Week Two: Hospital Visit

1)      Brief overview: I had thought that week two might have resulted in some clarity about the nature of the tumors and the relevant treatment. However, this was always going to be a false dawn. I understand that there are hundreds of different types, grades, and that there are essential and time consuming processes that have to be covered before getting on to definitive’s. On one level I had already considered the prospect of ongoing, long standing uncertainty in relation to the lesions for the rest of my life, and the need for acceptance of the feelings of worry that inevitably coincide. I am delighted to be in week two, and continue to take each moment to moment, day, week at a time. I am practicing the development of my Awareness of these moments.

I saw magpies on the roof of my hospital

I started this blog to rebalance the criticism to which the NHS is subjected, but to do so I must give a full report of my care: the good and the bad. On 4^th January, I was given the date of Friday 11^th for my biopsy. I was to arrive at the hospital at 7am that day, and was to receive nil by mouth from 12am the night before to after my operation. I arrived at this time, and was kept at the hospital, sitting, waiting. A patient patient. Visiting hours finished at 12. Delicate negotiation was required, but my wife was eventually allowed to stay with me. It was not til 7:30pm that I was told I would not be having the operation that day, and that I could have something to eat (which arrived around 8pm). I was to be kept at the hospital overnight, and it was my impression that the operation would be carried out the next day. However, at half past four today, I was told I could go home, and return tomorrow (at 10am). At no point in this process was I given any reason for these delays, and I do feel that I could have been better informed.

I appreciate that hospitals and specialty services are under constant states of unexpected demand, and that the nature of health needs are increasingly complex and multi dimensional, requiring expertise from across a wide range of medical specialities. These are in turn all dependent on each other forming a complex puzzle, which is shifting according to response to treatment and changes in conditions of the patients and their needs. My process is thus unlikely to be a linear one. Instead, the shifting sands I face lead to frustration and tension. Nevertheless, I trust in our magnificent NHS, who I continue to believe are relentlessly striving to save life whilst minimising distress and complication. My brain biopsy is likely to occur this weekend. Subject to whatever crisis occurs in the region.

Treats I enjoyed on my return home

1)     Main Symptoms

i)                 Visual disturbances:

These persist and are perhaps currently the most intrusive symptom. They continue as previously described manifesting as a pulsating area of rainbow coloured lights in my left temporal region, the colours of the rainbow. They tend to sweep outwards or from below going up and over my head. Today as I returned from hospital it was is I was noticing Christmas Trees in people’s houses or decorating the local community... Distortions in the known environment. Mirroring of spaces, giving the impression that areas exist that I know on one level cannot be so. Familiar room /wall space seemingly larger and more spacious. Which can be highly anxiety provoking and disorientating?

ii)                Pain-Discomfort as a dull ache:

 I am convinced the prescribed medication is helping and I have the option of “as needed” painkillers as prescribed. I am using Common Sense as much as possible. I don’t expect to be pain free with lesions shunting bits of my brain out of sync, leaving other parts to compensate

iii)              Fatigue- Tiredness:

 This week I have made sure to rest as able and being a neuro-surgical ward there are specified down times where intrusions (visitors/Mobile) use is discouraged. Common sense.

iv)              Unsteady gait; Disorientation:

 Taking things steady, holding on to things.

v)               Memory:

 Lots forgotten, therefore I keep a confidential journal, I have to note down names of the many people I come into contact with, but do not intend on including them in this blog.

vi)              Constipation:

Due to change, reduced mobility etc, I try to maintain necessary fluids and fruit, subject to advice and guidance from professionals. Much of it is Common Sense. Having been on “nil –by – mouth” in expectation of brain biopsy, I may have lost some excessive fat: a bonus!

vii)             Anxiety: I try to be aware of my normal breathing, focusing on an aspect of the breath. Seek guidance from a suitable professional on this matter.

2)     Coping: As previous. These are only personal thoughts & expediencies you must take responsibility for seeking appropriate medical advice for your own symptoms. I do not suggest any of my coping behaviours in any professional capacity or sanction any of the content. I use common sense combining advice from professionals, NHS Evidence: NICE /Direct. I mean no harm

Routine: As previous. Thanks to the ward staff for accommodating me with my routine.

Which includes some standing yoga, Meditation and Activities of daily living including rest.

I am fortunate to have been given some time ago mp3 player with headphones, thus limiting disruption and disturbance of my family at home and my fellow inpatients when on the ward. More detail on the specifics of the coping strategies as we go along & subject to technical support and permission from authors I might try to upload some recordings of myself in my home.

Confidentiality: Assurance I have not and do not intend on making any recordings whilst in inpatient settings. And will do my upmost to prevent any information indicating specific fellow patients, staff .

Dinner cooked by J.

3) Contacts: Support from fellow patients & their families in addition to my own

4) Today’s Personal Positive NHS News: All week I have personally witnessed and received fantastic hands on caring/clinical /support from those looking after me and my fellow patients. I would encourage anyone who does not to arrange and plan a time to speak to the appropriate person at the appropriate time. In an honest, Common sense manner. Bear in mind my ratio (see previously) and adopt a non judgemental, non critical compassionate stance (more on this at another time).