Ok, so the elation of the weekend and the guys getting to the summit of Nevis whilst raising such a fantastic amount of money, is over cast slightly by the goings on of my cancer treatment in the back ground. As usual, I was dragged into the circus with the clown music running through my ears as usual as things happened and people throw drugs and procedures at me. Not one for clouding the facts and as I have always said I like to get the details out so that people can either relate laugh or learn from the goings on of a cancer sufferer.
On Monday the 10th I was due for my 5th cycle of the Herceptin combination and was optimistic about the potential outcomes of the treatment. Dr Yosef however was in Egypt and on this journey I would be flying solo. We had met for consultancy on the previous Thursday and all seemed to be going to plan, however there was was a nagging doubt in my mind about what would happen if something went wrong. Anyway we set off that morning firstly to drop off at a local FA to sign some papers and then head onto Ross Hall. The FA I was meeting was moving offices and Carol drove me to Cadzow Street to look for said offices. Unfortunately on the way there, the sun in Carol's eyes affected her perception and she ran into a kerb leaving the car with a gash in a tyre which I tried to save with the repair kit but it was obviously too far beyond repair. Stranded we firstly dealt with the paperwork and then tried to piece the car back together. I remembered that the car has 2 emergency buttons on the roof. One is for medical emergencies and the other is for assistance. I accidentally pushed the medical emergency button and got through to command and control who reckoned we were on our roof unconscious and decided to send the police out for investigation. At the time my phone had synced with blue tooth so no matter how loud I shouted at the control centre they couldn't hear what I said and sent out the blue and twos anyway. As I was late for my appointment, I phoned Darren who came to my assistance and took me to Ross Hall, leaving Carol in the car to deal with the police, road side assistance and getting the car back on the road.
Meanwhile Darren dropped me off safe and sound at Ross Hall and I checked in although I had left my goody bag of stuff in the car with Carol so had no change of clothes or iPads etc. I went to the chemo room and lay on the bed waiting for something to happen. Eventually I was attended by Alannah who started to wire my port-a-cath up. As usual the process of taking my vital signs started and all of a sudden there was an issue. My temperature was sitting at 38 degrees which is borderline for the chemo infusion. At this point the circus went into full flow as Dr Yosef being in Egypt wasn't on hand to advise what to do. It seemed that all the staff disappeared and with vain hope took my temperature every so often to see if it had miraculously reduced to a manageable temperature. At some point the results for my bloods for the day also came back. I got to hate this process I must say, as I was asked before every cycle to come in on a Thursday and give bloods which would be discarded and fresh ones taken on the Monday when I arrived. I couldn't see the logic other than depleting me of more blood. Anyway the results came back and it showed that my haemoglobin was very low. So there I was waiting for chemo whilst two indicators suggested that things were a no go and my oncologist was in Egypt. At this point I was advised that Dr MacDonald was covering for Dr Yosef and that we would need to wait for him to make a call. Unbeknown to me Dr MacDonald was in surgery in Ayr and would not be on site at Ross Hall until after 6.
At some point in the day Carol arrived after having saved the day with the car and a couple of new tyres. Once she had caught up with the goings on we both sat back and waited for the eventual coming of Dr MacDonald who appeared as prescribed after 6pm. He sat in front of my bed which was raised to the max. He sat in a very small low seat and felt miles away from me, holding my bulging purple folder with all of my medical records in it. He tried to flick through the tomb of work but I could see there was very little that he could possibly take in as it was crammed with medical fact. Eventually after flipping through pages left and right he said to me 'I don't think it would be wise to send you home'. As he was the doctor, I tended to agree however I had a sense that this was someone shooting from the hip. He followed up with 'If your temp is down in the morning we will do a transfusion'. With that, the deed was done and I was all set for another night in the big top. All that was left was for me was to move room from the peaceful sedate 1st floor to the madness of the ward and the 2nd floor. I half joked with the nurses that I hoped that they had arranged an upgrade to my room away from the room I usually get. The silence suggested that I was on my way to the normal rooms, the ones left for waifs and strays, located directly outside the kitchen.
We got to my room, it was the the same room which I had spent 4 days before when I had my oesophagus cracked. 'Oh joy' I thought but I just got on with it and got into bed. This time Carol had been sneaky and brought ear plugs so I knew I would be able to get some kind of sleep. I was wrong. Because of my temperature I was monitored constantly and eventually around 6am my temp fell to bellow 38 degrees and at that point a troop were sent to collect bloods and match me for a transfusion. At this point I thought I would be out in a few hours. How wrong I was. I had the transfusion at around 6pm for whatever reason I do not know. I was glad when it finished around 8pm and I was looking forward to going home but the circus kicked in again as nobody knew how to unplug my port-a-cath and I was left hooked up to the machine. One of the head nurses came by and offered me two choices - I could wait for Sheila to come back in after 10pm and un-plug me or I could go home with the needles attached and come back in the next day to get my wiring sorted. I decided to wait for Sheila. It was a rubbish night and the winds were howling but the thought of a repeat trip to Ross Hall the next day and a night lying with the clamps in didn't really fill me with joy.
We hung about and eventually Sheila turned up and unplugged me. Carol and I were quick off our feet and made off to the car park where we sped home on the M74 buffeted by the howling winds. It was past 11 when we got home and decided to pour ourselves straight into bed and I was out like a light in no time at all.
I was told that I would feel like a different man after the transfusion, this was not the case. The over run of no chemo had kicked me in the head and I was feeling the affects badly. I was in deep pain suffering from the bone cancers which I felt were completely taking over by this point. We had organised with the hospital that we would go home for the week and try the chemo again on the following Monday. In between times we visited the hospital to give blood to make sure that the haemoglobin counts were ok, which they were. We actually waited for the results as we were fairly apprehensive about the outcome. We also took some chocolates down for Sheila for coming in so late at night to unhook me. With the positive news we went home again and lived through the torture of the weekend where I suffered a lot of pain, waiting for the chance to go through the chemo cycle again on Monday.
Monday came but not quickly enough. By this point I was really struggling pain wise but I was determined to get the 3rd Herceptin cycle completed in order that we could see what effect if was actually having. It was a normal chemo day apart from the fact that I was depleted and sore. We went to our room changed and got ready for the infusions. I was hooked up and given all the good stuff that I never reacted to the last time and things seemed to be going well. Then came the Taxol infusion that I reacted to the last time. Mari had stayed in my room during this infusion due to the previous reaction. As soon as this hit my body I knew things were wrong. I could see stars again and then my breathing stopped. At this point I waved to Mari who knew what was happening and before I had a chance to think about it, there were half a dozen or so nurses in the room scrambling about trying to get me to breath again. I had showed the same symptoms as before, a toxic shock reaction to the Taxol combination. Again with Dr Yosef being in Egypt there was nobody there to say that this path or that path should be taken however Sheila advised me that in the situation where you react twice to a given drug, all bets are off and there is no chance to try that combination again. Carol and I were obviously gutted at this point but had nothing other to do than change back into our going home gear and literally go home. This is really the last conversation that we have had with Ross Hall, a sense of the end and a sense that we had tried everything that was possible. Sheila organised a session with Dr Yosef when he got home but people were fairly unsure when this would actually be.
When I got home on the Monday night, the pain absolutely intensified. I was vomiting blood and felt that there could have been movement in my stent. Carol and I discussed the prospect of bringing in the district nurses and eventually I capitulated and the troops were sent for. The nurses arrived very quickly around 11 after Carol had filled me full of morphine with no response. We have a "just in case" box in the house that has the special stuff in it, and that is where the district nurses headed in order to settle me down. Whatever they did it worked a treat. I had a slight war of words when they insisted about putting a short line in - I won but they just jabbed me instead. Anyway I at least had a peaceful night sort of.
The next day Jo from MacMillan came into see me. Jo was surprised with my condition and was also very worried about the vomiting of blood. I didn't get a choice this time with the short line, it was immediately administered along with appropriate drugs to stop me from throwing up, calm me down and stop my pain. Jo also brought in Dr Ewan and there was a good discussion about my pain management with some more prescriptions being brought to the table.
So a week later after all of this, I'm too weak to receive anymore chemo and coupled with the fact that the chemo really isn't working has driven us to the conclusion that we will stop the infusions. Dr Yosef has organised radiotherapy to target the main hot spots at this point, however there is the chance that I may not be strong enough to attend the session next week.
Jo and the District Nurses continue to visit and keep checks on me at the moment whilst I try and regain strength. This feels like the end but as I keep telling people life is a continuum and the next step is just the next step - onwards and upwards.
