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!

Life-changing Moment

There are many days and dates, and many reasons that those dates stay with us through our lives: when we get married, the birth of our children, a memorable event and so on. For everyone those moments are different, and we remember them in all kinds of ways:with fondness, love, happiness and joy. We remember bad times too, sometimes more clearly than the good ones. Today was one of those days for me.

Shown into the day surgery ward with 3 other guys, we were assigned beds and the regular checks, temperature and blood pressure, taken by the nurses as they prepared us all for the minor procedures we were about to have. The anaesthetist came and saw me, ran through the usual questions, and said he would see me before the op etc..

About 8.30 the consultant, Mr Murray arrived and sat on the bed. And here was the bombshell which i did not expect. He explained the procedure then told me that 98% of these type of growths were malignant but he would know more after the operation. However, at this time he already knew what was suddenly dawning on me: this was not going to be a simple cut it out and follow up. He told me he would want to see me in 3 weeks time and he would have more information then, and that he was going to book me a bone scan as well.

Furthermore he told me that there is a high incidence of bladder cancer in smokers, and yes, I had smoked all my life, untill last October when I discovered e-cigarettes and effectively I hadnt smoked for 3 months and was just using a rechargeable electronic cigarette. More of that later.

My mind was racing: all the usual stuff, 3 weeks to live, how do I tell the wife, allsorts!. Murray asked me to sign the consent form, and said he would come see me this afternoon. In a short while I was being moved to the operating theatres and woke up in recovery an hour or so later, very sore but other than that as OK as i could be.

Suddenly the conversation with the consultant came back to me, and once I was back in the ward I was alert enough to send a text message to my wife explaining in a very short version what he had said. I knew i couldn't phone her at that time as I would have ended up in tears, and so would she. I had to call someone so I rang my sister, explained a little of what had gone on, and asked her to tell my mum, who lives next door to her, and to give my wife Jenny a call, to make sure she was OK.

The plan was that Jenny was coming to collect me later that afternoon, provided I was allowed to go home. Suffice to say, even if I wasn't she was coming anyway! Still all the bad scenarios were running around in my head, and they wouldn't go away. Jenny texted me to say she had left home and was on the way to Canterbury: about 30 minutes drive. I will explain more about my wife in a separate post but you need to know she is disabled, after a stroke some 6 years ago, and walks with a stick. For her to walk any distance is immensely tiring and a huge effort. so an hour after she left home and she hadn't arrived i was starting to worry. Canterbury hospital, as they all are these days becomes very difficult to park, and there seems to always be a lack of disabled parking spaces. My cynical mind says the reason is that a disabled bay with free parking is not a revenue stream, so only provide the bare minimum required, and get money from all the other spaces. The layout of the hospital is one long corridor: she parked by outpatients, in a disabled bay, and then walked. This walk is probably some 400 yards along this main corridor, which for my wife is like running a marathon. 45 minutes it took her, and she finally appeared round the corner looking shattered. God! I love this woman so much!

We had a cup of tea (in our world tea is the great fixer: keep your alcohol and all that, PG tips every time!

Then without warning the consultant arrived: he stood at the end of the bed and leafed through a load of notes, almost as if he was trying to find the right words. I held her hand, and we listened.

there was not one but several tumours in the bladder, one of which seemed to have grown through the bladder wall (not good!) and he had taken several biopsies, and removed most of the other ones. He told us he had booked the bone scan, and that he woule the biopsy results in 3 weeks when he would see us in his clinic, but suffice to say, "you have a substantial tumour that is not going away. Once we know more it will enable us to determine the best treatment, They discharged me and we drove home in a state of shock.

A simple and painless procedure...

A cystoscopy is a widely used procedure that involves, not to put too fine a point on it, inserting a flexible tube with a camera on the end into the urethra. The tube is then passed up into the bladder which allows the doctor to see the inner wall of the bladder. When they send you the appointment they send a very informative little leaflet from which i quote ".. a simple and painless procedure". They lied.

Think of this: the flexible tube is wide enough to contain the camera and a light source. That means it's several millimetres diameter, and to be honest, unless you're hung like a donkey, which I most certainly am NOT, it friggin' well hurts!

I have to say that it is an extremely odd feeling, which unless you have experienced it is very difficult to describe. I will add that one male colleague at work, on hearing I was having a cystoscopy, at in my blissful ignorance at that time, said "yes, I had one of those once", and walked away with a smile on his face. Now I know why!

So, the upshot was that the doctor found what appeared to be a small polyp like growth inside the bladder. "That's what we think is causing the bleeding" he said. It is certainly an odd feeling seeing a crystal clear real time image of the inside of your bladder on a TV screen. "We will book you in after the New Year for a similar procedure but done with a non flexible tube (double ouch!) under general anaesthetic."

The booking was made before I left, and set for 16th January. At this point there was no drama. a single small growth inside the bladder, would be removed in January and while it would need to be sent for biopsy, in 99% of cases the whole growth is removed, and while there is then a need for regular check ups over time that would normally be the end of tumour problem. The worst thing I had to look forward to was a cystoscopy every few months.

Christmas was upon us soon enough, and then the New Year and in pretty quick time the day of the operation was here. Arrive at 7.30 am they said, and so I did.