Even the Horse Said Neigh!

To avoid more time sat in the Hospital having drips going intio me over a period of hours, once the original chemo is added to the blood stream more can be done using tablets. So, I have 4 tabs to take today , and another 4 tomorrow which effectively complete the chemo session for this cycle. We often joke that a pill that's quite large is a "horse pill". Well in this case even horse said No! In fact what heactually said was "you must be ******* joking mate!, Am I supposed to eat them or stick them up my arse?""

I am about to take all four of these, with another 4 the same tomorrow.

Wish me luck!

Pain Pain more Pain!

After the chemo etc and a relaxing evening I couldn't getcomfortable in bed at all. After several abortive attempts to rest I must have dozed off about 3 or 3.30am, only to wake with a start at about 4.15 and the most excruciating pain in my right arm. I cannot explain how much this hurts: it makes onr feel sick, breathless, and disorientated. To add to the total mess of the situation, I have run out of my liquid morphine! It's on order from chemist and should be here later today, but thats not now!. Oramorph being liquid, acts fast and gets to the pain quickly.

Not sure what to do I called the Pain Management out of hours number: Talked to a staff nurse, appraised her of the situation: she asked me to call local GP service and explain referral from there. All done and have been advised to take some tramadol which I had in the house from couple of weeks ago. Pain Team will be in touch in the morning, to follow up. The arm is now stable, albeit painful, but better than 30 minutes ago, so looks like the tramadol worked.

A valuable lesson learned: Don't be afraid to use every available resource thats put in front of you, and if you take their advice they can help!.

First Chemotherapy Treatment

Today was a bit of a trip into the unknown: being pumped full of all kinds of weird and unnatural substances. What would the reaction be, would I feel sick, would there be some reaction I hadn't considered? Only time will tell.

Our heads had both got locked in with the appointment time, 3pm. WRONG! That was the time of the pre-assessment, and blissfully unaware that the real time was actually 11.30, until about 11.15 when for some unknown reason Jen turned over one of the many papers with appoitments for tests, scans, doctors, CTs, etc etc and there staring us in the face was 11.30: Panic!

Luckily the QEQM hospital is 10 minutes drive away. I called the Viking Day Unit, left a message that we were delayed by 15 minutes and would be there soon. Into the car, and off we go. Jen's driving so on arrival at the hospital she lets me out at the Day Centre to go park the car. As always, these appointments raise the stress levels, but what, as always, is the biggest stress inducer? Parking! Jen sat for 15 minutes where the few disabled spaces are: none available! She then decided to pay to park: found a space, and walked some 100 yards to get a ticket, remembering she walks with a stick, and to be honest that is NOT FAIR!  I hope someone from QEQM reads this!

Then, getting out the car her rucksack broke: stuff all under car: purse, money, phone. To her credit she collected it all up and got into the Day Unit then broke down in tears! No matter, she's a fighter, and her inner strength is her resolve and very few people know how strong that is. She soon recovered and we settled down to the business  of the chemotherapy. Three hours of anti-nausea drugs, then 2 different heavy metal compounds: etoposide, and carboplatin, which work together well against neuro-endocrine cancer. Three hours later we are done, and handed a supply of more chemo to take at home next few days, along with anti sickness pills and steroids.

Expect not much first few days, but possible sickness next week. Time will tell and of course and more of that here in due course.

Home and a cuppa, and a relaxing evening completing the day.

Nuclear Medicine

Today saw the final test before the commencement of chemotherapy tomorrow. This was what is called an EDTA test. This test is done over 5 hours or so to ascertain the kidney function of the body: basically a radioactive tracer is introduced into the body, and then over a series of blood tests taken over several hours the results will indicate the kidney's ability to remove these heavy toxic metallic compounds. Essentially chemotherapy is a controlled way of introducing very toxic substances into the body to fight the cancer. It's important to realise that while these substances can fight the cancer they can do all sorts of things to our bodies system and functions which we don't want either.

Not least of these is the destruction of the immune system, meaning that one becomes very susceptible to infection. Part of my daily routine will be to monitor my body temperature: one degree above normal and its on the phone whatever the time of day and into hospital for intravenous antibiotics. With luck it wont come to that!

So we arrived at Canterbury this morning before 9am and reported to the nuclear medicine department. Shown to a waiting area unlike any other waiting area I have seen in a hospital: large comfortable chairs, water machine, toilets, a short walk to the coffee shop, pleasant lighting and comfortable heating! I was soon called to have the first injection, and then we were free till 11am and the first of 3 blood tests. We walked to the coffee shop and had coffee and doughnuts (why not!?) then returned for the first test. Bang on time, and done in less than 5 minutes! 12.30 for the next test so wandered off, bought sandwiches and more coffee.

With the third test left to do at 2pm we got a call from the Viking Day Unit at Margate confirming the start of chemo tomorrow and an additional bit of news: further to a recommendation from the pain management team they are also organising some radiotherapy on my arm too. It seems that the radiotherapy can help with pain relief in bones so the consultant was happy to go with that.

Of course there's always a downside and that is the likelihood that i will become pretty sick over the next couple of weeks but, lets face it: you don't get something for nothing!

For those interested read more about Nuclear Medicine here
Viking Day Centre

Meet the Wife!

I did promise at the start of this record some insight into my wife, and while I am going to do that here what you need to know is that no words can ever express what I feel for her. But this will hopefully give you some idea..so here goes.

Jenny and I "met" for the first time back in 2001 in an internet chat room. I had been married previously for some 20 years, the last several of those unhappily, as, with many things of a long term nature like this we had simply grown apart. Enough said!

I was instantly drawn to this woman, just by what she said, as I hadnt seen her face, had no idea what she looked like or what her situation was but within the space of a few hours we seemed to have so much in common with each other.

So who is this mysterious internet head turner?

Quite simply she is my soulmate. We agree on pretty much everything, what we don't like works for both, as does what we like. we often know what the other would say in response to a question. We are genuinely happy in each other's company, and prefer to be with each other than not. We rarely argue, preferring to talk things out and pretty much always find a compromise that suits us both.

So this meeting on the internet inevitably led to an arrangement to meet in real life for the first time. I remember sitting in my car waiting for her to arrive at that meeting, and when she did, I watched her in the rear view mirror as she got out of her car and I said to myself "YYYYesssssss!". Whatever, our future was sealed at that moment.

Early 2002 saw us move in together, and that wonderful time of discovery, learning, surprises that come with a new partner. It just got better every day. I think I can honestly say that I had fallen in love for the first, and only time in my life. The next 3 years were the most amazing of my life and promised so much more: we planned stuff, sat up late into the night chatting, making love, uncovering little treasures about each other that we didn't know were there but which made us even more in love (and lust!) every day.

Every relationship has tough moments, and ours came at 9.30am on 25th November 2005 when Jenny had a massive stroke. Our whole world was changed in that fateful 5 seconds. No warning, no prior indication, no time to prepare, just "bang", take that !

I am not going to bore you with all the details but if you want to know more i recorded every day of that in a blog too. You can find it at The Road To Recovery

The result of all that was that Jenny is now disabled, left sided paralysis, and has spent 6 years being frustrated at being unable to do the simplest of things. however, what we are, is a team, and our strength came from the love and understanding, the care and belief that we can overcome pretty much any obstacle. This we have done, and it's that prior knowledge, seeing Jenny overcome the problems that were thrown at her every day by the stroke for the last six years that has made me completely confident in our (yes it's a joint exercise, hence the "our"; it was before, and it will be now) ability to overcome this cancer thing.

We are already finding solutions to the pain and mobility issues I have encountered, we share more intimacy in those moments than any other couple I know.

So what about the soppy bit you ask? Yes we married not long after she came out of hospital after the stroke, on 14th February 2006, and I love her more today than I did yesterday, but not as much as I will tomorrow. She is my rock, and I hope I am hers. Very few people are lucky enough to meet their one true love, that special person that fate decrees is the one who makes you complete, whole, and fulfilled. I am one of those, thanks to her.

Managing the pain

Last few days have been totally overshadowed by major pain issues. So much so that I had to cancel an MRI scan that was booked for Thursday morning. Wednesday evening it came to a head when it took nearly an hour to get into bed because every movement was sending excruciating pain to my right arm and shoulder.

Having got into bed and relaxed I went to sleep. 3 hours later and the morphine had worn off, I woke to even more pain: and every slightest movement resulted in waves of pain. I was stuck! and couldn't get off the bed or stop the pain.

Finally we had to call an ambulance, and the two paramedics who came were brilliant. Unable to physically lift me because of the pain, they administered Entonox, which within a few minutes had enabled them to lift me into a sitting position, and then get off the bed. Entonox is the good old old nitrous oxide and oxygen mixture often used in childbirth to manage pain. Worked for me!!! I wonder what all the fuss is about giving birth: with entonox on hand, as Aleksandr the Compare the Market meerkat would say "Simples!"

So, the rest of wednesday night spent sat in a chair not daring to go back to bed. Struggled through Thursday with a visit to the GP who changed some of the tablets I take but with little effect: and as the pain was still bad last night, I sat up in a chair the whole night.

Being tired is bad enough but being tired and in pain just compounds the whole thing. This morning, through the oncology nurse at the hospital we arranged a home visit from a member of the Pain Management Team. A quick review, and a new pain regime which is already in place which might take 48 hours to work fully, but I have a good feeling about this because they are experts, and are already offering all kinds of additional help and advice as well as out of hours numbers, and further suggestions regarding the overall treatment of the cancer based upon the fact that the biggest issue right now is the pain. They have pushed a new prescription request through to the GP and that will be sorted this evening so that it can start working over the weekend.

Thank goodness there are some people in the NHS who know their job, and that the comfort and well being of a patient is of pretty high importance in a treatment regime. Compare that to the receptionists at our local surgery and in fact there is no comparison!

  

Confirmation of what we thought

Today we had the review with the consultant about the results of the procedure, all the tests and scans, and an indication of what treatment we can expect. So let me try and explain what they found.

There were in fact several tumours in the bladder. One of those has grown into the wall and created what's termed a "blow out". When this happens the cancerous cells change into a hard solid tumour and have become a type of cancer called "neuro endocrine"cancer. This is malignant, and fairly aggressive. At this point the next step is to whether it has spread into other parts of the body. There are 2 confirmed places which are the right humerus (bone in the upper arm) and the 1st lumbar vertebra. The consultant showed us an x-ray of the upper arm and the cancer has compromised the bone mass in the centre of the humerus. This can create issues such as weakening, and possibility of fracture. There is also a couple of "spots"showing on the liver, so an MRI will be done to ascertain more about that.

The plan for treatment seems to be chemotherapy: this will be done initially over six 3week cycles totalling 18 weeks. There will be a load of assessment before that, and effectively we have been handed over from the Urology team to the Oncology team who will now arrange all the chemotherapy and support. I have been assigned a Macmillan oncology nurse, who is a specialist and becomes my first point of contact. She is there to answer questions, deal with concerns, and provide access to other teams and specialists as required.

Once the cancer has gone "secondary" ie spread elsewhere, the treatment is what is called "palliative" rather than "curative". Palliative basically deals with management of the symptoms rather than removing the actual cause, so that is the route down which we go.

Having said all that the consultant told me that neuro endocrine cancer should respond well to chemotherapy. The fact also that chemo is administered via the bloodstream enables treatment to be received by the whole body, unlike radiotherapy which is more location specific.

I have to say that the 3 weeks since the operation have been the longest three weeks of my life! So many questions, and very few answers. We had our fair share of tears, and until those concerns were addressed it's natural to think the worst I guess. Provided the cancer responds to the treatment I expect to be around for a while yet!