Monday, 29 August 2011

Howling in the shower and hugging the toilet bowl

Not long after I hopped on board the Cancer Express, an old school friend, Chris, sent me several really useful emails about her own experience with cancer: she had ovarian cancer a few years ago and so understands about the physical side-effects of some of the treatments and of course the emotional impact that a cancer diagnosis and subsequent treatment have, even if you are normally a pretty well-balanced person (moot point in my case!). One thing she wrote really stuck in my mind - she said that one day she just felt so overwhelmed and hopeless about it all (I am paraphrasing, so forgive me, Chris) that she remembers just standing in the shower, howling with rage, fear, frustration, sorrow - a gamut of emotions. That resonated with my yesterday, when I spent the whole day hugging the toilet bowl, retching and bringing up every last morsel of food I have eaten over the past two days - which isn't a lot, in any case! Poor Neil came out of his shower yesterday, to find me slumped next to the loo in our little en-suite, sobbing and saying I just couldn't take it any more. I just couldn't see how I could get through another week and a half of treatment, feeling so awful and knowing that further radiotherapy is likely to make me feel worse.

Of course, opting out of the treatment just isn't an option. I know I have to carry on with it, but oh, it's so hard, feeling nauseated most of the time, dreading cleaning my teeth because I know it will make me sick, unable to eat anything except a few mouthfuls of food which will come back up. It destroys what little appetite I do have, knowing that my food won't be there for long - and those who know me are well aware that normally my appetite is pretty good! I love my food, I love the flavour and texture of different foods and it's a strange experience for me not to have any appetite. My food tastes a bit metallic now too, due to the radiotherapy. At hospital today, I was reading the latest edition of the Royal Marsden newsletter and it had a long article about radiotherapy, in which it stated that very few patients get sick as a result of the treatment - I guess I must just be one of those very few! Mind you, as I said to Neil coming back from hospital today, given how the odds have gone against me so far in all this, from diagnosis onwards, I shouldn't really be surprised that I fall into this category!

It was strange going to the hospital on Bank Holiday Monday - no cars in the car park and an air of quiet, almost sleepiness, about the place. Had my scan and got zapped and then we went out to the car park, with a brief stop for me to vomit into the flower bed. I don't normally feel sick immediately after the treatment - normally I manage to hold on till I get home, but not today - so, to those of you who are taking me to and from hospital for the rest of this week - apologies in advance!

I meant to mention in yesterday's blog that I got a letter from Queen Victoria Hospital offering me an outpatients' appointment with the consultant plastic surgeon, to start the process for dealing with my facial palsy - nothing will happen till 2012 and even then it will be in stages - probably a brow lift first, then we'll look at what we can do about my cheek and lack of animation. Yes, dear readers, in two years' time I could look 10 years younger - and all on the NHS!! It's good to think that something is going to happen beyond the oncology, although I don't kid myself that the aesthetic process will be straightforward and pain-free: it will be surgery, which has its own risks and side-effects. I also don't kid myself that once I finish radiotherapy, that's it for the oncology side - it will be ongoing for a long time, with further check-ups, scans etc. It's just the way it is.

I started today's blog with a mention of an old school friend - and during this past week, my friend Fiona reminded me that it was 41 years since she and I started at our school and met each other. Our little "Gang of Four" from school (Morag, Lindsey, Fiona and me) were a tight little group and even now, all these years later and with many miles between us, when we get together the years just roll away and we are those giggling schoolgirls again. We don't get the chance to meet up very often, due to living in different places and all having busy lives, but the fact that we are still in touch and care for each other is testament to the importance of friendship and shared memories. Chris and I were good friends in early years at GHSG but had lost touch and it's been great being back in touch and her immense generosity in sharing her experiences with me and helping me has been truly humbling. Without friends, we would be very much  the poorer.

So, Day 24 - 6 sessions to go. It's Bank Holiday Monday, our daughter is at Notting Hill Carnival (having unfortunately had her phone stolen yesterday while at a festival in Clapham), our son is sorting out stuff for starting university and my husband is pottering in the garden. It's good to feel that we can do "normal" things, even if we are living with something unexpected and difficult.

Saturday, 27 August 2011

The glimmer of light gets do some of the side-effects!

A whole week since my last blog! I wish I could say the reason for this is that I've been living it up, on a fun-filled holiday sampling lots of local food and drink, swimming, walking and doing the usual slightly bonkers activities that Neil and I usually do on holidays but unfortunately the truth is much more mundane. I have spent the last seven days fighting the fatigue and sickness that accompany my radiotherapy and updating my blog has been pretty low down on the list of things I have to do. This is a shame, because I do find it cathartic to write my blog - it lets me set out my thoughts and feelings and it's a way to let you all know how things are going but this week it's just not happened.

Another 5 sessions of radiotherapy done so I only have 7 more to go - that's one full week and then Monday and Tuesday of the following week. It doesn't sound much but this last week and the forthcoming sessions felt/feel harder for me than when I was right back at Day 1. I am now producing hardly any saliva, so I have a permanently dry mouth and any saliva I do produce is horribly thick. This, in fact, is what is making me sick so much. It took me a while to work out, but it's not the food that makes me sick, it's the fact that chewing and swallowing are hard because my mouth is so dry. I have started taking painkillers half an hour before I sit down to eat and that helps a bit, and I sip iced water throughout the day to try and keep my mouth moist but I have brought up my food more often this week than I have kept it down. It's great for weight loss but I wouldn't recommend it as a diet!! The worst time (and I apologise for the detail) is when I clean my teeth. As soon as I brush the back molars on the left side of my face, because my cheek and mouth are inflamed and swollen, I start to retch. That's when dinner tends to come back up...oh, hello spaghetti! You didn't stay long, did you? Being sick when you have very little saliva is pretty gruesome. And of course, once I've been sick I have to clean my teeth again, which makes me retch and so the cycle goes on. I have to admit that teeth-cleaning at night is usually accompanied by tears. It's slightly better in the morning, but still usually accompanied by some retching. I have now moved from a small toothbrush, to a child's toothbrush to a swab on a stick, so that at least my teeth are getting some cleaning rather than none at all. It's not perfect but I can't cope with anything else.

I saw the consultant yesterday at Clinic and I told him about the retching and he prescribed me some saline mouthwash to gargle with. I took it home, tried it - and it made me retch! So I don't think that's the answer! It felt like having something with a really oily consistency in my mouth and it was deeply unpleasant. When he had a look at my mouth and throat, the consultant said that I am in very good condition considering the stage of treatment - well, all I can say is I really, really pity other people going through this because I feel like a great big pile of poo most of the time!

The tiredness is the other main side-effect - this morning I didn't waken up until 10 o'clock, which is practically unheard of for me - I think the last time I slept till that time was Before Children. To be fair, I didn't fall asleep for ages, despite having taken a sleeping tablet, so I think I will take my tablet a bit earlier tonight. I normally get up at half eight to get ready for hospital, get back from hospital usually around 11 and go back to bed for a couple of hours. Then get up, maybe put a load of washing on, read for a while, listen to Radio 4, snooze and then try to eat a little dinner when the rest of the family gets home, zap my eyebrow for an hour, stay awake till about 10 and then go to bed. It's not an exciting routine, by any means, and I am rubbish company at the moment.

Today, being Saturday, I didn't have to go to hospital - yippee! My friend Kirsten, whom I have known since we worked together at the National Audit Office in 1987, came over from Oxford to visit - she was going to come over a fortnight ago but she had a streaming cold - not the kind of thing to pass on to me at the moment! - so we postponed till today. It was lovely to see her as we hadn't seen each other for a couple of years. We had a good catch-up and we bored her with our photos of New Zealand :-D Then she and I wandered down into Oxted to be "ladies who lunch" and sat outside the Italian restaurant. I had a bit of pizza and took the rest home as there was no way I could eat it - huge, but lovely! My friend Celia from church came past and stopped to say hello (she phoned me yesterday and I had to end the phone call abruptly because I was about to be sick -sorry, Celia!) - that's the kind of place Oxted is; whenever you go out, you see someone you know and can stop and have a chat. I love the friendliness of living in a small town. Anyway, I was pretty tired after chatting and eating, so we came home and Kirsten set off back to Oxford, with promises of return visits etc - I shall hold you to that, Kirsten!

Nothing much else has happened during the week, apart from my friend Dianne calling in to visit on Tuesday after work. She brought some lovely Lindor chocolates, which under normal circumstances would have been demolished in an evening! I have managed to eat a few and the great thing is that it's on doctor's orders! I have to eat as many calories as I can so if I want chocolate, cream or cheese, I can have it. This week I really fancied a fish finger sandwich, on soggy white bread and it tasted like a gourmet meal! I do try to eat healthy foods, so try to have fruit smoothies, yoghurts etc and pasta with cheese sauce. I can't really chew vegetables very well at the moment but I look at it that in a few weeks' time I can start to eat as healthily as I used to and my body will survive till then. I would be surprised if I am consuming more than about 500 calories a day and probably not even getting the benefit of those calories because so often I am bringing it back up! Now you see why it's a drastic diet!!

 Sometimes the days just blend into each other and I have to remind myself what day of the week it is! I am sitting in the conservatory with my lovely husband, Radio 4 on, church bells outside, door open and a flock of parakeets just flew past, squawking merrily, Sybil the cat is grooming herself and I have my zappy thing going on - apart from that last item,  I could almost forget that there's anything going on. It just feels like a pleasant late summer evening. Monday will see a return to reality (yes, I do have to go on Bank Holiday Monday so they can keep the routine going), but I still have Sunday as a buffer before getting back to the hospital routine.

My house is bursting with flowers - my lovely husband bought me some glorious sunflowers and gladioli, Kirsten brought me some beautiful deep pink and red gladioli (I am looking at them now, as they are on the table in the conservatory) and I got a stunning bouquet yesterday from the 41 Club, of which Neil is a (non-attending!) member - a lovely surprise. Having flowers around, with the colours, scents and intricate structures, once more reminds me of the wonders of nature and how beautiful our world can be and reminds me too of how kind people are. I was saying to Kirsten today that the knowledge that so many people are thinking of me, or praying for me, is really comforting to me and it's true. Just to know that I, and my family, are being lifted up  in people's thoughts is hugely humbling and appreciated.

I'd better stop before I start to cry!! Have a lovely evening and make the most of your loved ones xx

Saturday, 20 August 2011

Is that a small glimmer of light ahead?

Could it possibly be that I can spy a tiny wee glimpse of light at the end of the tunnel? I am now 60% of the way through my radiotherapy treatment and it seems to have given me a bit of a psychological boost. It was helped by the fact that when I saw the consultant, as I do every Friday, he said my mouth and throat were very good compared to how patients usually are at this stage (all I can say to that is, I really, really pity them, because my mouth and throat are achingly raw) - somehow, that made me feel better too. I mentioned that I am having trouble sleeping and he gave me some sleeping tablets to try - I am not a fan of sleeping tablets but I must admit, I took one last night and slept straight away and like a log, so I shall continue to use them while I feel I need to. We talked about my skin (red but I'm doing the right thing by massaging it with E45) , my dry mouth and gloopy saliva (not much to do at this stage other than keep sipping iced water) and my difficulty eating - he recommended taking a couple of painkillers half an hour before eating to see if that helped.

The nausea is still there but I haven't been sick for over a week, although there has been a lot of what we call in Scotland "the dry boak" - where you retch and retch and, painful though it is, nothing comes up. It's a classic example of putting in a lot of effort for no result!

Anyway, back to yesterday. Came back from hospital, had a rest and then Neil was off work in the afternoon so the two of us went down into town, because for once I felt hungry so we thought we should capitalise on it and have lunch. We sat in the sun outside our local Italian and I had a few forksful of risotto and a couple of mouthfuls of spaghetti carbonara - tasty and filling. I had lost just over 3 kilos over the past week so I guess my stomach has got used to having a bit less food. I wouldn't recommend the radiotherapy diet to anybody, though - it's a bit drastic! Today all I have been able to eat is a few mouthfuls of ice-cream (Ben and Jerry's Strawberry Cheesecake, I think) - normally I am not an ice-cream fan, but it slips down easily and soothes my throat.

It was our son's birthday yesterday but we couldn't do the usual thing of going out for a family meal because I wasn't up to a chatty, family meal out, so he ended up doing his thing with his friends, our daughter did an overnight babysit and Neil and I stayed in watching tv. I feel guilty that my illness and treatment are having such a huge impact on our family life. I couldn't even get out to buy birthday presents for our son but had to ask our daughter to pick up things for him. I know it's not the end of the world but it is one more example of how things I used to view as normal are anything but at the moment.

Still, and to get back to the opening thoughts, I  can finally see a bit of light at the end of what is a very long tunnel. It's a wee speck at the moment, but it will get closer and bigger over the next couple of weeks. Why, this time next week I will be in single figures! Then it's a romp towards the finish line. In Marathon terms, Monday is my Mile 17 moment, so my Runners World pom-pom wavers are gearing themselves up for a virtual shake and shimmy :-) In honour of the occasion, I shall wear my Runners' Arms t-shirt to hospital on Monday. For those of you thinking of running a marathon, I can highly recommend the Mile 17 pink champagne stop, inaugurated at Flora London Marathon in 2007 and repeated every year since - the last 9.2 miles just fly by! I can't have the pink fizz this time, but I can definitely have the pom-pom shaking!!

Tuesday, 16 August 2011

Happy Hump Day!

Yes, I am now exactly halfway through my radiotherapy treatment: 15 sessions done, 15 to go. It's like getting to the half-marathon point in the London Marathon (the only one I've ever done!) so it's like being just the other side of Tower Bridge, I think? Seasoned VLMers can correct me if I've got it wrong.... I remember, from those dim and distant days of actually running races, that it's always the middle third I find most difficult, so in a half-marathon, it's miles 5 - 9, in a full marathon, miles 11-18. To continue my running analogy, it's not really a surprise to me that I am finding the "middle 8" the most challenging. Starting from late last week when I started really feeling the side-effects, to a brief respite over the weekend, when rest and no radiotherapy for two days helped me start to feel better, to now, when two days back into the radiotherapy I am swallowing past a razor-edged tennis ball in my throat and feeling that exquisite pain of mouth ulcers - you know it's going to hurt when you run your tongue over your teeth but you do it anyway! Anyway, the Hump Day is a great milestone as from now on, I have fewer sessions to go than I have already had - psychologically, quite a boost!

My radiotherapy was early this morning, at 8.30 am. This meant I had to set the alarm - shock to the system after several weeks of just waking and rising when I felt like it. Our next door neighbour, Hugh, was my chauffeur for today and it was good to have the chance to chat to him for a while. He is Scottish and studied more or less the same degree at the same university as I did - although I do like to keep pointing out that he was a good few years ahead of me! - so we share a common love of things French and a common horror of poor grammar and spelling! It's great for me to give full vent to my bugbears and know that he will be equally horrified by them as I am :-) Hey, you've got to grab your pleasures when you can, right?

The reason my appointment was so early (we were back home by quarter past nine) was because this afternoon I had to go and see my physio and speech therapist at East Grinstead Hospital. After a couple of hours of rest (that early morning start was so hard.....) my friend Caroline collected me to go to the Queen Vic (hospital, not EastEnders pub). My physio signed me off for my shoulder although I have to continue doing the passive exercises she gave me and my speech therapist has given me permission to use more electrodes on my face to zap some muscle memory, although not until after my radiotherapy finishes and my new facial swelling has gone down. In fact, as I write this, I have a little electric current zapping through my forehead - bet you wish this was a live video link, don't you? She also gave me lots of samples to try to stimulate more saliva in my mouth, which is starting to feel quite dry and is referring me to the top plastic surgeon at the Queen Vic, who specialises in facial palsy, so that I can get on the list for a brow lift initially and then whatever else needs to be done. It's so encouraging to be able to look beyond the oncology and think that there might be something else happening in my life other than this cycle of radiotherapy.

I am loving the idea of the anti-list that Womble suggested and I see from the comments that quite a few of you also like this, so today's anti- list was: today I shall not - do any washing, do any ironing, do any cleaning or vacuuming or do any cooking. I have stuck to most of it but do admit to a small amount of cleaning of work surfaces in the kitchen and to loading a few things into the dishwasher and sticking it on. I don't think that's too bad! Tomorrow my anti-list is pretty much the same :-D

Our sitting room has been commandeered by our two children this evening, who invited some friends round to watch a film (it seems to involve a lot of bad language, so if there's a sure-fire way to make us leave the room, it's choosing a film like that!) so Neil and I are reclining on our bed, me updating my blog and with wires stuck to my forehead and him reading a book (The Observations by Jane Harris - I thoroughly recommend it) - who says romance is dead, eh? :-p

I never know quite how to close these posts without it sounding like a trite recital of thanks and appreciation but my thanks are always totally genuine and heartfelt. Without support and help, this would be a much harder and very lonely journey. As it is, I feel surrounded by love and care and bolstered by the many thoughts and prayers coming my way. Nowhere do I feel more loved and cared for in my own home (even if I get turfed out of my sitting room in favour of some doubtful film!).

Saturday, 13 August 2011

If you shake me, do I not rattle?

First things first - an update on the cars which have been transporting me to hospital. On Thursday I had my first experience of being in a Smart car and rather lovely it was too! It was the sporty version and it was pretty nippy, actually. Then on Friday I was in a big BMW, so this week has seen lots of variety.

I did intend to post yesterday but unfortunately, I am suffering quite badly from the side-effects of the radiotherapy. Apart from the expected sore throat and mouth, I have very bad nausea and haven't been able to keep any food down for the last 48 hours (although I had a tiny bit of cheese sandwich earlier this afternoon which so far - fingers crossed - seems to have stayed down). Of course, having such a sore throat means that being sick is extremely painful so there have been quite a few tears at Sweeting Towers. It started yesterday morning when I arrived at hospital and was sick outside the building. I managed to see the consultant quite quickly, thanks to my chauffeur for the day, Caroline, who went in and told Reception that I wasn't well and asked if I could be seen sooner rather than later. There then followed the ignominy of bursting into tears in front of the consultant.....I hate doing that. It makes me feel so weak. However, she was used to it and gave me some tissues and said it was okay to be upset if I am feeling bad and that her job was to make me feel better. So she prescribed me stronger painkillers, some anti-emetics for the sickness and some *whispers* laxatives because the painkillers could make me constipated. I tell you, the ripple effect of those little lumps on my jaw is pretty impressive! Caroline and I waited outside until it was time for my radiotherapy and at one point, I was on my own while she went in to pick up my prescription (I was feeling decidedly ropey again by this time). A patient came out, complete with breathing tube up his nostrils and a sandwich and drink and asked if he could sit down at the end of the bench where I was. I said of course, as long as he realised I might be sick any minute....he seemed fine with that but then took out a cigarette, at which point I said that if he was going to smoke I would have to move because I would definitely be sick! He then took himself off to another place but it made me wonder why anyone would think that it's okay to light up next to someone who is obviously a cancer patient?? - to say nothing of the fact that all around the green area outside, where we were, are signs saying that the Royal Marsden is a no-smoking hospital. I may sound like a hardline anti-smoker, but so what if I do? I can't help feeling that patients have some responsibility to their own health by ceasing to do the things which they know make them ill. I know the argument about smoking being the only thing they can choose to do, or that it makes no difference whether they smoke or not because they're so ill anyway, but at the very least there should be a bit of consideration for fellow patients.

Rant over!

I hate feeling so unwell and having so little energy. Today I got out of bed at about 9 am, went back to bed an hour later, got up and then returned to bed at about 1 o'clock and have been lounging about either in bed or on the sofa since then. I am still in my pyjamas, for goodness' sake! Neil keeps telling me it doesn't matter and to rest up and take it easy but it feels odd not to be doing things. Amy is cooking dinner this evening and she and Adam will cook lunch tomorrow, so they are really pitching in. Neil bought loads of things that might tempt my appetite and be easy for me to eat, so I have a fridge piled high with goodies but no real appetite.  And to think that I'm not even halfway through the treatment! Goodness knows what I will be like by the end of it, but I can tell you that I wouldn't recommend the radiotherapy diet to anyone.

I seem to have my Moaning Minnie head well and truly screwed on today. Sorry, folks. Just finding it rather hard at the moment and not seeing much prospect of it improving in the short term.

Wednesday, 10 August 2011

Dr Moss will see you now......

...or, in other words, how weird are your dreams? Because mine are definitely on the surreal side of bizarre! Take last night's - I went to our local health centre to meet my new GP, following my previous GP's retirement, and was ushered to a desk at the end of a long room. On the desk was a vase of roses and sitting at the desk, looking very business-like and professional, was Dr Kate Moss. Yes, the model. My face must have registered my surprise at seeing her masquerading as a doctor because she said to me "I know, you think I must be some kind of silly bimbo because I am a model but I have been a qualified doctor for 14 years." I must have accepted this because I then started telling her why I needed to see a doctor!

I've had pretty vivid and unusual dreams over the past few months but this is the first where I've remembered enough to make it worth sharing. So, any dream analysts out there? Can you tell me what it means?

In other news, the routine of home-hospital-home continues. I have now completed Day 11 of 30, so am just over a third of the way through my radiotherapy. I've now got some of the side-effects I was promised (oh, lucky me!) with a sore throat which  makes swallowing feel as if there's half a tennis ball lodged on the left-hand side of my throat, edged with some razor blades, and some mouth ulcers too. All of this makes eating a bit difficult but at least I haven't lost my appetite :-D I just have to eat more slowly and try to swallow on the right side of my throat - which is pretty impossible, really!

I had a lovely morning today - spent it walking along the seafront in Brighton, letting the sea air blow away some cobwebs and just watching the power of the sea. I think I've said before that I find nature very calming and the sea especially so: it just ebbs and flows, every day and every night. It's never still and the water I watched today is joined to the water I saw ebbing and flowing in New Zealand earlier this year. The sheer scale of it is overwhelming, really, and makes me realise once more how small a part I, or any other human being, plays in the bigger picture that is our world. It was a refreshing change to watch the sea going about its business after the madness that's been on our tv screens and in our newspapers over the past few days. I have found myself shaking my head in disbelief and sadness at the behaviour and attitudes - both of the rioters/looters and of those discussing what's happened. There seem to be a lot of people who are using what's happened as a reason to air some pretty abhorrent views.

On a lighter note - I have been enjoying being chauffeured to hospital in some rather lovely cars this week. On Monday, it was a very flashy Range Rover. Yesterday, a Land Rover Discovery. Today, a VW Eos convertible and yes, we did go topless :-) I wonder what car tomorrow will bring? I know that on Friday it is a BMW, so let's hope tomorrow's chauffeur keeps up the standards.....

I shall report back tomorrow on the outcome. In the meantime, over and out!

Saturday, 6 August 2011

Day off - yippee!

Greetings, one and all......and so the first full week of radiotherapy ends. What can I say about it? Not much, really. I choose my music, my chauffeur for the day arrives, we drive to the Royal Marsden, I book in, I get called, I give them my music, I get gowned up, they call me again, I go in, I confirm my name, dob and first line of my address, I get bolted down to the table, they zap me, they unbolt me, give me back my music, I get dressed and my chauffeur takes me home. Just to get a bit of excitement, on Thursdays my routine is now dental hygienist, radiotherapy, bloods and on Friday it's consultant and then radiotherapy. There's something comforting about the certainty of routine, isn't there? I don't need to think about too much - in fact, my most challenging decision is what music to listen to.

Talking of music, thank you for the suggestions I have had. This week I stuck mostly to classical music, with some Schubert, Mozart and Bach amongst others. On Tuesday, one of my radiographers said I could bring my iPod instead of a cd, as they have an MP3 connection, so I thought "Yippee! That gives me much more choice" - which it did on Wednesday but on Thursday I was in a different radiotherapy unit, as my machine was being serviced, so I gaily handed over my iPod only to find out that this unit didn't have an MP3 connection, so I had to listen to the CD that they provided - Take That, some unidentified female singer, then Travis......bearable, but not my choice! So on Friday, when I was in yet another unit, I took a CD with me to be sure of having my choice of music. It might sound as if I am making a really big deal out of choosing what to listen to during what is only about 15 to 20 minutes, but it's one of the few areas where I have any kind of control at the moment, so it is very important to me that I exercise that control. Control freak? Moi? Noooooooo!!

I have stayed remarkably side-effect-free so far: apart from getting tired more quickly and the skin on my neck starting to feel red and tight (eased by increased resting and slapping on E45 cream respectively). That's not bad after 8 sessions - the consultant had a good old peer down my throat yesterday (and yes, he did make me say "aaah" - I thought they only did that in films!) and said it looked fine. However, this morning I noticed that my throat was just starting to feel a bit tickly when I swallow and that there is now a faint metallic taste in my mouth, so perhaps this is the start of some of the side-effects. I know I will get them, so I am kind of prepared. That is not the same as saying I will take them in my stride, but I at least know what to expect.

In other news....well, there's not really much other news. Amy and Adam had some of their friends round on Wednesday evening to make inroads into the leftover meat from our bbq on Sunday evening. We now have two recycling boxes full of beer bottles and cans, so the recycling collectors are going to think we are a bunch of soaks in this house. Maybe I should stick a notice on it explaining that it was "Young People" who consumed it all :-) Needless to say, there was rather a lot of salad left over - seems green stuff and beer don't go that well together when you're in your teens and early twenties.

I don't have any treatment at the weekend and it's been really nice today not having to go to hospital but to be able to spend the day at home, doing weekend things: domestic bits and pieces, watching mindless evening tv, you know the kind of thing. Tomorrow we have been invited for lunch to our friends' home - we haven't seen them since my diagnosis, so it will be good to catch up with them and their children. Then on Monday it's back to the hospital routine. By this time next week I will have had 13 treatments and will be almost halfway through the course.

Oh, I know what I meant to write - I was listening to Desert Island Discs on Friday and Danny Baker was the castaway. He has recently returned to broadcasting after taking time off to have treatment for mouth and throat cancer and was talking about his treatment - but only a little because he doesn't really want to focus on it too much. One of the things he said that resonated with me was that he didn't ever feel or say that he was battling cancer but that his body was a battleground where the fight was between cancer and the doctors. I thought that was a perfect description, although I do think that there's a part for the "host" to play - by trying to do what the medics recommend and by trying to remain positive rather than just giving up. That's how it seems to me, although the staying positive thing can be difficult. This week has been good - no tears, no upset, no middle-of-the-night fretting. It might not continue to be like that if I start to feel the side-effects more and if the tiredness gets worse, but at the moment it's fine.

A big thanks to my chauffeurs for the week - Karen, Nick W, Sue, Nick T and Pat. Also to Celia, for dropping round a very tasty lasagne and to Christine for the coulis and sweet peas. Once more, I am humbled by how generous people are with their time and energies. Amy and Adam continue to keep me grounded by reminding me that I am still Mum and Neil continues to be amazing with his unstinting support and, above all, showing me all the time how much he loves me and that as far as he is concerned, I am still beautiful. I shall book the optician's appointment soon ;-p

Bedtime so it's over and out from me. I have been trying to remember what it was that happened and made me say to Neil "Oh, I must remember to put that in my blog!" and I just can't think what it is. Maybe it will spring into my mind at three o'clock in the morning and I shall have to dash downstairs and let you all know, ha ha!

Tuesday, 2 August 2011

Shostakovich, Bach and then.....?

Ah, simple pleasures - they can be the best, can't they? I must admit that I get an inordinate amount of pleasure out of very small and simple things: listening to the birds singing, seeing the sunshine through the leaves of the trees in the garden, casting dappled shadows on the grass, the smell of the earth after a sudden downpour - I seem to appreciate the beauty and wonder of nature much more now. Perhaps it's because my horizons have shrunk in recent months so my sum of experiences has narrowed to home-hospital-home on a permanent loop. There's no longer the stimulus of the work environment, commuting, planning what to do during lunch break, fighting for a seat on the train, working out how to deal with situations, so maybe I just have more time to stand still and see what is around me. I guess it's like that poem " What is this life if, full of care, we have no time to stand and stare?" It's rather refreshing to have stopped the world a little bit and have the time and the chance to take a fresh look at things I have just taken for granted but which really are pretty damned wonderful.

One of my current simple pleasures is choosing the music to listen to during my radiotherapy sessions. I have been taking in a cd every day but yesterday I found out I could take my iPod and they would plug it in for me - this was good news, as up till now I have had to scrabble around to find the cds I haven't already packed away in the basement or loft after transferring them onto the iPod. This gives me much more choice. I've been enjoying the chance to share/inflict my musical tastes on the radiography staff at the hospital :-D  Bach today but haven't decided what to choose tomorrow. Actually, today it didn't take too long because I didn't need a scan (I have had scans most of the time before the actual radiation so they can check that everything is still "fitting" properly etc). Yesterday's scan was perfect so I only need them once a week. Without the scan, the actual treatment only takes about four or five minutes - in fact, it takes longer for them to bolt me to the table, check all the measurements and line me up and then unbolt me afterwards than the actual zapping!

Another pleasure was on Sunday, when we invited a few local friends over to have a bbq in our garden - something I really wanted to do, just to be sociable and to thank people for helping us out. The weather was perfect, the company was great, Adam was i/c barbeque and did a splendid job, Amy helped me prepare all the salads and Neil spent ages getting the garden ready and sorting out the seating etc. On the day, all I had to do was sit and enjoy chatting to friends, as Neil and the children just told me to sit down if I stood up to try to do anything! There were several young children there and they had a great time running from the basement to the garden to the conservatory to the basement to the garden was so lovely to see them enjoying themselves and their parents could relax and have a glass (or four!) of Pimm's. I got a bit tired at about half six so I just told Neil I was going in for a lie-down but didn't make a big deal of it, as I didn't want people to feel they needed to leave. I had just had enough -the tiredness is beginning to kick in but luckily the nausea has passed - phew!! I now have half a jar of crystallised ginger to get through :-D

I had a wee bit of a success on Saturday night - after feeling a little bit of a spasm in my upper lip, I had a look in the mirror and thought my mouth looked a tiny bit different, so I thought I would try some of the letters I have found particularly tricky, like "p" and "b". I thought my "p" was definitely better (and yes, I know if you say that out loud, it sounds like some bizarre competitive weeing competition) and so I subjected Neil and Amy to a few minutes of me saying "Listen, does it sound better "pppppppppppppp"? They thought it did so I was very happy and then when I went to bed and was going through my usual brush teeth-dribble-wipe mouth routine, I found I could spit much better, and without putting my finger at the corner of my mouth to hold my lip together. It could be a bit of very slight nerve regeneration or some crossover from the other side of my face, but whatever it is, it's good. It makes me smile to think that I am celebrating being able to spit - I can return to my home city of Glasgow safe in the knowledge that I can fit in on Sauchiehall Street any Saturday night now :-D

That's about it, I think - daily visits to hospital continue, with our wonderful friends being as generous with their time as they are with their affection and chauffeuring me there and back. Another lovely food parcel on our doorstep this afternoon from Celia (dinner sorted for Neil and me for this evening!) and a visit this morning from our neighbour across the road with her gorgeous little boy, who is at the Velcro baby stage and clinging to his mummy all the time but who let me take him for a little stroll round the garden so that mummy could drink her cup of tea!

My lovely husband, daughter and son continue to look after me perfectly, while still keeping their own necessary routines of work and - in the children's cases! - socialising going.

To all of you, my heartfelt thanks. Oh, and I still haven't decided what music to pick for tomorrow - decisions, decisions!