Friday, 29 July 2011

Day 3 begins and first side-effect....

Oh, it's not so bad, really - just yesterday and this morning I have felt quite nauseous for the first couple of hours after getting up. I read the "Idiot's Guide to Radiotherapy" this morning and this is not unusual and hopefully will pass after a few days.

Choosing the music to listen to is not as easy as  you might think! For a start, since I transferred all my music onto my iPod, all the CDs are squirrelled away in the loft or in the basement and I don't know if I can be bothered unsquirrelling them. That leaves me with the choice of recent CDs which haven't yet been uploaded onto iTunes (long story, involving a laptop that died and took my iTunes library with it...) and the ones which are languishing in my car (yes, Amy, it is still my car!!). This could limit my choices somewhat but I am pretty certain I will find something I like each day. Today I was going to go for some thrash guitar a la Green Day or Blink 182 but decided on something more gentle - so Arvo Part it is. It may make me tearful, as it's a terribly moving piece of music, but it feels right.

The sun is shining, I have washing out on the line and another load just about to finish in the washing machine - hanging up washing is good physio for my shoulder, ha ha! To be honest, doing simple things like that, which I used to take for granted and - quite frankly - often used to grumble about, gives me quite a lot of pleasure nowadays, just because they are normal things to do.

Time to go and do some stuff in town before going off to my second home :-)

Wednesday, 27 July 2011

1 down, 29 to go.....

Yes, it's finally started - first session of radiotherapy was today. And you know what? It was fine! I know it will gradually become less fine, as the side effects start to make themselves known (hello, it's burned, red skin here....closely followed by sore throat and mouth ulcers.....and galloping along just behind but catching up fast is loss of taste and appetite......but outrunning them all, and outlasting them too is extreme fatigue.....). No one said radiotherapy would be fun, but it is powerful magic in the armoury of the hospital, so I shall suck it up (pretty much literally!).

Wearing the mask wasn't as  uncomfortable as I feared, even though I had to wear it for about 25 minutes today, as the radiographers had to do a scan to make sure everything was lined up properly and compare it to the scan from 10 days ago. Interestingly, and gratifyingly, they had to adjust the bed I was lying on because my face is less swollen than when they made the mask. Of course, I can't feel the radiation entering my body so it is a case of lying there with a big blue mask moulded to my face and bolted down around my head, neck and shoulders while the x-ray arm moves around, above and underneath me. It really is incredible technology and I feel very lucky to be able to take advantage of it.

Being a good girl, I had obeyed the instructions in the changing room and put my hospital gown on "like a dressing gown", tying the various ties as indicated. Of course, the first thing I have to do on entering the radiation room is take it off and put it on backwards!! They have to lower the gown so that my shoulders are bare and it's easier to do and causes no problems for the mask if I wear it backwards. (Note to self:: remember this for future sessions....).

I was invited to take a CD to listen to during my treatment. My lovely uncle had sent me a Paolo Nutini CD because he thought one song in particular would be an uplifting and positive song to listen to and he was absolutely right - so, Uncle Reggie, you will be pleased to know that all through today's session, I was listening to the singing Scottish-Italian! It was a perfect choice and I shall listen to it again on my last session. In the meantime, I can inflict my eclectic musical collection on the radiographers <rubs hands with glee>. I did ask if they had any requests for the type of music they wanted me to bring but they are leaving it entirely up to me :-D

I said to Neil afterwards that, just as the radiographers left the room to press the buttons and start it all off, I suddenly felt very tearful. I think it's partly because I was so relieved that this stage of treatment is finally starting (it has felt like a very long time coming!) and partly because it makes it all so real again. Surgery made it real but over the last few weeks, as I have recovered and regained energy and got a little bit used to my face, it's felt like it did before surgery - as if it's not really happening to me. Today reminded me that it is happening to me, I do have cancer and I do have a long way to go to get to that magical point where I am officially in remission. Also, being a bit of a wuss, there was some part of me that was crying in weary anticipation of the side effects.....

Still, no side effects today so afterwards I felt fine. I picked up my list of appointments for the next 29 sessions and my free car-parking pass (that will save me a fortune!!) and came home to spend some time in the sun-drenched conservatory, with a visit this afternoon from a friend who came bearing flowers and Hotel Chocolat goodies - mmmmmmm! I was advised this morning to eat lots of calorific foods during treatment....I can't possibly begin to tell you how much of a hardship that will be!!

Another kind friend offered me a Reiki session and I went over to hers yesterday morning to be Reikied (have I just invented a new word? I think I may have!). It was a very relaxing but also interesting experience...without going into too much detail, some of the things I felt/saw during the session were a bit unexpected, at least on my part! And the slightly weird thing was that all during the treatment, Sue's left eye kept watering - which is one of the side effects of my surgery, which I hadn't mentioned to her and which wasn't in evidence during the treatment. As Alice said, curiouser and curiouser...... I think I will book some more sessions, as it definitely made me feel relaxed and calmer.

I seem to be working backwards from today to the weekend, but that's the consequence of not updating on a daily basis! I went to church on Sunday and had put my name down to read. This is something I used to do on a regular basis before my surgery and thought nothing of it, standing behind the lectern and reading for a couple of minutes, making eye contact with the congregation. This time, it was much more demanding...not an ordeal, just hard. I did make eye contact as much as I could. There were a few words in the reading that caused me some difficulty ("people" is particularly hard, with two bilabial plosives, as they say....) but all in all, it was okay. I went to sit down, felt okay and then the woman sitting next to me clasped my hand and said "Well done" - and that was all it took to release the tears. Cue a little bit of genteel and subtle crying during the next hymn. At the end, loads of people came up and said how well I had read and how brave I was to do it and in fact, a couple of them said that they had always been too nervous to get up and read, but if I could do it, they certainly were going to do it now.

 I'm glad if that's the case but, you know, I don't feel brave. I just think this is something I have to do if I want to live as normal a life as I can from now on. Bravery is the young person I saw at hospital this morning, bald from chemo, waiting for radiotherapy so more punishment for their body, being sick into a bowl because of the toxic drugs and apologising for it. That's much braver than anything I am doing. I don't feel I have a choice about things - I owe it to my family to give myself the best possible chance of getting better. I keep saying to them that I have many years of nagging left in me, so I want to be able to indulge myself :-)

I have chosen my CD for tomorrow - Scheherezade by Rimsky-Korsakov: a piece of music I listened to a lot as a youngster but which fell from favour for a long time until a friend suggested it recently during an online discussion about music. Thank you, Frodo! Now to see if the radiographers like it.....

Day 1 done and dusted. Bring on Day 2....

Friday, 22 July 2011

One week on....

...and it feels as if Amy has never been away! Within 24 hours of being back home, she was off clubbing until 4 in the morning with her friends - and quite right too. It's been great to have her friends coming round and squashing up on the sofa, watching Harry Potter films with me as I try to bring myself up to date with what's happened so we can go and see the final film. Trouble is, I have forgotten what went on in the early films, so have had to start from the beginning - that's  a big HP filmfest!!

Adam loves having his big sister home - boy, has he missed being bossed around! He's got a whole year's worth to catch up with now.....

In matters medical, not much to report. I had my scan on Monday, wearing my mask, so that the clever physics people can plan my treatment. The mask wasn't as uncomfortable as I feared it might be, but I was only wearing it for about 7 minutes, so wearing it for 20 minutes every day might be less pleasant. I also got a little tattoo, to help them line up the mask and the radiation. It's a tiny little dot, just at the top of my *ahem* cleavage....Neil has suggested that I could get it made into the dot above the "i" in "Neil" - I think not, somehow! But you never know - if he catches me in a weak moment, or when I'm unconscious, it might happen! I had to go back to the Marsden today to sign consent forms and complete a questionnaire for a clinical trial of radiation treatment for my type of cancer. Sadly, I am in the control group rather than the trial group for the different radiation, but at least I am part of the study and will have regular hearing and balance tests to see whether the trial treatment makes any difference to the effect of radiation on the middle/inner ear. For the first time, we found out that the risk of hearing loss is, in fact, a certainty - at least in the short term. Apparently, because there will be fluid in the ear as a result of the radiotherapy, I will lose some hearing in that ear for at least a while. It will mostly be higher frequency, so some types of music and speech might be lost to me. I so hope it will be a temporary effect, as the thought of not being able to listen to music and enjoy it the way I do now makes me sad. I get such pleasure from music and have been listening to a lot of classical music particularly over the last couple of months. Oh well, just have to wait and see what happens...I might be lucky and not have any long-lasting damage.

Radiotherapy starts on Wednesday of next week and, just in time for my daily journeys to hospital, there are major roadworks starting. Neil worked out a cunning route home which avoids the roadworks and will mean we won't get caught up in the inevitable traffic jams. My challenge is to remember this route so that I can direct the many kind friends who are driving me to and from my appointments.....given my sense of direction, who knows where we might end up ;-/

It was lovely to have a visit from my baby brother and his lovely family on Monday. First time we've seen each other for about 18 months, so we had a lot to catch up with but inevitably much of the conversation revolved around my illness. Hopefully that will change as I come out the other side of the treatment and things start to return to a more normal state.

This afternoon I met a woman who had similar surgery to me just under two years ago and who had roughly the same amount of facial paralysis (although her eye was unaffected so I suspect she had lost less of the facial nerve than I had) but the really encouraging thing was that her face was almost completely back to normal, with no sign of facial palsy and all achieved by nerve regeneration, not through aesthetic surgery. I don't expect to have quite such a remarkable return to my old face, but it was nonetheless good to know that there is at least a chance of my face returning to some normality, even if that chance is perhaps pretty slim.

Oh, and I got my hair done - with a choppy fringe to hide some of my lopsided forehead. I rather like my new haircut but I made the mistake of saying on Facebook that I had had my hair cut and a couple of people asked me to post a photo. I just don't feel confident enough to do that on a public forum where people who don't know what's been going on can see it and wonder what on earth has happened to me. I know people mean well but it did throw me a bit, so I had to make some jokey response when really I just thought how horrible it was not to be able to put a picture of myself up on my profile. Oh well, you live and learn, don't you?

Radiotherapy starts next Wednesday, so I feel as if I am at the beginning of a new stage of this long, difficult and at times painful journey. Onwards and upwards, friends! At least I now have all of my lovely little family around me to support and love me.

Friday, 15 July 2011

And then there were......four!!

Well, where to start???? Today has been an eventful day and - for a change! - pretty much all of it has been good.

Today's the day I was due to find out the definitive medical view of my cancer - what type, if the parotid was the primary cancer or if I have a primary site elsewhere, and what my treatment will be (please note the use of the Oxford comma in this sentence....). So a pretty momentous day for us.

Most of you also know that our lovely daughter, Amy, has been travelling the world since July last year - and when I say "travelling the world", I mean it literally! She started by driving with two (girl) friends in a tiny car to Mongolia, for charity, and then carried on backpacking around South East Asia, followed by Australia, New Zealand, a whole host of South American countries and ending up in New York and Rhode Island before spending a couple of months travelling round America with an old university friend - or so we thought!! Imagine our reaction when our doorbell rang this morning just before we were due to leave for the Marsden and on opening the door - there stands our daughter, all long limbed, blonde haired and grinning from ear to ear. Well, I tell you, it's the best medicine I could have had!! The whole scene was enhanced by her clutching a bottle of pink Moet to hand over to me :-)

It was just so wonderful to see her, as we hadn't been expecting her before mid-September. There were tears and smiles, as you can imagine! We found out that lots of people knew about her planned return, including our son and our hairdresser - yes, Amy being Amy, she had got her priorities right and had arranged to have her hair done at midday today!!

Unfortunately, we had to leave almost straight away to get to hospital for my appointment with the consultant, so after a very brief catch-up, Neil and I left for the Marsden. When we got there, after waiting for about fifteen minutes in the waiting area, there was an announcement that the clinic was running approximately 50 minutes late, so we could have stayed at home a bit longer, had we known. In the end, I was seen about 1 hour and 40 minutes after my appointment time, but we didn't mind - if patients need extra time with the consultant, then there's a reason, whether it's because of some complication or a need for reassurance. One day, I might be the patient needing that extra time with the doctor and I would hate to think that other patients wouldn't recognise and appreciate that.

And the outcome of the consultant meeting? My setback last week was because the information from the hospital where I had my surgery gave two different diagnoses: for the technical-minded, these were adenocarcinoma and squamous carcinoma. The consultant today said that she could give me some answers - yay!! The reason for the ambiguity was because, in fact, I have  both types! I am now officially recognised as having adenosquamous carcinoma (try saying that after a couple of drinks!!). It's pretty unusual, so it would appear I have a rare rare cancer - well, come on now, we didn't expect me to be ordinary, did we? The consultant was also able to confirm that, after the MDT had spent a long time going through all the results and scans (she showed us the analysis sheets to confirm this), they were able to  confirm (or at least are as certain as they can be) that the parotid cancer is the primary site. This is a huge relief, as it means there's nothing nasty lurking elsewhere and I don't need any further tests or - horror of horrors - more surgery. Huge relief, as you can imagine.

After a bit  of lunch at the hospital, I had my mask fitting. That was an interesting experience - blue plastic moulded to my face, with some holes to breathe through, and the whole thing bolted to the table to keep me absolutely still while the radiation beams are working their magic. I have to go back on Monday for a CT scan during which the experts will plan exactly where the radiation beams will hit me and programme it all into the computer so that when radiotherapy starts, on July 27th, everything is set up. We worked out that altogether I will be getting about 10 hours of radiation over the 6 weeks so I shall definitely have that inner glow - what a shame it's not the middle of winter and I could save on the central heating bill :-)

Oh, there's loads more I could write, but I am too tired after such an exciting day. What a refreshing and welcome change to be able to report a day of only good things happening. I know the radiotherapy will be gruelling and that the side effects will be pretty unpleasant, but now I have all my little family around me, I have more people to help me cope.

And.....I have some magnificent, multi-coloured South American knitwear ......including some very funky stripey socks which are gracing my feet as I type :-D

Signing off for the evening now on what has been a happy, happy Friday :-D

Wednesday, 13 July 2011

Ring, ring......ring, ring


"This is your key worker from the Royal Marsden. We've discussed your case at the MDT this morning and you have an appointment with the consultant on Friday at 11 and a mask-making session in the afternoon".

No, this doesn't mean that I am invited to some Occupational Therapy session to unleash my creative instincts but that my radiotherapy mask is going to be made - yay!!! This means that firstly, they have decided to proceed with radiotherapy treatment so presumably they are now confident about which type of cancer I have and that they don't feel the need to do further exploratory work and secondly, that chemo doesn't seem to be on the cards.

Of course, Friday's appointment with the consultant could change all that, but at the moment, this is the best information we have

Watch this space for an update on Friday, when all will (hopefully) be revealed.

Tuesday, 12 July 2011

Veni, vidi, visa.......

In the absence of any certainty or development in the medical part of my life, I turned to the tried and tested solution, guaranteed to make me feel slightly better - shopping!!

Over the past couple of months, I have only ventured to the local shops, which has seriously limited my purchasing potential. We have loads of charity shops (with good quality items - after all, this is Oxted, dahling) and a burgeoning cafe society - we worked out recently that we can have coffee in a different establishment every day of the week - but the opportunities for *proper* shopping are sadly lacking. I have bought a few bits and pieces online, but I miss having the chance to feel things in shops: touching fabrics, seeing colours in daylight, not on a laptop screen and (and I know you may find this just a teeny bit odd....)  smelling things. Yes, I am a bit weird: tactile, visual and olfactory-al (I think I may have just invented a word). I see shopping as a multi-sensory experience :-) The other physical effect is on our bank balance :-D

Today I got a chance to wander round some real shops, at a large shopping centre. Neil was able to pick me up on his way back to the office after his morning appointments and drop me off at Bluewater. Oh, the joy of touching things, holding them up to the light, matching them with other things, sniffing them and then making a decision to buy or not. An ordinary, simple activity but one which I have missed and wanted to experience again. It was tiring, as I expected it to be, but immensely satisfying. Best of all, only one or two people gave me anything more than a cursory glance - I must admit that I was apprehensive beforehand about how I would cope if people stared at me. I think that was because I wasn't talking while I was just looking at stuff (despite what you may think, I am not so barking that I wander around talking to myself...) so my face, in repose, just looks a bit swollen and asymmetrical. When I did engage in conversation with shop assistants, it was all fine and no one reacted to my semi-mobile mouth.

Sum total of shopping trip: a pair of jeans, a shirt, some underwear, a couple of tops, lots of stuff for the house, wine glasses - oh, the list is endless! But the best thing is that I was able to do something normal, that I used to take entirely for granted, and not feel conspicuous.  I even managed to meet up with a friend and her daughter, who ended up coming to the same shopping centre, so I had some company for that very important and necessary late afternoon cup of tea! My lovely chauffeur (Neil!) came to collect me when he finished work and drove me home. He's such a star!!

Tomorrow is the MDT (Multi-Disciplinary Team) meeting, where my case will be discussed and I should hear from them at some point what the outcome of that meeting is. It's a big day for us, as hopefully I should find out what type of cancer I have, whether they need to do any further exploratory work, whether they think I will need chemo in addition to radiotherapy and when things are going to get moving. I am very impatient to start the next stage and Neil is also impatient for this: we both see this as the inevitably gruelling but absolutely essential stage which will get rid of any traces of this evil invader. I am trying not to worry about any little ache and pain  and assume that it means I have cancer somewhere else - that way madness lies!! I do actually feel very well - my scar is less painful by the day, although my shoulder tends to ache when I get tired, I don't have a cough or a sore throat, I don't have any problem with lack of saliva (sorry, is that TMI? Tough! - welcome to my world!!).  This morning, I went to the gym with Neil and did my physio and some time on the exercise bike and treadmill. I tried a little run on the treadmill, but discovered that my cheek really hurts when I do that. It's not got any tone and nothing holding it up, so it is like having a heavy lump swinging with each step. I'm sure someone could come up with some smutty riposte to that, but I am too tired after my shopping trip to think of one myself :-) I do want to try a little run, so I might try taping up my cheek to give it a little bit of support and see if that helps. If I do get a place in next year's London Marathon, I will need to be able to get around 26.2 miles without that swinging lump cramping my style!

I think shopping should be prescribed on the NHS - not for nothing is it called "Psychological Keynesianism" - or, spending your way out of a depression :-)

Signing off, you lovely people. Keep smiling and do an extra half smile for me to make up for the bit that's missing from mine :-)

Thursday, 7 July 2011

Please can I just have a little bit of certainty? Another setback.

My hearing test went fine yesterday and we were on all systems go to start radiotherapy on July 18th, with visits to the Marsden tomorrow and Monday.

Then I get a phone call from the hospital to say there's a discrepancy between what the consultant's referral letter states I have and what the histology shows, so they are doing further reviews and as a result will be putting back the start of my treatment. And they want to make sure there's nothing behind the tongue or in the larynx. And, depending on what they find/decide, there's a possibility I may have to have chemo as well as radiotherapy.

I feel as if I have had a huge setback. I was ready to start the next phase and now I have no idea what that next phase is, or even what it is the next phase is designed to treat. Feeling very fragile and low.

Something nice did happen today, though - some friends visited and presented me with the most beautiful, hand-made quilt (made by an extremely talented friend, Yvonne) and all my Runners World friends had written comments on it to give me encouragement and comfort at this - quite frankly - bloody awful time. Thank you to all of them for caring for me and to Linda for arranging it all. Such a great bunch of friends!

Neil and I need to process this latest setback. It seems as if I am having the most extraordinary run of bad luck all the way through this and I don't feel very strong about it all at the moment. It feels as if I have been knocked over and am struggling to get back up. I know that Neil, the children, my birth family and friends will help and support me through it but I feel terribly fragile right now.

Tuesday, 5 July 2011

Oh, I wish I'd looked after me teeth (copyright Pam Ayres) :-D

First of all, thank you to Celia for pointing out that I had put 18th August as start date for my radiotherapy - wrong!!! It's the 18th of July, so not long now.

Today I had to go to the Royal Marsden in Fulham for a dental check. The radiotherapy carries with it an increased risk of dental caries, so they like to check patients' teeth before the treatment starts, because if I had to have a tooth removed from my lower left jaw following radiotherapy, whether it's six months, six years or sixteen years after treatment, there's a risk of nasty infection which tends to develop in the jaw bone and which would mean taking a piece of bone from the leg to replace the infected jaw bone (this gets better and better, doesn't it?). The dentist today said that because my palsied cheek is resting on my lower left wisdom tooth, it would be difficult to keep it clean and she would be happier removing it. I said I would be happier keeping it and after a bit of discussion, she agreed that if I cleaned my teeth as well as I am doing now and stuck to a rigorous routine of check-ups every six months etc, she was hopeful that I would be okay. I think I can live with that - to be honest, as I explained to her, I have had so much intervention, poking and prodding in recent months and with more treatment ahead that if I could avoid this particular procedure, I would feel very relieved. In any case, I would have to have it removed either tomorrow afternoon or Friday morning, at both of which times I have appointments with other consultants.

She did say that I was keeping my teeth very clean, considering how patients with facial palsy normally present themselves, so that was a point in my favour and possibly a reason why she felt hopeful that I would be okay. If by any chance I do have to have that tooth removed in the future, it would be done under general anaesthetic and would be at the Marsden, so they would look after me - hopefully it won't come to that, though. I have been prescribed fluoride gel (not toothpaste but concentrated gel) which I have to use twice a day before, during and for six weeks after radiotherapy and then once a day for the rest of my life - or, as the instruction sheet puts it, FOR AS LONG AS I HAVE TEETH (yes, it is in block capitals!). I was also given a nice new (small head) toothbrush. I feel very special :-) It really is just as well that I have taken care of my teeth or I could be in a bit of a pickle now!

My appointment was at 10. 30 and I had expected to be done and dusted by 11 o'clock - wrong again! I finally got out of the hospital at 1.30, after going for x-rays, waiting to be seen by the dentist and then waiting for my script. Amazing how tiring it is hanging around hospital for three hours......

I travelled to London on my own, so another first for me - using public transport by myself for the first time. I arrived at our local station, bought my ticket after having a bit of a wry smile at the ticket seller who was getting so frustrated with his ticket machine that he indulged in that well-known remedy of percussive maintenance, and waited on the platform for the (inevitably delayed - this is Southern Rail, after all) train. Who should I see on the platform but our friend Sally and her daughter Emily, en route to London for a posh breakfast at the Wolsey - infinitely preferable to a dental check! I had company all the way to London Victoria but negotiated the underground on my own, which was the more daunting prospect as  it was still very busy, being the tail end of rush hour and the start of tourist hours. I managed it fine, so hopefully that means that tomorrow will also be fine, when I have a more complicated journey to get to Charing Cross Hospital, which is nowhere near Charing Cross, unfortunately!

Our friend Jonathan came round to see us this evening and stayed for dinner. I felt comfortable enough to plug my electrodes in and do my forehead zapping while he was here - not sure he felt comfortable with it, but hey! I am in charge and I can always use the unanswerable line "I'm an ill woman and you have to be nice to me" <evil cackle>.

The kindness of friends continues to support and humble us. Celia called round tonight with more of her gorgeous home cooking for us, Elizabeth brought round some home-made ice cream last night (it will be invaluable when I have the inevitable sore throat during radiotherapy) and our neighbours gave us tickets for a performance at the National Theatre which they are unable to attend. We have quite a few visits scheduled for this week - my minister called round last night and I have visits from three separate groups of friends over the next two days. Between that and the hospital appointments it's a busy old week!! It's good to see people and I am looking forward to seeing my twin-separated-at-birth who is down visiting from the frozen North (aka Aberdeen) as well as Rock Chick. These people do all have real names, but I seem to have got into the habit of referring to them by various nicknames, such as Corinthian, Tickled Pink, Badly Drawn Bloke etc. I blame that Runners World website personally......

It's a busy old week for sure, but I feel positive, if tired. I do feel as if we are now gearing up for the next stage and that everything is falling into place. Bring it on!!

Monday, 4 July 2011

Still trundling on.....

Lots of medical stuff has been happening over the last few days, so it's probably time I wrote an update.

On Friday, we had our first appointment at Royal Marsden in Sutton. Immediately we walked into the hospital, we felt a sense of confidence and calm. Perhaps it's because it's a hospital which specialises in cancer cases and so you know that everyone there is going through a similar kind of experience and the staff won't be surprised or flummoxed by what you look like or what your symptoms are. We met a range of people (we had to write all the names down and get business cards, otherwise we would just forget immediately - it was like being at a party and being introduced to lots of people and knowing you've got no chance of remembering the names!).  We  met the Staff Nurse for the Unit, my key worker, the Registrar, the consultant, a nurse co-ordinating the clinical trial I have asked to be considered for and I think that's it!!

By one of those weird coincidences, a friend I used to work with years ago, but with whom I had lost touch,  had sent me a card earlier in the week (the grapevine had worked and news had reached her that I am poorly) and in it she mentioned that she was having treatment for cancer. I texted her on Friday morning to ask for her email address and she replied, saying she was on her way to the Marsden for her radiotherapy - it felt a bit X Files to text back "Guess who has just pulled into the Marsden car park??"....she had left the hospital before we finished with the consultant, but she called round for lunch later. I opened the door to her, looked at her wonderfully bald head and she looked at my wonky face and magnificent scar ....and we both burst out laughing :-D

So, back to the consultant and all the medics on Friday - basically, they confirmed that I won't be having chemo (for which I am hugely grateful - it would have felt like a treatment too far) and talked about the radiotherapy: starting on 18th July, Monday to Friday for six weeks, with a list of potential side-effects. These include extreme tiredness, mouth ulcers, loss of saliva, red, burned skin, tooth decay, loss of taste, loss of hearing, loss of balance, secondary cancer. Apart from that, it will be a walk in the park.

So far this week, I have the following appointments:

Monday - blood pressure check at GP. Blood pressure is up, surprise surprise;
Tuesday - dental check-up at the Fulham branch of the Marsden;
Wednesday -  hearing and balance assessment at Charing Cross Hospital (which is nowhere near Charing Cross!);
Thursday - blood test at GP;
Friday - consultant meeting at Sutton branch of the Marsden and then having my mask mould made.

This means two days of travelling on public transport, which I am going to do on my own. If I want to return to work in London at some point, I will have to get used to it so I might as well do it this week while I am feeling relatively strong.

There was a bit of a setback this evening, when I got a phone call from the Registrar saying that they want to check whether during the operation in May my surgeon checked that my larynx and surrounding area were clear. It might be obvious from the operation notes, which they have still to review. However, she flagged up with me that they might need to do some procedure to check my larynx and this might involve being knocked out again. Not good news, although I think it will be a camera down the throat job rather than an incision, so it shouldn't prevent my radiotherapy beginning on the planned date. Obviously, I would far rather have more degree of certainty than we have at the moment (although the registrar confirmed that the PET CT scan was clear apart from the area where we know I have cancer), but I do understand why they want to make absolutely sure. It just feels as if, yet again, we are still having to be prepared for finding out that I have cancer somewhere else. I feel okay, apart from being a bit tired and having sore skin around my scar, so I am hoping that the fact I don't have difficulty swallowing and don't have a cough means that the larynx is okay, but it really is a case of who knows?

This notwithstanding, both Neil and I feel in such safe hands with the Marsden. They are doing their best to co-ordinate everything so that I have as few journeys to various hospitals as possible and have been excellent at keeping in touch with me to let me know what is going on and when my appointments are.

In other news, Neil and I went to our local Carnival and saw lots of friends, which was a good, sociable way to spend a few hours. On Sunday we went to church (Neil came with me to support me in case I found it too overwhelming) - I especially wanted to go along because my good friend Sally's mum was tranferring her membership to our church from her former church, as she has recently moved to our town and I wanted to support her. After I had my diagnosis but before my surgery, when I went to church I found it terribly difficult - the music seemed to bring my emotions to the surface and I had to leave the service several times in tears. However, yesterday was fine, even when my name was mentioned in intercessionary prayers, so I hope this means that I will be okay from now on. It was lovely to talk to people afterwards as well - everyone was so pleased to see us and to know that I am getting back into circulation.

We had lunch at Sally's home, with her mum there too, and watched the tennis. I was sad to see Rafa lose but Djokovic was a worthy winner - he outplayed Nadal quite convincingly. Then, after a short rest, over to other friends for Pimms and nibbles in their garden in the evening. Once more, we are so blessed with the kindness we receive from our friends both near and far.

Now,  Little Ninja (otherwise known as "N") asked a question on my previous blog post about what you could do to make me feel okay about things. The answer is - exactly what you are doing! I know that dealing with disfigurement is something that has to come from me and no one else. The best thing you can do is just treat me as normal when you see me. Neil tells me I look lovely and reassures me all the time and I know from what others have said that after about five minutes, people do just get used to what I look like. I know that I am the one who needs to get used to it!! What I really need from my friends and people who read my blog is honesty, a kick up the backside when I need it, a (virtual) hug and a tissue when things are getting to me and plenty of nonsensical, jokey, fun comments. If you can do all that - you get the gig!! Form an orderly queue for auditions, please.

Till the next time, I leave you with a joke which I shared with Celia and David last night....why are pirates called pirates?

Because they arrrrrrrrrrrrrrre (with thanks to Rosanne "Rock Chick" Fleming for that one!)