Monday 30 July 2007

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!

Monday 9 July 2007

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.

Thursday 5 July 2007

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...?

Monday 2 July 2007

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......