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.

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.

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.

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.

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.

Oasis

The past couple of weeks I have started going to a new group. It is called Oasis and is a place for women in the church community who are around in the week, for whatever reason, to get together. It is an hour of tea, biscuits, study and sharing.



Due to my sleep problems of late, I was feeling somewhat weary this morning, but was really glad I went. We had good conversation, could share on things on our hearts and did feel like an "oasis."



I have recently finished reading Malcom Gladwells book "Outliers," which I would really recommend as a fascinating and entertaining read. It examines reasons why certain communities are healthier, certain people are successful in business, some a great a sport and even why certain groups of people are good at maths. In his opening chapter, he explores why a certain town in the States has such a low incidence of heart disease. Despite the fact they do little exercise, eat a high fat diet and essentially do many of the things that medically would suggest the number of heart attacks would be much higher. He concludes that the closeness of the community, the connections that people have in that town, due to their inherited culture and history is unique. And that this community lifestyle has served to protect against many of the stress and emotional issues that most Western society experiences.



I think there is something different from "people you know" and "knowing people." I know a lot of people, but I only really know a few of them and vice versa. When you become familiar with someones weekly routine, how they like their tea to be made, what makes them happy and what makes them sad - then I think you get to a place where you actually know them. And it is a real shame that so many are so busy these days, that finding that closeness and familiarity of community often somehow seems to have get lost.



I know some people are private people, and don't really want to be "known." I used to think I was the same. But finding myself in the situation I am in, and actually even if I didn't have the elephant to contend with, then I think it is important to have people around who know you, because, well, quite frankly, we are designed to interact with each other. And I for one think it is better for your well being, as Mr Gladwell found in his research too.