Thursday, 30 June 2011

If only there were a handbook about how to deal with all this.... 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.

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
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


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



Try to remain asleep till morning




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

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.

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 :-)

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!!

Wednesday, 15 June 2011

So, what happens next?

Hospital visit yesterday. First up was the physio, who was pleased with my progress and thinks that there may be a tiny bit of the trapezium (?) which is still working despite the surgery. She doesn't need to see me for another three or four weeks, so that was quite encouraging.

Then the consultant. He showed my a photo of what he removed (those of a squeamish disposition may wish to skip the next couple of sentences!!). It was hideous - although, to be fair and as he pointed out, it had been pickled in a jar for a couple of weeks. Imagine a pork chop left for far too long on the barbeque and you will get a good idea of what it was like. Rather worryingly, the pathology showed that 11 of the lymph nodes removed were infected so it is/was obviously a very aggressive and fast-moving cancer, which is something I just have to accept and also trust that the experts will do their best to make sure that my subsequent treatment does its utmost to eradicate any remaining nastiness. I asked to be referred to the Royal Marsden, gave my reasons and of course, under Patient Choice, I can ask to be treated wherever I want. I didn't even have to utter the magic words "Patient Choice", as my consultant said them, so that was good. He said that changing hospitals might lead to a small delay in starting treatment but that it wasn't harmful to have that delay and was going to dictate my referral letter after leaving us. I think he was quite impressed (in a non-committal, specialist kind of way) that we knew the names of the two top people in head and neck cancer at the Marsden, so it was obvious we had done our research (thank you, Caroline, for all the information you pulled out for us!).

Overall, the day was a bit like the curate's egg - seeing how nasty my cancer is was quite sobering and has certainly given me something more to discuss at my psychological assessment this afternoon. I still remain resolutely positive that the medics will do their utmost to help me through this and give me the best chance of survival. I know also that my attitude will make a big difference, so although I descend into the dark places at times - and I think that actually, it is healthy to do that - I genuinely remain optimistic and upbeat.

The good bits of the curate's egg were - physio making a difference, my embryonic water-colour painting is progressing well (at least it is obvious what I am painting!), a meal and a glass of wine with Neil, Adam and our friend Jonathan at one of the nice pubs in Old Oxted and the continuing love and support of many.

Further update tomorrow once I have processed whatever happens at this afternoon's psychological assessment.

Monday, 13 June 2011

..and there was a cast of thousands......

Well, morning, everyone - notice the absence of "Good": call me picky, but I expect the middle of June to bring sunny, warm weather, not this damp, rainy, overcast autumnal weather we are having.

The good news, however, is that my infection seems to have cleared up. Hopefully this means that when we see my consultant tomorrow, we can look at setting a date for my radiotherapy. We will also be getting the pathology results from my operation - it will be good to have some certainty about what exactly I have/had and what the next stage is. I got some really helpful information from our son's friend's mum about radiotherapy for my particular kind of cancer - she is a radiographer and has also had cancer herself, so it was very good to talk to her and get her insight, both as a fellow cancer patient and as a health care professional. We now have some good information to discuss with my consultant tomorrow, about my radiotherapy. Before we see him, however, I have my weekly appointment with pain - otherwise known as the physiotherapist! She is lovely, actually, but she makes me do things that hurt - I know why, and I know it has to be done, but I am beginning to realise why some people refer to them as "physioterrorists" :-)

What have I been doing over the past few days? Well, on Friday I had a visit from two friends - although they are from different parts of my life (one I know from running and one is a work colleague) they actually know each other from having been part of the same quiz team for one of our daughter's fund-raising events last year, so they co-ordinated their visits and arrived at the same time - less exhausting for me! It was good to see them and have a bit of a gossip and catch-up, although I have to say I am a bit disappointed in the amount and quality of gossip, boys!! Please try harder next time.....

I wanted to start to share my new face with friends, so after a fairly quiet day on Saturday, yesterday was the day for meeting up with lots of people, starting with Neil's mountain-biking chums. After their weekly Sunday morning mudfest, they go for coffee in one of the many cafes we have in town. Neil and I went down to meet them, which meant I saw about 20 people in one "hit". Such a nice bunch and it felt good to do something pretty normal, just having a cup of coffee (well, strictly speaking I had a skinny chai latte with extra cinnamon, but it just takes so long to type....oh, hang on.....). Immediately after that, we went straight to my church - not to the service (the music always brings my emotions to the surface so I am not yet ready to sit through a service) but to the social event afterwards. One of our members is moving house so this was her last service as a resident of our town and she had baked a huge cake and brought along some fizzy to mark the occasion. She particularly wanted us to come along if we could so we slipped in just as the speeches were about to start. It was a great way to reintroduce myself to everyone, as it was a social event and the focus was on someone else, not me - although lots of people came to talk to me. I felt better for having done it - and it was nice to have a small glass of fizzy (luckily I had finished my anti-biotics, eh?). Just doing "normal" things helps me feel I am on the road to recovery.

So tired afterwards, though - the sheer physicality of talking tires me out so much. I think my mouth is having to work much harder to make sure I form my words correctly, because half of my mouth doesn't move - it's the weirdest thing, because my brain is telling my mouth to do what it's always done, and it feels as if my mouth is moving as normal but when I see myself (usually when we're talking on Skype to our daughter) I realise that my mouth isn't moving as normal. Anyway, I had a rest afterwards and am taking it easy today.

Early morning walk with another friend from church, who was walking her dog in the fields opposite our house. It's good to get out and do some exercise - my physio concentrates on my shoulder and face, so getting out for a walk is important to get my legs moving and, as I get stronger, I can step up the pace and get some cv benefits. I think I was over-optimistic thinking I might be back to gentle plodding already. The thought of any movement that will jar my neck and shoulder is a bit overwhelming, so I fear it may be many months before I return to plodding and then I will be like a complete beginner. But that's fine.

What does the rest of the day hold? A lot of relaxing and resting!! I might try to do some watercolour painting - Neil brought down my paint set and pad and it is waiting for me in the conservatory. I have some talking books which Sue brought round at the weekend and I might pop one of them on and just stretch out on the sofa for a couple of hours.

I'm checking out broadband, tv and phone deals - anyone want to make any recommendations? We are with Virgin Media at the moment and I think we can get a better deal elsewhere, but it's not only price but reliability and quality so I'd be interested in what other people have. From a purely aesthetic point of view, I am drawn to BT because their home hub looks so cute :-)

Thank you for reading, thank you for commenting, thank you for all your support and positive thoughts. They help.


Thursday, 9 June 2011

I spit on you, infection!

..actually, I can't reach it because it demands a certain amount of contortion which I can't do and in any case, I can't purse my lips to spit! But you get the gist of it - the infection is on its way out, yippee!!! I now have some delightful photos on my phone where the doctor wanted to keep a record of how it was over the past few days so we could monitor progress. I don't think I will be posting them on Facebook, let's put it that way! Perhaps there is a fetish group somewhere which would pay me for them???

Nice to have some good news early in the day - in fact, just nice to have some good news!

My trip to the health centre meant another walk into town and back on my own. Not so many stares this time (I know I am very self-conscious at the moment but it still feels very new to me) but interestingly I seem to get more looks from older people than young ones - I kind of expected the opposite somehow. When I got into the doctor's surgery, I sat next to an old-ish man in the waiting room and he made no secret of the fact that he was staring at me, even to the extent of turning around and continuing to look at me after I sat down a few seats away from him. I didn't feel that it was appropriate to ask him if he wanted to know what had happened to me since he was clearly interested, but it was a bit unsettling. At the moment, I feel "safe" in my own  home and in the hospital or health centre, partly because in the the latter two places, the health care professionals just treat me as an ordinary person. And at home, my family just accept me as I am. It's harder when I go into public places like the small supermarket, which I had to do on my way home from the health centre. However, the checkout assistant didn't pause in his conversation with his colleague, so that passed off okay :-). I know it's human nature to look at someone who falls outside the "normal" range, but it can be hard to be on the receiving end of these looks. I know, I know, I have to get used to it but it's a big challenge for me at the moment. I was quite sad yesterday because I miss my old face. It served me well for 52 years and I always felt my smile was one of my best features and now I don't even have that any more. There will be a certain amount of grieving for what I had.

I bumped into my lovely hairdresser when I was handing in yet another prescription to Boots (for antibiotic eye ointment this time, as I had run out!) so that's another person who knows me who has seen my new look. We had a nice chat about new hairstyles and when she returns from her holiday in early July, I will book her to come and transform me - look out, world!!

I ordered some CDs from Amazon yesterday - despite loving my iPod, I do like the actual feel of a CD so prefer to import from a CD rather than download. I must be middle-aged, I think, as one of my CDs is the Definitive Guide to British Birdsong, so I can start to recognise some of the birds I hear in the garden every morning and evening!! The other is by Arvo Part  - modern classical, very soothing and utterly beautiful. I heard it in our neighbours' house on Saturday and absolutely loved it. Arvo Part - Spiegel im Spiegel if you want to listen to it.

This afternoon's plan - physio, a rest, a visit from two friends (one bearing lasagne for this evening's dinner, yum) and then more physio. Hopefully a walk later on when Neil gets home from work and if the rain which seems to be threatening to fall holds off....I am casting anxious looks at the washing on the line, because dashing out and bringing it in will just not be possible for me!

More tomorrow. Thank you for comments and Kindle advice :-)

Wednesday, 8 June 2011

Tape, electrodes, gel.......sounds interesting??

...and today's outing was back to the Queen Victoria Hospital in East Grinstead, for physio and speech therapy. I know my way around quite well now and in fact, got stopped and asked for directions by someone in the hospital today - maybe they saw that I was wearing Crocs and thought I was theatre staff!

Physio was fine - I have more exercises for my shoulder to stretch the muscles a bit more and found out that all the work I did at bootcamp had built up my pectoral muscles so much that my shoulder blade was being over-ridden, so there are some exercises I now have to do to redress the balance! I had anticipated that the physio might be a bit painful but  in fact it was fine - another appointment next week to monitor progress.

On to speech therapy and, like last week, the focus is on achieving symmetry and trying to stimulate messages to the brain so it remembers I used to have facial nerve activity on the left-hand side of my face! Good news on the eye closure - not only is my left eye closing more than it did last week, but it's also closing quite briskly, which is a good sign. Again, I know this doesn't mean that it's going to return to what it was, but it is encouraging that it closes well and it means I don't have to tape it at night or - worst case - have another operation to sew weights to it to help it close. We spent some time experimenting with taping up my cheek and eyebrow to give my face some support and help prevent muscle droop, which is a real possibility as the swelling and bruising gradually disappear. That was quite fun, like having a diy face-lift! The gel and electrodes came into their own because I am now the proud "owner" of an electrical stimulus machine - ooh err, missus! I have to put gel on two little electrodes, position them on my forehead and then I get zapped with an electrical pulse. 10 minutes today, 20 tomorrow, then 10 extra each day till I get to one hour and then stay at one hour for the next several months. In a few weeks' time, I might attach extra electrodes to my cheeks to see if it stimulates some recovery. My lovely speech therapist, who specialises in facial palsy cases, also discussed hairstyles with me and responses to make to people who wonder what has happened to make my face like this. She is a real gem and makes me feel so much better about how I look because she can see the improvements since last week. One thing she did say was that nerve recovery is notoriously slow and that they need to see how much spontaneous recovery there is before they do any surgery to try to improve how I look, or to introduce some animation to the left of my face - so it may not be for two years, which feels like a long time to have such a different face. I still find it odd that, when I talk, only one half of my mouth moves, because I feel as if I am moving both sides of it. I need to just accept that this new face is my normal now.

It's amazing how tiring all this is - I came home and felt that all I wanted to do was lie down and sleep, so I can't see me returning to normal party animal behaviour for quite some time yet! Resting is good, though, as it helps my body recover and helps me get ready for the next stage of oncology, my radiotherapy. On the plus side, the radiotherapy will make my (admittedly fairly impressive) scar fade :-D

I hope you are all impressed that, despite low energy levels and being at home all day, I have not succumbed to the dubious delights of Jeremy Kyle (aka Jeremy Vile)......bad teeth and bad tattoos seem to be the order of the day for those who appear on there, as far as I can tell!! Being at home is a good excuse for listening to music, Radio 4, reading and - latest project - working out how to download free books to our new Kindle. Anyone able to help???

As always, my life is made more comfortable and happy by the constant support of my lovely family and friends, who make me feel cared for and (in the case of my husband and children) beautiful (I keep telling them they need eye tests!). It does help, so much, to have support and positive thoughts and prayers so please carry on doing what you are all doing so wonderfully well!

Ali x

Tuesday, 7 June 2011

Infection, schminfection....

So, trip to the doctor yesterday afternoon where he confirmed that the treatment given by my personal physician (thank you, Abby!) was perfect and gave me a script for more painkillers and then got the nurse to clean and dress the wound. Back today for a swab to be taken and to get the once-over from the doctor and another dressing put on. I do wish things would just go easily for once - this whole process seems to have been dogged by bad luck, starting from being in the 10% of people for whom lumps in the salivary gland turn out to be malignant and being well outside the normal demographic for people who would get this form of cancer anyway! Still, instead of saying "Why me?" I could just as easily say "Why not me?".

Appointment came through this morning for my assessment for psychological counselling. I assume that they will decide after the assessment whether I need a series of appointments or whether I have sufficient coping mechanisms to deal with it all. I vacillate between thinking yes, I'm fine to no, I need heeeeelp! I am not someone who thinks that you should just "pull yourself together" - the brain is another part of your body and if your leg is broken, you get it fixed so if my mind needs a bit of help to adjust to everything that's happened over the last couple of months, then that help shall be given.

Yesterday's and today's challenges have been the same - walking through town to the Health Centre on my own. And yes, some people did stare at me (sodding great dressing on my neck for a start!) but as I refuse to become a hermit and stay indoors all the time, I am just going to brazen it out. If anyone wants to know what happened to me, I will tell them, but for the moment I think it's a case of getting used to people giving me some curious looks. Maybe I should start cultivating a little wiggle so that when they look back once I have gone past them, they can see my gorgeous arse......what do you think? Although given my recent lack of exercise, it's more of a wobble than a wiggle!

Monday, 6 June 2011


Got to do a bit of a catch-up today, having not updated since Friday.

Friday was a quiet day, which I needed after doing so much on Thursday. Seems weird to think that I get tired out talking for a little while when it's not so long ago that I was doing bootcamp, gym,  zumba, running, going to work and running a home, but it's a case of early days and baby steps. I had a walk around the field opposite our house on Friday evening with Neil, which constituted the sum total of my exercise for the day.

Saturday, a friend came round to visit in the morning and then another friend and her daughter popped in. None of them stayed for very long, only half an hour or so, but I had to have a wee rest afterwards. Then Neil and I walked into Oxted to take my library books back - I thought it would be a good challenge to walk into town and back when it's at its busiest and normally we bump into lots of friends, so that would have been a good way to get people used to my new look. However, unusually, we didn't see a single person we knew until we sat down outside the coffee shop and even then it was someone who had already visited - although he did have his son-in-law with him, who hadn't seen me for about a year. We were invited into our neighbour's house on Saturday evening (the one whose daughter I'd visited on Thursday) for drinks and that turned into dinner, by the end of which I was practically falling asleep into my plate! So much for the former party animal, eh? Our neighbour's daughter had a look at my wound and confirmed what we thought, that it was infected, so yesterday she wrote me a private prescription for anti-biotics and came to the pharmacist with me to get it filled and then cleaned my wound and dressed  it. I felt very special, having my own personal physician :-)

Sunday was another quiet day, although still managed to have two lots of visitors in addition to my own private medic :-) Neil could tell I was tired last night, as my left eye starts to droop when I'm weary. I paint such an attractive picture, don't I? We had a disturbed night last night as one of the cats decided to release a mouse on the landing and it ran into our bedroom and is lurking somewhere....I'm doing nothing, as I reckon that with three cats in the house, really they should be dealing with this matter!

And so to Monday, today. My first day on my own, as both Neil and Adam are back at work. I stayed in bed a bit longer as I was very tired, but am up, showered, dressed, breakfasted and have done one lot of shoulder physio and facial massage. I have to pop next door to have my wound checked to see if the anti-biotics are kicking in but apart from that, I am going to veg out.

Physio is quite tiring and sore too, but has to be done. I am getting more confident about things like drying my hair with a hairdryer, even though my face, neck and ear are very swollen and bruised still. I even used hair straighteners the other day, which was an exercise in delicate manoeuvring! Every day I try to do a bit more of the things that make me feel I am returning to some kind of normality. Today's normality includes watching old episodes of The Vicar of Dibley - guaranteed to raise a smile!

Thank you for comments posted and for following or just reading my ramblings. It's good for me to write things down, the highs, the lows, the successes and the failures.

Friday, 3 June 2011

Sharing is a good thing!

Since I have got home from hospital, one of the things I have found most tiring and difficult has been talking to people and seeing them face-to-(wonky) face. Yesterday I had a wee bit of a breakthrough in that I asked if I could visit a friend who had kindly made some soup for us and, instead of her coming round and leaving it on the doorstep and not seeing us, I phoned her (another good thing, as it means I feel I will be understood) and we arranged to call in after Neil and I had gone for a walk on the Chart.

I was a bit apprehensive, to be honest, as every time someone sees my face for the first time I worry that they will recoil or feel embarrassed about it. That hasn't happened yet, which is testament to my wonderful family and friends! But going into someone's home, rather than them coming to mine, felt a bit more daring, if that's the right word...however, from the moment we walked into our friend's house and saw her and her husband, and the family friend over visiting from Canada, I felt so comfortable that I almost forgot about my face. The fact that the family friend was originally from Glasgow (common bond!) and was very relaxed and chatty also helped and it did Neil and me a lot of good to sit down, chat, have a glass of wine (vital part of recuperation, I feel) and just relax for a while. I also, during the afternoon, had called in on my neighbours as their daughter (a good friend of ours) is visiting and she's an anaesthetist who understands the operation I have had and its after-effects and also has a good friend who had exactly the same diagnosis and treatment several years ago. It helped to talk to someone "safe", who had professional knowledge but also a personal relationship with me.

So, in summary, a tiring day but I felt I had pushed my boundaries a bit more. Today will be a quiet day, relaxing in the garden or conservatory, enjoying the sunshine and birdsong and with the likelihood of a walk on the Chart with Neil later on to get a bit of exercise. I've just listened to an article on Woman's Hour about ultra-running and it has confirmed that those distances are not for me!!

Much love, Ali x

Second update post-op!

Good morning from the back garden of Sweeting Towers, where I am ensconced on the swing seat with my laptop, phone and a cup of tea, under the tender care of our son - Neil has gone back to work today for the first time since I came out of hospital last Thursday but I am not yet able to be left on my own for any length of time, as I can't lift anything etc, so I have to have a babysitter :-) Still, the weather is glorious and there are worse places to be than a sunny garden in early June, with glorious birdsong and the scent of early roses.

This is the latest update on my journey along the Cancer Highway - edited highlights!!

I got my sutures out yesterday, which was a little bit ouchy but a relief to have them out and be able to start to wash my neck properly! The scar is about nine inches long, starting in front of my upper ear and then going behind the ear, across the back of my neck and then about halfway round the front. My consultant had a long chat with us and didn't really tell us anything new, other than that, as the swelling has gone down on my left eye, it's not closing quite so well, which isn't particularly good news but it is early days. He said I can return to exercise in a few days and try for a run end of next week- he's a runner himself and he knows how much being able to exercise will help my recovery. We have to see him in a fortnight to review the pathology results from the operation and he has confirmed that I will be having heavy radiotherapy as the tumour didn't have a big margin around it when he removed it so they need to zap me!

Next, on to physio - I have lost the accessory nerve in my left shoulder as part of the collateral damage from my operation. It's the one that lets you move your arm out from the side of your body and then raise it, I can move my arm out but only raise it to just below my shoulder and the other muscles are starting to stiffen, so I have a set of exercises to do three times a day and a return visit to the physio! Then on to the speech therapist. She didn't give me exercises for my speech, although I think she will later, but she has given me facial massage exercises to stimulate messages to my brain from the left side of my face, so the brain remembers I had  a nerve there,  She attached electrodes to my face and asked me to do various things, like raising my eyebrows, counting, smiling etc and measured the activity across both sides of my face. Somewhat surprisingly, given my consultant has removed the facial nerve, there was considerable activity on the left side for some of the exercises. The speech therapist was surprised at this and said she would let the consultant know. I am not naive enough to think this means I have a facial nerve there, but it might make future surgery more of an attractive option. Any aesthetic work won't take place till well into next year, though.Yes, I could well be having a facelift on the NHS!!  I've also asked for a referral to psychological services, as I realise I need to process a lot of difficult stuff, all of which has happened very quickly, and that there's a lot of anger, sadness and grief I need to talk through.

I am realising what a long, slow road I will have back to normality - or, more accurately, to my new "normal". I can't speak highly enough of the NHS, which is caring, compassionate, joined-up and treating me as a person, not just a patient. I do feel in very safe hands and that will be vital over the next difficult few months, when I will be feeling weak and despondent as the radiotherapy takes effect. The people who have seen me so far have all said that I look much better than they expected and that I sound almost normal ( I think a few of them were expecting I might have lost my Scottish accent, but they've been reading the wrong newspapers, I think!) so that's comforting to know that I might not frighten young children and horses when I present my face to the outside world. I am keeping notes of how I feel each day - not a journal as such, but something I can look back on and see what progress I have made - and that is helping me articulate some of my thoughts. 

Finally (phew! you say :-)) thank you for your support, your prayers, your positive thoughts, your cards, gifts, everything that you have done to show me that you are holding me, and my family, in the light. It truly makes an immense difference to have such a fabulous support network.

First update post-op - apologies to those who have already read it!

I am delighted to say that I am back home and no longer in hospital. I begged the consultant to let me come home yesterday and he agreed that my second drain could come out and as long as I rested for three hours afterwards and my neck didn't swell up, then I could come home. I was overjoyed, but then we ran into problems trying to take the drain out! After three nurses and a doctor had had a go, they had to give me liquid morphine before I would let them near me. Still no joy and it was excruciatingly painful but when they said that they might have to hold me down and let the doctor just tug at it, I burst into tears and asked them just to knock me out and take it out in theatre - this little outburst coincided with the psychotherapist turning up to see if I needed some psychological support (think she got her answer pretty quickly there!). Anyway, she told me I had control over my pain and if I wanted them to stop, I could just tell them to. Another doctor came along and while my favourite nurse let me squeeze her hand really tightly, he managed to twist the drain and pull it out, to the accompaniment of much "ouching" from me and some considerable messy collateral damage! Anyway, after a bit of a weep, I managed to get myself discharged four hours later and was so relieved to be back home.

Neil helped me bath and wash my hair this morning, which felt wonderful after four days of only being able to wash at a basin with no plug! I am discovering all the ways in which my life is changing - I can't spit, so cleaning  my teeth is tricky and I have to use a child's toothbrush until my facial swelling goes down as I can't open my mouth very wide. Feeding myself is challenging, as I eat left-handed but the left hand side of my mouth lacks some control. I have to use a straw to drink most of the time but I am getting better at sipping without spilling too much, so that's just a bit of practice needed there. I can't kiss properly either :-( 

Still, I have to see the speech therapist on Tuesday and she will give me lots of help, I know. I am still in the oncology stage so once my radiotherapy is complete, then we can look at the aesthetic aspects, with further operations to my face to help reduce the droopiness. My surgeon and his team are delighted with the fact that I can close my left eye (the one they have stitched to make it smaller) because otherwise I might have needed weights sewn to it to help me close it. However,I can blink and that could mean that in the future (and I think we're talking about a year or so from now) they might re-open the eye to normal size. It's terribly early days and I am still very sore and prone to weepiness but it's all perfectly normal. My speech is much better than either Neil or I thought it would be but I have trouble with letters like b, p and v. 

It could all have been much worse. That being said, it is a bloody tough time for us all. I managed to speak to Amy yesterday on the phone so she could hear my voice and realise that I sound pretty much like Mum always did. Adam has been great and keeps telling me I look good, bless him.

I couldn't have got this far or have kept this positive without the support of my lovely husband, daughter and son and, of course, all my wonderful friends. Thank you so, so much for all you've done this far and please stay with me on this journey, which is going to last for an awful long time yet. Please feel free to share this with others who you think would be interested - I am too tired to put more contacts into the address line!!

Thursday, 2 June 2011

The story so far....

I noticed a couple of lumps in my neck, just below and in  front of my left ear, in March. Made an appointment with the GP, who felt the lumps, asked some questions, felt my scalp etc and then said he was pretty certain they were innocent but to return in a fortnight although if I became worried, or the lumps grew, to come back earlier. Over the next week, the lumps started increasing in size so I got an appointment the following week and saw another GP, who did more feeling of the lumps and scalp, examined my throat and ears and then said she was pretty certain they were innocent but to be on the safe side, she would refer me to a specialist and said not to worry because she had to refer me as a potential head and neck cancer but she didn't think that's what I had.

Three days later, I saw the specialist who carried out more examinations, asked more questions and said he was 90% certain these were benign, although I fell well outside the normal demographic for (benign) tumours like this. He arranged an appointment for me for four weeks later but said that if the lumps disappeared, then no need for any action and that I would only be asked to go back earlier if they found anything nasty. Core biopsy the next day then I got called back 10 days early, which is when the warning bells started ringing. And when we saw the consultant again, they started clanging loudly as he confirmed that, contrary to all medical expectations and demography, I did indeed have cancer in my neck.

Cue lots of questions, a nasal probe being snaked down my nostril and throat, MRI scan, CT scan, PET CT scan and another biopsy until my diagnosis is confirmed and treatment agreed by the Multi-Disciplinary Team at Guildford Hospital. First line of treatment - surgery to remove the tumours. More about the operation later - thought this was enough for now!

First ever blog.....

Rather than keep emailing updates to people about how I am dealing with my recent diagnosis and treatment, I thought I could try this blogging malarkey and see how it goes. This is just a test post, I guess, to see  if it works!