Afternoon Tea with Issy

There’s something super special about finding fun and interesting venues to take afternoon tea.  I love the traditional but I also love the quirky!

Today Issy and I met up at Cannizaro House in Wimbledon for afternoon tea, a glass or two of bubbles and a great catch up.

2New-homepage-slider-for-cannizaro_houseSuch a gorgeous venue, whether you’re staying, dining, having afternoon tea or meeting friends for drinks on the terrace.

For us, afternoon tea was perfect.  What I haven’t got photos of is the delicious rabbit shaped shortbreads!  Lovely long afternoon catching up and putting the world to rights.

IMG_4074Although our interest was peeked when we realised that the terrace was obscured from our view today.. clearly there is work afoot and rumour has it they’re building an Orangerie – can’t wait!

Quartet

What a beautiful film.

imagesIf you’ve not seen it, do.  It truly is moving but also incredibly uplifting.  I saw it with my Godmother and a cousin of hers.  We laughed and I might have even shed a little tear.  How fabulous to think that a nursing home could be somewhere that is peppered with the sounds of people singing, playing, laughing and participating.  Shared passions through music that mean the older generation in the nursing home forget that they’re in their twilight years as they are immersed in music.  I know Mum would have loved to have reached an age where she was going into a nursing home if it was to be like this.

Beautiful.

*** Now to find the perfect recording of Verdi’s Rigoletto…

MRI

Eeek time for my MRI brain scan as referred by my neurologist.  Despite having taken part in a film for Cancer Research with me being zipped back and forth in and out of an MRI machine it’s not the same as having it switched on and being there on your own.  I know that it’s not for long and I just have to lay there without moving but it is weird and unnerving.  However another incentive for my being OK with it is that my niece is also having an MRI and said she’d have to wait for me to have mine as I was the grown up!

IMG_3191Here’s a little picture of me just before the nurse leaves the room and they slide me into the MRI machine… as you can see my head is already in a cage – eek!

Not long (about 15 minutes), very noisy (despite the headphones), jiggles around and claustrophobic BUT incredible machine that can do so much.

Now to wait for the results.

Phyllodes Support Group

One of the things I don’t often blog about in great detail is our patient-led Facebook group, “Phyllodes Support Group“.  You will recall from the beginning of my journey (still don’t like that word but haven’t come up with a better one yet!) that I found myself feeling alone and isolated with a diagnosis of Phyllodes.

I remember the fear when I was told that there is no/little information available for patients; no completed clinical trials or reliable data; no ‘specialists’ in the World and a varying degree of myth and misunderstanding on the Internet.

Our Facebook group has now been ‘found’ by over 500 members and grows almost every day.  We’re from around the World and have differing ‘success’ with medical teams knowing about Phyllodes, the treatment and outcomes.  So our group, I believe, has been critical to each and every member.  We share experiences, information and resources.  We ‘hold each others hands’ at times of anxiety and worry.  We have created a database of all the journals and papers ever written about Phyllodes.  We run polls of our members to find out the age of diagnosis, the prevalence of benign, borderline or malignant and much more.

We also have a poll that asks members where in the World they are from.  This poll has allowed us to be more specific with some information and support by sharing local ‘sarcoma protocols’ or similar.

There are 4 administrators/moderators of the group.  We live in different parts of the US, Italy and me in the United Kingdom.  For my part I try to befriend the members from the UK and share with them more local information that may be useful.

Today was no different.  I’ve been speaking with a new member of the group who was dissatisfied with her local hospital.  They had said they knew it was Phyllodes and how they were going to treat it – ‘watch and wait’ – despite it growing rapidly.  It was suggested that she get a referral to the Royal Marsden for a second opinion.

This morning I met up with her and her husband at the RMH before their appointment.  Inevitably there were a heap of questions they both had before their appointment (and ones they’d not wanted to ask in the group).  I hope my company was of value and comfort to them both.

I know I would have loved to have found just one other person with Phyllodes in the UK that I could speak to when I was diagnosed.

Chamonix & Christmas

I was invited to spend Christmas in Chamonix this year in a stunning chalet.

ChamonixWith great friends, old and new (and some crazy Christmas jumpers and socks!).

Chamonix1We had fantastic weather and great skiing conditions.

Chamonix2I had to leave the party on Boxing Day and fly back to the UK… fortunately in business class with bubbles!

IMG_3110And then back to Chamonix on 1st January for several more days of skiing and fun.

Chamonix3A perfect way to spend Christmas.  Thank you Jeff and Andy for your hospitality.

Neurology Appointment

Finally, after several visits to the GP I have now received an appointment with a Neurologist.  I have been extremely concerned as I’ve had a headache for many months that barely seems to dissipate.  Not always delibitating but sometimes it’s accompanied by a visual disturbance so that I can’t read, see a computer, watch anything and feel nauseous.

Recently, my GP ran a number of blood tests to see if they could find anything awry that may be causing the headaches.  My GP tells me that two of the tests have come back with extremely high results but on their own don’t tell us enough but could be an indication of a number of different ailments. Oh joy but hence my referral to the experts!

The consultant I saw today was extremely thorough.  A long questioning followed by some visual and physical tests.  He then asked that I follow this appointment with ‘a few’ blood tests and also referred me for an MRI of my brain.

I don’t mind saying that some of my concern relates to my phyllodes – could it have spread to my brain?  I also know that might make me sound paranoid but it’s a concern that keeps popping up.  However I’m also aware that I’m getting to that age when my body is changing and these changes have different impacts on my health!

The nurse nearly passed out when I handed him my blood test forms… after a short while he counted them up and suggested I make myself comfortable whilst he takes 17 vials of blood!  Wowza, we needed to find a second vein to complete the drain!

Now to wait on the blood test results and the MRI appointment.

Burglary

If you’ve been fortunate enough to never have been burgled you perhaps won’t understand the feeling that you have when you discover that someone ‘unknown’ has been through your possessions and taken the most valuable and often the most sentimental too.

I recall clearly driving up the M4 on my return from the Penny Brohn Cancer Care Centre. I recall feeling invigorated and ready to face the world. A world without Tish. But also a world that I had in mind I needed to rediscover. A feeling that I should venture back outside my front door, embrace and move on. Ready to look for new relationships and also go back to paid employment. I felt, although this sounds daft, like a Phoenix rising. On my drive home, I worked out what next. How I was going to attack some of the tasks I’d decided to undertake. What to do? When to do it? Who to speak to? For the first time in quite a while I felt positive. I was also longing to get into my bed (always freshly made with new bedlinen ready for my return from a break – a little OCD but there are worst things than making up your bed before going away so it’s ready for your return!).

When I got home and opened the door into the hallway, I knew instantly that someone had been in. My bedroom door was open. I always close it when I leave. Nobody had been due to visit. Nobody had keys. I knew something was wrong.

I first walked into my bedroom. They’d been through everything. Clearly they’d taken their time. Clearly they knew I wouldn’t be home. Every drawer, every cupboard, every box has been tipped up and the contents pillaged. Every handbag and purse had been rifled for money.

I felt sick. Terrified that they were still in my home. Violated. All that enthusiasm I’d felt on the drive home was gone… in an instant.

How could someone come in and go through my possessions with a complete disregard for my feelings?

The police were brilliant. They arrived quickly but were shocked at the state of my home. Whilst trying to reassure me they also told me that this was the worst they had seen.

I called a friend and went to stay on their sofa. I couldn’t even get to my bed for everything that was strewn over it. I didn’t sleep and was back early in the morning for the police to come back and search for fingerprints and clues.

It was also very difficult to work out what was taken as so much was out of place. Lots of empty boxes and disturbed possessions throughout my home. It took ages for me to work it out. The part that really destroyed me was that they had been through a lot of Mum’s things. Possessions that I’d not really taken the time to look at or open the boxes yet as they all held such memories for me.

Burglary

My office was in as much of a state as my bedroom. My computer gone. All the work I’d put into my charity work disappeared with the computer they had. Notes and research about Phyllodes and cancer. Yes I had a backup which they managed not to steal but nowhere to put it back on to and not complete.

All the plans I’d made to move on with my life taken from me.

It’s funny. A lot of people said ‘at least you were insured’ and ‘a quick way to downsize your possessions’. Both good points but insurance is only good if you’re replacing things that you don’t care about and that they CAN be replaced. Some of the possessions were irreplaceable.

I wanted to move on. But with every turn felt stuck until things were replaced, sorted and I didn’t feel as if ‘they’ had touched everything. A friend came over helped me sort out and clean my home. I also can’t sleep. Every sound at night and I was up checking outside, looking through windows and doors.

I’m also so angry. More when I was informed that they think it was one of my ‘neighbours’ who’d done it. I remember seeing him loitering on the street corner a few days before. He knew that I’d gone away. He probably watched me put my bags in the car. He would have seen me dressed in black heading off to Tish’s funeral. How dare he?

I need to move on. But how do I leave my home without worrying about it? How do I return without that sick feeling as I open the front door? How do I sleep through noises?

‘They’ don’t just take possessions when they burgle you. They take so much more…

 

UPDATE: It took months to sort out and find out what was gone. The insurance company took over 9 months to eventually settle the claim. Not that any of it was in dispute but because it apparently was too difficult for them to find comparable items… for cameras, computers and phones… so I found that I had to do the hard work for them and my poor insurance broker spent an inordinate amount of his time chasing them.

Penny Brohn Living Well course

Tish and I had intended to go together to a Living Well course at the Penny Brohn Centre in Bristol. However after much discussion and before booking we decided that we should in fact go separately to get the most from the retreat. Tish chose to take a wonderful friend of hers, Marie, as her companion and went to an earlier retreat.  Thank heavens as she truly felt it made a huge difference to her final months.

Tish urged me to book myself onto the Living Well course and suggested the course starting today.  I can’t help but know she knew that the timing was important. All day at her funeral I think knowing that I was going to be attending the course in a few hours got me through.  I knew they’d understand.  However I think I cried the entire length of the M4 and only managed to stop crying when I hit the outskirts of Bristol.

As soon as I walked into the Centre, I ran into Michael Connors, Director of Services.  I’ve met Michael a number of times before when I’ve been doing things with Living Beyond Diagnosis.  It was at least a minute after he asked me how I was, that I shed a tear again.  Michael was fabulous and reminded me that I was on the Living Well retreat for ME not as an advocate or on behalf of Living Beyond Diagnosis.  I needed to hear that at that point too.  Thank you Michael.

The Living Well course is an introductory course which aims to provide a tool kit of tried and tested techniques that can help you support your physical, emotional and spiritual health.

The Living Well course encourages you to explore the meaning of cancer in your life with people who understand the impact of the journey. Share your experience with others in similar situations, and think about what steps you could take now to help you live well.  During the residential course there is a wonderfully designed programme with group sessions including information, healthy eating, exercise, understanding the impact of cancer on emotions and relationships and sharing practical tips.

The facilitators use different methods of relaxation, meditation, mindfulness and imagery during the stay and also explain more about the science and research behind the approach.

The Centre is incredibly comfortable with rooms equivalent to any great hotel.  The days are emotional and challenging so despite our early bedtimes, we slept extraordinarily well.

I shared the experience with 10 others.  Both men and women.  Some with partners  and others with friends as companions.  There is also good representation of age and different cancer types and stages of diagnosis.

I came away with a mind full of plans for a future as well as a restocking of my ‘toolbelt for life’ with new and resharpened tools.  I felt lighter than I have for quite some time.  More positive.  Perhaps able to work through some anxieties and concerns.  In addition to this, I was also delighted to have made some wonderful new friends and to have received and given such heartfelt farewell hugs.