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!!
Wednesday 25 September 2013
Saturday 14 September 2013
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.
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.
Wednesday 11 September 2013
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?
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?
Thursday 5 September 2013
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!!
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!!
Wednesday 4 September 2013
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?
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?
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