Tribute

So, now, I have to write the post I never wanted to write. My beautiful wife passed away peacefully surrounded by family on 4 May 2010 at just 32 years old. I miss her more than I could ever say and I will love her forever but her blog is a source of great comfort. I can hear her saying the words and they trigger so many of my happy memories of her.

Although Jo never really publicised the blog particularly widely, I hope others also continue to find joy in her thoughts and recipes but above all her kindness, which shines through.

I think the best way to end the blog, as suggested by Jo's friend, Lucy, is to post the tribute that her friend Kate gave at the Thanksgiving service for Jo's life.

With love,

Jonny

Tribute to Jo by Kate Patterson, 17 May 2010
I am aware that I cannot begin to do justice to all the memories of Jo and all the love for Jo represented here and across the world by others who can’t be here. She was too special to be summed up by these few words. This tribute is given with deep thankfulness for her life.

Jo only lived 32 years but she made a huge impact for quite a small person. Although as some of you may have heard, she always insisted she was quite tall. We did try to correct this misunderstanding but she would have none of it!

The great impact Jo made was one of love and friendship but I don’t think she realised just how special she was to so many people.

Person after person has spoken to me about Jo’s generous and selfless nature. She genuinely loved to share. I remember going with her to Marble Hill Park and sharing a main course and a cake; afterwards she wrote in her blog, "My friend asked me what kind of things I like to do. I said "things like this." Share life. Share living. Share cake.”

Which brings me on to cake….. an important part of Jo’s life! Jo was a fantastic cook and loved to bake; it was Jo’s plan that we would have cupcakes after the service. She was the cupcake queen. In fact, Gen, who has organized all the cupcakes, told me that her friendship with Jo began and was cemented by the gift of a cake. When her friend Ali had her first baby, Jo organized a baby shower, made beautiful invitations and of course cupcakes.

I pick up from Jon that Jo was the organizer of the household – she was amazingly efficient. In September, Jo took on organizing all the food at our church alpha course, catering for over 70 people on the first night. She wanted newcomers to experience the welcome she had received. For one of the nights, she cooked 180 sausages!

Jo wrote this, “cooking is a way I express my love for those I care about. I love to cook Jonny things he enjoys after a long day at work, or bake cakes for people I care about …… This is a way I express my desire to nourish and support those who surround me.”

She made a cake with love for her niece Maisie’s second birthday. It was a great sadness to Jo that she couldn’t have children but being Jo, she responded by reaching out not shutting off. Jo described Maisie as one of the joys of her life and she adored looking after Maisie and little Hannah.

She was caring without being remotely sanctimonious. In her blog, she writes, “I popped over to see one of my lovely friends yesterday morning. She has a seven week old baby boy and has been struggling with lack of sleep……..So I’ve been pondering all week how best to help her and be supportive”. Typical Jo! What she did was to make soup and give a hug.

There are some great recipes on her blog – though I would love to meet anyone who has had the courage to try Jo’s recipe for sprout smoothie!

Jo was definitely adventurous. She loved to travel and if you haven’t seen her photos of the great whale watching trip, you might want to check out her blog. In fact all her photos are superb. I remember looking at them and thinking is there anything this girl can’t put her hand to? Qualified accountant, well-read, grade 8 piano, great cook, impeccably dressed….. but as her friend and sister Sarah said, none of that mattered to Jo compared to the importance of relationships.

Jo was fun, wasn’t she? She was good at teasing and being teased. She could give it - as she did in my birthday present of a mug which said “domestic goddess in disguise”! She could also take it. Jon used to tease her about her occasional tendency to mix up her words like when they were travelling and she looked out to sea and said, “Look at all those uninhibited islands”.

Jo was always good for a bit of retail therapy and liked the sales because you could focus on what you’d saved rather than what you’d spent. She was our fashion guru. Gerry tells me that she called Jo in to help her pare down her wardrobe. Jo patiently went through everything and when Gerry was reluctant to be ruthless, she simply told her, “Well I couldn’t speak to you at church on Sunday if you wore that!” They laughed a lot as they sorted through Gerry’s clothes and Gerry can now close the doors of her wardrobe.

I know one of Jo’s highlights of this year was the fairytale night at London Fashion week with Lucy where she met HRH Camilla. I hope Camilla knew how honoured she was to shake hands with our Jo. She was also thrilled to meet Rupert Everett who she described as having enormous nostrils!

Jo was beautiful, her shiny dark hair, her gorgeous scarves, her lovely smile and of course, her recent discovery of eyelash extensions!

Jo never felt she was brave but we thought she was. She could so easily have curled up in a corner in the last few years but instead she determinedly looked outwards and upwards. She enjoyed doing her Pilates and set out to learn to be a Pilates teacher. She used me as a guinea pig in January; I am taller for being stretched by Jo!

Jo was determined. We used to joke that although she was very gentle, she was also feisty.
She wrote, “Those who know me, know I do have a determined streak at times.” It was a determination that kicked in with the battle with cancer. She said this, “I refuse to be defined by it. I am so much more than this wretched disease” – and she was. She didn’t allow the fear of dying to stop the joy of living.

Jo had great faith. She believed God was bigger and trusted his love to carry her through the most difficult of times. She quoted this poem on her blog which her mum sent her:

"What cancer cannot do:
It cannot cripple Love
It cannot shatter Hope
It cannot corrode Faith
It cannot destroy Peace
It cannot suppress Memories
It cannot silence Courage
It cannot invade the Soul
It cannot steal Eternal Life
It cannot conquer the Spirit"

Jo’s faith was immensely encouraging to us but she never thought she was anything special. She really disliked it when people called her amazing; she was so honest about her fears and her grief and just felt she was trying to make the best of a tough hand in life. I loved this quote on her blog - "This is what I am - Just Jo. Nothing amazing. But here, loved by her family and friends. And Jo just wants to love back."

She did love us back in true Jo fashion.

It was that love and faith that marked out how Jo handled the suffering she encountered. Jo felt the tough stuff acutely but she had the gift of gratitude. She so appreciated her family and the way her mum cared for her. She was grateful for her friends: “… I have some really lovely friends. I know I didn't need to get cancer to tell me that, but to feel the strength of their support is something really quite wonderful.”

Her love for her Jonny was her great enduring joy. She wrote on Valentines Day, “Life may have dealt me some very tough cards, but not when it comes to finding the one.” She even became a genuine Manchester United supporter for Jonny!

Some people can be generous in a way that makes you feel you owe them. Jo never did that I.O.U. thing, she wanted to love us back. That made Jo an Olympic gold medallist at friendship.
One friend wrote this: "It is rare to find a friend you can confide everything in, a friend who really shares your joys and your burdens, celebrates with you and weeps with you and Jo was such a friend."

Another said this: "Knowing her has changed my life more than anyone else ever did. She probably was never aware of how much God used her to teach me. She was a true and honest friend and I feel so blessed to have known her."

And another: "For me it was the greatest privilege to have known her and to have been part of her life. "

And another: "I loved EVERY moment of our friendship, what a privilege to have been Jo's friend, she truly was a gift from God."

Her huge capacity for love and friendship made so many people feel special. It’s why this church is so full today.

All of us who knew Jo know that one of her biggest struggles with cancer was that she wanted to spare us and especially Jonny and her family the pain of grief. Sometimes she would say it was better we had never known her. But I believe that she has enriched our lives in ways that death can’t ever destroy.

Jo wrote this in her blog: "I believe most of us yearn to belong, wherever we are in life. For me, heartbreakingly, doors have been closed. But that is not to say I don't belong anywhere. There are special people and places and moments where I totally do. Not defined by illness or labels or what I look like or whatever. A level beyond any of those temporary things that seek to destroy my human spirit."

Jo grasped that love is eternal and found a deep reassurance in the knowledge that she belonged to God. There is a song she loved by Kathryn Scott called “I belong” which the band are going to sing. These are the words:

"Not angels, nor demons, no power on earth or heaven
Not distance, nor danger, no trouble now or ever
Nothing can take me from your great love
Forever this truth remains – I belong to you

Not hardship, nor hunger, no pain or depth of sorrow
Not weakness, nor failure, no broken dream or promise
Nothing can take me from your great love
Forever this truth remains-I belong to you"

Jo found these words immensely comforting and I believe she would want us to know that same comfort today.

We are deeply grateful to have had Jo in our lives.

Easter Weekend and Derbyshire delights

Ok. So last weekend was a while ago now. Especially since my non bloggable issues, the airline industry coming to a hault with the Icelandic volcanic ash (which rather amusingly no one on the BBC can pronounce - so just aren't,) and the bit political debate last night.

BUT last weekend we stayed at Mottrum Hall in Cheshire. In retrospect, given my tum, we maybe should have stayed home. But those who know me, know I do have a determined streak at times. And this was planned. The place is grand from the outside, and has a nice spa and relaxation area. I got all the info from my manicurist on who is a member. It's footballers wife's country. Carlos Tevez, Wayne Rooney, Michael Carrick are all members apparently. And Sir Alex used to be. Some of the Chelsea team were staying in an annexe on the Friday night before the game. Not that I saw any and the less said about Chelsea the better.

Given all this, the rooms are not actually that swish. I mean they are fine. But could probably do with updating. Good breakfast mind.

We tried eating out a couple of times. Bad move on my part. Should have taken a picture of Jonny's face when I ordered the muscles one evening. I mean really. Of all the things to order.

Our time "out" was in Derbyshire on the Sunday. It really is beautiful. Stunning in fact. We visited Buxton briefly only to realise everything was shut on Easter Sunday, but was pretty to see anyway. I post a couple of pics of us out of the car and looking far more active than we actually were, and far less rainy than it actually was. Still loved the fresh air though.

Our time with the family on the Monday was lovely. It was great to see everyone and to see our nephews getting on so well. I think the activity books we chose were a hit too. As Jonny had work to do in Manchester on the Tuesday my sister in law introduced me to the Trafford Centre. Oh and a stop at her favourite local boutique, where I may have purchased a top...

Oh so silent blog

I know I have sent a couple of alarm bells ringing with my lack of blog posts the past few days. So am just updating to say I am still here.

There are some things that when I just don't want to blog about. Too hideous. Too private. Suffice to say I am getting lots of good care and things are slowly improving. Ironically it is the side effects of a tablet to reduce the side effects of the chemo that have caused so much drama.

People are being very kind. Jonny is well fed, which is such a blessing. To not to even have to think what he may have for dinner each night. If only I could join in the eatng more. The food looks good just no tum for it. Very basic diet for me right now.

I have offers of people to come and sit with me. They keep saying they don't mind how I am. The trouble is that I mind. It bothers me.

I know I need to get over myself but it is a step at a time. This is happening to me. And it is for me to know what is right and helpful and what isn't.

Weekend getaway

I have been really looking forward to getting away this weekend. We both so need a change of scene and the country side location looks beautiful. There are some things that doctors can't prescribe but you just know will do you good.

I was getting even more excited yesterday as I was feeling well. Eating and digesting normally. Which has taken a long time to settle. So I have been rather put out by a nasty reaction to a toasted turkey sandwich I made myself for lunch today. I spent the afternoon in bed. And elsewhere. This is getting so bloomin tedious. Now I am worried I will be spending the entire weekend inside the our hotel room bathroom.

Let's be positive. It could have just been one of those things. And careful choices over the next 24 hours should hopefully mean I don't have to order a slice of toast for my dinner in the nice restaurant tomorrow night.

We are still very much going. And we WILL be having a lovely time. There is more to me than my tum.

Jazz Night

I had a night out last night. I can count the nights out I have had this year on one hand. So it was all quite exciting.

I went to a jazz night at the Bedford in Balham with a couple of friends. Now I am not really one to listen to jazz much at home. But live it is amazing. My friends friend had organised the event, so we had reserved seats right at the front. The pianist was incredible. Such talent. And the vocalists pretty awesome too. The lead vocalist was Liz Cole. You should check out her stuff:

http://www.myspace.com/lizcolemusic

It was great to be out and doing something "normal," whatever that is. And also brought back a few memories. As Jonny and I went on one of our very early dates years ago to a comedy night at the Bedford.

I was in a good mood last night anyway. I have confused the hospital in a good way as my red cell count has gone up rather than down, so no need for a blood transfusion right now after all. They can't really work it out. But no complaints from me.

Sleep Please

I am getting so fed up with my sleep problems. And getting fed up with them probably doesn't help.

I don't think I helped myself yesterday. I had an unscheduled trip to the hospital in the morning to try and sort my anaemia problems out. And then a GP appointment mid afternoon. This meant I didn't get my afternoon rest until 5 ish. I fell promptly fast asleep until gone 7. And this probably didn't help me try to get off for a good nights sleep a couple of hours later.

But this problem has been going on far longer than one night.

For those who have never encountered insomnia I can only imagine it sounds ridiculous. If you are tired, surely the body will just go to sleep for some rest. But that is the whole point. With insomnia the switching into sleep mode just doesn't happen. This leads to over tiredness in the night which makes the problem even worse.

I have some reflexology booked for later on today. That seemed to help massively last week so here's hoping it does the trick for me again tonight. That and a soak in some lovely bath oil my friend dropped round yesterday.

Not only am I totally fed up with my sleep problems. I am also thoroughly bored with going on about them.

The GP I saw yesterday described my whole situation as a "bugger." I was rather taken a back. But couldn't help finding myself agreeing with him. Quite frankly it is.

Cheats Easter Simnal Cake

I haven't posted any recipes in ages. This is a cheats version based on one that Nigella does for the traditional Easter simnal cake. I just do it this way and it is super easy. If you are a marzipan lover this cake is divine.

For those who don't know, it has 11 balls on the top. One for each apostle. Apart from Judas who isn't allowed on the cake.

Ingredients:

175g butter or margarine
100g golden granulated sugar
75g white granulated sugar
230g white self raising flour
3 large organic eggs
500g good quality mixed dried fruit
Dash of milk
75g glace cherries - sliced
Pinch ground Cinnamon
Pinch ground ginger
Pinch All Spice
Approx 750g shop bought golden marzipan
Couple of tablespoons of apricot jam

Method:

Preheat oven to 160

Grease and line a deep spring form baking tin.

In the food mixer blitz the butter, eggs and sugar until smooth. Add the flour, milk and spices and blitz. Stir in the dried fruit.

Roll out about 400g marzipan and cut out a layer of marzipan to go in middle of cake. Put half the mixture in the tin. Put in the marzipan layer. Top with remaining cake mixture.

Place in oven for approx two hours. It is done when it is risen and a skewer test is clear. Leave overnight in tin to cool completely.

The next day remove from tin and remove all the lining paper.

Roll out another marzipan circle. Also roll 11 little apostle balls. Melt some apricot jam and smooth over top of cake. Place your cut circle on top. Fix your apostle balls with either a little of the jam left in the pan or some egg white.

Done. Even if you don't like marzipan it is a great centrepiece to have around over the Easter weekend. I'm not sure ours will last that long.

Glazed Painted Cupcake

Here is my finished glazed cupcake that I had much fun with a couple of weeks ago when I went pottery painting:

I am really pleased with it. And you can keep things inside too. Maybe a cupcake I can eat..

Women's Breakfast

I love the women's breakfast at church. It is usually just once a term, and a time for women to get together, chat, laugh, share and usually we have a speaker.

I went along this morning. My digestive problems have been so hideously bad recently, coupled with my insomnia, that yesterday I didn't think I was going to make it. This would have been a blow having not gone to the Love Maggies afternoon yesterday, which I really wanted to go to, and having to rearrange my course assessment that was meant to be today too. I was feeling like I was going to be bound to the sofa for the rest of my days.

Anyway thanks to advice from my hospice nurse (who is AMAZING and so much help) I managed some sleep last night and this morning was feeling better so did make it.

I guess there are about fifty or so women who usually go along, and the rough age range is from those in their early twenties through to early sixties. I love the fact that no labels apply though. By that I mean it doesn't about your age, career, family circumstances, illness or whatever. It's just a bunch of lovely ladies who get together, have a chit chat over some croissant and fresh coffee and share their lives with each other for a couple of hours on a Saturday morning.

This morning an amazing lady talked about how her faith had helped her to cope with her partial facial paralysis which suddenly hit her 18 months ago. And then a wonderful hilarious guest speaker used the analogy of clothes to talk about how we try to fit and clothe ourselves in what doesn't always fit - and how our faith challenges and frees us from that. I laughed a lot and caught up with friends. A very different place from the sobbing mess I was in yesterday evening.

Now home armed with a strategy to try and sort out my digestion. I am still on full anti sickness medications nine days post chemo. This is not great. I tried stopping them yesterday and it was something of a disaster. I am treating myself like a child. I have made myself a sandwich. Cut it into quarters and will be eating ONE quarter PER hour this afternoon and no more. That is how bad things have become that I am having to ration myself small portions of food so I don't get some hideous reaction.

In the dark moments of yesterday evening it occurred to me that it really isn't any wonder I feel so ill. I haven't been able to digest a proper meal in over a week. Even though I am exhausted I can't sleep because of my insomnia. I am in all likelihood very anaemic right now. And my white cell count will be at the lowest in the cycle meaning I have very little immunity. So I decided to give myself a break. Put all that together, along with the bloomin nasties in my body, and it is no surprise I have been feeling so shocking.

It's no fun. So I am very grateful those lovely girls had me smiling and laughing this morning. Now time for some TV in bed. I am just going to be very kind to myself right now because that is what I need.

Sweet things

Thank you for my Easter biscuits that arrived in the post today. So kind.



My tum tum is not well. But that is not going to stop me eating them anyway.

Walk in the Park

So simple. Yet so nice.

Fresh air in Richmond Park first thing this morning. Shared with a very good friend.

The birds were singing for spring. And after a little bit the sunshine did breakthrough.

I was out. Walking. Enjoying. Living.

Change of scene day

So I had my change of scene day today. It's been a week with mainly these four walls of this home. I love my home but it was time for a change today. It was lovely. My friend has more womens magazines than a newsagent so made a good stab at catching up on trends and celebrity in between naps in the morning.

I then ate a whole jacket potato with tuna on it for lunch. I realise that is NO big deal in any one else's world but to me it is a big deal. HUGE. I am starting to eat properly again. Yey.

My afternoon was then a reflexology treatment in the snug as a bug room, and then moved myself onto the spare bed for some afternoon nap time.

I am learning that saying yes to help is sometimes a very good thing.

Snug as a Bug

I have had a very restless night. There have been digestive problems that don't need any more said about them. But also a general restlessness which tends to kick in around this time in my chemo cycle.

It is VERY frustrating. My body clearly needs sleep. It has just undergone a chemical onslaught (again.) And my cell counts will be hitting their low so really what I didn't need was to spend last night in between the bathroom and tossing and turning all night in bed.

Some very good friends of ours renamed their spare room the "snug as a bug" room. And after a couple of hours of this frustration last night, this is where I relocated myself too. My Jonny was none the wiser, fast asleep (snoring,) and no point us both suffering this. Besides which makes me feel even worse about the whole thing if he is even more tired than usual for his stupid o'clock early starts.

Our "snug as a bug" room got redecorated a few months ago. We sometimes think of it as the unnecessary part of the house. Up in the loft conversion and only really used when people come to stay and for storage. However in recent months there have been various illness reasons (understatement?!) which mean being banished to the "snug as a bug" room have been necessary.

It's all in the name you see. Call it the spare room and you feel like a spare part. Call it "snug as a bug," and it feels almost like a treat. Today I am off to spend time in my friends "snug as a bug" room just for a change of scene. I am not going there to be spare or invalid you see, but to be snug.

Grateful List

So I have been hanging out in chemo land for a few days now. There are somethings that I am very grateful for:

• Robinson's Peach Squash. It is not as acidic. I have been able to drink it. Yey.
• Gnocchi. Those potato nuggets meant I could diverge from toast and cornflakes.
• Cadbury's Chocolate Buttons. I know we aren't supposed to buy Cadbury's any more now it has gone yank, but I am allowed concession's in my state. And mid afternoon that little bit of chocolate has kept me on.
• Ann and her anti sickness drugs. Upped and upped. Nausea still present but not been sick once. This helped massively with hydration.
• It is the Tuesday after the Thursday before and I made it out of the house this morning. First time out in under a week post chemo. Even to lay on my mat in my class... paid for it later with an afternoon in bed but was worth it to get out.
• Food deliveries tastic for Jonny. Thank you. Thank you. Thank you.
• Jon calling me from work yesterday to suggest a 3 day spa weekend over the Easter weekend. And then coming home and booking the entire thing. The rest and change of scene for both of us is much needed.
• Love.

So it is no laugh a minute, not by a long shot, but it has been better than last time. And the not so nice stuff is private and not for blog world.

So I will sit here and dream of my Easter mini break. I'm sure Bridget has a great line on that one. But my chemo brain can't remember what it is.

Sleepy Head

I have spent most of today asleep. Can't really remember anything else or what I did yesterday.

We have had lots of nursing support which has been great. Had no idea it was available. But have had two phone calls from the community matrons today as well as the visit from the my hospice nurse, I mean Ann, yesterday. So having felt very lost at weekends and generally a few weeks ago, we do feel a lot more supported. And we are very grateful.

In my waking hours this evening I am alarmed by the amount of rugby on the TV. I have done well over the years to learn about football I think. But rugby I struggle. I know that won't be a popular call but just the way I am.

How long until Wimbledon is on until I can get my own back?

Back for more

Yesterday I was back for my ten hour stint of infusions in the chemo ward. Joy upon joy. Usual drill of my seat in the corner. Usual faff of entering my veins and port. Usual doesn't mean I am ok with it. It is still a horrid thing to go through. That's the kind of thing people like to comfort themselves with. That I am used to it all by now. Yeah right. For the record you don't "get used to cancer." You just get on with it the best you can because you have no choice.

People often ask me what I do the pass the time. Which is one of those questions that people who have never been through this would obviously ask. But this isn't like just sitting there nursing a broken leg or something. I feel progressively more ill the more chemicals enter my bloodstream, so reading a book or whatever, really isn't what I feel I can do. I knit a little. I sleep a bit. I flick at a few pictures in magazines. I took my new laptop with me yestaday so wrote a little in the morning when I could.

Jonny has been in the far east all week with work, although thankfully landed very early this morning. So my Mum stayed over with me last night. Within half an hour of being home there was a ring at the doorbell and a delivery of a hot homemade casserole and freshly baked scones. How grateful we are for accepting support and help.

Some parts of my experiences are private and complex. But there have been various changes to my medications and because I have had such rough time, a considerable increase in the list and type. Ann the (hospice) nurse came today to help me with all of that side of things and I am feeling more in control.

Maybe. Just maybe this time won't be so bad. I smile. It is nearly 4pm and I am still in my PJ's. I've only just realised with my chemo brain. Hmm. Maybe things won't be that good either. But any improvement I will take. Just don't mention n.a.u.s.e.a.

Kew Gardens

I went to Kew Gardens earlier in the week with a couple of friends hopeful of seeing daffodils. Still no joy there. A few were threatening to come out but not quite yet. My ones in the garden are starting to bud a little bit but still very slow.

I don't know why I am so eager to see daffodils right now. I think they make me think the winter is ending and the summer will be here soon. And that is what I need to feel right now. Not only emotionally, but also I just really want to slip my feet into flip flops and go and get a pedicure and get some sun in.

Our Easter plans for a mini break seem to have diminished. To get heat is too far, and I am not really up to getting on a plane right now anyway. UK is tricky with cold weather and inflated Easter prices. It maybe a staycation after all. Which I am fine with as long as the playstation doesn't get much use and we get to get out and do stuff. I will be planning an Jo style itinerary if that is the case.

Reflexology

Having spent the day feeling rather rubbish due to the adverse reaction to the sleep aid (or rather aid to NO sleep in my case) I am feeling much better. I have just had some reflexology locally. I loved it.

I have written before about my lovely friend who has given me lots of reflexology over the past few years. She has a 3 month old little boy now so finding time to massage my feet is not easy. Although we may find a way yet.

I have no idea why reflexology works. All I can say is I felt like a different person after an hour of foot treatment this evening. My headache had cleared. I felt more balanced. And like I had experienced some really deep relaxation. I have already booked to go again in a couple of weeks time after my next chemotherapy. It's all about finding the things that help right now. And, in my case, reflexology is certainly one of them.

Annoying

As part of my discussions at the hospital yesterday one of the things we talked about was getting me as well as possible ahead of my re entry into chemo land on later in the week. We talked about my ongoing insomnia problem. I don't like taking sleeping tablets or "sleep aids" as they are sometimes politely called. But I could see the logic in trying to get a couple of good nights sleep in. So agreed to a short term plan for a couple of nights.

However I did not react well to whatever I took last night. It took forever to get off to sleep. Woke several times in the night. And has caused all sorts of digestive problems. I made it to my class this morning just about, but couldn't do everything. And needed to come promptly home afterwards.

How annoying. I don't need to be feeling ill 2 days before I am about to be feeling bloomin awful anyway. I won't be taking any more of that sleep aid. In my case it has been more of a "make you feel rubbish aid." Genius.

Ugly Betty Box Set

This series completely passed me by the first time it was on. But glad to have just finished the very entertaining box set of series 1. Not really what I was expecting. In that you really like Betty. Or at least I did.

I keep hearing very good things about Glee. It is on at 9pm on E4 tonight. I have missed the first few episodes but will be watching. In bed.

Visit to the Maggies Centre - Charing Cross

Before heading off to the hospital this afternoon, I decided to pop into the Maggies Centre at Charing Cross. Having heard such good things at the Anna Valentine Fashion Show, and about these places generally, I was curious. I was also VERY nervous. In fact, today I was more nervous about walking in there on my own than I was about looking my oncologist in the eye later in the day.

Maggies Centres are support centres for anyone affected by any type of cancer at any time. So why was I so scared about stepping into a place like this? I have blogged before about how I have found it hard to fit in at other cancer support places I have tried. Partly my young age can go against me. I have felt very isolated and different from other visitors and like everyone just feels more sorry for me than anyone else to be dealt these cards at my time of life. Well yes it is total rubbish. That is a given. But if I go somewhere like this I am looking for support not sympathy. They are very different things.

I guess also the course this cancer has taken can make it hard for me. I visited a Breast Cancer support centre for some individual therapies (massage and the like) during the treatment for my primary cancer five years ago. When I went back a couple of summers ago after my cancer had returned, it just wasn't a place for people like me. It was good support for those going through treatment the first time - but the staff seemed a little lost as to what to do with someone like me. Surprising really. Given that there will be 46,000 women diagnosed with breast cancer in the UK this year. And for approximately a third of those, sadly their cancer will return at some point in the future. Regardless of prognosis or treatment. Harsh facts about a very harsh disease.

But back to cancer support centres. Another challenge for someone who is dealing with long term treatment, like me, is that often these places have a limit on the support they can offer. Given the number of cancer patients and the limited funds, this is completely understandable. But for someones like me, a couple of months is not really enough.

And partly it is just me. I often feel like this disease takes over enough. I just want to be free of it. I don't want to be spending my days trying to fit into a world I so don't want to be a part of.

So why then go to Maggies at all today? Like I say I was curious. I have heard good things. Janet Ellis gave a very convincing speech at the fashion show about why she believed Maggies Centres were so helpful. Even for those who have the love and support of family and friends. A safe place. Where no judgements were made, and you could access help. Help to facilitate living your life, not limiting it. And five years into living with cancer (albeit for a couple of years back there we all hoped it had gone) I know I am needing help. I am getting better at letting people help me. And I am not against finding a place that does support me, I just haven't yet.

So with a dry mouth and pounding heart I walk into Maggies at Charing Cross Hospital. There is busyness. I walk around a little bit and pretend to look at a few leaflets hoping someone will rescue me soon or I will be walking straight out again, even if I am taken with how beautiful the building is. I don't have to wait long. Someone comes over and asks me if I am new. She shows me the kitchen and makes me a cup of tea, and shows me where things are. We then move to the library area where she says she will tell me a bit about Maggies.

This is my cue to say why I am there. With tears in my eyes and a lump in my throat I give her a summary of where I am with cancer, treatment, life. She doesn't look at all shocked. She just looks and listens and seems to empathise. I feel this isn't the first time she has heard stories like this. I come straight out with it about why I find cancer support places hard. She listens and agrees. She then starts to tell me about a couple of the support groups that are relevant to me - it turns out I am not a freak of nature after all - and relaxation sessions and individual therapies. Maggies offer long term support so I can go as much or as little as I like for as long as I like. I can dip into stuff and out of stuff. She also booked me in for some reflexology after my next chemo.

She shows me around. There are lovely places to just sit, and relax, or read, or be quiet. I quite like the idea of getting a cup of tea there occasionally and just hanging out.

I have to get on to the hospital so having been there for about an hour - most of which I spent talking to Mary - I leave. And I leave happier than when I went in. On first impressions I like this place. And I feel I will go back. How much I don't know at this stage. I have a lovely little private on line support group so will have to see if I go along to that side of things. But I feel positive about it. And this is a pleasant surprise.

I was in a better mood for facing the hospital after that. More drugs coming my way to deal with side effects. But the good news is we are just pressing on with chemo for now and I won't be having to go through the ordeal of a scan right now, which is a massive relief.

Got home to my lovely friend dropping round cashew chicken and rice for my tea.

Usually my Mondays that involve hospital are just no fun. But today was not so bad after all. I even managed to smile in my consultation. Now that doesn't happen very often these days. Believe me.

Tired Girl

Goodness I feel tired. I think it is physical AND emotional stuff today. It's just hard today. The way things are. And then facing being back at the hospital this week. It is exhausting in itself.

I have had a couple of nice enough days. I took care of my friends little girl yesterday which was lots of fun and I had a nice brunch with friends from University this morning. But I have this need for lots of sleep. It just doesn't always happen at night. But I am hopeful it may happen tonight.

People are so kind though. Messages. Support. Food being dropped round. And love. I just long to be free of all this to love back. Or at least be able to return calls I need to.

Maybe tomorrow it will all come together though. After my very good nights sleep.

Morning at The Pottery Cafe

How much fun did I have this morning? I went to the Pottery Cafe in Twickenham with a couple of friends and we painted pottery. I have never done this kind of thing before but I got completely lost in it in a good way. Apparently "arty" things like this are meant to be good for me at the moment too. Here are a couple of snaps with my painted, but not kilned cup cake - it had to be a cup cake right?

Sure I have been tired this week. And had to take lots of rest. But my nausea has gone and I have managed to do a couple of really fun things too.

Treat on the doorstep

I have been dreaming of a proper English afternoon tea. And when I got home this evening there was a little parcel on my doorstep. It was from Betty's Bakery in Harrogate. Hmm I thought. And I opened it up and inside were freshly baked scones, jam, tea and ginger cake.

So now I can have my own little afternoon tea here. Tonight while the scones are so melt in the mouth fresh.

Thank you Kate and John who managed to send me English scones despite living in in Jerusalem. Yum.

Trevor Sorbie Charity - My New Hair

I still have my hair. And I am really pleased and relieved. Right now it is one less thing to have to deal with. There is no guarantee it will stay the course of this round of treatment. And sadly at some point in the future it may actually go.

Despite some pretty aggressive chemotherapy treatments I am still yet to be bald. And for this I am so grateful. I have endured the extreme discomfort of several cold caps. Not right now, but I have previously experienced the sadness and pain of clumps of the stuff coming out in the shower and it being pretty thin. People always said they couldn't notice. I always half took this as an insult. Blatantly my hair looked pretty dry, thin and awful. And I liked to think it wouldn't normally look like that. But I know they were just trying to be kind. The other classic line is "you know it doesn't bother us if you loose your hair." To which I have responded: "Don't you get it? This isn't about you. It bothers ME!"

Since the Anna Valentine fashion show I have exchanged a few emails with Janet Ellis. She is so lovely. She was trying to get in touch with Trevor Sorbie himself to cut my wig for me, should it be needed. She has just got back in touch with me. Trevor Sorbie has just set up a charity called "My New Hair." It is a dedicated wig cutting service for cancer patients.

I think this is just totally fantastic. One of the most important things to make a wig look realistic is the cut, and that it is cut for you. I cannot tell you the stress I have considered of having to go into a local hairdressers where they are not used to having to deal with this stuff. To have to explain what is going on. To get that pitiful look. And then quite possibly be turned away because the hairdressers are not trained in this area.

The link the website is below. It looks like they are fairly new. But I for one will be visiting the salon in Percy Street as soon as it is needed.

I guess to an outsider it could possibly seem as though relative to everything else cancer patients go through - and the severity - then loosing your hair is not that bigger deal. From my point of view it is like another twist of an already very painful knife. Prisoners have their heads shaved. It is yet another thing that is personal and part of who you are, that is taken away from you. A bad hair day times a million. And such an outward sign that you carry the label of cancer. And a bad wig is a little consolation.

I think it is truly wonderful that Trevor Sorbie has recognised this as such an important area to helping someone who has cancer to be able to LIVE. To step outside the front door and not feel like you have a big "C" on your head. But rather an individual who is as entitled to a decent haircut as anyone else. I for one will be making a donation to support his charity.

http://www.mynewhair.org/Home.aspx

Lovely Day in Town

I had a lovely day yesterday. I did my stretch class which made me feel, well, stretched. Afterwards my friend (who happens to be the my stretch teacher too) drove us into town for some fun. We visited Anna Valentine at her studio. It is located in one of those really pretty Mews streets that are tucked away in London, just off Marlybone Lane. The building is beautiful. White wash walls, stone floors and open fireplaces. And her collection of beautiful clothes amazing. Having seen them at the fashion show a couple of weeks ago, it was great to see the detailing and fabrics up close. I got all dreamy about owning one. And I will keep dreaming about it because chances of me having the floaty nude coloured dress I was eying up are pretty darn minimal.

We then visited Rococo Chocolates to collect my winning box of chocolates. Rococo chocolate is delicious and the packaging lovely. I need to take a picture quickly to post as the chocolates themselves seem to be evaporating. I have no idea where they are going...

We then had a lovely lunch with maybe just a few bubbles... and a mooch along Marlybone High Street into the VERY nice shops. I may have purchased a couple of things while I was there. I love this bit of London. It is so close to the chaos of Oxford Street yet such a completely different feel. If you haven't discovered it yet the you should.

Although I was tired when I got home and went to bed very early last night, it was great to be out. I am living most of my life at the moment either within this home, or the few surrounding streets in the local community. It was great to just be out. To look at lovely things. To laugh. And live.

Celebratory Lunch

I had a celebratory lunch today. I was celebrating the fact I didn't have any sickness or nausea for the third day running. And also my lovely friends birthday.

My friend is so lovely that on her birthday last week she sent me a new top in the post. I only managed to send her a card, thinking I was seeing her today so I would pass on my gift to her then. I felt rather bad about the fact that I was the one with the gift last week.

We have been friends for about 5 years now. In fact, the circumstances of my initial diagnosis led to us becoming good friends. I didn't know her that well then, more a friend of friends. She had just qualified as a reflexologist having left a very successful career as a solicitor. Law just wasn't for her. And in her thirties she found herself able to retrain. So when she heard I wasn't well she offered to give me some reflexology to help get me through my first, and back then we thought it would be my only, course of chemotherapy. I didn't even know what reflexology was. But she gave me the wonderful gift of visiting me at home a couple of times a week, giving me treatments, and chatting and encouraging me.

Since then we have remained good friends. I have had lots more reflexology since then from her. I have no idea why rubbing certain points on your feet can have the impact that it does. I believe we are fearfully and wonderfully made and all I can say is I have left with migraines cleared, slept better, and also found it particularly helpful at alleviating the side effects of various hormone treatments I been prescribed.

But more than that we have shared our laughter and tears. Ups and downs of each others lives. And although I would never of chosen the circumstances of us becoming friends, I am really grateful to have her in my life.

She has just had a little boy so it is limited how much reflexology I can have from her right now. But she was offering me to turn up to her home in my PJ's and use out in her spare room, her bath, anything really and be in chemo land in her beautiful home and she would look after me any time. I will have to see whether I take her up on it but I promised I would think about it.

Life may have dealt me some really tough cards but I know I do have some really lovely friends. I know I didn't need to get cancer to tell me that, but to feel the strength of their support is something really quite wonderful.

Doing and being

After a week of horridness in chemo land, I have had a couple of days this weekend of feeling relatively "normal," whatever that is. Sure I have still felt tired but I haven't felt nauseous and this is a first in weeks.

Yesterday I helped my friend who was running a stretching workshop. She was very much leading, but it felt so good to be in my tracksuit, setting out the mats, hosting and helping. This is something I really enjoy doing. This has nothing do with the elephant. I just like it. So for a few hours I felt out and about and not chained by the thing that is constantly trying to hold me back.

I felt tired afterwards so we ditched our evening dinner plans. And we didn't make it out for lunch today either. I was rather taken over by the novelty of being able to eat and not having to sit on the sofa, so had planned a weekend of eating out. But in reality this body is still tired. Having got out yesterday, and had a lovely walk in Richmond Park this morning, staying home for meals felt like the right thing to do. When I walked across one section of the park I was struck by the sense I was in a field. And the sun was shining too.

Am really hoping the lack of nausea right now means things with my insides are improving. I just don't know. I know I can endure more chemo, and all that that entails, but getting it to have the impact I and so many desire is not in our hands. I just have to trust and hope and pray.

As a complete aside my friend has been posting on her blog a few extracts from my blog along with my wig story which is quite amusing. I met Janet Ellis at the Anna Valentine Fashion Show and she has been in touch about someone who is very good at wig cutting. I still have my hair and hoping to keep it that way. BUT it turns out the hairdresser is Mr Trevor Sorbie. So if it comes off (not literally I hope) I will be blogging about that one and have to model the new "do" occasionally, even if I keep my hair underneath ... just because it is cut by him.

Something beautiful

Well fed

Yesterday I started eating properly again. I had a very frustrating mid week experience where I wanted to eat more than just toast but my stomach was really struggling to take it in. Last night someone made us fish pie. It hit the spot.

Whilst I have been FED UP, the other member of our household has been very WELL FED all week. We have been so touched by the kindness of the church community who are reaching out with love at this time. For over a week we had Jonny's evening meals delivered for him and this has been a huge help. There have been pangs of guilt. You may have got by now I struggle with accepting help. But goodness. The boy has eaten well.

Obviously this illness doesn't just affect me. On our wedding day we had a phrase from dove poem which read "two parts of a loving whole, two hearts and a single soul." And whilst I am camped out in chemo land at home, the other part of us is working 12 hour days, coming home to try and look after me, as well as dealing with his own emotional fears I know. So having a good proper meal sorted has REALLY helped.

So we say thank you. Thank you. And thank you again.

Tonight we will be eating in Pizza Express. And that feels like a massive treat of a different kind too.

Blue Badge

If you want the cancer you can take my parking space too.


Nuff said.

Belonging

One of my experiences of the past few days has been letting local hospice care help me at home. This has been hard. Emotionally. It's that word. Hospice. Is that where I am? Is that what I need? How can this be?

It turns out that this is Ann's job though. To visit people like me who are dealing with side effects and symptoms at home. And she was really helpful. She just got it on many levels.

I had been putting a lot on myself about how badly I have been coping recently. Whilst the reasons were not what I wanted to hear, to have someone who knows there stuff tell you it is not you, it is your body and everything you are going through, gave me some acceptance that it is not just me. I'm really sick. And that isn't my fault. So we are pleased and so grateful for this help. Even if it is a hard one to accept.

She left some leaflets on the coffee table. Some of which were hard to read even the title of. She also mentioned the day hospice. I am sure for some who are isolated and alone these are a real life line. But for me, right now, I'm not sure. You see I have tried various cancer support places before and it turns out I don't really fit in there either. Why not? Well one reason is my age. Believe it or not I can find myself in a situation were the staff and other visitors all treat me like some sort of "weird special case" because I have this dreadful disease at such a young age. So I end up feeling like I don't fit in the one place where in theory I should. But I don't think it is just my age. I know of others in my situation who that kind of thing is not for them. That's not to say that this support is wonderful for many. And maybe I will change. But right now - it is not a place I feel I belong.

For me this disease takes over enough. And I long to be free of it. And when I feel well enough (which is not that frequently right now) I want to see those friends and family I trust. Who I know just see Jo and not the cancer.

I believe most of us yearn to belong, wherever we are in life. For me, heartbreakingly, doors have been closed. But that is not to say I don't belong anywhere. There are special people and places and moments where I totally do. Not defined by illness or labels or what I look like or whatever. A level beyond any of those temporary things that seek to destroy my human spirit.

Where I do belong.

She's out

So. After a week at home in grimbles land, I have made it out of the house.

And it was SO nice. Coffee (ahem well sparkling water) with friend at the local Vic this morning, followed by being driven to Marble Hill Park and the very pretty coffee shop where I managed to share both a main and a cake - like real proper food and everything. Look at me everyone.

My friend asked me what kind of things I like to do. I said "things like this." Share life. Share living. Share cake.

Yes there were tears today. But I felt better for letting them out.

I really need to invest in some better blusher though. Seriously I put a lot of that stuff on this morning and apparently I still look really pale and washed out. Need to consult my make up expert.

Take me to the seaside

Last night after much sobbing, I went for a walk. Around the dining room table. Yes the dining room table. It was quite an achievement.

I couldn't quite make it back to the sofa so ended up on the floor near the sofa on the grimbles carpet. Jonny reached out to me to help.

I wailed "you need to take me to the seaside." And again, "the seaside!"

Bless he said he would. Just not last night.

Simple dreams hey. So far we have the field and the seaside. Although sunshine is needed for both.

Fed-up-ville

There are things to blog about but not sure I want to right now. The line between private and blog is a fine one. But one which I am in control of. Maybe there are things I will write about of the last few days when I am feeling like I can gather my thoughts better.

Let's just say I am not feeling well and bloomin fed up with it.

Hence living in fed-up-ville.


Think I need to find something else to blog about in the meantime. It is hard when I have spent days now in this place. I am missing the winter Olympics. It got me through quite a few days. It's all quite crazy though. Our girl Amy Williams got gold in the skeleton bob sleigh. This basically means she lay on her stomach on a tray with some runners on the bottom. The then hurled herself as fast as she could down the bob sleigh run. Seriously. Crazy stuff. Well done her though.

Water biscuit anyone?

Lucky Dip and ickle visits

Summary of past few days:

Thursday: First to enter chemo ward at 8.45 am. Last to leave at about 7pm. Only advantage is I have eyed up my favourite position (in the corner with the shelf) so getting there early means I get a choice of seats. Lucky old me hey? We get straight on with it. 1o hours later I am full of toxic chemicals, steroids, tonnes of fluid, anti sickness and I think I managed half an egg sandwich too.

Friday: Can't remember much. Friday evening we had a visit from Palestine by the boy John Edwards. Well actually I believe the official reason for his visit was it was his father's 70th Birthday celebrations but we will take the credit for Friday night. Apologies that Jonny had you drink so much whisky. Didn't see too many objections though.

I did very well with my Palestinian lucky dip gift bag. Lots of lovely fun little things. One of which is modelled by John Edwards here:

It's the belt we are all looking at it by the way. Not the T-shirt. Not that I am not special.

It was so lovely to have this visit. If a little emotional. "Don't make me cry John," I had to beg. The last time we saw John was in Jerusalem for Christmas. I drank champagne, ate tonnes, and laughed loads every day. Only a few weeks later here I am crashed out on the sofa at home full of "ugh" and not a well girl at all.

Still must be positive. This is to get me back to where I have been before. Surely. Please. Please.

Saturday all a bit of a blur. Today I had a couple of girly visits which was lovely. Am learning that this does perk me up for a bit. It's also about not being on the phone or seeing people too. Oh dear wave of nausia.

But well done United.

Jamie Oliver Italian Restaurant - Kingston

Realise I have been all a bit doom and gloom on here recently. I did do a nice thing today. My sister took me to the new Italian Jamie Oliver Restaurant in Kingston.

We were impressed. Good menu of more traditional Italian food. i.e. there weren't any pizzas on the menu. Anti pasti starters, pasta dishes, and meat and fish mains. I had the mushroom ravioli. Was delicious. And you can see the man rolling and making all the pasta freshly while you eat. Sarah had the pumpkin risotto that she demolished pretty quickly, so we can take that as a sign it was good grub.

On the table next to us were some of Jamie's "team." They were trying every dish to check the quality of the food. They got through a lot of it so I assume they were happy.

No room for puddings and with bread, drinks and two mains in coming in at under £30 was pretty reasonable too. Would definitely go again.

As a complete aside Dame Judi Dench was in there. She really does have amazing skin.

Difficult Lessons - Accepting Help

In life I am naturally happier being the one who is rushing around after other people. What I am not very good at is being on the receiving end of help. I don't say this as a martyr - I just find it hard to let other people do things for me. Since I went to university when I was 18 years old, I have pretty well looked after myself. And for a long time my Jonny too. So, maybe I am just used to being that way.

This leaves me in a tricky situation right now. Because I am not well. And no matter how much I want to be keeping everything together and do everything, my body just isn't up to it at the moment. My achievements of Monday morning, in between two sleeps, were to empty the dishwasher and hang the clothes up to dry. These things are not big tasks. When I am feeling well - they just happen. And on bad chemo days it is more of an achievement to walk up the stairs than anything else.

I really DON'T want to be like this. That may sound obvious but it is so frustrating to not even able to think about what we are going to have for dinner. Let alone struggle to cope with symptoms and side effects of drugs.

I have, however, been offered help. By both the hospital and the community. I took some talking into accepting this, but I guess I am in a place where I know I need help. And so I knew when it was offered it was something I should take. Stubbornness can lead to cutting off your nose to spite your face. And my desire is always to make this bad situation better, not worse.

So. I have my next chemo tomorrow and for the next eight days starting tomorrow, my church will be delivering evening meals to our home. For the first few days these will just be for Jon as my stomach has been so bad. Believe me this wasn't something I accepted just like that. But in reality it is going to be a huge help. I have done this for others in the church when they have not been well, or had babies etc. It's just hard to accept such kindness from the other side.

The second piece of help I have accepted is nursing care at home to help me to cope with the side effects and symptoms. Whilst this is a good thing, again I took some persuasion. How ill do you have to be before this is deemed necessary? I certainly don't want to be ill enough. But maybe I am. Otherwise this wouldn't be offered to me. I found it particularly hard that these nurses are coming from the local hospice. Emotionally hard. I am sure they will be lovely. Just so don't want to be in the place I am.

So the next few days should be better than last time as I accept this help. Just because a lesson is difficult that doesn't mean it is not worth learning or when you do it won't make life better or easier. And I can see the bigger picture here. Someone (who happens to be me) is not well. And there are things than can be done to help. That someone is letting help in.

We just seem to have got to this place mighty quickly. So I've had a steep learning curve. But this is where I am. Even though I don't want to be. I just am. And I am incredibly grateful for the help I receive.

Rubbish Day

We all have bad days from time to time. I had one today. I don't want any sympathy. I have enough of that. This is my blog and am just writing down that I have had a rubbish day.

I knew I was going to be in a funny mood. It is five years today since my surgeon delivered the news to me that I had breast cancer in the Royal Marsden in Sutton. I was just 27 years old at the time. And I felt like my whole world had shattered into pieces. Today I enter the statistics as someone who has "survived" breast cancer for five years. This is not what survival was meant to look like.

I don't feel very well at all at the moment. At all. I spent a good few hours at the hospital this afternoon having various blood tests, injections and my consultation. You can loose hours and hours in that hospital. I am very grateful for the care I receive. It's just hard to sit there for hours when you feel so rubbish anyway. Then I had to wait 45 minutes for a prescription that they didn't have and ended up like some sort of lost soul in Boots at Fulham Broadway trying to buy Gaviscon.

I collapsed when I got home. Fell asleep. Again. But then things got better when my lovely friend brought our tea round for us. And now Jonny is home. More chemo on Thursday. I so know I need it. It's not nice feeling ill like this. Or having rubbish days.

Business Skills

I had my last day of teaching on my course yesterday morning. The subject was business skills. The first section was more revision for myself and the other last student standing. We started as a group of four a few months ago and now we are just two. I knew all about basic business skills from my many days spent qualifying and practicing as a Chartered Accountant. And my other fellow trainee ran her own business for thirty odd years so she knew about business too.

The afternoon proved more interesting. We had to come up with our own business plan. This was obviously more of a theoretical exercise for me. I hadn't told my other trainee about the elephant for all these months. The studio and this course has been a place for me to be free of all that. If you don't tell people then there is no danger of this illness defining you.

Over lunch she started asking me questions about my plans. I gave my usual elusive responses around not being well and just having to see. Not sure, just focusing on the training.... And then I just decided as it was the last day to mention the c word. I didn't go into lots of detail and think she was pretty surprised. I have done really well at the training, even if I do say so myself. It's strange though. I get stuck in this mix of not wanting some people to know about the elephant because I refuse to be defined by it. I am so much more than this wretched disease. And yet I find it a huge liberating to not carry the load of the load of old nellie around with me and to sometimes just tell people.

Anyway it is now over to me to write a dissertation and shadow and run a number of classes over the summer months. Someone is on my side. I have attended every training day and now I can do the rest when I feel well enough. You see that elephant wants to get in there but I have other ideas.

Little things become Big things

So I have done some nice things this week. Not big things. But nice little things. Cups of tea and chats with friends mainly.

I'm finding doing this really tiring though. Not to the extent that I want to stop doing it. But meet a friend for a couple of hours and I am firmly in need of a nap to get me through the next part of the day. People are telling me I look a little pale. I say this is nothing compared to the week before.

I had a friend and her husband visit earlier in the week. He had had one of the drugs I am on as part of a chemotherapy regime a couple of years ago. And similarly it took him a long time in the cycle to recover. Of the other regimes I have had over the years, this one is certainly taking a long time of still feeling tired. With others I would feel awful for a good few days, but then feel pretty OK in between times.

I know I am tired. I have no interest in cooking whatsoever. Just can't face the effort of it. And this is very unlike me. I want to drive everywhere because I am scared I will get somewhere and be too tired to get back. Usually I like to walk everywhere as much as I can. And I am having to manage very carefully I don't have too many activities in a single day. I am well aware if I do too many then I am going to wipe myself out for a couple of days and then I won't be doing any.

I'm loving the winter Olympics though. And the Ugly Betty box set and radio 4 are keeping me good. These things I can't do in the days after my chemo as I can't even think. Depending on my blood count it will be time to go again at the end of next week. But I know I can keep doing it. I just know I can.

My friends Mum sent me a lovely email yesterday. At the end she had attached this poem:

What cancer cannot do
It cannot cripple Love
It cannot shatter Hope
It cannot corrode Faith
It cannot destroy Peace
It cannot suppress Memories
It cannot silence Courage
It cannot invade the Soul
It cannot steal Eternal Life
It cannot conquer the Spirit

After the rain

Yesterday it was like a monsoon had hit Sheen. It did not stop raining ALL day. But today was a different day. The sun was out, the temperature warmer and I managed to take a short walk in Richmond Park this morning. It was muddy but beautiful.

Then I had much fun with my niece who came to visit. I was very popular today. Think it was the sticker books and chocolate buttons and cake that did it. But I will take the credit anyway. And despite the rain she was very insistent that the plants all needed watering in the garden. Bless.

Pancake Day

I have just had lots of laughter and fun over a stack of delicious pancakes at my friends home. Lemon and sugar is the best way to serve a pancake in my book.

Last year I gave up clothes shopping for lent. This year I am giving up nothing at all. Far too hard given the elephant situation. There is a time for discipline and a time for enjoying grace.

And now is a time where treats are very much allowed.

Lovely Lunch

So a week ago all I could eat was toast and ice cubes. I could hardly hold a conversation let alone leave the house. Which made a simple day today SO nice.

My friend Lynds drove down to see me. Her parents took care of her two little girls so she could come, which I was so grateful for. She arrived with homemade soup for the freezer and an enormous homemade cake with chocolate buttons all over it. Her inner domestic goddess that has been hiding out all these years clearly emerged.

We head to Pizza Express for lunch. Nothing fancy. But just SO nice to sit and talk and be out. We talk about loads of stuff. How I am. About how I need to let people help me. Community. Friends.

Then she holds my hand. And asks me to be her little girl's godmother. The tears start rolling now for both of us. But what about... and I may not... and we don't know... She says she knows. She just knows. But would have asked me if there was no elephant and it wasn't going to stop her asking because of it.

We cry a little more. I share my heart. And then say I would love to.

Pizza Express is full of kids and noise because it is half term. The waiters must think we are nuts we all this crying and hand holding. But it was special.

We head back for a cuppa and a big piece of cake and she has to leave to drive 3 hours to get back to her girls.

It's amazing how a simple chicken salad and bottle of mineral water with an old friend can become the biggest luxury. And also how the act of asking an old friend to have a special role in your child's life becomes such an emotionally loaded thing when there is an elephant in the room. But it feels like we are in it together. That we are not going to let the elephant trample and get it's trunk in the way of stuff because of what ifs.

I will give little Sophie the best I can as her godmother for as long as I can. And I guess that is all anyone can do. Elephant or not.

Hello! Magazine

There is a two page spread in this weeks Hello! magazine on the Anna Valentine Fashion Show. For some reason they didn't select the pictures with me in them.

Actually apparently they did originally and it was a three page spread and then they had to pull one of the pages at the last minute.

Never mind hey. It was still a magical night.

Treats

I have a saying when things get bad. I tell myself "well at least the good news is there is currently no limit on treats."

And today I got treats. I arrived home earlier and my lovely friends had left Jon and I a "chemo survival pack." It was a bag with a card in it with just lots of lovely things. Chocolates for Jonny. Moisturiser. Hand Wipes. Special Tea. Socks. And a very pretty bracelet. How spoilt am I? I don't deserve it because this is just the way life is for me. It's not like I actually did anything. BUT that is where my saying kicks in. I don't have to feel guilty because there is no limit on treats.

I also got given a hand made Valentine Heart Biscuit by my friends little baby boy earlier.

And I have just won a fabulous box of chocolates in my friends Valentine's Day competition.

I like treats.

So today I had treats.

Photographs of Camilla, Lucy and Me

I have just been sent these photographs which were taken by the Hello! photographer at the fashion show on Thursday evening when we were talking to HRH. I doubt they will make it into the issue (as I am not really celeb material!) but all very exciting anyway:

My Valentine

The doorbell rung at 9am this morning.

And these were delivered with a lovely card from my Jonny.



I haven't even had a chance to get him a card. And he knows it.

He also knows that I am as completely in love with him today as ever. If not more so. Life may have dealt me some very tough cards, but not when it comes to finding the one.

Happy Valentines Day Jonny. (Even if you do really think it is all a load of commercial rubbish!!)

Still Stretching

I woke this morning and felt ok so decided to go along to my course. I am well aware that to many I maybe should be firmly on the sofa. But believe me - I have done nothing else. I have a very nice sofa but I am SO fed up of being on it. I wanted a change of scene. And I am still Jo. And this course is one of the things I am doing in my life right now.

There is only this weekend and one day next weekend of the course left, and I have come so far with it, it would seem such a shame not to see it through. I really enjoy doing this. Besides, I quite frankly really don't see why I shouldn't continue with it.

I spoke to the teacher yesterday and filled her in on the hideous situation with the elephant right now. I was a little worried about the practical side of things today. I was a little shaky before I left and told Jon I may well be home in half an hour. But once I was there, I was ok. And when we got to the practical session the teacher lead us through a relaxation rather than any deep stretching. And it was just what my body and my spirit needed.

More than one person has commented on my feisty spirit in the past week. Maybe that is what got me in my tracksuit and into the studio today. I don't know what it was. I don't really care. I know it is crazy that for a week I could hardly move and on my Saturday I went to a day learning about health and exercise.

But I also know that despite everything this body is going through, quite a lot of it still works. And for as long as I can I'm going to keep using it. And stretching it too.

The handbag Camilla held when she shook my hand

Oh yes it is in the press. Check out this article:

http://www.dailymail.co.uk/news/article-1250408/Camilla-arrives-charity-fashion-class-handbag.html

What a night (and Meeting HRH)

Wow. What a night. Cannot believe it. Cannot believe the course of the week. For days I am firmly in chemo land, literally unable to move at times, and then last night I was in a different place.

Ah. Where to start.

The Event. The Anna Valentine Fashion Show in aid of Maggies Cancer Centres. Anna Valentine is an amazing designer who famously dressed HRH The Duchess of Cornwall for her wedding to Prince Charles.

The location. The Royal Courts of Justice, London. LOVE places like this. LOVE this about London. They are so old and so magnificent. Incredible building.

Why am I there? My lovely friend Lucy is an old friend of Anna Valentines. She has been on the committee for organising this event for months. I have been invited to attend like lots of her other friends and committed to go ages ago.

Obviously this week has been so hard it had been very doubtful at times whether I would be able to make it. But I did. And yesterday lunchtime Lucy tells me it is good I am coming because I am her plus one as one of the very specially selected people to meet and greet HRH The Duchess of Cornwall (yes Camilla) herself at the evening. What?!! I know. I know.

So we arrive. I feel like a different person in heels and my black dress. I loose a false nail before we even get to the venue but hope no one will notice. The place looks amazing. There is much re event stress going on - the amount of organisation that has gone into this is incredible.

We head to the drinks reception. I have a glass of champagne. The girl who could only manage ice cubes two days earlier is sipping a glass of fizz and has an enormous smile on her face. All the food is prepared my famous chef Tom Aitken. I like the canapes but don't have many as am too scared it may all ooze down my front before I meet HRH.

We are told that at 7.10 to stand in a particular spot and HRH will come and meet us. It is really crazy busy in there so we are moved to a slightly quieter area. The Hello! photographers are told to make sure they get pictures of us talking to Camilla. Loads of people are now looking at us like we are VIPs ourselves because we are clearly next to meet her.

We have practiced our curtsy's. Apparently the official line we are to say is "It is very nice to meet you your Royal Highness." We are both giggling and think we are going to totally mess that entire thing up. As I am stood there about to meet her I say to Lucy "This is so nuts. I haven't even told my neighbours I have cancer, and now I think I am about to tell the wife of the heir to the throne!"

Camilla is brought over to us. We are introduced. We do some attempt at our curtsy and our line. But Camilla is really down to earth and isn't waiting for us to make sure we do it all right. We talk for probably about 5 minutes or so before she is moved on. We talk about Maggies. We talk about Anna Valentine. We say I have not been well all week and how pleased we are I made it. Camilla smiles and looks at the glass of champagne in my hand and tells me how good it is I am having a glass of that. During that time there are official photographers taking photo's of the moment. And then she is moved on.

And then we move on to talk to..... Rupert Everett and Janet Ellis. Rupert Everett has enormous nostrils. Seriously gigantic. Lucy tries all the shots to get him to laugh at her jokes. I think he must have been nervous about his speech. I get chatting to Janet Ellis. She is SO lovely. It is like a happy childhood moment talking to the Blue Peter presenter of my youth. We talk about her kids. We talk about Maggies. We talk about my week. She is so surprised because last night I looked really well. We start talking about hair and wigs. She knows this amazing wig cutter who apparently will restyle my beautiful Parisian real hair wig for me and make it even better. She says to make sure I give her my phone number during the evening. I feel like she is my new friend!

We then head down for the Event itself. Janet's speech is fabulous. It doesn't make me upset at all. I just agree with every word. Then the show starts.

The models all stick their hips forward and slouch back as they walk. The clothes are beautiful. Truly stunning. Wish I had some of them. The fabrics just float and hang in a way that oozes chic and quality and style.

Then we have some more Tom Aitken food and, yes, I have another glass of champagne. It's the real stuff and tastes fantastic. There is an auction for prizes as well as a silent auction for loads of stuff people have donated. The biggest single amount raised I think was £22,000 for a 2 week holiday in the Seychelles. Sadie Frosts boyfriends band play. We have much debate because no one can remember his name. Scott something. I have no photo's as we were not allowed to take cameras to the evening. But am so hoping to be able to get some of the official ones that the Hello! photographer took. I think I should be able to and then will scan some in and post them.

It gets to nearly 10 and my body starts to give in. I start to feel I am struggling a little to sit in the chair. The event officially ends at 10.30 so decide I must go. I exchange smiles with Lulu Guinness. In true Jo style I have lost my coat tag so cause problems at the cloakroom looking for a black size 8 Karen Millen Coat..... but it is found.

I squeeze my lovely friend Lucy unable to say words of what a fairy tale night it has been. Dare I say it, the sweet is sweeter, given the days before. I step out onto the Strand, get straight into a black cab and am home in bed about half an hour.

As my head touches the pillow I smile. And am grateful for this night. The philosophy of Maggies is not to allow the fear of dying to stop the joy of living. And tonight I had joy living.

http://www.maggiescentres.org/maggies/maggiescentres/home/home.html

Different day

I can hardly type. This isn't a chemo side effect. It is false nails. I bought them in boots earlier in an emergency. Now I am struggling to do ANYTHING. Not helpful as:

I am wearing a frock. Yes a frock. And diamonds. Real ones. 24 hours ago I was firmly on "i don't think so" BUT I have turned a corner. I feel like a human being. And this human being is about to meet a VERY famous person.

I am off to the Anna Valentine fashion show in aid of Maggies Cancer Centres. It is at the Royal Courts of Justice. There are going to be tonnes of celebs there (oh yes including me.)

I will write all about it tomorrow I hope. My friend is on the organising committee and told me this afternoon that we are going to meet the famous person.

Thankful the dress and shoes I bought on line fit me. Thankful I was too weak to wash my own hair so booked myself a blow dry today.

Thankful for concealer. And make up.

My friend is borrowing an uber expensive dress and going to look stunning. I have coloured in my bags, and tried to make myself look as pretty as I can today.

Maybe I need to practice my curtsy?

I am laughing so much. I can't cry because of the mascara. I have spent the last week in chemo land horridness. But today is a different day.

I said I would emerge.

Ice cubes and cornflakes

I am confused about what to write on my blog right now. I started writing this blog for me. So that I had a record of all the good things that I do in my life. So that, when the dark days come, I could see what else my life was about. What else I have done. Who I share it with. What makes me laugh and smile and feel good.

It was never intended to be a blog about cancer. Far from it. I've said it a million times. This disease is what has happened to me. It isn't what is me. I never would have chosen any of this. And I didn't want it to be a blog about cancer.

However, having not left the house for a week, my body having just undergone a chemical onslaught on highly toxic chemotherapy drugs, I am a little lost with my theory.

If we stick with the theory - it is about what I do - then the past few days all I have done is be in a very bad place with treatment. And the tiny moments of pleasure that have been snatched are so far from the bigger world.

For example. Yesterday I ate ice cubes. Yes. Ice cubes. Having been able to take in no liquid whatsoever for days, without causing crippling nausea and vomiting, this was a breakthrough moment. And today, my Mum and I both wept with joy that I could sip water.

So far from travel, photography, stretching, (er cakes,) that would usually make me feel lifted. Ice cubes were the thing I was most grateful for in the entire world.

So perspectives change. When I have felt so weak I cannot describe - here we have it - the last week the things I have enjoyed are:

• I think around about Monday I managed to play the game qwirkle with Jonny. (Bit like dominoes)


• Today I put a hot water bottle on my lower back. It felt nice.


• Yesterday my Mum washed my hair. Too weak to even do this myself, it was her idea. It exhausted me, and I went a little funny afterwards with the nausea again, but was worth it


• I ate cornflakes around about Sunday. Long forgotten cereal that is so right. I don't care what Gillian McKeith says.


• I have had a couple of local friends popping in. In truth I didn't really feel like it, and nearly cancelled them all, but once they were here, it did perk me up, however briefly. This morning was lovely - I could talk to them.


• My family have loved me completely - and I have allowed them to. I've let some friends see me not well too - I'm letting people in.

In the middle of all this my day dream has been a sunny day. Sat in an English countryside field. Gentle breeze. No hayfever. No pain. No sickness. Just complete peace. And Jonny and I eat strawberries and drink champagne. And then friends come. And we eat English scones and cake and it tastes so good. And everything is right with the world.

My friend sent me flowers. The bouquet was called Sunny Day. I do believe in signs so let's hope that day is not so far away.

Am I emerging?

I don't know. I am on the computer. And I've just eaten two slices of toast. And I'm not unconcious.

Don't mention my tummy. Don't mention the nausia. Don't mention it. Don't mention food. Especially not good for you food. Don't mention the juicer. urghh. Let's move on. Don't mention liqued.

Just had a friend pop over and managed a shot at a conversation for half an hour or so. Perked me up and ate my toast afterwards. And my feet are lovely and toasty in my cashmere bed socks. Perfect.

So maybe I am emerging. Maybe tomorrow WILL be a better day. Just maybe.

I am so aware of the emotional cascade I am on. This disease goes against the grain of me. I don't want to be the needy one. The one who can't do the most simple things. When the cascade kicks in then no one should know me. No one should care about me. No one should visit because it is kinder for them to not have to deal with this.

This weekend we learnt the sad news that a friends baby has been born with a deforming syndrome. The same day I was dealt my latest blow of scan results. At the end of the moving email that made me cry the baby's father concludes:

"The more time we have spent with her, the more we have come to adore her. She didn't ask for any of this, any more that we did, and she is the one who has to live with it. Ok, she may not win any beauty contests but she is a cute as a button and as happy as a baby you could hope to meet and we'll sure you'll love her as much as we do."

And in that moment I thought. I thought that I was like that baby. All this load I carry of guilt of the impact of this illness, I didn't choose any of it either. I would have chosen so much else. But I can't. But I saw the picture of that little girl, and my heart was moved with love for her. Not because she was deformed, but just because she was a little girl. And maybe that is what people see with me. Just Jo. Nothing amazing. But here, loved by her family and friends. And Jo just wants to love back.

So emerge I must. Just not sure when right now.

Non amazing

• Family member managed to scrape 3 panels of their car driving me home from hospital on Thursday night. Any other time, wouldn't have happened. Dark, stress. Bang.
• Have had Jonny fill the entire food recycling to over full of all the organic vegetable deliveries. Can't write anymore about that. Nice while it lasted. Right now SO wrong.
• My nice smellies in the shower this morning made me feel so awful it was one of the most consuming low points of last few days.

Don't know what else to blog. I'm not in a place to collect my thoughts, and right now not too sure I want to. But have been told to keep blogging....

Blog.

There is nothing amazing about this

Please. Stop telling me I am amazing. I'm not. Believe me.


What is amazing about having this enlarging elephant in my life? What is amazing about being given the only option of taking more treatment, and taking it? Who wouldn't? Who wouldn't at my age want more time with their husband, more time with their family and friends, dare I say - increase their chance of survival?


How I cope? That's not amazing either. That is some experience. More than I would have liked. More than any would choose. But that wasn't my choice either. So that doesn't make me amazing.


All I do is get on with this the best I can. That is all anyone would be able to do right now.


I'm completely unsure what to post on this blog about what is going on and when. How I am actually feeling, physically or emotionally.

What's going on right now? The 02 is packed with people watching Strictly Come Dancing Live - and I should be there. I had tickets. But I am not. I am somewhere else right now.


But still here.

Hairspray removes Paint from clothes

Random post for a few days. But after a google search a few days ago I tried and tested that some hairspray on a jumper that had caught some wet paint. Let it dry a little, stiff brush and off it comes.

A new one on me.

Tube Station Fancy dress Party

I went to a farewell fancy dress party at the weekend. The theme was to go dressed as a tube station. Tough one I thought initially but here are some of the things people came up with:

Little Paddington Bear:

Seven Sisters:

Angel, Paddington Bear and Heathrow:

And I also went as Angel:

`

Other costumes included Oxford Circus, quite a lot of Bakers, a Banker, a very cross David Brent (Brent Cross) and four forks and a hall for Vauxhall. Oh and an England footballer for Wembley.

Gen and I put our culinary baking skills to action and came up with these little cakes:

Much fun and laughter was had by all. Have a great time in Oz Mark.

Desperate Housewifes

Is back for a new series on Channel 4.

No cancer scenes to deal with this time I don't think. New family on the street. They are predictably mysterious. New twists. Various wife swapping. Possible attempted murder.

Worth watching. Although think that Wisteria Lane will be missing Edie this series. The baddies are always the best to watch in these things.