R.I..P

Paul passed away today after almost a year fighting a battle he could never win. He was with his family, us all laughing and joking until the end. We know he'd appreciated all your love and comments on here,  carry on writing them as we would love to read them and hear your memories, funny, sad, serious whatever. We do ask though that all are good, happy, fun memories, as we want to celebrate his life not mourn his death. Lots of Love, Jenny, Sarah and Hannah xx

WONT BE BEATEN!!

There have been a number of mentions that I should keep people updated as to my progress with regards to the cancer. The last post was too dark and really didn't give the correct information as to both my attitude and my position. This will not beat me and as of today I am fighting the cancer in such a way that is different from how it appeared previously.

We have seen the medical team and the physio and have a regime to try and strengthen both my legs and increase my general well-being. This should enable me to get out of the bed within a certain amount of time, although we don't quite know how long this will be. What I will say again is this will not beat me.

Allied to that, Jen is my rock and it is only with her that I can do this. I thank her tremendously because without her this would not be happening. I love her more than anything. Thank you Jen. 

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!

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

aches and pains

Getting Blood

While I am looking forward to the next stage with the 4th chemo cycle being followed by radiotherapy on the arm etc, I have been having some ups and down with pain in my upper arm.

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.

Dracula's Lunchbox!

Staff Nurse Carrie

Happy Chappie!

The meeting with Mr Raman, the oncology consultant went well. We have come up with a new plan based on a couple of things. Firstly, there had been a concern, which I have been a little loathe to mention too much which was that there were a couple of "spots" that had appeared on a previous scan on my liver. Of course the liver is a vital organ and we wouldn't want stuff happening there, however the scan from last week seems to have shown that these spots have now gone: this means that the 3 cycles of chemotherapy thus far have done the job we had hoped for.

Furthermore, as we have now got to increase my white blood cell count on Friday meaning that Chemo cycle 4 is postponed till next week, Mr Raman has decided that four cycles will at this time be enough. So, this week we do the transfusion, along with a dose of G-csf to promote white blood cell increase, and next week we revert to cycle 4 of the Chemo. The new plan is that after cycle 4 we will try some radiotherapy on the arm lesion. This will not only target that lesion specifically but should also help with management of the pain that comes from the arm.

Radiotherapy is slightly different: looks like the arm will be 5 doses of radiotherapy on a daily basis Monday to Friday in about 3 weeks time. There is also a question about some soft tissue problem in my neck area they will discuss at their case meeting next week, and if they decide that's an issue the radiotherapy may extend to a couple of weeks daily on the neck again to target a specific area. I am not so sure about the neck, because I think the soft tissue damage was caused after the fracture when i was wearing a sling for a number of weeks and am only now getting to be able to straighten my neck properly; we shall see what happens on that score.

All in all though, I have to say, a good result thus far, and I am a "Happy Chappie"!

Chemo Cycle 4 Postponed

Went to the hospital this morning for the regular blood test and assessment prior to the Chemo dose scheduled for Friday. As reported I haven't had any bad reactions to the chemo at all really, other than losing my hair. However somewhere in the recent past in the lead up to the chemo we were told that after about three cycles the immune system is totally shot to pieces.

Sitting here at home and the phone goes, it's Viking Day Unit saying that the blood test results show that my white cell count is at rock bottom, and they are delaying my chemo on Friday but I need to go in anyway to have a blood transfusion to up the white cell count.

Seems its not unusual, as while we were in Viking waiting for the assessment this morning we were chatting to another guy who had exactly the same issue and they delayed his chemo for a week because his white cell count was low.

It's disappointing but I have to accept that its all part of the process.

Just waiting...

It's been a funny week or so. One day the arm (which seems to have been the focus of everything this past month or so) is OK, and seems to be improving, and then the next day its painful again and the "lump" that I presume is the cancer lesion along with the new bone and tissue growth that's there since the op seems to have a mind of it's own and kind of moves around: one day its on the side, then its on the back of the arm. I am sure it's not quite as bad as that but that's kind of how it feels.

Now last week was pretty quiet except that I finally got my redundancy from Addison Lee. They have been absolutely fantastic, and have supported me brilliantly. I am not going to go into details but suffice to say they did far more than they needed to and i am forever grateful to everyone there for the support and help they have provided.

Next step as I enter the world of benefits is to sort out everything that we can get in such a way that there is no "gap" in the finances. I think we have started that in good time and with the help of our Macmillan benefits advisor we have today begun that process. More on that as it happens.

This week I will be half way through my chemotherapy treatment and as I have said before, I can consider my self, thus far, very lucky in that i have had very few bad effects of the chemo. Tomorrow (Wednesday) we have the usual blood tests and assessment prior to chemotherapy cycle 4 along with an X-ray of the arm, and a review meeting with with the consultant following the arm operation.

Thursday sees an appointment with Mr Raman the oncology consultant, and we should get results of a CT scan which he asked for and which I had last week: hopefully there won't be anything too bad on the scan! Friday and it's the 4th chemo dose at Viking day centre in the morning.

All in all I have to say that apart from some tiredness and loss of weight I really don't feel too bad and life goes on in a pretty relaxed way and I can only hope that's how it continues.

Fitful Sleep, and a Positive Outlook

Nights seem to be hard work at the moment. We tend to be in bed at reasonable hours, and I get off to sleep OK. The worst thing is when you wake up, think you have had several hours sleep, look at the clock only to find its an hour, or even less! Several episodes like that make the nights long, drawn out and pretty frustrating. Jen tends to sleep quite lightly, so if I wake, and sit up, or get a drink, she will wake too. Makes for long drawn out nights where you end up waiting for the morning to come round. On top of that of course it means you're not getting the benefit of a good night's sleep which right now is pretty important.

Over the last week my arm has been quite painful but certainly nothing that I can't deal with and I guess the dynamic nature of both the cancer, and the chemo, along with the recovery from the pinning of the fractured bone will all be contributing to some possible pain as the whole thing continues doing whatever it's doing in there.

On a positive note, the lump in my arm seems to have become far less obtrusive this last few days. It's still there of course, and I do still get some pain with it, and still struggling with use of the hand due to the radial nerve pressure but the fingers seem to be moving better, and there seems to be a slightly improved range of movement overall. Of course there is no scientific basis for this but perhaps the chemo is having an effect on the lesion in the humerus?

I have today had another CT scan, which will enable Mr Raman to have a comparison with the original one I had way back in January: we are seeing him next week so should have results by then. At this point we are approaching half way through the 6 cycles of chemotherapy so while there's still a way to go on the planned course, one might hope that there could be some effect.

From my perspective I can only stay with a positive mindset, and not allow negative thoughts to come to the fore. This cancer will not beat me, and that is the simple fact of it.

Up and Down

There are some odd things that happen as a result of the chemo. Of course the tiredness hits daily, and that will not go away, but here's an odd one: after about a week, my voice goes husky!  Noticed it before but didn't make the connection, then again this last couple of days voice went all husky again!, after the chemo last Friday. Very odd!. Lets see how it goes next cycle .

Have also been getting a lot of pain in the arm again: I think the lesion is either moving a bit, or being affected by the chemo. The pain meds help but it does get you down a bit, and there's not much that can be done, bearing in mind that the bones that were pinned are growing back, and still creating pressure on the radial nerve, which of course creates pain.

I suppose it's one of those moments where I have to accept that this goes with the illness, and that it's a part of the process. In all honesty, it's not unbearable so I can live with it till it reaches some sort of conclusion.

Cycle three begins

Yesterday the chemo third cycle started with an uneventful visit to the Viking Day Centre.  All went according to expectations and we were home by lunchtime.

Of course the reaction tends to be delayed a few days anyway so nothing untoward at this time. Must have slept awkwardly last night as my arm is painful: taken the regular pain meds so hopefully they will kick in soon and help. I guess a lot of it is the fact that as there is a tumour there it's likely to be dynamic for a while: as the tumour and the the op settle bearing in mind that the chemo should work on the tumour.

As well as all that it's 3 days of additional tablets related to the Chemo dose, including 4 a day of those damn "horse tablets" again. Honestly how they keep a straight face when they give you these and say take 4!

Oh well here goes lol!