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?