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

9 comments:

  1. Wish I'd been there to see your face when you opened the door to that visitor. 'Tis truly the best medicine anyone could order.

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  2. What a great day for you - but please tell me she didn't bring back any Peruvian pan pipes as well as the strip socks ;-)

    Denise

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  3. Another who would have loved to see your face on opening that door

    Well done Amy on such a great tonic for Mum
    Madge

    xx

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  4. What a lovely suprise. Amy knows how to make an entrance just like her mum.
    I can not begin to know how you are feeling with all the news you have had to digest and the uncertainty but one thing that keeps coming through is your strong will, faith and yes your sense of humour. Keep rocking girl.
    PS next time you want a shopping fix let me know always glad to support a shopaholic for the day.

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  5. im so glad you have answers. mask is very tight but just think of nice things while radio is going on. i had 16 min sessions and lay there thinking of my loved ones and how i would fight this. i know your strong i sense from your blog and i know Amy having a nice hair do will help hahaha. so glad shes there for support. my family have seen me through my stages, lean on them,laugh with them, you will beat this hunni. i have last chemo on thursday its been a long 6 months but ive had all this time with family and friends god bless. and like you Alison im strong and positive. we are fighters hun, keep this up, all my love hugs kisses, Davy xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

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  6. Hi Ali
    Well I have laughed and cried my way through your whole blog having read it from start to finish for the 1st time. Ali - you know me I love to communicate with friends and family, keep up with what is going on etc but having just moved house 4 weeks ago that has proved extremely difficult!!!!! BUT I will moan no more about Virgin, BT, BSkyB, lawnmower repair companies etc because I am so humbled and have such respect for your courage, humour and honesty that you are sharing with us through this process. (well maybe just a wee bit about Virgin - did I tell you they downgraded our service the WEEK before we moved so no internet - they don't tell you that. SO we have had no internet for about 4 weeks. Moving to the "country" has many advantages but a downside for me is that my mobile doesn't work 98% of the time at the house - no signal most of the time and 1 bar occasionally and of course a contract to try and talk my way out of with O2 and as you know I do like to text!!!!!!!! Alison it must have just been SO fabulous to see Amy on your doorstep with pink champagne and a big smile and a hug for her Mum. What an emotional homecoming - it would have been anyway as she has been on such an amazing adventure but added to what has been going on in your life it would be even more emotional. Amy will have so much to share with you all. And the socks sound just perfect....! Good job they did not have any of those when you were flexing Neil's card in Bluewater last week (or was it yours this time?!!!)

    I phoned a friend (Agnes) for an update last Friday evening to see how you were getting on and an update as I was so out of the loop and then planned to call you. When I heard Amy was home I did not call you as it would be your 1st night at home the 4 of you. Then I could not get to my PC most of the weekend for various reasons and have now found your blog link and been able to read 1st hand what has been happening.

    Alison - this is the 1st time I have ever posted on a blog and have exceeded the word limit - there's a surprise so I have cut and pasted the rest of my message into an email to send to you!

    LOL Jane <>< x

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  7. fantastic news Ali :) that is brilliant and yes, only you could get the super rare version :)

    really chuffed to million bits for you about Amy

    Loonicles
    xxxxxxxxx

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  8. Reading Eagle20 July 2011 19:39

    Hi Alison, so pleased to read the news in your update. You special person you!

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