consultant again to review whats going on and see where we go moving forward.

More of that when its done.

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!