Neurology results

Some 7 months after my first neurology appointment, I’m back at the hospital to meet with my neurology consultant.  I’ve received a letter in the interim advising that the MRI was clear – a huge relief that there’s no phyllodes loitering in my brain!  But that didn’t explain why I was still having headaches – although less frequently.

My consultant was very chuffed that he’d also been able to pull my notes from the neurology department of a different hospital that I’d attended in 1991 with headaches and visual disturbances!  I have to say that I’d not been hopeful that they’d even still exist however he said that this had been a huge help to see a pattern over 20 years!  Well done consultant for finding them.

He confirmed that the MRI hadn’t shown anything untoward and the blood tests hadn’t shown anything awry either.

I told him that I have been following his advice of dissolving a dispersible aspirin under my tongue when I get a headache or visual disturbance.  It does work however I was concerned that at times I needed to take these regularly.

His conclusion was that I was someone susceptible to migranes but whom didn’t have particular triggers.

His advice was to continue to take the odd aspirin when needed.  However with a caveat; should the headaches get worse then I should return to him when he would probably be prescribed daily migrane medication.  It was suggested that this ‘prescription’ should be taken with Dom Perignon – hehe he obviously knows my penchant for bubbles!

My niece is competing

Today was a terrifically proud moment for this Auntie.  My niece, Tori, was competing in the Riding for the Disabled Association’s National Championships.  An early start for us all (I stayed over) as we had to leave home by 6.30am to get the pony (King) into the trailer and to Hartpury in good time for Tori’s first competition entry at 9am. Tori’s cousin, Danielle, had kindly offered to help with the final preparations and also to ‘warm up King’ with a little riding before Tori took the reigns (literally!).

It was wonderful to see Tori competing at this level and not only taking part but doing really well.  She’s been told so many times in her life of the things she ‘can’t’ do, it’s wonderful to see something that not only can she do but she can excel at.

During the Olympics Tori, my brother and I went along to the equestrian element of the Modern Pentathlon which Tori loved watching… so much so I spent hours on the internet securing tickets for Tori and her Mum to go to the Paralympics Dressage a few weeks later.  I met up with Tori afterward who was so excited about what she had seen.  Enthused that people with “problems and disabilities” could be so brilliant.  She said surely if they can do it, then so can I.  And so she can!

Here’s a few photos of the day (click on thumbnails to enlarge):

RDA Tori - July 2013IMG_3852Doesn’t she look magnificent?

4th place in her class for Best Turned Out Pony & Rider and 6th place in her class for dressage.  What a superstar!

I put a little video together for Tori of video and still pictures of the day.. if you’re interested…

I am so very proud of Tori and her ability to control a horse, to remember the course and just simply to be so utterly fabulous.

Sarcoma Consultation

This afternoon I met, as planned, with my sarcoma team for the results of my six monthly checks from the perspective of phyllodes sarcoma.  They will, of course, be involved in reviewing the results of the biopsy however were keen to let me know what they know, so far.  Good news, there was NED (No Evidence of Disease) in my lungs from the chest x-ray and no evidence of any sarcoma growth visible from the ultrasound and mammogram.

I’ll best get on with healing from the biopsy which now the anaesthetic is wearing off is mightily ouchy! Thank heavens for paracetamol.

Next appointment 22nd July.

Biopsies done… next?

I’m not sure that I slept for more than 60 minutes in a row last night and was utterly exhausted when my alarm eventually went off.  To be fair I was also being kept awake by my friendly fox, AKA Foxy, who regularly visits my garden and was clearly seeking attention.  I think he’s cross with me because I threw away his favourite toy on Monday (an old Croc shoe)… It was totally tatty and in bits due to his favourite game when he picks it up in his mouth and flicks it over his head only then to retrieve it and do it all again!   Last night he brought me an old tennis ball and then spent quite a while throwing it at the wall just below my window!

Anyway I digress.  I arrived on time for my appointment this morning and was expecting a mammogram with a vacuum assisted biopsy being taken whilst my boob is clamped in the machine.  However I was told that I would be having another ultrasound, further mammogram pictures and then the ‘clamping’.   Wow what a long procedure this was to be.

As before the ultrasound didn’t show up any ‘dots’.  Next off to the ‘boob squishing’ where the dots were clearly visible.  Next they lay out a bed beside the machine where I would lie on my side whilst my boob is clamped tightly in place and pictures taken.  The pictures, fortunately, were clear and I was in the right position for the next part… the biopsies to be taken.  The Dr injected anaesthetic into a number of places and whilst it took effect he lined up the biopsy syringe and switched on the ‘vacuum’ so I knew what noise to expect.

Despite all the anaesthetic and the very clear explanation of what would happen, I wasn’t ready for the reality!  Blinking bananas that was truly painful.  Essentially a larger core of tissue is drilled out and then suctioned up.  They took a few of these and next had to check they had some of the ‘dots’ in the samples taken.  If not, we’d be doing it all again!  Next they insert a small piece of titanium as a marker to show exactly where the biopsy tissue has been removed from and so that future scans show this easily.  Hmmm I would have thought I’d have had platinum and the anaesthetic should have been champagne but I guess they’re cutting back on the NHS.

Fortunately they got enough and the ‘needle/straw’ was removed and I was released from the mammogram clamp.  Only 15 minutes in the clamp.  I then saw the hole that was left… I guess I’ll have a marker of my own to look at every day now!

The tissue will be reviewed by the pathology team to see if there’s anything untoward in it.  It could just be ‘chalk AKA calcifications’ but I won’t know until it’s been under the microscope.

Crazily I thought that I’d be getting the results when I meet with my sarcoma consultant this afternoon but apparently not.  They’ll be giving me the results from a sarcoma/phyllodes perspective ie chest x-ray, ultrasound and mammogram results but NOT the pathology results from this morning’s biopsies.  I’ve been given another appointment for those results on the 22nd July.

I guess there’ll be a few more sleepless nights!  Hello Foxy, fancy a game of catch?

I’ll know soon what the ‘dots’ are…

OK so they promised to call this afternoon.  Why is it that ‘this afternoon’ is more than just a specific time?  I’ve been on eggshells all day however have put it to good use – 3 lots of washing (done and dry), walk in the park, grocery shopping, front garden weeded, yukka trees pruned and hedges tidied up, lawns mown, jasmine tied back, back garden weeded and cleared out, patio hosed down, pathways swept and tidied, roses deadheaded… etc!  Amazing how much you can achieve when you’re trying not to realise the time is passing and the phone isn’t ringing.

The phone eventually rang at 4.30pm and the lady from the Marsden introduced herself.  It was clear that she wasn’t sure if I knew exactly what had been seen on the scans nor what was ahead.  I told her I did and suddenly the call became so much easier!  Upshot is that they’ve made an appointment for me on Thursday to have stereotactic biopsies under mammogram in the morning and then see my sarcoma specialist in the afternoon for the results.

How efficient is that?  Both appointments in the diary.  The specialists have seen my earlier scans, I’ll have the results delivered to me by my consultant with the pathology already completed.  And all that within a week since the ‘dots’ were first found on my scan.

Wimbledon Fever

I’d been talking about trying to get down to Wimbledon this season to see some tennis.  Silly really that I don’t go down every day as it’s so near to me – but it’s been 8 years since I last went along, queuing late afternoon and getting into see some fabulous games late into the summer evening.  However I was spurred into action by my friend Ismena Clout who posted on her blog a ‘list for living‘ and number 34 on the list was attending Wimbledon.

I have recently started playing tennis again at a local club (although not for a while since my fall in Australia and my somewhat ‘oddly shaped’ knee and as part of joining up for the coaching I was encouraged to become a member of the LTA British Tennis.  What a bonus because they sent me an email to say that although I wasn’t eligible (as such a newbie) to enter the first Wimbledon ballot, I would be eligible for the second ballot.  At 10am on 7th June I was therefore ready to go…  How surprised was I to see that there were actually tickets available AND for the final day of Wimbledon!

Little did we know but Andy Murray would also be appearing on the last day having got through to the men’s final.

What a fabulous day. We started off with a little light refreshment (errr bubbles) and strawberries & cream.  Most of our day was spent in Court No 1 (where we had tickets) and watched the final of the boys juniors (both boys will be adults next year so looking forward to seeing them get through to the Men’s Final next year); Invitation Senior Gents Doubles (with Pat Cash who I last saw at Wimbledon in 1985!); Invitation Ladies Doubles and then Invitation Gents Doubles.

BUT we did leave Court No 1 and headed out to see if we could get a spot on Murrays Mound during the epic Men’s Final… boy was that placed absolutely packed.  So we headed off to Court 2 where they were showing it on big screens.  The atmosphere was A-mazing… even more so when we saw Andy Murray WIN!  The first British man to win for 77 years.  Thank heavens – the nation were behind him… as long as he won!

A few pics for you:

Wimbledon with Ismena Clout July 2013

Performing at the O2 with the Rock Choir

As you know I’m a member of the Rock Choir.  I’m still loving it.  I’m still enjoying our rehearsals every Wednesday where I escape from reality for a couple of hours and concentrate on learning the harmonies, the movements and the words.

Today was a special day.  We, collective Rock Choirs, performed at the O2 Arena in London.  How mad is that?  A few months ago I didn’t sing in public and now I’ve recorded at Abbey Road, sung at Royal Festival Hall and now the O2 together with smaller local gigs.

I believe there were approximately 7,000 Rock Choir members in the O2.  We were separated into our harmony parts around the arena and together with our choir leaders who were on stage sang our way through an 18 song repertoire.

What a truly amazing experience.

Rock Choir 02 July 2013 (click on thumbnail to see picture collage in full-size)

Here’s a link to some of the videos on YouTube created from the event:

The Rock Gods AKA the Rock Choir Men

And a performance of Starmaker by the Choir Leaders

6 monthly checkups

A wonderful visit to Belfast to see Johan Gant and Nikki Tweed become Mr and Mrs Gant on 4th July.  Fabulous day and so pleased Johan was able to source and I was able to secure flights to enable me to be there between medical appointments.

Image

This morning, I was up and out of the hotel in Northern Ireland at the delightful hour of 4.45 A.M.… a time that I’ve not seen for quite a while!  Quick dash to the airport, a small flight to Gatwick, train to Clapham, bus to the Kings Road and then a short walk to the Royal Marsden Hospital.  Whoohooo I even managed to do all that AND be early for my appointments.

You see it was my six monthly checkups today.  My July regimen is ultrasound, mammogram and a chest x-ray.

There has been some discussion within the medical world that checkups are unnecessary, worrisome to the patients and costly to the NHS purse.  It’s been suggested that perhaps cancer patients should have less frequency in checkups.  Or no checkups at all BUT rely on patients raising concerns or with ‘quick access’ back into the system should we find any lumps.  This CANNOT happen.

I’ve been fabulously fortunate in that my medical teams have advocated for me to have a thorough checkup regimen agreed.

Today I was grateful for their professionalism and care of my health and these regular checks.

My mammogram slides have shown some spots that need further investigation.  The radiologist doesn’t believe that they are more Phyllodes tumours but suggests that they may be a scattering of DCIS (ductal carcinoma in situ). Because of the location of the ‘spots’ she has suggested that I come back for a stereotactic biopsy where they will be able to suction out several tissue samples.   I will hear next week about a date for this biopsy but expect it to be in the next week or so.  Following the biopsy, the samples will be sent to the pathologists.  Then the MDT (multi-disciplinary team) will assess the results and advice what the next steps are.

I’ll keep you posted…