I Can't Afford to go to Work

I Can't Afford to go to Work

I have now been off work for almost two months. At first, it felt really strange. After a while, I started to enjoy the life, despite the reason and the niggling worries, and the side effects and ..... 

It took a little while to realise that I was suddenly accumulating money. This seemed very strange. Why did I seem to have more money OFF work than when I was attending regularly, working sixteen hour days, seven day weeks? surely there was some mistake?

I have said before that my brain is not up to much at the moment. It took me quite a long time to work it out. The reasons, as far as I can ascertain them, are:

1. Petrol: I'm not using any!
2. Snacks/lunches/coffee: I'm not buying any!
3. Trains: I'm not travelling, so the fact that I forget to claim my expenses and, anyway, never claim them all, is not eating into my bank balance.
4. Taxis: I am not taking any (I sometimes do at work if I am running late or feeling idle, and I never charge work for those)
5. Parking: I am not parking in places that charge me e.g. hospitals.

Now, I can see that some of this is my fault, and that I need to get much better at taking all my own food and claiming everything that I spend but, to be honest, that takes so long, and is so tedious, that even after this revelation it is unlikely to happen. It seems to me a little unfortunate that it actually costs me so much to go to work. I must admit to feeling rather hard done by that my hard-earned dosh (and it is hard-earned - I work many more hours than I am paid for) should go to subsidising work. I don't want to sound like a scrounger, but I think I may be a little more careful in future. After all, when I get into debt, I have to pay the interest rates. From here on in, I'm not prepared to do that. Sorry all.

The Importance of Food When You Are Ill

The Importance of Food When You Are Ill

Today, I shall expound on the self-evident, and demonstrate the old adage that 'common sense is not so common'.

As I have been moaning at you all endlessly, for the last three days I have been feeling very tired. I put this down to the fact that the chemotherapy was really starting to kick in, and took myself off to bed. It never occurred to me to wonder if any other changes had occurred in my life that might have had a bearing. In fact, however, I now realise that there had been other such changes, or rather, one, resulting in some amendments to my lifestyle. 

As I had probably mentioned, my Girl Thursday stayed here for the nights of Thursday, Friday and Saturday. This was to give me peace of mind, but it also resulted in a number of other things:

1. she brought me breakfast in bed at about 09.30 
2. she made me lunch in the middle of the day
3. she talked to me, thus making it impossible for me just to fall back to sleep.

Come Monday morning, on my own, and with my cleaner also away for the week, I did not bother with breakfast. I fed the cat, went back to bed, and slept for another couple of hours. When I was finally dressed, I decided I could not be bothered with much. I settled for a cup of tea. Some hours later, feeling slightly off colour, I ate a piece of bread with nothing on it, and returned to bed. You catch the drift? The pattern repeated on Tuesday and Wednesday. By yesterday, I felt distinctly under par. Which is when a little voice in my head said 'Don't you think you ought to eat something sensible?'

I heeded my own advice. Although still very tired, I felt much better. This morning, I instituted a new regime. After feeding the cat, I made myself a sensible breakfast (muesli, berries and yoghurt, if you must know) and took it back to bed with me. I also ensured that I was sitting up in bed by nine. Today, I feel much better.

Now, I am probably extrapolating beyond my data, but I have come to the conclusion that:

1. I need to eat regularly (I think they actually told us that) and
2. too much sleep is not good for you. I have noticed this before. It's as if your body goes beyond what it needs and then starts to do something funny to itself. 

So: new leaf. I have decided that I shall have breakfast every morning, that I shall go to bed in the evening when I am tired but shall not oversleep in the morning, and that I shall have at least one other sensible meal a day. Let's see if I can keep it up tomorrow!

Je Regrette

Je Regrette

Today, I attended the Extraordinary General Meeting of the Faculty of Public Health. This was, indeed, an ‘extraordinary’ event. We Public Health folks tend to be passionate about public health, but well used to negotiating and trying to persuade, rather than outright opposition and major fights. We know that we do not have much power, but we encourage, cajole, influence, present the evidence and, often, finally win through. We are passionate about our populations, about what they need and what should be provided for them. We try to put them first.

We also, in the main, support our Faculty. We know that they do a good job under difficult circumstances. They are not paid. They do it on top of the day job, or after they retire. They are honourable, caring and, in these difficult times, they are doing the best they can.

Yet today, for the first time in 30 years, we had an EGM. Today, the rank and file of the Faculty called upon the Board to take a different stance. Today, we demanded that the Board changed its policy of attempting to influence amendments to the Health and Social Care Bill, and come out in outright opposition to it.

About 6% of the 3500 Faculty members travelled to Birmingham to take part in the debate. This sounds tiny. It is not. It is huge. Remember, the Faculty has large numbers of overseas members, members from Scotland, Wales and Northern Ireland who are less immediately affected, retired members, sick members, old members. This was a working day – many were unable to get the time off because of pre-existing commitments they thought too important to abandon. There were others who watched the live stream but were unable to vote. This was a large turnout of concerned people. There were past Presidents, distinguished academics, registrars just starting out in careers in public health, and those, like me, who are just jobbing public health professionals. We had all made our way to Birmingham because we thought this too important to miss; because we care deeply and wanted to make our voices heard.

The debate was robust but professional, as it should be in such a company. The President distinguished herself with her calm bearing and non-partisan chairing. She faced all challenges with a remarkable calm and made a series of correct decisions. There were some outstanding presentations, and others that left a lot to be desired, but on the whole it was an edifying spectacle of a group of people facing up to one of the most difficult dilemmas that they are ever likely to confront. Everybody knew that there was no cut and dried ‘right answer’. This was a judgment call, and we had to make it. Although the vote is not binding on the Faculty Board, a clear message would be bound to carry weight.

In the end, the vote to move to outright opposition to the Bill was overwhelming. There could be no doubt that the mood of those in the room was to oppose the Bill as a danger to the health of the people of this country and a move to privatise and destroy the NHS. I was pleased and relieved that the vote was so clear. Nobody could claim that the room was split.

So what is there to regret? I regret that it came to this – that we could not have achieved this result by consensus. I regret that it has caused divisions in the public health family and, for some, left a feeling of anger. I regret that, because of the poorly worded motion in support of the Faculty, I did not feel able to support it. I regret that we have been placed in this position by an intransigent Secretary of State who does not know the meaning of the verb ‘to listen’ and who insists on riding rough shod over all the voices, medical, nursing and others, telling him that this will not work.

But, I do NOT regret going to Birmingham. I do NOT regret speaking out, even if that puts me in bad odour with some people. I do NOT regret the company I found myself in, particularly those with far more to lose than I. Most of all, I do NOT regret that I have struck a blow, no matter how small, for the NHS and the health of the people of this country. I do not believe that this will be a day I shall regret on my deathbed.

The Tyranny of the Thermometer

"It's a medical emergency" they told us, the day we went up for out 'Introduction to Chemotherapy' session. And that is what it says on the card they gave us, with the emergency number. "If your temperature goes above 38C, no matter how well you are feeling, you ring this number and you come in for blood tests. You do understand? IT IS A MEDICAL EMERGENCY."

"OK, OK", I thought. "I know about this stuff. I can handle it. I shall take my temperature every morning and, unless there is a problem, I shall forget about it for the rest of the day."

Some hope!!! Let me tell you, dear friends, that, at least for this doctor, that is rubbish. Even though I feel relatively fine, although there are no signs of infection, although I have no symptoms other than those that would be expected, I find I am linked to my thermometer. Every time I wake in the night, I take my temperature; every time I go to the bathroom, I take my temperature; every few hours, for no other reason, I take my temperature. It has, so far, fluctuated between 36.1 and 37.4. There has never been a hint of a problem. But I cannot let it go. I need the constant reassurance that I am not missing something. 'Why?', I ask myself.

To be honest, I am not sure. I know that my greatest fear is that I shall have to be admitted for intravenous antibiotics, with all that means for Molly Cat and for my own peace of mind, but that cannot begin to explain it. It may be an emergency, but there is no reason to think that I am harbouring anything difficult to treat; on the contrary, all the screens have been negative. So what is it? Pride? Surely not. That would be totally daft. Displacement activity? Possibly. There is something very reassuring about having a little control. In fact, I think 'control' must be the operative word here. It is very hard to relinquish all control to others. I think I may find reassurance in knowing that I can make this decision. Maybe it's time to go back to the 'trust' bit and see where I have gone wrong. Oh dear.

Good night all, from Molly and me.

Feeling a bit if a chemotherapy fraud

So, hear I am, five days into my first chemotherapy cycle, and feeling a bit of a fraud. The truth is, I have been incredibly lucky and, so far, have only had the most minimal of side effects. I have had no sickness, or nausea, nor do I feel unwell. It is true that my face feels sun-burned, and that I am so exhausted that I seem only to be out of bed between 1300 and 2000 (if that, I am actually typing this sitting up in bed), but so far there have been no major problems.  I realise, of course, that this is the week that could bring them. I have just started the prophylactic antibiotics, as ordered, and I am taking my temperature regularly. I am also being ruthless about refusing admittance to anybody who thinks they might be harbouring infection, and I have masks and gel at the door. So if you come and see me, please be prepared for that. But all of this can be handled.

The actual chemo day was something of an experience. The fact that it was totally new territory was what made it daunting. A lovely friend and colleague took me up and stayed with me. What surprised me was how smoothly it all went. I can't have waited more than twenty minutes before I was called in. I was settled, the drip was up, and the nurse had explained it all in the following fifteen minutes. I think the worst moment was getting the cold cap on for the first time. They freeze it to -28C and it is a real shock. The shock subsides quite quickly, however, certainly within ten minutes, and then you sort of get used to it. And subsequent replacements (they need replacing every 45 minutes) are far less bad, because your head is already so cold. Now I wait to see whether it has done any good. The session lasted a couple of hours, then we came home. As simple as that. Amazing really, and again, the most wonderful care.

So, dear friends, the message from me is 'so far so good'. I shall try to write a little more frequently, but, as I say, I am very tired. Please keep those prayers coming.

Good night everybody.

A Chemotherapy Date at last: the 15th August: Mum would have been happy!

A visit to the hospital again yesterday. I went to be 'introduced' to the chemotherapy unit and the staff. First, a presentation of about half an hour: 'everything that could possibly go wrong'. This is probably necessary in today's world, but I'm not sure it was totally helpful. Even with my inside knowledge I found it a bit daunting (and I worked in paediatric oncology before moving into Public Health). How the other patients must have been feeling I dread to think. However, the nurse who made the presentation was very kind, and as reassuring as she could be.

Following that, we returned to the waiting room. We would all be seen individually. I looked around. There were at least eight of us. This could take a very long time. SIGH!!! The kind friend who had accompanied me and I settled in for the wait. Five minutes later, I was called - FIRST. Luck? Professional courtesy? Alphabet? Who knows? But I do know it was very lucky, given that I was with the two nurses for more than half an hour, so the last poor person could well be there for about four hours.

So, what did we do? Well, they took me to a room and asked if I had questions; they told me the start date (the 15th August, of which more anon); they talked about my regimen; they gave me a voucher for a wig (is this really necessary on the NHS?); they introduced me to Pamper treatments (no, not nappies, but beauticians showing you how to make up and so forth when all your hair falls out); they gave me a parking permit (initial euphoria was tempered by the realisation that it did not get me a parking space, just meant I did not have to pay); they gave me a 'THIS IS A MEDICAL EMERGENCY' card, with a 24-hour telephone number in case my temperature went up when on chemo; they took more blood; they measured my height and weight again (NOT GOOD!); they showed me the bay where the chemo takes place and the ice helmets and other aids. In short, they were wonderful, apparently had nothing else to do, made me feel comfortable and confident, and I walked out knowing that I was in good hands: an inestimable gift. The next person who disses the NHS in my hearing may just get bonked on the nose.

So, briefly, back to the date.  Why, I hope those of you who do not know, are asking, is this significant? Well, because it is the Feast of the Assumption of the Blessed Virgin Mary into Heaven or, as we Maltese say, the Feast of Santa Maria. It is one of the most important feasts in Malta, celebrated all over the islands. And it was on the 15th August 1942 that Pedestal Convoy got to Malta, against all the odds. If you don't know the story: look it up. The heroism of the service personnel, the dreadful loss of life, the tanker OHIO. This is the stuff of legend. And it happened on Santa Maria. The Maltese, devout, devoted to Our Lady, praying to her daily, flocked to Grand Harbour to cheer the ships in, despite the constant bombing.

I can hear my mother's voice proclaiming "Santa Maria: you'll be fine" just as, to be honest, I heard her voice when I got the operation day: "It's a Wednesday: Our Lady's day. You'll be fine." Who knows? But I can tell you my Faith has been a huge and constant comfort. Deo Gratias.