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!!