...it would make it so much easier to know if we're handling it the right way - if indeed there is a "right" way. But there's no handbook, so we just have to plough on, hoping we're doing it properly. I suppose that, since we are all individuals and will react to things differently, a handbook wouldn't be too much use in any case. I just wish that there was some way we could know whether what we're doing is sensible and will help us get through this nightmare.
I do try and put a positive spin on things - joking about getting a facelift on the NHS, thinking how lucky I am to be enjoying the sunshine in the garden when everyone else is at work, having the time to do things I've never got around to doing - but some of the time, it's just masking how I really feel. Behind this cheerful facade, I am sometimes screaming inside.
Every time I leave the house, I have to steel myself to face people. It's worse when I am on my own, because there's no one to make me feel less exposed, or to reassure me that no one is really looking at me. I am ridiculously happy if the sun is shining, because it's a reason for me to wear my sunglasses, which at least hides my hideous piggy little eye. Then all that people will see will be my swollen, lopsided cheek and jaw. For someone who has always had a good level of self-confidence, this fear of going out in public and the need to brace myself and gather up my courage is a scary and unknown feeling. I used to think nothing of just wandering into our town and going into shops, browsing, buying, chatting to shop workers and other customers. Now I see it as an ordeal, necessary as a way to try and make my life as normal as possible, but draining me of both energy and confidence. I can't see it getting any better in the short-term either. My face isn't going to change any time soon. As the summer changes into autumn I won't even have my sunglasses to hide behind.
I don't want to become a recluse. I want to go out and try to live a normal life. But it's just so very hard sometimes to pretend that all is well and that I can deal with it. Much of the time I can deal with it, but underneath there's a very scared person, struggling to cope, masquerading as a confident, cheerful person. That scared person has to make an appearance sometimes, for my own sanity if nothing else. It's tiring to keep that person hidden. Well, she's certainly making an appearance today!!
I sometimes think that if I were only dealing with one thing, I could cope so much better. If I only had cancer to deal with, that would be difficult enough. Dealing with cancer and a very obvious disfigurement sometimes feels like too much for one person. There's so much to manage - medical treatment and the physical effects of that (and emotional effects too) and the psychological and emotional impact of the facial palsy. I have handed over all responsibility for my medical care to the experts, but I am the only person who can manage my response to the facial disfigurement.
I know I am not on my own. I couldn't cope as well as I do most of the time if I were on my own. I don't say it often enough, but Neil has been, continues to be, and will be, a complete rock to me. He listens to my grumbles, he looks after me physically and emotionally and he shows me in so many ways how much he loves me. I know I am still beautiful to him and that to him, I am the person I have always been. We're fighting this together, a strong team, but it's hard for both of us. Still, they do say that what doesn't kill you makes you stronger, so we should be pretty invincible by the end of this long journey.
Thursday, 30 June 2011
Tuesday, 28 June 2011
From Wimbledon to Queen Victoria Hospital, via Bruges!
Well, hello everyone!
Busy weekend and beyond - hence lack of posting till today! We were lucky enough to be given two tickets to Wimbledon on Saturday, so off we toddled on the train and tram to SW19. Our tickets admitted us to number 1 court, where we saw Nadal play Muller: they had played one set the previous day, which went to tie-break and the same thing happened with the second set. We both thought that Nadal wasn't playing like a championn and in fact, Muller was holding his own service game to love and getting points from Nadal during Nadal's service game. However, once Nadal won the second tie-break, it was as if he moved up a gear and Muller lost a lot of his fight. Nadal was playing at a different level and it all got very exciting to watch. Next up was Serena Williams, playing Maria Kerilenko ( I think!) - both of them grunting fit to burst. What is it with tennis players nowadays, that they have to make really loud grunty noises?? After that, we saw a bit of the Soderling-Tomic match but by half five I was feeling quite weary, so we set off back home. Oh, forgot to say, we had strawberries and cream - but not the hugely expensive Wimbledon ones, oh no! We took our own and had them with clotted cream (Waitrose's finest!).
Up very early on Sunday to go to Bruges - since we can't really plan to have a proper summer holiday this year, we thought we would at least get a couple of days away before the next phase of treatment starts. My lovely husband sorted it all out and we caught an early tunnel crossing, which meant that we were eating breakfast in a very pretty Belgian town by 9 in the morning (8 a.m UK time!). Why is it that croissants and pains au chocolat taste so much nicer over there, even though they're made exactly the same way as the ones we have in the UK??
We arrived in Bruges then took ages to find our way around the evil one way system to get to our hotel, which is slap bang in the middle of Bruges. Finally managed to find it and were very lucky because they gave us the only garaged space they have, rather than taking our car and parking it for us at the car park they use for most guests. We couldn't get into our room, so we went for a wander around Bruges, armed with a map and cameras. What a beautiful city!! Wonderful architecture, a real sense of history and tradition, shops overflowing with the most intricate lace, chocolate by the bucket-load and more beer than you could sample in a month of Sundays! We had planned to sample the traditional Belgian delicacy of moules-frites, so found a place with a lovely seating area outside and ordered moules-frites for two - big mistake!! They brought us the most enormous domed casserole, stuffed to the gunnels with delicious mussels in a cream and garlic sauce, with celery, onions, carrots and some unidentified green stuff. And a massive bowl of fries as well, those lovely crisp, skinny chips that you only get on the continent. Despite our best efforts, we couldn't finish it all but we gave it a damned good try!! We didn't need to eat for the rest of the day, put it that way.....after a slow walk back to our hotel, we were able to go to our room and I slept for about two hours (well, we had got up at quarter to five, so I was entitled to be a wee bit weary!).
Our room was absolutely fabulous - you get great bargains when you go last-minute and don't stay on a Saturday night! We had a tiny balcony, with views of the bell tower and the church spires. For the first time in my life, I slept in a four-poster bed -oh, I felt like a princess (but not in a spoilt, pink, sparkly kind of way!). Then a nice long soak in the bath before we got changed to go out - we were originally planning to go out for dinner, but we were both still stuffed from our mammoth lunch! We stopped at a cafe right on the canal-side and had a drink in the evening sunshine - it was really warm and so nice just to watch the horse-drawn carriages go by and listen to people talking in Flemish (sounded to me like a cross between Dutch and German and certainly I could recognise some of the written words because they reminded me of German). Neil was enjoying one of the many Belgian beers available. One of the nice things is that, in common with other European countries, in Belgium you get the glass which matches your beer and they all have slightly different shapes or embellishments. I was, of course, drinking fizzy :-D We wandered around a bit more, enjoying the evening as it gradually cooled down and then stopped in a pretty little square for another drink - this time I tried a fruit beer (raspberry) and actually rather liked it. It was a bit like Pimms, though - tasted innocuous and just like a fruit cordial so you have to remember that it's actually alcohol! Back to our hotel for a cup of tea before bed - served in the "library" - and then off to bed, where our bed had been turned down and a chocolate placed on each of our pillows. That reminds me, we haven't eaten them yet!!
Breakfast the next morning (after another soak in the jacuzzi bath and my physio, because you all know I am a diligent girl....) was amazing. The usual fruit juice, tea, coffee etc, but also a glass of champagne (the real stuff, not ersatz) and an array of pastries, meat, cheese, fresh figs....needless to say, we couldn't face any lunch later in the day as we were still too full from breakfast! We waddled into town and did a boat tour around the canal, learning something about the history and architecture of the city. It was a lovely way to get to know Bruges. To work off some of our indulgent breakfast, we climbed the 366 steps to the top of the belfry and got great views of the rooftops. More wandering around, back to the hotel for a final cup of tea and then we set off for home, with a sneaky visit to a supermarket once we got to Calais. Unfortunately, due to a train having stopped in the Tunnel, all the departures to Dover were severely delayed and we ended up leaving two hours later than planned, which meant we didn't get home till nearly midnight, both of us tired but having had a truly lovely break. Highly recommend Bruges as a short city break.
Hospital this morning to see my consultant and ask him a few questions; will my shoulder always be this stiff and sore (no, but it will be for a few months yet); why does my left nostril keep getting blocked up (long medical explanation followed but it boils down to loss of facial nerve) and why is my eyesight in my left eye not as clear as it used to be (something to do with tears (rhyming with "years" not rhyming with "pears"!!). While we were there, my lovely MacMillan nurse chased up the Royal Marsden, as we hadn't yet heard anything about my referral, and she was able to tell us that they have all my documents and scans etc there and will probably want to see me this Friday (if not, then very soon thereafter) - that was good news and hopefully it means the next stage of my treatment can get started within the next few weeks.
I did have a small moment of smugness when the consultant said I was a "treat" for a doctor, as I am fit and otherwise very healthy <buffs nails modestly>. It's thanks to the intensive bootcamp and other exercise I did earlier this year, and to which I hope to return at some point in the future.
Neil and I were talking (we do that sometimes, you know) on the way to Bruges and were thinking about a top ten list of famous film quotes. We couldn't come up with a list of ten! What we did come up with was:
ET, phone home
Rosebud
Nobody puts Baby in a corner
Play it, Sam
Gerry, we have the stars - don't let's ask for the moon
Oh Captain, my Captain
Frankly, my dear, I don't give a damn.
You've been a long way away from me. Thank you for coming back to me.
What would be in your top 10? Answers on a postcard, please - or, alternatively, write it in a comment :-D
Busy weekend and beyond - hence lack of posting till today! We were lucky enough to be given two tickets to Wimbledon on Saturday, so off we toddled on the train and tram to SW19. Our tickets admitted us to number 1 court, where we saw Nadal play Muller: they had played one set the previous day, which went to tie-break and the same thing happened with the second set. We both thought that Nadal wasn't playing like a championn and in fact, Muller was holding his own service game to love and getting points from Nadal during Nadal's service game. However, once Nadal won the second tie-break, it was as if he moved up a gear and Muller lost a lot of his fight. Nadal was playing at a different level and it all got very exciting to watch. Next up was Serena Williams, playing Maria Kerilenko ( I think!) - both of them grunting fit to burst. What is it with tennis players nowadays, that they have to make really loud grunty noises?? After that, we saw a bit of the Soderling-Tomic match but by half five I was feeling quite weary, so we set off back home. Oh, forgot to say, we had strawberries and cream - but not the hugely expensive Wimbledon ones, oh no! We took our own and had them with clotted cream (Waitrose's finest!).
Up very early on Sunday to go to Bruges - since we can't really plan to have a proper summer holiday this year, we thought we would at least get a couple of days away before the next phase of treatment starts. My lovely husband sorted it all out and we caught an early tunnel crossing, which meant that we were eating breakfast in a very pretty Belgian town by 9 in the morning (8 a.m UK time!). Why is it that croissants and pains au chocolat taste so much nicer over there, even though they're made exactly the same way as the ones we have in the UK??
We arrived in Bruges then took ages to find our way around the evil one way system to get to our hotel, which is slap bang in the middle of Bruges. Finally managed to find it and were very lucky because they gave us the only garaged space they have, rather than taking our car and parking it for us at the car park they use for most guests. We couldn't get into our room, so we went for a wander around Bruges, armed with a map and cameras. What a beautiful city!! Wonderful architecture, a real sense of history and tradition, shops overflowing with the most intricate lace, chocolate by the bucket-load and more beer than you could sample in a month of Sundays! We had planned to sample the traditional Belgian delicacy of moules-frites, so found a place with a lovely seating area outside and ordered moules-frites for two - big mistake!! They brought us the most enormous domed casserole, stuffed to the gunnels with delicious mussels in a cream and garlic sauce, with celery, onions, carrots and some unidentified green stuff. And a massive bowl of fries as well, those lovely crisp, skinny chips that you only get on the continent. Despite our best efforts, we couldn't finish it all but we gave it a damned good try!! We didn't need to eat for the rest of the day, put it that way.....after a slow walk back to our hotel, we were able to go to our room and I slept for about two hours (well, we had got up at quarter to five, so I was entitled to be a wee bit weary!).
Our room was absolutely fabulous - you get great bargains when you go last-minute and don't stay on a Saturday night! We had a tiny balcony, with views of the bell tower and the church spires. For the first time in my life, I slept in a four-poster bed -oh, I felt like a princess (but not in a spoilt, pink, sparkly kind of way!). Then a nice long soak in the bath before we got changed to go out - we were originally planning to go out for dinner, but we were both still stuffed from our mammoth lunch! We stopped at a cafe right on the canal-side and had a drink in the evening sunshine - it was really warm and so nice just to watch the horse-drawn carriages go by and listen to people talking in Flemish (sounded to me like a cross between Dutch and German and certainly I could recognise some of the written words because they reminded me of German). Neil was enjoying one of the many Belgian beers available. One of the nice things is that, in common with other European countries, in Belgium you get the glass which matches your beer and they all have slightly different shapes or embellishments. I was, of course, drinking fizzy :-D We wandered around a bit more, enjoying the evening as it gradually cooled down and then stopped in a pretty little square for another drink - this time I tried a fruit beer (raspberry) and actually rather liked it. It was a bit like Pimms, though - tasted innocuous and just like a fruit cordial so you have to remember that it's actually alcohol! Back to our hotel for a cup of tea before bed - served in the "library" - and then off to bed, where our bed had been turned down and a chocolate placed on each of our pillows. That reminds me, we haven't eaten them yet!!
Breakfast the next morning (after another soak in the jacuzzi bath and my physio, because you all know I am a diligent girl....) was amazing. The usual fruit juice, tea, coffee etc, but also a glass of champagne (the real stuff, not ersatz) and an array of pastries, meat, cheese, fresh figs....needless to say, we couldn't face any lunch later in the day as we were still too full from breakfast! We waddled into town and did a boat tour around the canal, learning something about the history and architecture of the city. It was a lovely way to get to know Bruges. To work off some of our indulgent breakfast, we climbed the 366 steps to the top of the belfry and got great views of the rooftops. More wandering around, back to the hotel for a final cup of tea and then we set off for home, with a sneaky visit to a supermarket once we got to Calais. Unfortunately, due to a train having stopped in the Tunnel, all the departures to Dover were severely delayed and we ended up leaving two hours later than planned, which meant we didn't get home till nearly midnight, both of us tired but having had a truly lovely break. Highly recommend Bruges as a short city break.
Hospital this morning to see my consultant and ask him a few questions; will my shoulder always be this stiff and sore (no, but it will be for a few months yet); why does my left nostril keep getting blocked up (long medical explanation followed but it boils down to loss of facial nerve) and why is my eyesight in my left eye not as clear as it used to be (something to do with tears (rhyming with "years" not rhyming with "pears"!!). While we were there, my lovely MacMillan nurse chased up the Royal Marsden, as we hadn't yet heard anything about my referral, and she was able to tell us that they have all my documents and scans etc there and will probably want to see me this Friday (if not, then very soon thereafter) - that was good news and hopefully it means the next stage of my treatment can get started within the next few weeks.
I did have a small moment of smugness when the consultant said I was a "treat" for a doctor, as I am fit and otherwise very healthy <buffs nails modestly>. It's thanks to the intensive bootcamp and other exercise I did earlier this year, and to which I hope to return at some point in the future.
Neil and I were talking (we do that sometimes, you know) on the way to Bruges and were thinking about a top ten list of famous film quotes. We couldn't come up with a list of ten! What we did come up with was:
ET, phone home
Rosebud
Nobody puts Baby in a corner
Play it, Sam
Gerry, we have the stars - don't let's ask for the moon
Oh Captain, my Captain
Frankly, my dear, I don't give a damn.
You've been a long way away from me. Thank you for coming back to me.
What would be in your top 10? Answers on a postcard, please - or, alternatively, write it in a comment :-D
Friday, 24 June 2011
A life in the day of ST (a feature for the Sunday Times magazine)
Wake up.
Yawn. Maybe a light nose-blowing
Facial exercises
1st round of shoulder physio (hurty ouch factor 4)
Shower, dry, dress
Breakfast
Catch up on emails
Read/write blog
Possibly put some washing on
Possibly hang some washing out
Maybe an attempt at painting. I like to think of it as "experimental water-colour".
Read a book
Get frustrated at laptop and Kindle as my techno-incompetence surfaces
A little light housework
A little light lunch
2nd lot of shoulder physio (hurty ouch factor 6)
Read a book
Take washing in due to rain
Toddle to local shop for milk or other necessity
Meet friend for tea/coffee
Purchase non-essential, guilty secret, item of foodstuff
Return home
Hang washing out again
Bring washing in
Admire experimental water-colour
Prepare dinner
Lay table
Insist on Mr ST and AS admiring my experimental water-colour
Cook dinner/supervise cooking of dinner
Eat dinner
Wipe remains of dinner from around uncooperative mouth
Sit down and watch some housewife tv while Mr ST and Adorable Son clear away, tidy kitchen and make cup of tea
Plug in electrodes and zap forehead for an hour
2nd lot of facial massage
3rd lot of shoulder physio (hurty ouch factor 8)
Get ready for bed
Clean teeth
Take painkiller if needed
Zap nostrils with easy-breathing spray to prevent waking up with stuffed nose
Read
Sleep
Try to remain asleep till morning
Repeat
Repeat
Repeat
On some days, I have the added excitement of fitting in some/all of the following:
Consultant appointment
Physio appointment
Speech therapy appointment
On a really good day, I get to go to a wine bar or pub for a glass of wine :-)
How am I ever going to fit in work???? I think my days are fully occupied as they are :-D
Yawn. Maybe a light nose-blowing
Facial exercises
1st round of shoulder physio (hurty ouch factor 4)
Shower, dry, dress
Breakfast
Catch up on emails
Read/write blog
Possibly put some washing on
Possibly hang some washing out
Maybe an attempt at painting. I like to think of it as "experimental water-colour".
Read a book
Get frustrated at laptop and Kindle as my techno-incompetence surfaces
A little light housework
A little light lunch
2nd lot of shoulder physio (hurty ouch factor 6)
Read a book
Take washing in due to rain
Toddle to local shop for milk or other necessity
Meet friend for tea/coffee
Purchase non-essential, guilty secret, item of foodstuff
Return home
Hang washing out again
Bring washing in
Admire experimental water-colour
Prepare dinner
Lay table
Insist on Mr ST and AS admiring my experimental water-colour
Cook dinner/supervise cooking of dinner
Eat dinner
Wipe remains of dinner from around uncooperative mouth
Sit down and watch some housewife tv while Mr ST and Adorable Son clear away, tidy kitchen and make cup of tea
Plug in electrodes and zap forehead for an hour
2nd lot of facial massage
3rd lot of shoulder physio (hurty ouch factor 8)
Get ready for bed
Clean teeth
Take painkiller if needed
Zap nostrils with easy-breathing spray to prevent waking up with stuffed nose
Read
Sleep
Try to remain asleep till morning
Repeat
Repeat
Repeat
On some days, I have the added excitement of fitting in some/all of the following:
Consultant appointment
Physio appointment
Speech therapy appointment
On a really good day, I get to go to a wine bar or pub for a glass of wine :-)
How am I ever going to fit in work???? I think my days are fully occupied as they are :-D
Thursday, 23 June 2011
Mrs Bounce-backability is making a reappearance
Good morning and thank you for all the lovely messages left on the blog and the texts and emails following yesterday's very cathartic outpouring! The sun is shining this morning and I have been to the gym to do my physio and a wee bit of exercise so already the day is an improvement on yesterday.
I know it's to be expected that I will have bad days. I think I need to remember to give myself permission to feel sad or angry when I have those days. I think I just have a fear that I will use what's happening to me as an excuse to justify "bad" behaviour: mood swings, impatience, snapping at people. I don't want to become some temperamental prima donna who thinks everything should revolve around her (well, obviously I have always thought that should be the way the world works but I have to pretend to have some humility, don't I? :-)).
So, today has started well and I expect it to continue. Meeting a doctor friend for coffee this afternoon (coincidentally, she's the one who referred me to the consultant initially) and then another friend for a glass of wine this evening. And I need to contact a couple of people who were on the receiving end of my tears yesterday and apologise for being a right old misery-chops!!
Onwards and upwards, my friends. And thank you once again for your fantastic support. x
I know it's to be expected that I will have bad days. I think I need to remember to give myself permission to feel sad or angry when I have those days. I think I just have a fear that I will use what's happening to me as an excuse to justify "bad" behaviour: mood swings, impatience, snapping at people. I don't want to become some temperamental prima donna who thinks everything should revolve around her (well, obviously I have always thought that should be the way the world works but I have to pretend to have some humility, don't I? :-)).
So, today has started well and I expect it to continue. Meeting a doctor friend for coffee this afternoon (coincidentally, she's the one who referred me to the consultant initially) and then another friend for a glass of wine this evening. And I need to contact a couple of people who were on the receiving end of my tears yesterday and apologise for being a right old misery-chops!!
Onwards and upwards, my friends. And thank you once again for your fantastic support. x
Wednesday, 22 June 2011
Rollercoaster down in the dip.....should give this post a health warning, maybe?
I always knew that there would be down days as well as up days - well, today is one of the down days. To be honest, yesterday afternoon was a bit of a dip as well, but I thought I had recovered and certainly the day started off okay. Woke up with a slight headache, but that's fine. Did my first lot of physio and facial exercises and then went over for breakfast with Father John, the local RC priest. He used to live opposite us and has now moved to round the corner. I hadn't seen him since my operation so we were due a catch-up. Over toast and honey and a pot of good Northern tea, we had a good old chat, so all seemed to be going well.
Came home, Neil was still here and we were talking about trying to arrange a couple of days away somewhere a bit warmer and sunnier than the UK when all of a sudden, I found myself in tears. Poor Neil's shirt front was somewhat damp in a very short time! I feel that the positive attitude I usually have is in danger of becoming a facade - it feels that I am fighting two battles at the moment: one with the cancer and one with the facial disfigurement. Both of them are big battles, not just little skirmishes. Waiting to start the next stage of treatment brings with it uncertainty and worry, although I genuinely trust the NHS to do right by me. In a way, that's the easier battle, because the decisions about what to do, and the execution of treatment, is in the hands of the professionals. All I have to do is turn up for treatment and keep myself in the best of health otherwise to give the treatment the best chance of success. But the rest of it, the facial disfigurement? That's up to me. I have to take my face out in public. I have to deal with any stares or comments. I have to choose not to hide away but to try to lead as normal a life as possible. And I am finding it terribly hard today.
I know the people who love me and who care about me don't care what I look like. But I do. I don't like looking in the mirror and seeing a lopsided face. I don't like not being able to smile. I don't like having an eye that is so different from the other.
I don't like being so shallow that these things matter. All that really matters is being alive and what I look like shouldn't be such a big issue. Well, today it is. And I don't mean that I don't appreciate all the wonderful treatment I have had, because I do. I also know that without the disfigurement, I would in all probability be in a far worse state of health. I understand all that and can rationalise it. Just today, I can't rationalise for my emotions.
So, there you have it - down in the dip and wanting to get back onto a more positive track (if that is not mixing my metaphors).
There is lots to be grateful for, though - a lovely chat with my baby brother on the phone and a visit from him and his gorgeous family next month as they are en route to Gatwick airport; continued love and support from the people who matter and, above all, being alive. When I look at the alternative - well, it's not really an alternative, is it?
As always, I am so thankful for my lovely family and amazing friends. Thank you all and I hope to resume normal, cheerful service soon.
Came home, Neil was still here and we were talking about trying to arrange a couple of days away somewhere a bit warmer and sunnier than the UK when all of a sudden, I found myself in tears. Poor Neil's shirt front was somewhat damp in a very short time! I feel that the positive attitude I usually have is in danger of becoming a facade - it feels that I am fighting two battles at the moment: one with the cancer and one with the facial disfigurement. Both of them are big battles, not just little skirmishes. Waiting to start the next stage of treatment brings with it uncertainty and worry, although I genuinely trust the NHS to do right by me. In a way, that's the easier battle, because the decisions about what to do, and the execution of treatment, is in the hands of the professionals. All I have to do is turn up for treatment and keep myself in the best of health otherwise to give the treatment the best chance of success. But the rest of it, the facial disfigurement? That's up to me. I have to take my face out in public. I have to deal with any stares or comments. I have to choose not to hide away but to try to lead as normal a life as possible. And I am finding it terribly hard today.
I know the people who love me and who care about me don't care what I look like. But I do. I don't like looking in the mirror and seeing a lopsided face. I don't like not being able to smile. I don't like having an eye that is so different from the other.
I don't like being so shallow that these things matter. All that really matters is being alive and what I look like shouldn't be such a big issue. Well, today it is. And I don't mean that I don't appreciate all the wonderful treatment I have had, because I do. I also know that without the disfigurement, I would in all probability be in a far worse state of health. I understand all that and can rationalise it. Just today, I can't rationalise for my emotions.
So, there you have it - down in the dip and wanting to get back onto a more positive track (if that is not mixing my metaphors).
There is lots to be grateful for, though - a lovely chat with my baby brother on the phone and a visit from him and his gorgeous family next month as they are en route to Gatwick airport; continued love and support from the people who matter and, above all, being alive. When I look at the alternative - well, it's not really an alternative, is it?
As always, I am so thankful for my lovely family and amazing friends. Thank you all and I hope to resume normal, cheerful service soon.
Monday, 20 June 2011
..and still the rain falls from the sky
Now, if there were ever going to be an upside about what is happening to me, I thought it would be that I would be at home all over the summer and therefore able to enjoy the glorious summer weather, watch uninterrupted play at Wimbledon, potter about in the garden and generally live in Smugsville compared to the working population. Instead, I am sitting in our conservatory listening to the rain hammering down on the roof and seeing a completely white sky.....and if one more person says "Oh, the gardens need it", I will lamp them one (with my good arm).
I do find that the weather really affects my mood. If the sun shines, I am generally upbeat and happy. But if it's dull, overcast, damp or rainy, I am much more sombre and my spirits tend to plummet, especially if the weather is supposed to be doing something different. I really don't need anything to lower my mood at the moment, so the thought of enduring more of this weather is not filling me with optimism for the next week or so. However, I can't control the weather and nor can anyone else, so I shall just have to "man up".
So, what did we get up to over the weekend? I ended up having a busy Friday and Saturday, seeing lots of people both at home and in town. I am getting more relaxed - or at least less tense - about going out in public and have been out today on my own around the shops in town and once again, the only people who stared were older people. What is it that makes them think they can stare so obviously at someone? It's almost as if they think that, due to their age, they can behave in any way they like and no one will say anything to them because they're old - well, they may just find that there's at least one person who will say something! I can't believe they don't realise that it's difficult enough for someone like me to walk out in public and try to have ordinary social interactions while being aware that I look so different from the norm without being so obviously stared at. So all you staring old people out there - watch out, as you may be challenged....
Neil and I went for a walk yesterday morning as, for a change, it was a lovely sunny Sunday. We were out for about two hours, which was the longest exercise I have done since coming home from hospital and although we took it fairly slowly, it was still pretty tiring. I did some of my physio on a lovely woodland path, which made a pleasant change. Home and straight to bed for a rest and then a quiet and relaxing day, pottering around in the garden (two more patio pots done) and supervising/helping our son as he made a Father's Day dinner.
We are waiting to hear from Royal Marsden with dates for me to go and meet their MDT to discuss treatment and then several other appointments before radiotherapy actually starts. I want to be as fit as possible before starting the treatment, so tomorrow I hope to get back to the gym in the morning, where at least I can do my physio, get on the treadmill (still only a walk at this stage, rather than a run) and do some time on the exercise bike as long as I am careful with my shoulder. It will be good to do something which I used to do before all this happened and it means that Neil can get back to exercise too. We both miss it.
Apologies if this is a less than scintillating post - this dreadful weather is to blame for the lack of humour today. Hopefully normal service will be resumed soon :-)
I do find that the weather really affects my mood. If the sun shines, I am generally upbeat and happy. But if it's dull, overcast, damp or rainy, I am much more sombre and my spirits tend to plummet, especially if the weather is supposed to be doing something different. I really don't need anything to lower my mood at the moment, so the thought of enduring more of this weather is not filling me with optimism for the next week or so. However, I can't control the weather and nor can anyone else, so I shall just have to "man up".
So, what did we get up to over the weekend? I ended up having a busy Friday and Saturday, seeing lots of people both at home and in town. I am getting more relaxed - or at least less tense - about going out in public and have been out today on my own around the shops in town and once again, the only people who stared were older people. What is it that makes them think they can stare so obviously at someone? It's almost as if they think that, due to their age, they can behave in any way they like and no one will say anything to them because they're old - well, they may just find that there's at least one person who will say something! I can't believe they don't realise that it's difficult enough for someone like me to walk out in public and try to have ordinary social interactions while being aware that I look so different from the norm without being so obviously stared at. So all you staring old people out there - watch out, as you may be challenged....
Neil and I went for a walk yesterday morning as, for a change, it was a lovely sunny Sunday. We were out for about two hours, which was the longest exercise I have done since coming home from hospital and although we took it fairly slowly, it was still pretty tiring. I did some of my physio on a lovely woodland path, which made a pleasant change. Home and straight to bed for a rest and then a quiet and relaxing day, pottering around in the garden (two more patio pots done) and supervising/helping our son as he made a Father's Day dinner.
We are waiting to hear from Royal Marsden with dates for me to go and meet their MDT to discuss treatment and then several other appointments before radiotherapy actually starts. I want to be as fit as possible before starting the treatment, so tomorrow I hope to get back to the gym in the morning, where at least I can do my physio, get on the treadmill (still only a walk at this stage, rather than a run) and do some time on the exercise bike as long as I am careful with my shoulder. It will be good to do something which I used to do before all this happened and it means that Neil can get back to exercise too. We both miss it.
Apologies if this is a less than scintillating post - this dreadful weather is to blame for the lack of humour today. Hopefully normal service will be resumed soon :-)
Thursday, 16 June 2011
Did your mother breastfeed you?
Actually, I wasn't asked that question at my psychological assessment, so perhaps my psychologist was not of the Freudian persuasion :-) I was asked about my early childhood, what I remembered before starting school, what my schooldays were like etc. And of course, lots about how I felt about being told I have cancer, the very short timescales involved, the invasive treatment, the facial palsy and my future treatments. There were tears but there was laughter too. The outcome is that I have been offered an initial 6 sessions of what is called "Disease Process" counselling (shocker of a name, isn't it?) and I can choose when to have them and keep them fairly ad hoc, resources permitting. I am pleased I have been offered this, as it's the chance for me to sound off, shout, cry, be angry, pensive, whatever, with someone who is an objective professional. I am also pleased that it is up to me when I have these sessions, as one of my big problems has been that I feel I have virtually no control over my life at the moment, so anything that puts control and decision-making firmly in my hands is very welcome.
The psychologist said that I had a very rational approach to my illness and its effects and that I had identified some good coping strategies for things such as when people stare at me. She also said that I obviously have a very good, caring network of family and friends around me - that's all of you, that is! Not having to worry about how to get to my radiotherapy appointments because so many of you are volunteering to take me is a huge relief to me and to Neil, as it takes a big burden off him.
Sue drove me to hospital and we had lunch on the way in a very nice restaurant by a lake. Again, doing something normal is good for my recovery. We both chose chicken with a wild mushroom, banana and shallot jus (!) - unusual and very tasty.
Plans for today - meeting my minister (who is also a friend) in one of our local cafes later this morning and having a visit from a friend later this afternoon. In between times, physio, resting and listening to music or the radio. My life is certainly not as action-packed with activity as it was!! However, I am almost ready to go swimming, as backstroke will really help my shoulder and, although I am not fond of swimming (can't help but find it immensely boring!) , it will at least mean that I am doing some exercise. I thought I might also be able to use the exercise bike and do some squats and gentle lunges, so perhaps next week I might start going to the gym again. I have a membership and I am not afraid to use it!!
The psychologist said that I had a very rational approach to my illness and its effects and that I had identified some good coping strategies for things such as when people stare at me. She also said that I obviously have a very good, caring network of family and friends around me - that's all of you, that is! Not having to worry about how to get to my radiotherapy appointments because so many of you are volunteering to take me is a huge relief to me and to Neil, as it takes a big burden off him.
Sue drove me to hospital and we had lunch on the way in a very nice restaurant by a lake. Again, doing something normal is good for my recovery. We both chose chicken with a wild mushroom, banana and shallot jus (!) - unusual and very tasty.
Plans for today - meeting my minister (who is also a friend) in one of our local cafes later this morning and having a visit from a friend later this afternoon. In between times, physio, resting and listening to music or the radio. My life is certainly not as action-packed with activity as it was!! However, I am almost ready to go swimming, as backstroke will really help my shoulder and, although I am not fond of swimming (can't help but find it immensely boring!) , it will at least mean that I am doing some exercise. I thought I might also be able to use the exercise bike and do some squats and gentle lunges, so perhaps next week I might start going to the gym again. I have a membership and I am not afraid to use it!!
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