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!!