Wednesday 17 February 2010

The blood in the tales

Hospital days

Hospital appointment days are mainly just like fully given to the hospital, worse still if the appointment is in the afternoon, you probably can do nothing the whole morning waiting for it and once over you are too exhausted to do much with the rest of the closing day.

Today, I met with the main consultant and superintendent of my treatment programme, he is one of the head honchos in Internal Medicine as well as an academic professor in medicine, I read he was working on monoclonal antibodies for his PhD in the 80s – I knew enough about that research to be impressed.

The correct numbers

This was my second meeting with the consultant after I was discharged from hospital but before I met him there was the basic routine of checking my weight which by reason of my shoes and clothes was boosted by 2 kilograms to just over 70 kilograms, my blood pressure and pulse read within the limits of very normal.

I have decided to put no faith in this portable wrist blood pressure meter toys, I had one before I fell ill and it always gave readings that I was hypertensive, it got to a point that I was beginning to believe those readings until the readings at hospital told a more accurate story of normalcy.

The dangers of trying to handle ones medical needs by self-medication and the use of portable customer gadgets in my case was only so evident – some things are best left to the professionals and their well calibrated and accurate machines operated in a supervised setting.

Soon after the measurements were done, I saw the nursing expert who handles the social and emotional consequences of a diagnosis of serious illness and what needs to be done, I remembered her from when I was on admission, before I was discharged she went off on a 5-week holiday to Nepal, she asked to see me after I had met the consultant.

Looking good reading good

The consultant came to get me and was quite impressed to see how I walked and commented on the considerable improvement he had noticed, I agreed that a lot had happened, the lesions had all disappeared by December and though there is still some skin shedding everything feels fine, he later examined my feet.

He felt my treatment was going really well, from all the results that had been presented in the blood tests, I was responding very positively to all my treatments including the chemotherapy.

Significantly, he noted that not all the results he needed from my blood tests had arrived, those tests could take up to 2 weeks to be fully completed and results presented, he was quite curious about what they would reveal.

The other effects of chemotherapy

He said the haemoglobin, cholesterol, liver function results all looked fine but for the fact that my immune system still looked suppressed, the numbers were not encouraging but the percentages had gone up by 50% percent.

This lead to his wanting to curtail the chemotherapy sessions because whilst the evident cancer had disappeared it also had the effect of impacting on the immune system leaving one possible vulnerable to infection.

It was then that I learnt that additional chemotherapy sessions had been scheduled, that was something of a blow to me, for 2 months I believed that I will only have 8 chemotherapy treatments which would end on the 1st of March, it was the basis on which I had made may arrangements including trying to get back to work.

I deserve to know all

I just could not bare the thought of sitting through even one more session after the 8th chemotherapy therapy regardless of how well I was responding to the treatment, I needed a Ground 0 from where I could begin to get on with rebuilding my life – my consultant fully appreciated a prospective employee could not have chemotherapy sessions waiting in the background at an interview.

My consultant for medical reasons as the overseer of my treatment was now more interested in reading better results from by blood with regards to a vastly improved immune system, he would chat to the oncologist about it.

The next meeting with the oncologist is next Thursday, I also intend to make it clear that I am do not intend to continue on interminable chemotherapy treatments that do not have a clear idea of when it would be concluded – for crying out loud – I am entitled to know how much I have to endure without being tortured by trickle-down information.

It will be 8 and no more than that, I am NOT emotionally prepared and I do not intend to prepare myself for any more than that.

Maintaining the status quo

The readings from the blood tests also indicated we would not change any of the medication I am on till when we meet in another three months, meanwhile, when the other blood results arrive, I will get a call depending on what it all means.

So, another box full of prescriptions are going to delivered soon, this also provided the opportunity to talk about the eye irritation I was having for which I received a gel and the sudden attacks of acute claustrophobia I had about a month ago – the panic attacks as he called them might be related to pain management but if they returned I was advised to seek medical help.

Pain management was left to me, I could decide to halve the medication and consider the effects whilst I try to wean myself off the pain medication – we would just have to see how that pans out.

With all that done, we scheduled new appointments, completed the prescriptions, shook hands and said goodbye.

Miscellaneous matters

The nursing assistant was busy, so I had to wait for a while, it was then I learnt that I could find a full range of support services through the hospital if required, something I never knew before.

We talked about her trip to Nepal where she did a lot of hiking and mountaineering, touching on the subject that Westerners seem to have seriously organised working lives that they chose to go on busy chaotic holidays as a form of relaxation – an interesting perspective I’ll say.

After that, I called in on the priest, we did not have much time to chat, but I gave him the basics, I have a proper appointment booked to see him when I return to see the oncologist next week.

Whilst I was quite happy with the general results, I was taken aback by the issue of the still suppressed immune system and the additionally planned chemotherapy treatments – I expected a lot from today, I am grateful for what I already have and thankful for how far we have come – hospital visits end up as long tales and the detail is almost always in the blood.

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