Last week .......

Please see posts below if you would like to see photos of zoo, engagement party and beach.

Another very busy week and no time for detail so we'll have points again! 

• best news Paul has heard he is to keep his job (more details next week) 
• Great news from my wonderful rheumy friend - I don't need to take bisophonates or stop arimadex
• Wonderful day at the zoo with Anna and Ben and a boat trip down the Regent Canal
• Coffee with a lovely friend from America 
• First pilates session (more on this next week with details of how you could join me doing pilates)
• Flower buying and flower arranging
• This weekend Paul and I are going to Chatham to stay with Chloe and Ed

I am blessed and so so thankful!

Photos part 3

We're going to the zoo, zoo zoo , you can come too too too!

Beautiful new penguin beach

Ben and Anna watching the penguins showing off

Amazing butterfly - it is real!

Anna practising her photography skills

Tiny Anna - huge polar bear

Iguana

Sleepy crocodile

Young silverback male

Tiger in huge new area.

My Boy

My other boy

Llama walking

Spider monkey above our heads

Back to the penguins again

Otters at play

Ben and Anna watching the otters

Sloth sleeping - of course!

Canal boats

Little Venice

Photos part 2

Chloe waiting..,.

 On Monday we had an engagement party at Ed's mums house. We had a really lovely day

The beautiful table

Yummy food

The happy Couple

Eating

Maybe Isobel and Josh?

Maybe Lucy, Josh, Clare, Paul and Debs

Maybe Lucy, Josh, Clare, Paul, Hannah, Richard

Definitely Paul and Chloe 

James and Cliff - I think

Jenny and Hannah

Boys chatting - Josh, Paul Philip, Ed

Girls chatting - Helen, Me , Clare, Helena, Jenny, Debs

The lovely present made by Jenny and Lily

Lovely tea set

Photos - part 1

Nearly swam.....

 A week ago we went to Bournemouth and had a wonderful day. here are some of the photos.

Paul not swimming!

My feet....

Some swimming going on

Beach huts

Eventually Paul was persuaded to paddle 

A boat

Weeknd joy

This weekend has been SO busy and has flown by and I have so much to tell you and so little time to tell it in! I will summarise and come back to detail and photos later! 

• Friday - Bournemouth - lovely day at the beach, didn't quite manage to swim in the sea but did paddle in my swimming costume, lovely meal in restaurant overlooking the sea, great drumming and good train journeys, Chloe and Ed arrived unexpectedly Friday evening
• Saturday - cooked breakfast (yummy), shopping, wedding planning, booking a wedding, pudding making for Monday
• Sunday - wedding dress shopping and buying - hurrah! and slow cooked roast lamb (Yummy) with Ed and Chloe - Paul promming
• Monday - Engagement party at Ed's mums for family - beautiful weather, yummy food and great company 

 So many lovely forever memories over the weekend. I am so thankful. 

This week - coffee with friends, a visit to London zoo, more pilates, flower buying and arranging, time with my own rheumatologist who will have a plan (we like a plan)  Reading Festival washing! Next weekend we go to Chloe and Ed's in Chatham so Paul can see the flat etc... My new normal is quite busy! I don't have time to be ill!

Significant change .......

So...... the story continues. Dexa scan yesterday shows (in the words of the radiographer) significant change. Both my hips and spine have changed and if the change continues I will have osteoporosis within 2 years. I suppose it is not surprising after 16 months of dialysis and taking arimadex but I had hoped that i would have a bit more time before facing this. I will now probably have to see the rheumatologist and may have to start taking bisphosphonates a drug which has to be taken 30 mins before food and standing up! (not good when you need to eat quickly in the morning or you are sick) I think though there will have to be some discussion with renal team as I am not sure that kidneys like bisphosphonates. Life is never simple with me!

On the plus side I managed 3 3/4 laps when I was swimming yesterday. Not quite the 4 I hoped for but better than the 1 I thought I would manage last week! Today I begin my journey into the world of pilates ( not pirates as spell check would like it to say) Not sure what my body will make of that. 

Tomorrow Paul and I are off to the seaside for the day - decided yesterday in the sunshine before last nights rain! Hopefully the sun will shine just for a bit tomorrow. At the beginning of the year one of my hopes for this year was to swim in the sea. Not sure I will manage that tomorrow but we shall see! We still have our holiday in Cornwall to come ...... maybe we will have an indian summer. 

This weekend - Chloe and Ed home, wedding dress shopping and an engagement party. My youngest boy is at Reading Festival (why am I not surprised it is raining).  I hope you all have wonderful bank holiday plans.

A year!

I have been processing today's news for most of the day. My oncology appointment went well and the amazing news is that I don't have to go back for a year. Yes you heard correctly - a year. It feels a bit scary to be left for so long - but as I have said before it is most likely that I  will notice any changes not a 6 monthly visit to a clinic. On a rather sad note though my oncologist is planning to retire and so this was my last visit with him. I am feeling very sad about that. He has been a rock and I have always felt in such safe hands. I am now being transferred to a general follow -up clinic where I could be seen by anyone. That feels quite scary and leaves me without a consultant should I have any panics! Most people don't have their own consultant but because of all my problems  I have always seen him and known he is only a phone call away should the need arise. So this is me in my new normal life! 

The other interesting piece of news that i discussed with the consultant was the research being done on taking hormone therapy for longer than 5 years. i am taking a drug called arimadex and there is now some studies showing that this should be taken for maybe as long as 10 years. I asked him if he thought that was worth considering and he said that he would recommend that I take arimadex or similar probably for 10 years. It is this piece of news that I have been thinking about for most of the day. No-one has talked about my life in terms of a  future longer than possibly the year ahead. With so much wrong just getting through each day and then each month has been wonderful but for the first time we were talking about decisions for 10 years time  - wow! 10 years would see all my children settled and hopefully happy and maybe some grandchildren to get to know. I know that there are no guarantees and everything could come back tomorrow - but just to hold a conversation about 10 years was so wonderful. Maybe this is my new normal! 

I went to visit the dialysis unit while I was at the hospital. The nurses were delighted to see me - some not recognising me with my new fat body and scruffy hair! There was good and bad news. One of the patients I had known well had sadly died but another had had a transplant. It was good to see some familiar faces along with many new ones. Just being there reminds me of where I have come from. I am SO thankful not to be doing dialysis. This is my new normal. 

I think it will take a while for all this to sink in. I am slowly learning to adjust to my new normal life while still working on change. I have warned Paul that maybe he won't be getting rich on my life assurance! He seems happy - with this new normal!

Oncology

So oncology today- another reminder of all that has happened. I always have a few anxious thoughts as I wait to see the Consultant, although in reality I am more likely to notice a change than he is. It is hard to sit in the waiting room surrounded by a clinic of people who have all faced or are facing cancer. Memories flood back - reminding me of sitting in the same clinic with mum or going even further back of sitting having coffee with my work colleagues (part of the clinic used to be our staff room when I worked there) . I am always grateful to leave with a 'NED' (no evidence of disease) and 'come back in 6 months or sooner if you are worried' There is such safety in those words. The recent death of my friend and a few deaths on the breast cancer forum bring back the reality of this disease. I am so grateful for these  3 years and would like many more. I put my hand into the creators - trusting. 

 The pictures are from the ballet we saw on Saturday - Flames of Paris. Not my favourite - it was more like a demonstration of the ballet dancers and lacked the passion that a sad story needs. At the end one of the characters is guillotined to death but I didn't even feel sad as I had struggled to work out who was who throughout the story. However there was some wonderful dancing and the costumes were great. 

We also had a lovely meal in the restaurant at Covent Garden. The food there is always wonderful. 

I will update later about appointment
.

God hath not promised skies always blue,

God hath not promised skies always blue,
Flower strewn pathways all our lives through;
God hath not promised sun without rain,
Joy without sorrow, peace without pain.

But God hath promised strength for the day,
Rest for the labor, light for the way,
Grace for the trials, help from above,
Unfailing sympathy, undying love.

God hath not promised we shall not know
Toil and temptation, trouble and woe;
He hath not told us we shall not bear
Many a burden, many a care.

God hath not promised smooth roads and wide,
Swift, easy travel, needing no guide;
Never a mountain rocky and steep,
Never a river turbid and deep.

But God hath promised strength for the day,
Rest for the labor, light for the way,
Grace for the trials, help from above,
Unfailing sympathy, undying love. 

 As I looked at the sky last night I was reminded of this poem. I had had a frustrating day - exhausted following our trip to London and unable to do anything that i had planned. It is so easy in those times to become frustrated and angry - I even said to Paul - I am never going to be better. How quickly I forget. How quickly I turn into a moaning, groaning minny!

But this poem reminds me - God didn't promise me an easy ride. He didn't promise me full health - he didn't promise me I would be completely well.

 But he did promise he would be here, he did promise me that I would know him whatever befalls. He promised me enough light for  today - for this step. He promised me grace and more grace even though I don't deserve it! Thankfully he promises me forgiveness when I forget and become grumpy and a new day  with enough light . I am wondering when I will stop forgetting and learn to live a day at a time. Just thankful for all that day brings - whatever it brings even if it is a bed day.

 This week - introduction to pilates, oncology appointment, mammogram results, dexa scan, coffee with a friend, swimming, cooking for party, flowers, some resting and a weekend with Ed and Chloe and an engagement party at Ed's mums, with a little wedding dress trying on as well.

 Sounds plenty busy!