Molly Cat is acting strangely

I am not sure that Molly takes to an abundance of visitors. We have been blessed, this Christmas, with some wonderful company. My brother and his wife came for the festivities. They arrived on Christmas Eve in time for lunch, and left after Boxing Day lunch. However, very sensibly, they elected not to stay here. I have a spacious two-bed-roomed flat, but it really is too small for three adults and one cat. There is a very nice hotel about ten minutes walk away, and they stayed there. It worked perfectly. It meant that we had the pleasure of each others' company, but that we still had our own space. They came and went, and I was able to retire for rests without feeling guilty. Altogether, a splendid affair (except for the food - but that will be the subject of a separate post).

Molly, however, was not altogether sure. She took some time to get used to them being here so often, and seemed a little put out. Nevertheless, she got used to them and became almost sociable by the end. What, I think, she had not bargained for, was a constant stream of visitors after that. People popped in for tea, coffee, drinks, nibbles. I had friends to supper yesterday. I thoroughly enjoyed it (despite getting progressively more tired). She, I think, did not.

This morning, she behaved in a most peculiar manner. At about 06.45 I was dragged from slumber by the sound of Molly howling. I called her. She ignored me. I called her again. No response. I reluctantly got up and went to look. She seemed fine. There were no obvious signs of distress. I fed her, in case she was hungry, and went back to bed. Five minutes later, she started howling again. She would not come to me, she ignored my calls, she just howled. And then she started bringing me her toys. I was NOT going to play at this time of the morning. I snuggled down and ignored her. Eventually, she went to sleep. Very odd. She has never done anything like that before.

We were planning a quiet evening tonight, but some dear friends returned to Nottingham and it was the perfect moment to catch up. The arrangement was made rather late in the afternoon, and I got engrossed in the cooking. It wasn't until I got the lasagne into the oven that I thought to feed Molly. Unfortunately, this pretty well coincided with my friends' arrival.

Molly does not like being watched while she eats, not even by me. She does not like noise and disturbance. My friends have two boys aged two (my Godson) and one. They are delightful, but they are boys of that age. Molly retired, disgruntled, to the study. She refused to come back and did not eat. I felt guilty. I should have fed her earlier.

My friends have left. I so loved having them, and seeing how the boys had changed in the intervening five months (I would not let them come when I was very susceptible to infection). Molly is, after all, a cat. But she is MY cat, and I love her. I'll make sure I feed her early next time.

And let's see what happens tomorrow morning.

WHAT DOES IT TAKE TO GO VIRAL?

I try. Really, I try. I write what I believe to be entertaining and well-written posts. I try and write regularly, although when I have been unwell this has not always happened. But, with the best will in the world, 33 views cannot be described as viral. What am I doing wrong?

There are some things I know I'm missing. I don't write about sex, for a start. Well, would you? I'm almost 60. I live alone. I am hugely overweight, not helped by the steroids (legal ones) and the lack of exercise over the last five months. My body has just been poisoned. What sex?

I don't do drugs - well, not illegal ones anyway, and I doubt if anybody would be interested in the pleasures of anti-sickness pills, or the variability between cytotoxic drugs. Even if they were, I want to put all that behind me. As for the alcohol, all I am prepared to say is that there is no truth to the suggestion that you have to give it up during chemotherapy.

Rock and roll? Never, I'm afraid. Not even in my not very mis-spent youth. I always preferred the classics and the opera. Indeed, I could bore on for England about the opera. Do you remember Bernard Levin's brilliant columns in the Times, in days of yore? Would that I had that level of ability. His description of the disaster at Wexford had me sobbing with laughter (it is the last chapter in one of his books, if you haven't read it).

I'm not consistent. I think this may be a mistake. However, I would be bored writing about the same thing all the time, so I flutter about. Too bad.

I suspect I am too polite and too grammatically correct. Well, I'm sorry, but I grew up worrying about the placement of a comma. I cannot bear the mis-placed apostrophe. I got three copies of Lynne Truss's 'Eats, Shoots and Leaves' when it came out, and I still chuckle over the title. (I gave two of them away - I hope the recipients found them educational, although I have seen no evidence of this).

So, what to do? Well, I fear I am just going to keep plugging away, much helped by Molly Cat, and hope that something gives. In the mean time, she sends her love.

Molly Cat can turn off the Computer

I can hear the guffaws, the ridicule, as people read the title. Poor lass, she's really lost it: thinks her cat is a genius and she's clearly mad. She's turned into one of those mad cat ladies.

"Not at all", I reply with dignity, "it is all perfectly understandable. Belay your scepticism. Pocket your ridicule. Listen to the facts."

The facts are as follows. My computer and all it's 'gadgets' are connected to the mains through one of those extension plugs with a surge protector. It also has a switch, so the whole thing can be switched off. This lives behind the little cabinet at the side of my computer, upon which resides a basket with all my scrap paper. It is very useful. Recently, Molly has taken to sitting in that basket and pawing at the door to my computer cupboard, which is between us. I ignore her for a while, but inevitably succumb and look around the door, tickle her chin and talk to her for a while before returning to work. A few days ago I did this, but clearly did not spend long enough with her. She made a grumbly noise, then jumped down behind the cabinet. Fortuitously (for her) she landed on the extension plug switch and everything (computer, printer, router etc.) switched off. I was mystified for  a moment, then reached down to see if the plug had got disconnected. In so doing, I lifted Molly Cat and gave her a little cuddle. BAD MISTAKE.

I don't think that would have been enough, but two days later she again jumped down behind the cabinet. Although she did not turn the switch off, the movement was enough to turn off the computer. My response was: "Molly, what are you doing? Get out of there" and to pick her up. You see the error? This was positive reinforcement. I did not realise it at the time. It was about two days later that I was ignoring her demands for attention. She jumped down. I responded as before. She has done it twice since.

i do not think this is coincidence. I think she has learned from my bad response that jumping down behind the cabinet gets her attention. I am now trying to ignore it when this happens. Anybody else have a cat who can turn off their computer?

This week I had a tattoo

Now, I never thought I would be saying that, but it's true. On Tuesday, I had two tattoos. Me!!! I arrived and was asked to wait. I sat, rather nervously, in the waiting room, until I was called in to the room. Then they did it.

Alright, I'll 'fess up. This was no ordinary tattoo. I went for my radiotherapy planning meeting. Nowadays, they use tattoos rather than pens. It seems to work rather better. So, what actually happened?

I arrived at the clinic a few minutes early. They were expecting me, professional, kind. I waited a few minutes, then a radiotherapist arrived to talk me through the procedures and ensure I was comfortable. So far so good.  A little while later, I was called into the radiotherapy room where they 'set you up' i.e. they make sure that all the lasers line up for your treatment. Good idea, and no problem - if you're a size 8!

They told me to sit on the table/couch and 'put my bottom between the two markers'. Huh! Not my bottom, I have to say. Considerable tweaking later, I was able to fit. Major embarrassment all round. The next stage was to lie back: I was just able to do that, but I dread to think about less able people. The radiographers can't help you - apparently, it is too risky to their backs and so not allowed. Quite right too.

Eventually, I was positioned. Now, my arm had to go into the relevant stirrup. I was grateful that I had kept the exercises up - no problem there. They told me to keep still, and they all disappeared. Suddenly, I started to move. Laser beams came at me. I wondered if I was taking part in a new Star Wars film. I kept breathing normally (that's what I was told to do) and hoped for the best. Apparently, it was fine. They returned.

"Get up" they said. I was lying flat, on a narrow 'bed'. I reached for a hand: 'not allowed'. It took a couple of goes, but I was quite pleased with myself. It will take about half an hour, they  said, then we can do the tattoos and you can go home. Not likely! Over an hour later, I was called back. However, I now have two tattoos (the size of pin heads) and I am set up for my first radiotherapy session. Watch this space.

The Last Chemo Appointment: a mixed day!!!

Yesterday, was my last chemo appointment. As I said in my previous post, I had ambivalent feelings about it. What I didn't say, because I thought I was just being silly, was that I had a sort of feeling that it would all go wrong and that there would be a disaster. I had visions of being sent home because my bloods were too bad, or something else had gone pear-shaped. Well, nothing as dreadful as that occurred, but it certainly wasn't the plain sailing that all the others had been. In the past, I have turned up for my 0900, or 0930, appointment and always, within half an hour, have been shown to 'the chair' (not a good name, I think; they ought to call it something else!) and the whole thing has got going. Not, however, yesterday. Let me tell you about it:

08.40: My dear friend arrived to pick me up, and we arrived at the hospital in good time.
08.55: She dropped me at the door and went off to park.
09.00: As I walked through the entrance, the fire alarms started to go off. Not only were the lifts off, but we were not allowed to use the stairs. The lobby area got more and more crowded, and I started to get twitchy. How long would this go on? Three hunky firemen were a distraction but not, sadly, a sufficient one: I am clearly getting old.
09.20: It was all cleared up and we were released. Up to the day ward, where I was logged in, tagged and told to go and sit in the waiting room. As ever, almost as a reflex, I asked if my drugs had come up. Always, in the past, the answer has been a reassuring 'yes'. Not this time. They weren't there and nobody could tell how long they would be. Oh dear. We repaired to the waiting room. And waited. And waited.
10.30:  I was distinctly concerned, since both my friend and I had meetings planned for the afternoon. 11.30:  I was getting really unhappy.
11.35: They said the drugs were on their way and took me through to be attached to the drip. Huge sighs of relief: we should just make it. As we walked through, I foolishly said to Poppy (the wonderful nurse doing all this for me) that I had been retaining lots of fluid over the last three days - putting on in excess of a pound a day. Her face fell. She finished putting up the drip, then announced that she would have to ask the doctor about that one, since she had never come across it before. Oops.
11.45: The relevant Senior Registrar, it transpired, did not carry a bleep (not impressed - why wouldn't you carry a bleep?) and wasn't answering her mobile phone. The other one would not deal with the query because I was not his patient.
11:50: A compliant and wonderful registrar was found and came to look. We had an intelligent conversation, and he agreed that the treatment could continue. Ice cap on.
12.05: Drugs start going through. I pretend not to be totally twitchy. My friend talking about anything to keep me distracted. I silently thank God for her presence, keeping me sane.
12.10: Polly announces that my home drugs have not come up. Would I mind collecting them at Pharmacy? Of course not. We go through the prescription, to be sure everything is there. There are no bone-marrow stimulating (GSF) injections. Oops again. Polly asks if I always have them. I reply in the affirmative. She stifles something and goes off to find the doctor again. Suddenly I hear her shout: the elusive SR is on the ward. All is well.
12.15: Polly returns. Prescription for GSF is on a separate sheet. Would my friend take it to pharmacy. She goes off.
12.17: Polly is copying stuff and mutters 'GSF for seven days'. 'No, five days' I say. 'She's prescribed seven'. 'Well, I usually have five'. The reply is less stifled. Off she goes again.
12.35: Friend changes ice cap, pharmacy trip having been postponed. Oh, it's cold. I am NEVER doing that again. If I get a recurrence and have to have chemo again, I'm going to wear the wig!
12.45: Polly returns. It is all sorted out. Could the prescription be taken to pharmacy?
12.50: Friend returns. Prescription deposited, but there is an hour's wait in pharmacy. There is now no way she is going to make her 13.30 meeting. I try to persuade her to leave. I can take a taxi home. She refuses. Multiple phone calls later, she has rearranged her complete afternoon. There are no words to thank her.
13.05: Drip complete; only the flush to go.
13.20: Drip down; ice cap off.
13.22: Hand thank-you present to receptionist; rush to pharmacy.
13.30: Drugs handed to me. Unnecessary dexamethasone has also been prescribed by same SR. I persuade pharmacy to take it back, rather than it getting thrown away. I explain it would be pre my next dose and I'm not having a next dose. Resist temptation to do happy jig in pharmacy.
14.00: In car to drive home. Realise that I am late for my teleconference. Ring to explain. Told to ring ASAP - they will wait.
14.15: Get home. Decide they can wait five minutes while I change, go to the bathroom and get myself some water.
16.00: Teleconference finishes. I decide I have earned a ten-minute lie down.

An hour later I started to cook. It turned into a very good evening indeed!!

Tomorrow I finish Chemotherapy

Tomorrow is a red letter day. Chemotherapy started on August 15th. Tomorrow, all being well, is the last dose. I am being picked up by the same lovely person who took me to my first appointment - it seemed fitting, somehow. The appointment is at 0900. All being well, I shall be home by 1200, at the latest. There will be champagne on ice for the evening, and I am cooking what I hope will be a fantastic meal. There will be five of us and, unless I'm much mistaken, there will be enough leftovers to feed an army, but I wanted variety. In case anybody is interested, we are starting with timpana (a Maltese traditional dish), followed by braised beef with veg, and finishing with ice cream (for those who want it) and cantuccini with ratafia. I plan a lie-in on Friday morning!

So, the big day has arrived. How am I feeling? Well, it's very odd. I thought I would be euphoric, but actually I'm dreading it rather. I hate the thought of the wretched ice cap, but really can't give up now, and although it's the last day there are still the 10 to 14 days after it to get through. It must be said, I am turning into a wimp. I always knew I was one of the world's great cowards, but maintaining a decent fortitude has got harder as the cycles went on. This, I suspect, is inevitable, since your body takes longer to recover.

On the up side, however, within a couple of weeks I should be raring to go. I have theatre plans, and lunch plans, and dinner plans, and opera plans etc. etc. I am going to make up for lost time. I may even take a couple of days of proper annual leave to celebrate, before returning to my two work bases. I have also, rather foolishly, agreed to help my Parish Priest to analyse some survey data results. They are a nightmare!! Guess what I'm doing all weekend.

So, if anybody is out there and reading this, please say a little prayer that all will be well tomorrow, and then raise a glass to celebrate the end of this part of the journey.

Today we had mashed potatoes

You know how there are some things that are so evil, so wicked, so unutterably BAD, that they are just not allowed to happen? Well, mashed potatoes are like that for me. If there are any within reaching distance, I shall finish them. Full or not, I can eat endless quantities. I just love them. Therefore, I do not make them. Mashed potatoes do not feature in my house. Until tonight.

I ought to explain that I am, at the moment, trying to empty the freezer so that it can be cleaned out and re-stocked for Christmas. As far as I am concerned, the trick to having the family to Christmas is to cook as much as possible beforehand and freeze it. I refuse to be a slave to the kitchen on the day. Hence, the red cabbage is cooked a week before and frozen; the first course is frozen at least three weeks before, etc. You get the idea. On the day, the only things that need actual cooking can go in the oven several hours before the visitors arrive. Once they get here, the most energetic thing I have to do is open the champagne, the nibbles having been put into bowls/plates at least two hours before. The menu is carefully planned to allow all this.

All this drivel to explain why today, most unusually, I found myself cooking minute steaks. This would not, normally, be weekday food nor, if I'm honest, ordinary supper food. But there was a packet in the freezer that needed using and a friend was coming to supper so, what the heck, I decided we could have that. Which is when, for some inexplicable reason, I developed an absolute craving for mashed potatoes to go with it. In vain did I tell myself it was too much work - my friend said he would help. Stern warnings to myself about calorie content were ignored. The delights of steamed potatoes were eschewed. We made mashed potatoes - my way, with oil, and seaweed salt, and a dribble of semi-skimmed milk.

They were delicious. We mixed them with mushrooms. We lingered over them. We reheated them in the microwave for seconds. We licked the bowl. In short, I disgraced myself. I do not even want to imagine what it has done to the diet. I don't think I shall weigh myself tomorrow morning.

To Party or Not to Party

Horrendous realisation: I am coming up to a very significant birthday in August 2014, and 21 it isn't. When the realisation dawned, I blenched. It could not possibly be true. But, of course, it is. And, I decided, the fact that I do not quite believe it is a good sign. However, there is also the fact that it is impossible to know how many more significant birthdays (as in, those with a nought on the end) I am going to have (me and everybody else - I'm not being depressive!). So, the question is, do I want to mark this one?

This is difficult. [Aside: why do I never get the capital letters right when I am typing and have to go back for them? It is really aggravating.] So, here are the pros and cons:

Pros:

1. It should be fun
2. It may be my last chance
3. I hope to have a lot to celebrate
4. I love parties
5. I'd love to get all my friends together
6. I've always wanted a party in Malta.

Cons:

1. Cost - not just for me, but for my friends, if I am asking them to come to Malta
2. Organisation - it will take a lot of hard work
3. Molly - will have to be left behind
4. Diet - I refuse to be this big at my own party
5. Etc.

I am going to spend a lot of time thinking about it in the next four weeks. If I'm doing it, people need to know by the end of the year so that they can start thinking about whether they want to come. Watch this space. But I think the answer may be 'no', because I haven't got the energy. We'll see.

In the mean time, if anybody is interested, I've run out of flowers for the first time!

What You Are Being Compensated For (or words to that effect)

I wrote about the compensations, and there are many, but, of course, you only need the compensations because there are down sides. On Thursday, I had the latest dose of chemotherapy. By Sunday, the side-effects had kicked in. The biggest one, the real killer, is the exhaustion. I never thought I could be this tired. I find myself looking at the clock thinking it must be at least ten o'clock, to find it is barely seven. Yesterday, a friend phoned at 7.15 and my first thought, before I realised the time, was 'why is she ringing so late?' I had to ring off by 8.15, totally wiped out by chatting.  I did not even try to watch Downton Abbey on Sunday - far too late (9p.m.); I just about managed the Strictly results (7.20p.m.).

There are other, more minor, problems:

1. I ache, particularly in the long bones, largely, I suspect, from the bone marrow stimulating injections;
2. my brain is mush;
3. I have a horrible, metallic, taste in my mouth;
4. my eyes are gritty and I am useless at putting in my own eyedrops;
5. I hate the nose and other bleeds;
6. I am no longer sure where and when to put the commas in sentences (those who know me will know what a trauma that is!).

Blah, blah, blah, I hear you say. And you are quite right. This is all nothing. I am here. I am well. Friends come and visit. My cat talks to me. I have a silly grin on my face. 

DO NOT take the first bit of this too seriously. Yes, of course there are downsides. Of course there are moments when I want to curl up and feel sorry for myself. But, don't we all? Is it not true that, no matter what, we all have moments when life could be better? I have been so fortunate. I have so much support. My employers have been wonderful, demanding nothing. My friends and colleagues have rallied around. My Godchildren have come to visit. Facebook is awash with good will messages. 

And now I am starting to plan. I am booking tickets:

1. Panto in December
2. Jude Law in Henry V in February
3. Opera at the ROH in the Spring
4. Reunions with old friends
5. A major holiday - OK, I don't know where or when, but it will happen.

And, maybe, a major birthday party in August. We'll see. I'm still thinking about that!

The Compensations of being ill and the Advantages of Working from Home

Oh, there are so many. I could get soooo used to this. Admittedly, I am being rather self-indulgent with things like timings, so it feels even more relaxed, but the reality is that there are many actual advantages. I think I may try and maintain rather more home working when I am fully back. So, what are these advantages? Well, in no particular order (as they say on Strictly Come Dancing):

1. Time: it is amazing how much more you fit in when you don't have to factor in travel time. Although I said that I was being more relaxed about timings, and I am, I can get through quite a lot in less time. Of course, at the moment my brain isn't up to much, but as that improves, I'm sure I shall be able to do lots more from here.
2. Money: I cannot tell you what I am saving. No travel costs, no parking costs, no coffee/sandwiches/snacks, no taxis in London, no taxis in Leicester when I get there on the train and it is pouring with rain, etc. etc.
3. Relaxation: it is so nice to be able to go and make a decent cup of my own coffee/tea when I fancy it, or to load the washing machine while making said coffee/tea. I can eat fruit all day without having to remember to take it with me. I can cuddle the cat when I need to think for a couple of minutes. I can play my favourite music (I am currently listening to Ashkenazy playing Chopin, an almost forgotten pleasure).
4. Deliveries: no more worrying about when deliveries can arrive, because I am pretty much always here. If I do need to pop out for anything, I can arrange to do that when somebody else is here.
5. Clothes: no worries about what to wear in the morning. I have discovered the kaftan look and now have a lovely set of kaftans in different colours which I rotate through on a daily basis. The summer ones have now been put away and I am curled up in fleece - it's lovely!
6. Silence: the pleasure of being able to listen to the silence, to meditate, really to think, without constant interruptions. I have even learned to turn Radio 4 off in the morning, and the music off at any time if I need the silence.
7. Internet shopping: OK, this goes against what I said about money, but I can tell you it is a drop in the ocean compared to what I spend going to work. And I am going to be so organised for Christmas this year. Also, mistaken impulse buys can easily (and for no charge) be sent back, so you can gets lots of stuff you know you won't keep and try them all on, eventually just choosing the best. And all in the comfort of your own home.
8. Molly Cat: I love having her near me all day. She snores quite loudly when she is asleep, which I find endearing, amusing and relaxing.
9. Visitors: the delights of lots of lovely, generous people coming to visit on a regular basis and giving me their time and their support. And they never seem to mind if I need suddenly to send them home because I am tired!
10. Flowers: I thought, back in July when there were 17 vases of flowers in the house, that this could not possibly last and, of course, it hasn't, but I have not bought a single flower since all this started and never have less than two vases of flowers in the house. It is absolutely fabulous, and the sight of the delivery man (one of whom has taking to calling me petal) at the door never fails to bring a smile to my face.
11. The down side: no theatres, concerts, cinemas, restaurants, other crowded spaces, because of the infection risk. However, of course this also saves money, so has an up side. 

So, you see, there are compensations to being ill and working from home. Can I have another six months recuperation please? No, I didn't think so.

Chemo Hair Loss: When it doesn't quite all fall out!

I am sorry to keep starting these posts with the same phrase, but it really is the difference between what you think you expect and what really happens that makes life interesting. So, way back when all this started, I was warned that it was not unlikely that my hair would fall out with the chemotherapy. I was given a voucher for a wig, which I duly used (see previous post), and I spent an enjoyable afternoon, and rather a lot of money, buying hats on the internet. I was also told about the ice packs (frozen to -28C and forced on to your head) which are designed to minimise hair loss. I opted for that - horrid though it is - and hoped for the best.

I have written previously about when the hair started falling out, and the emotional impact of that. However, quite quickly it seemed to fall out less, and soon there was minimal hair loss. I was thrilled.  This was a doddle. Thank God for good, strong, Mediterranean hair. However, what nobody had warned me about was that hair loss tends to be clumpy. You don't get a nice, even thinning of the thatch; you get bald patches and relatively normal patches. I sighed at this when it happened, but decided I could cope: Arthur Scargill's comb over (that dates me!) was as nothing to mine. And still, neither hat nor wig had been used.

Now, however, we are into a new phase. I can only describe it as yukky hair phase. My normally healthy, bouncy hair looks as if it comes from the underside of a wild goat on a really bad day. In other words, there is no life, no body, nothing to really comb over. It is still there, in its patches, but it looks dreadful. I DO NOT LIKE THIS. Then a thought occurred: I had a really good look at my skin. It looked poor. I felt it carefully. There are little bumps; not quite pimples, more like incipient blackheads, although there is nothing to see. No amount of conditioning of both hair and skin seems to make any difference.

Now, of course, none of this matters. All being well, there are only six weeks to go before this is all over. Only three and a half until I have had the last dose (oh the champagne I plan to drink that night!!!). And soon after all of this will start to get better, and eventually, I am sure, it will all come back to normal. However, if you are just starting out on this journey, be warned. It isn't all or nothing, and I'm not sure whether all would not have been preferable to this. Perhaps I ought to go and get my hair shaved off? Serious question. Truth is, I'm not quite sure I can face that. And, anyway, from a distance it just looks as if I'm having a bad hair day. So, if you see me out, just pretend I'm having a bad hair day and ignore me. Thanks.

Towards the end of Chemo Cycle Four

When all this started, back at the first cycle of chemo, I knew I was incredibly lucky, and kept saying so, to have only minimal side effects, but if I'm honest, there was also a little bit of me that was congratulating myself on being resilient and robust and positive and somehow tougher than I ever expected. Well, as the Good Book says (does it? or is this from somewhere else?) 'pride goeth before a fall'.

As each cycle went past, I was aware that it was taking my body longer to bounce back. I should, of course, have expected this and, in my head, I did, but your heart says 'no, it will be fine, just the same'. So, when it isn't, you feel a little hard done by. Being now definitely on the up side of cycle four, I thought I would reflect on it.

The side effects were definitely a little worse. I was totally exhausted and on days five to ten (counting chemo day as Day 1) I slept for more than eighteen hours. I am sure this was compounded by the bone marrow stimulating injections, and by the fact that I was trying to do too much. Your body soon tells you that it is NOT prepared to go the extra mile. There was one dreadful evening when I even forgot to feed poor Molly. Happily, she survived the experience and appears to have forgiven me. There were also new side-effects, like nose-bleeds, which I put down to my marrow taking longer to bounce back and my platelets probably being a little low. We shall find out on Tuesday. I pray that they are not so low that I need to postpone chemotherapy. I now really feel that the end is in sight and I would be upset if it had to be postponed.

On the up side, my hair does not appear to be getting any worse, and I have developed a singularly stylish 'comb-over'! It looks worse when it is wet, so I now ensure that I only wash it on days when I am not expecting visitors. Unfortunately, the initial weight loss has not been maintained, but I intend to really try again this week. I'd like to look better for Christmas.

Then there is Christmas, and I am catering here, which I adore. So I am happily planning menus and changing them regularly. It is only three meals (Christmas Eve dinner, Christmas Day lunch and a possible evening snack) but I want it to be perfect. It's been years since they've agreed to come to me. It is an interesting conundrum, what to serve. One person dislikes meat of all sorts, another adores steak but isn't heavily into turkey. I'm thinking home made prawn curry on Christmas Eve (I make my own - no take aways or packets!) and then variety on Christmas Day so that everybody can have what they want. I can feel lots of practice sessions coming on. I hope my friends don't mind being guinea pigs!!

Molly Cat Doesn't "DO" Choice

Molly is a fussy eater. I may have mentioned this before? The only wet food she will reliably peck at is Felix. Unfortunately, Felix is made by Nestle. My cat and my principles in direct conflict. Of course, the cat won, but I continue to try to introduce other brands.

Two weeks ago I tried two new brands. Both came highly recommended. The "Book" [the cat equivalent of Dr. Spock] said that, if you are introducing new food, mix the old and the new. I tried this. Meal times became a complicated nightmare. There was a choice between fish and meat; a choice between Felix plus one or other of the new brands; a decision about how much to use. I was going demented. Molly kept picking and howling. However I  thought, on balance, that she was eating slightly more of the wet food. Was it possible that one or other found favour and, if so, how to know which? A brainwave struck.

Yesterday, I put down two quarter bowls of food: one of Felix, the other of one of the new ones. I labelled them (for me, not for her), and I walked away.

She howled for two hours. She would touch neither. I came close to succumbing, but I really do draw the line at throwing away that much good food. There was always the dry food. By this morning, she had picked at both but eaten neither. I admitted defeat, threw the rest away. Clearly, she does not approve of choice. From now on, she gets what she's given. If she doesn't like it, she can eat the dry food.

ARE ALL CATS THIS DIFFICULT?

Chemotherapy, and how to survive it: The First Half

On Wednesday, I shall be exactly half way through my chemotherapy. I shall have completed the first three cycles of FEC and will be starting the three cycles of Taxotere on Thursday. So this seemed as good a time as any to take stock and see how I had coped.

I think the first thing to say is that I consider myself very lucky. Side effects there certainly have been, but nothing that could not be managed. And I have received an enormous amount of support from friends and colleagues, which has meant that I never need to do anything I don't feel up to. However, this has been a learning curve, and I thought putting some of it down might be helpful, so here goes.

I have already talked of the first appointment, but re-reading those early blogs it all feels rather different now. It is, of course, true that stepping into the unknown was a big part of the nervousness the first time. It is amazing how quickly it all becomes completely routine. You know what every noise means; you do your own nasal swab while you are waiting; you remind them about the cold cap; you check your own drugs and make sure you have all the appointments for next time; you chat to the other patients and find yourself dishing out suggestions and experience to the newbies.  It is all rather astonishing. I found myself singing out 'see you all in three weeks' as I left the ward last time.

So, what are the lessons I have taken from this?

1. Everything is temporary; nothing is permanent. When my hair started falling out in fistfuls, I was far more distressed than I had anticipated, but I kept telling myself that it would grow back. In fact, I've been lucky, and will write about that separately, but the fact that everything is temporary is important.
2. The effects are, to an extent, cumulative. In other words, it takes slightly longer to bounce back after every dose. You need to factor this in to things like returning to work.
3. Write down what you have to do when: it is astonishing how complicated taking a few drugs at different times on different days can feel when you are under the weather.
4. It is important to eat sensibly and drink lots of water.
5. If, like me, you need to lose weight - it won't happen. This is not a quick fix diet.
6. Be kind to yourself. Allow yourself to rest and read and do lots of internet shopping.
7. Make life as easy as possible for yourself. Buy in whatever support you can afford.
8. Embrace the silence and get to know yourself better.
9. Keep smiling - IT WILL PASS.

So, on Thursday we start the next round. I hear different things about whether it is better or worse, but frankly I'm not too bothered. It's downhill all the way from here, and I'm starting to plan some nice things to do in December. And I'm not going to worry about the radiotherapy until after Christmas - so there!!!! I'm off to book my train ticket for London for two weeks after my last dose. THE GIRLS are having a reunion.

Today was a Major Adventure

When, in the middle of August, I realised that my Maltese passport had expired, I did not think too much of it. I assumed that renewing it would simply involve sending it and a large cheque to the High Commission. Sadly, this turned out not to be the case. Malta has moved to biometric passports, so I had to attend in person to have my fingerprints taken and so forth. Now, this would not normally have been a problem, since I am in and out of London a lot for work, but I had not actually been on a train since my cancer diagnosis, and I have been paranoid about avoiding places of potential infection. However, I wanted that passport, so I decided that provided I caught trains in the middle of the day, travelled first class (to avoid the children, mainly) and sat as far from other passengers as possible, I should be fine.

Accordingly, this morning, I set off for the 10.28 train. I knew I was cutting it fine, but I decided to risk it. Arriving at St. Pancras, I made a fatal mistake and headed for the taxi queue.When did the London traffic get so bad? I cannot remember jams like it for years. We were grid-locked. Eventually, I abandoned the taxi and legged it, but I am very far from fit. I arrived, gasping, at the High Commission at 12.55 for what should have been a 12.30 appointment. I was directed to the First Floor, with dire warnings that it was unlikely they would see me since they closed for lunch from 1 till 2. I leaned on the bell and waited.

A female voice answered. I am not Maltese for nothing. In thirty seconds flat she knew that I had come all the way from Nottingham, that I had cancer, that I was due for chemotherapy tomorrow and that my journey had been held up. I then drew breath and expressed my deep and abiding apologies for my tardiness and asked if there was anything she could do. She let me in. She would ask her colleague.

Her colleague was wonderful. I cannot praise him highly enough. He explained that we had to hurry, because the computer system was due to go down any minute. He did all the bits for which we needed the computer - like the photos and the fingerprints - then went on to check all my forms, of which there were many. When I had first made enquiries about renewing my passport, it transpired that the law in Malta had changed and that my birth had to be registered there. As it happens, I was actually born in London, although we returned home when I was a babe in arms. My parents, it further transpired, had been most remiss and had not bothered to register my birth in Malta as well as in England (why would they?). So, before I could renew my passport, I had to register my birth. This necessitated endless information about my grandparents (do you know where and when your paternal grandparents were married? No, neither did I. I am grateful to a cousin for providing this information), and my original, long, British birth certificate which, fortunately, I had.

So, by 13.15 there we were. All the forms checked, everything entered into the computer. The nice gentleman said that would be £88.50. I handed over my card. They don't take cards. I had not thought to take a cheque book. 'There's a bank next door' he said, helpfully. I grunted, then remembered that I had been to the bank the day before. I counted it out and, fortunately, had enough.

By the time I collapsed into a seat beside my cousin at the Terrace Restaurant I was shattered and almost an hour late. I was also aware that my return, pre-booked, rail ticket was for 15.15. We had a lovely lunch, catching up on all the family news. We downed a rather nice bottle of pinot grigio with our fish, and laughed a lot. But you will not be surprised to learn that I missed my train and am writing this on the 15.30. I don't want to think what today has cost me. I think I shall give London up for another little while!!

Yesterday, I overdid things

And boy, did I suffer for it. At least, I presume that is the cause of last night's malaise and today's general wimpishness. So, what did I do that was so terrible? Well, first I stayed up till 11p.m.! Yes, that's right. Almost the witching hour: 2300. I had not done that for weeks. But my young cousin (almost thirty, but definitely young by my standards) was here, and we were joined by another friend for dinner. We had a great time. We didn't do anything very raucous: we talked, ate, did the jigsaw puzzle. Really quite sedate. I did the cooking, which involved more standing than usual, but I dont know if that is material. We also, I have to confess, drank rather too much wine, most of it red. But these are not major crimes.

I have to admit I really enjoyed it. I enjoyed behaving as I used to. I enjoyed being Mediterranean. It was a wrench to call a halt. Eventually, I went to bed. It was as I tried to lie flat that I realised something was wrong. You know how, if you've slept in another bed, your back feels as if it needs easing back into position? Well, mine was like that, only it didn't ease. Whatever I did, there were cramping pains across my lower back. Yuk. Also, my long bones were aching, but I put that down to the bone marrow stimulating injections.

So, to cut a long story short, I had a bad night and woke in a mood - largely self-pity, which I deplore. I've been wimpish all day. When some friends from Cambridge days rang to say they were in Nottingham and could they pop in for fifteen minutes before catching the return train, I almost said no. But I'm not given to refusing visitors, so I said yes. Thank God. They arrived half an hour later. I offered them a glass of wine. We drank. White. They've just left. My back is still a little uncomfortable, but there is a smile on my face.

Lessons: I have to be careful and not overdo it too much BUT: there is such a thing as being too careful. I'm off to book the theatre tickets for the day after my last chemo. How much damage can I do? Don't answer that.

Being Ill involves a lot of Paraphernalia!

When all this started, I thought 'OK, we'll handle this and make as few changes as possible' (well, I didn't, but what I really thought would not be helpful or enlightening at this point!). The fact remains, that I anticipated little change to my home or my life, except those caused by my own weakness. I had no idea that being ill involved so much STUFF!! My house, or at least my bedroom, is now looking like a sick room, and I approve of this not at all.

The changes started when I first came back from hospital. I have told you of the drains and all the necessary things that went with them: there were the syringes, the papier mache bowls, the wipes, the note book etc. etc. However, this was only due to last five days. After that, I could put everything away into my bulging bathroom cabinet and forget about it. Which I did, until I went up for my 'Introduction to Chemotherapy' session, about which I have already written. There were suggestions: better make sure you have a good mouth wash, preferably without alcohol [add to list], you may need Bonjela or something similar for your mouth [add to list], you will need a digital thermometer [add to list], you should have paracetomol rather than aspirin [add to list, with humph of disgust - I have never found it works as well], you may need micropore [add to list], a good bath oil (real oil) [add to list], moisturising creams without any perfumes [add to list]. You get the picture. Over the next week, Ocado delivered a bizarre set of 'groceries', which bore little resemblance to my usual order of wine, fresh fruit and vegetables, yoghurt and sundry other goodies.

When I attended for my first chemotherapy session, therefore, I felt prepared. I had done everything suggested and there could not possibly be anything else. Little did I know. I was hooked up to the poison and the whole thing started. The nurse who had got it all going sat with me, as she must during the first drug, and said: "Right, now let me explain what you need to take home with you." I'm fairly sure I blinked, although this may not have been obvious since my head was being frozen to -28C at that point. She proceeded to hand me bags full of stuff:

"You start the Odensatron and Dexamethasone this evening" she explained, "and take it till it runs out in three days. On day five, you start the antibiotics, I've written 'Monday' on the box so you won't forget. Take those until they run out. The metaclopromide is anti-sickness. You can take it along with everything else if you need it. There are two boxes, but let us know if you need more." I left the unit weighed down with all the STUFF.

The second cycle arrived. I went up to the hospital to see the consultant for my pre-treatment assessment. I had not used the metaclopromide at all, I explained, so I didn't need any more. She asked about my mouth. I said it had been a little sore. She assured me they could do something about that. Also, I would need to start taking dexamethasone earlier before cycle three, so she would prescribe that. I could pick these up at the pharmacy when I returned for my therapy in two days time.

This time, I returned from the hospital with a huge, and heavy, bag of specialist mouthwash, which I am supposed to be mixing and using four times a day (I'm not - I may regret this!), all the same drugs as before plus some extra. I was also told that I needed to start injections into my abdominal wall to stimulate my bone marrow. So, as I was leaving, I was handed another packet: "Put this in your fridge. We'll arrange for the District Nurses to come and do the injections."

They duly arrived on Monday. They are kind, competent and chatty. They left my 'Patient Held Record', which Molly tried to eat (and, no, I didn't actually ENCOURAGE her!). But I so wish I did not have to have a bright yellow Sharp's Box in my bedroom. Somehow, that is the last straw. I think I may design a Sharp's Box Cover, rather like those silly loo roll covers, for use at home. What do you think? Bright floral gingham anyone? Or perhaps a Jolly Roger?

Today, I bought a wig!

You will have seen from yesterday's post that my hair has started falling out. This was as predicted, but still distressing. However, at the beginning of all this I was given a voucher to put towards a wig, and a list of suppliers. On Tuesday, I rang and made an appointment for today. I considered that, since it was the day of my chemo, I was likely to be most resistant to infection.

It turned out to be a somewhat surreal experience. As I approached the door, there was a man lounging in the doorway rolling a cigarette, and a small white puff-ball that announced itself as a dog. The man was tattooed (not extensively) and I have to admit I thought he had just stopped to roll his cigarette. As I approached, I said 'Excuse me' politely, and reached for the relevant bell. 'Oh', he said, 'that's me. We just popped down for a breather.' Well, obviously I told him to carry on and waited till he had lit up and had a few drags.

Michael is A QUEEN.  This was, it must be said, immediately obvious. He introduced Mimi, who took no notice, and told me her breed, which I'm afraid I can't remember. He chatted easily for a couple of minutes, then stubbed out the remnants and led me in to the house. 'Darling, I'm afraid it's two floors up. Will you be OK? Just take your time' and he and Mimi headed for the stairs.

I looked up, and up, and up. These are old houses with very high ceilings. The stairs are narrow, very steep, and have sharp turns. There were 21 steps to the first floor: I counted them. The second floor was harder.

The wig fitting turned out to be remarkably simple. 'Darling, do you want the same, or a completely new look?' I gaped. 'My advice is always to stay the same for the first wig. We can experiment with the second.' I agreed. 'So, are we including the grey?' I choked and laughed. I hadn't thought of that. We agreed on the grey. Hey presto, a wig was presented. It was perfect. He put it on for me, showed me how to place it ("Darling, you are not a Werewolf. You need it just above your hair line"), then sold me all the rest of the paraphernalia. I came home in a taxi with two bags of stuff, and collapsed into bed for an hour.

I like Michael. He was perfect for today. But if I need to see him again, he is coming to me - there is no way I am climbing those stairs again or, even worse, coming down them!!

I hate my hair falling out

Tomorrow I have my second dose of chemotherapy. Back to the hospital, drip up, poison injected, cold cap (ouch!!!!) on, then home. My bloods yesterday were fine: apparently my white cells and my platelets are holding up. However, they are going to organise a District Nurse to give me injections into my abdominal wall to improve marrow function. I wonder why I am not looking forward to that? Oh the cowardly wimp!!!

All seemed to be going well over the last three weeks. I had minimal side effects (details available, if anybody is interested) and felt generally well except for the exhaustion. A few eyelashes and other hairs had fallen out, but nothing to speak of. I was congratulating myself on the success of the ice cap. Until last Monday. I washed my hair, as I do every other day. Suddenly, there were hairs everywhere. My shoulders were covered. My hands were full as I rinsed my hair. The drainage hole was blocked. I watched, mesmerised and horrified. I kept clearing things and they kept clogging. Eventually, I got out of the bath. As I towelled my hair, the towel went black.

I took a few deep breaths. This was predicted. I must not over-react. But there is something very distressing about seeing your hair all falling out, even if, like me, you have so much hair that it does not really show yet. So, why does it matter so much? Why is hair so important? I don't know the answer to that, but I do begin to realise that there is something very important about hair. It somehow defines us. I had not expected to respond this way.  Indeed, I had been joking about it, saying it would grow back (which it will) and that I might turn into a sexy blonde (huh!). None of that matters now. I find I dread washing my hair and that I try and avoid threading my hands through my hair, normally a constant movement. How silly is that?

So, is there a PhD thesis there?

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.

Trust Me to have a Rare Cancer!

When all this started, about six weeks ago, I was totally certain that I was going to be told that I had a bog-standard breast cancer (adenocarcinoma to the initiated) which is what my mother, my aunt, my paternal grandmother and my cousin all had (and, no, I do not carry the cancer gene). When I went up for the initial biopsy results, they told me that I certainly did not have that, but they could not be sure exactly what it was or which cells it started from. To be honest, that was the closest I came throughout this saga to totally falling apart.

Surgery came and went. I was feeling much better and put thoughts of histology away for two weeks. As the results day approached, I must admit that I got a little tense, but my brother came up to be with me and that helped enormously. It turned out, when I got the results on Tuesday, that I have a very odd (and rare) kind of cancer that is made up of lots of different kinds of cells. Kindly, they photocopied the pathology report for me so that I could bring it home and study it.

Several hours of Google searching later, I realised that it was VERY rare. I could find no proper trials, just a few small case series. Nobody seems to know much about it. There were no estimates of how things were likely to go. This was strange. I had not expected this at all. To be honest, I didn't even know that these tumours existed in the breast.

So, today I met the oncologist for the first time, yet another kind, caring doctor, who let me ask all my many questions and never hinted that I was eating into her brief time for lunch. And it certainly is rare: less than 1% of all breast cancers! 'Trust me', I thought, 'I can't do anything the normal way'. Of course, this has interesting implications, not least that nobody really knows the best way to treat it. So, we shall try everything: chemotherapy next, then radiotherapy. Fortunately for me, the nodes and margins were clear, so no further surgery is needed. I did ask if there were any experts anywhere in the world: the doctor said she would investigate. I did say that if she could find me one in Rome, I would be happy for the NHS to fund my treatment there. She laughed.

I must remember to tell her that if she writes me up, I want my name on the paper - at least I can achieve that one of my work objectives for the year!

The Importance of Silence

These last two weeks I have been rediscovering the importance of silence. Forgive me if this sound a bit like a sermon: if it is not your thing, please leave the rest. However, although for me it is at least partly religious, I think the principle holds even for the totally secular. Let me expound.

For the last many years (and I am not sure how many) my life has been noisy. I wake up to the Today Programme on Radio 4; the radio is permanently on if I am alone at home or in the car; in the evening I play music, or computer games. I entertain a lot: I like company but prefer to be at home, so I have people round to supper. I am a good, if not spectacular, cook, and I keep a tolerable cellar (i.e. a wine rack in the dining room!). The odd disaster can always be binned and curry sent for. Essentially, when I am awake, I am working, conversing, listening to the radio, or playing computer games. Silence was there none. Confession time: I even take my iPhone and iPad to the bathroom so that I can do emails/play scrabble with friends in that time.

Suddenly, I was ill. This wasn't a cold; this was serious. The days before the operation were filled with noise: people were here, my head was full of confusion, I could not think properly. Chronic pain is debilitating. Chronic pain mixed with terror and emotional overload even more so. For the three weeks between convincing myself I had to see the GP and the hospital appointment, I am not sure that I did anything sensible at all. Emails were read but not understood, I was emotionally labile (i.e. I wanted to curl up in a ball and cry) but was determined to pretend nothing was happening in case it turned out to be something else. I apologise to everybody for the shoddy work and things I missed. Once I knew, there was white noise in my head, fighting my every instinct to act normally.

Then it was over. The operation was done. I was home. Five days later, the drains came out. People came and went, still there was noise, but gradually it quietened. Then, amazingly, came the first evening I was completely alone - just me and Molly Cat. The first night I was sleeping in the house with nobody in the spare bedroom.

I hope this does not sound ungrateful. I cannot tell you how grateful I am for all the care and attention; how much I needed people with me and the safety net that provided. I could not cope alone at even the most basic level: I could not get the sexy socks on alone, lifting a kettle was difficult, I did not dare get into a bath if there was nobody else in the house. But, suddenly, it was right that I needed a little time alone. And it was a little time: a friend left at 9p.m. and was back at 10 the following morning. But that time was important. I was reclaiming my space and myself.

And it was then that I realised that I did not want noise all the time. I wanted quiet time. Time to reflect and, in my case, to pray. Time to consider what had happened and how I had reacted to it. Time to realise that there are more important things than emails and computer games. Time, above all, to realise that, despite the difficulties, there is cause to be grateful in this, because I am re-learning the fact that there are more important things in life. I have sat and pondered this paradox much: should I be grateful/happy that this has happened because it has put my life into perspective? I don't know. But I do know that I shall continue to meditate on this and that it might yield one or two insights.

In the mean time, I am starting to read my work emails again - a girl can be too good!!!

I am a computer addict

Just over a week post-op and I cannot believe how well things are going. Here I am, sitting at  home, at my laptop, in a fetching Kaftan and really sexy socks [NOT - THEY ARE THE BIGGEST PROBLEM - SO HOT], with a glass of wine and a grumpy cat (don't ask!), and feeling fine. I have not needed any paracetomol all day, I have virtually regained full use of my arm, the wound is healing and stings little and intermittently, and today I went to Mass, which was lovely and made me feel very loved.

All of this is wonderful, but there is also much else to be grateful for. When I first came home, I was rushing to the computer at every possible moment. I truly had not realised how wedded I was to all my electronic gadgets. The iPhone and iPad never left my side; if I was too sore for the iMac, I used the MacBook Air; the first thing I did every morning was surf all the gadgets. Rapidly, however, it became clear that with all my work emails not coming through (for which I have to thank all my work colleagues) there was little for me to do. I tried responding to the few that came through - they were ignored.

Bereft, I turned to computer games, but my arm was too sore for long stints, and suddenly I realised that they were actually rather boring. What to do? Listlessly, I picked up one of the books from my unread book pile.

I am horrified to say that it took me two days to finish it. My reading speed has severely deteriorated. But it will get better. I am now on my third book, and have started doing what I used to do - read a different book in each room! I am happy to report that I reach for a book before a computer and it was only the thought that I had abandoned this blog for a number of days that brought me back today.

So, dear friends, being ill is not unalloyed joy, but it has some things to recommend it. I have to report that I have a silly smile on my face.

God bless you all. Please keep me in your prayers.

How to Survive the Pre-operative Period

Three days post-op and I'm getting a little bored. This is largely because the drains are still in, so I am relatively immobile and can't do all the things I want to do. Fortunately, there is Wimbledon and the drains come out on Monday. However, I thought I would entertain you with the pre-operative period.

First let me say that nothing I am going to write detracts AT ALL from what I said about how wonderful the NHS is. I told you I would milk it, and I intend to, but none of the little hiccoughs actually made any difference to the care I received.

I was given the diagnosis by my wonderful consultant on the Friday. It was, of course, a shock, particularly since they did not know what the cancer was (and still don't). Foolishly, I had gone alone, convinced that I had a bog standard adenocarcinoma of the breast and that I could handle that. I rather fell apart, I'm afraid. They were exemplary, explaining, gentling, leaving a nurse with me at all times. By the time I left to come home I had a date and time for my CT scan (Monday at 13.15, carefully written down for me by the breast care nurse so that I would not be confused), a date and time for the results of the CT scan, and a date for surgery.

On the way home, I phoned a friend we shall designate as R. I needed somebody there. He was there within half an hour. We played outdoing the gallows humour all afternoon and evening, and had a rather boozy supper. However, before all that, about an hour after I got home, the phone went. It was the CT department.

"We need to make an appointment for your CT scan" said the voice at the other end.

"But I already have an appointment", I said, and read out the date and time on my piece of paper, which I had already shown to R who had agreed to take me.

"No you don't" was the firm reply. "I have nothing on the system. We can see you on Monday at 16.30"

Having confirmed with R that he could make that, I agreed and amended the details. However, you will  understand that my brain was not at its best. Although I put 16.30 into my diary, my head registered 6p.m. Monday duly arrived and I checked my diary. I was amazed at the time I had put down. That wasn't right. I was sure it was 6. Eventually, I rang the department at about 2p.m. to double check.

"But we were expecting you half an hour ago" said the voice.

 I have never been so grateful that I had had a witness. Otherwise I would have thought that I was going mad. Happily, they could do me at 16.30 and it all went ahead.

Things moved on. The only thing I as still waiting for was the pre-operative assessment appointment. Eventually, it turned up: for 08.15 the day before surgery. I am not good in the mornings, and the thought of having to be at the hospital that early the day before I had to be there at 0700 for the surgery was uninviting. I rang up. Would it be possible for me to go later in the day, since I live alone and getting there that early was going to present a problem?

"I'm afraid not" said the voice at the other end. "You need to be at the Gynae. clinic since you are having a gynae. operation". PANIC.

"But I'm not" I bleated. "At least, not unless they forgot to tell me something."

"Oh. Just a minute." Long and scary pause. "Sorry, no that was our mistake. Yes, come at 1100 instead."

It was at that point that I decided to arrive for surgery with a large placard saying 'Please only operate on my right breast'. Needless to say, this proved unnecessary.

The pre-operative period is a roller-coaster ride: up one minute, down the next. You need lots of company and friends, but no fuss. You need a lot of sympathy, but none of it overt. You also need space, and peace and quiet. I also needed to pray. Above all, I needed people to take charge. I needed them to tell me what came next. The most reassuring words to me, spoken by many a professional in the last few weeks, are "I am going to treat you just like any other patient, because that's my job."

Once again I say, the NHS is a treasure. Do not let us lose it.

 

 

 

A tribute to the NHS: Experience of a Surgical Cancer Ward

At last the waiting was over. After all the tests and unpleasantness, which I might get round to some time, I had to be on the ward at 0700 for surgery yesterday. My PA was on hand. She had slept here the night before, was taking me to the hospital and then returning to look after Molly Cat. So far so good.

The evening before (i.e. Tuesday) we had supper with a friend, but by eight I was exhausted and excused myself. I needed an early night. By nine I was asleep. Molly was in and out. She was clearly confused. I woke intermittently and by 2.30 a.m. was pretty much awake. Molly kept trying to get me to talk to her. By 5.30 there was no point in pretending any more. I got up, fed her, went to have my bath. Normally I am the person who cuts everything too fine, but I was too twitchy and nervous that morning. I could hardly bear to say goodbye to Molly. We left the house in a hurry at about 06.30.

On arrival, we were directed to the waiting room. Why do staff feel it necessary to have day-time television on at these times? I really did not wish to see the shenanigans of the special police, or the latest in house re-design. At last, my consultant arrived: she was kind and welcoming, and immediately took me to my room: wonderful surprise, I had my own room and toilet.

We went over the procedure again. I was consented for everything. The anaesthetist came. Every potential complication was explained. For the first time that day, I started to calm down. They were so obviously competent. Then they disappeared. Next step, Nuclear Medicine for the injection of the radioactive material for the sentinel node biopsy. Only problem, nobody had told me. I got the shakes again.

At last it was time. Gowned, tested and starved, I was wheeled to theatre by a cheerful porter. He chatted and made me laugh. He told me about the patient charter and how he 'had to be nice to patients these days'. He got me there rapidly and safely.

I shall gloss over the unpleasantness of the fact that my veins had shut down. Happily, I was not aware as the difficulties mounted in theatre and my blood pressure soared to 220. The next thing I remember is being in the Recovery Suite. It seemed like only minutes later that I was on my way back to the ward. That was about 4.30 p.m. yesterday. By 11.00 this morning, I was home. How did this miracle happen?

Firstly, I cannot praise the staff highly enough. Every individual felt professional, unrushed and competent. They explained, they offered support and they never tired of responding. Within minutes of being back, I was given a cup of tea in a beaker with a straw. They explained that I had had morphine in theatre. They explained the analgesia that had been written up. They told me about the drains, organised the bed, helped me to be comfortable. Within ten minutes, my brother and I were having a normal conversation and a good laugh.

Shorty thereafter, the consultant joined us. She had asked me previously if she could speak freely in front of my brother: she now confirmed this. She told us how the surgery had gone, what the next steps were and the timescales involved. As far as I could tell, she had nothing else to do that evening, although I knew that she had been there since eight that morning.

By now, my cheerfulness knew no bounds. No doubt, some of it was the morphine euphoria, and a lot of it was relief at the operation being over, but I was pain free, eating and drinking (they had kept a cheese sandwich for me to eat after 7 pm: how kind was that?) and, despite the discomfort of the two drains and the drips, I felt fine. My brother was amazed; a confirmed believer in private medicine, he was almost converted to the wonders of the NHS.

I will not bore you with more details, but suffice it to say that I needed no more than four paracetomols through the night, that my sheets were changed when I went to the bathroom, that the observations were carried out competently and quietly, and that I slept as well as could be expected. By 6.30, I was waiting to find out if I could go home. Three conditions had been set, and I had met them all, but the drains were pouring fluid and I was afraid that I would have to stay another night. Despite the kindness, I wanted to come home!!

The Consultant team was on the ward by 07.45. I was going to be allowed home. There was a list of things to do: 'what time can I go?' I asked, 'so that I can tell my brother'. About 10.00 they said. I was disbelieving. My recollection from my days as a hospital doctor was that patients rarely left the ward in the morning. Incredibly, by 10.00, my drips were down, I had been shown how to empty, measure and re-set my drains, I was dressed, I had all my letters and appointments and had  fitted with a temporary prosthesis. I even had my sunglasses on when my brother arrived.

It is now coming towards eight in the evening. I am relaxed. I have had two more doses of paracetomol. I cannot believe how smoothly it has all gone. I know this will not last. I know there are rough waters ahead. But I have seen the best of our NHS and I want to pay tribute. We cannot let it die.