I'm Still Here!

Glad to see everyone's keeping themselves amused in my absence!

Been away for a few days break inbetween treatment and before Michelle starts her new job. Originally we were gonna go up to my parents for a few days but with the crap weather Michelle needed some sun. After consulting the Royal Marsden about whether I would be OK to go abroad for a short break they were fine with it. I'd go for a blood test on the Fri, if I needed a transfusion then I could have one on Fri and then could go away on Sat. So we booked 5 days in Sardinia to fly out on Sat. Fri comes and the Prof. calls with m y blood test results. "I strongly recommend that you do not go abroad, you're platelet count is v.low, as is your white cell count. You are vulnerable to spontaneous bleeding and infections". So, I'll pop in a for a transfusion then? Er, no, there not that low you need a transfusion and they wont take effect for a few days!?! His concern was whether my count had bottomed or was going to go even lower. I suggested having another test on Sat and if it was higher were we OK to fly out on Sun. He was more relaxed with this, probably based on the fact that it wouldnt happen.

Had blood test in Reading on Sat morning. Nurse said she ran the tests 3 times to try and get a higher reading but it was lower than Fridays results. Had a long chat with consultant oncologist who said she was normally bullish about chemo patients having a holiday but in my case really could not recommend it. If I started bleeding internally or picked up an infection I would need immediate hospitalisation, without which I could die! Mmmm, so its a risk and consequence issue. I'd reckoned the risk was probably low, but consequence could be quite high. I figured that the advice of 4 doctors was a little too much even for me to ignore, so we cancelled.

As a fall-back we decided to go down to Devon for a few days. Quite how long it would take an ambulance to get to Woolacombe if I needed one, I cared not. We floated (literally) down the M5 wondering whether we would ever see some sun. Well, we got 2 days of sun, 2 of rain and no spontaneous bleeding or infections........so should we have gone to Sardinia!?!

Back to RMH on Friday for the start of my next cycle. As usual they weren't ready for me and my drugs weren't ordered so I had to wait 4 hours just to get on my first drip! F****** useless!

One down...a few more to go

Well, first chemo session went according to the Royal Marsden's usual efficiencies. Arrived at 10am for appt with the consultant, eventually got to see him by 12 whence he tells me that he need to order the chemo drugs, which will take another 3 hours to get ready, then about 4 hours to give. When the drugs eventually arrived on the ward they then realised no-one had gotten me to sign a consent form, so I had to wait another hour for a doctor to arrive to go through the consent form with me. I promised I would just say 'yes' to everything. Eventually left the hospital at 7.30pm

Been feeling pretty rough all week - been raiding my supplies of anti-sickness drugs I stored from last year and OD'ing on immodium. Not sure if it is actually worse than before or you just forget how rough it was previously.

For the techies out there I'm on two new (for me) drugs, gemcitabine and oxaliplatin, which together have been used in a few studies on germ cell tumours that appear resistant to standard chemo drugs. Each cycle is 3 weeks - 2 weeks as 1 day outpatient, then one week off. Current thinking is I will have between 2 and 4 cycles depending on how I cope before starting high-dose. Not looking forward to it.

It pays to argue!

Well after arguing for 2 weeks and escalating the issue the health insurance company have finally backed down and will now cover my pending treatment, as well as the stem cell harvest I've already had. It pays to study the small print of exclusions - they were trying to class my stem cell transplant as 'transplantation surgery' which is an exclusion on the policy. Well, taking some blood cells, chucking them in a freezer for a while, then re-injecting them at a later date is hardly a heart transplant is it! Makes you wonder how many people either accept their decisions, or are not well enough to argue the toss?

Thanks for all the donations (not) - I'll repay them back shortly, with interest of course...unless the chemo affects my short term memory..... in which case I'll forget.......................what was it I was gonna forget...?

Chemo here I come...!

Finally got the results from the histology report - which showed that the other bit of suspect tissue removed by the surgeon was also cancerous. The result from my PET scan last Thursday showed that my hip is clear but the nodule which first showed up on my pre-surgery CT scan is also an active tumour, which explains why my tumour marker is still rising.

The fact that there have been 3 known lung tumours tips the balance from surgery back to high-dose chemo - I am booked in to start 2 cycles of normal dose chemo this Friday (on a day case basis, so no overnight stay) with high dose chemo to start thereafter.

I was gonna say thats another summer missed, but looking outside......

Ouch....that hurt

Just as I was about to consign the painkillers to the bin I think I overdid it and suffered.

Been struggling sleeping the past few days - whether its morphine withdrawal or the excitement of Tony Blair's premiership coming to an end I'm not sure. Decided to break-out of the house and take Rufus for a walk (he's a dog, in case anyone wonders whether I do care in the community) - surely the exercise would do me good?

Anyhow, 'bout 11.30pm last night I'm suddenly in agony, struggling to breathe and Michelle's debating whether to wake the neighbour and ask him to drive me to hospital or whether to call 999 - while I'm overdosing on liquid morphine. The thought of an ambulance turning up seemed too much of a drama and would increase my carbon footprint, so we called the doctor's out of hours number.

A scouse doctor called back in 10 mins. He probably thought he'd called an 0898 line by mistake when I answered with heavy breathing. A few random questions later and he seemed confident my lung hadn't imploded.

"Can you come down to the hospital?", he ventured. "Whats the alternative?", I enquired. "Well, I'll give you a call back in an hour and see if you're OK". "OK, but can you ring quietly, we'll be asleep", I asked.

By the time he rang back the morphine had taken effect and the pain had all but gone, but boy had it been bloody painful - as painful as it ever was in hospital. Looks like I should be taking it easy and stay on the tablets a bit longer.

Had another PET scan today - so I'm radio-active for the evening. If you look towards Newbury tonight you'll probably see the glow. Back for the results tomorrow.

Which is worse.....??

Two bits of bad news in one day and I'm not sure which is worse?

1) My tumour marker result is back up - it was up to 137 on Tues and I'll find out todays result on Monday. Scheduled for a PET scan next week but looks like I'm heading for high dose chemo.

2) The insurance company won't cover me for the stem cell transplant, despite the fact that I've already had the harvest - which they didn't authorise due to the Royal Marsdens ineptitude. This means that I will have to become an NHS patient....shock/horror!!! The meals on the private ward are bad enough - imagine how bad they will be on an NHS ward. And I bet they won't have wi-fi. I fully understand if no-one wants to come and visit me on the NHS ward.........it will be full of ill people.

Good news....so far

Well feedback on the tag board suggests that some of my fellow northern pals are not too au fait with medical parlance and 'treatment by numbers' - which is surprising when they're still painting by them!

Just got my most recent tumour marker result back. It's 109 - which for those who can't be bothered or just didn't understand my previous post is relatively good news thus far! It would appear to have dropped as expected if the tumour removed was the only cancerous source.

Early days. I've been here before (twice!) - there could still be other seeds growing which are still too small to be detected.

Back to the waiting game........will Big Sam actually buy any defenders?!?!

Donations welcome!

Had an appointment at the Royal Marsden hospital on Friday to review where we are up to. I was aware that monitoring my AFP tumour marker is going to be a key indicator in determining what happens next and when. The first thing you always do when arriving at the RMH is to have a blood test. What is frustrating is the fact that they don't have the results available for when you see the consultant. This time it was Professor Horwich who confirmed the obvious - they would await the outcome of the AFP marker level from my latest blood test (should have it today - Monday - hopefully). He was unaware of the additional tumour on my right lung which showed up on my pre-surgery CT scan - he hadn't seen the scan from the Royal Brompton. They are also awaiting a pathology report on the tumour and the additional tissue removed during the op. Apparently the initial report suggested that the germ cell tumour was also exhibiting signs of having transformed into another cancer type - the tisse has been sent to the RMH for further analysis. Knowing the exact make up of the tumour may help them define a more appropriate mix of chemotherapy treatment.

My recent tumour marker results have been 20 April - 160; 4 May - 182, 18 May - 265. Surgery was on the 29th May, and todays blood test was 10 days since surgery. In theory my AFP level could well have been up to 320 before surgery. If the tumour they removed was the only cancer source then by today the AFP level should have halved to 160 'ish. I'm not holding my breath for the result on today - even though it would stop my chest from hurting.

I have a follow-up appointment booked for two weeks (22nd June) but knowing that if I have a blood test that day they won't have the results to review I suggested I get a blood test done in Reading a few days earlier, so I do have some results for the meeting. What a good idea!! Why didn't I think of that. Oh , I just did!

I'll be coming around cap in hand shortly after the insurance company advised they don't cover stem cell treatment, which means I will probably be charged for the stem cell harvest I've already had! I'd consider a sponsored run to raise money but I can only just walk!

Good to be home

Been a painful week back home, but its good to be mobile once again. Its suprising how much more you move around being at home compared to being sat in a hospital room where your bed/loo/lounge-chair are within 10ft of each other.

Still dosing up on painkillers - 40mg morphine sulphate twice daily, 1000mg paracetamal four times a day, gabapentine three times a day and Oramorph (liquid morphine) as and when required - plus 4 types of laxatives to keep me irregular. The wound is healing nicely, in fact I can't feel it most of the time, its more the front of the ribs - probably where a bloody great clamp yanked them apart! I'm tempted to give up the painkillers for a few days to see how much it would really hurt without them. No pain, no gain.

Michelle's doing an able job with the household chores, i.e running after me, washing the cars, cutting the lawn (she hasn't quite grasped the fact that you need to overlap each run slightly so we have a rather strange effect of thin strips of tall grass separating the normal stripes). I'm supervising from a safe distance.

Get 'em checked!

A serious message to all you chaps out there.

If only she'd checked mine, life would have been so much different......

PS. Kylie's been relegated - type Kylie in search box top left