Don't Get Sick

I know we have an excellent healthcare system in this country (which I cannot fault) and we do have an excellent social care system but this is what is going to happen to me:
in about a month's time I am going to run out of sick pay from work. As they have already been paying me Statutory Sick Pay this will end soon too as it is paid by your company in your pay cheque (they claim it back from the Government) and it is only paid for 28 weeks. SSP is paid at £75.40 a week. After that I will qualify for Incapacity Benefit which should be paid to me at the same rate although there is a lower rate which is only £63.75 a week. Once I am on Incapacity Benefit I cannot go back to work, even if I want to because I will still not be able to work a whole week and it would compromise my benefits so I am in The Trap.
This means that I will be earning effectively £3,000 a year. If you add on Ashley's wages (which I think we calculated wrong when I went to the Citizens Advice Bureau) at £13,000 a year then we are exactly on the limit of £16,000 which means we are not eligible for any Housing Benefit or Council Tax Benefit. In fact at the moment if Ash stays at the hospital as a porter we would be better off as we WOULD get benefits because he is being paid pretty much minimum wage. BUT if he gets another job at Sainsbury's then he would be earning too much even though it would still be a low wage job. The system stinks.

It's not our basic living that is a problem but my debt. I have an outstanding loan which has evolved from my student loan from the first time I went to uni and I have two credit cards (no longer in use but need paying off). One of the cards I realised has payment protection insurance so I am sorting that out but the other card and the loan have to be paid somehow. The advice from Citizens Advice is to write and tell them that you can only pay a certain amount per month i.e. £10 a month and ask them to freeze the interest and charges. This is also in hand but I am scared of creditors breaking down my door! Of all the things I am most worried about, money is the main thing. Surgery? No hair? Chemo? Pah! Money money money.

When I trained to be a nurse I left a well paying job in the private sector (financial company) to go back to university for three years. I knew I would not have a lot of money despite the NHS paying me to study. The thing is I could work then. I had the ability to work evenings and weekends, which I did. I worked in the pub for over two years which I loved. It was hard work and sometimes I was working 7 days a week but at least if I needed money I could go out and earn it. Now I am forced in to not working and I hate it. I've pretty much worked since I was 16 when I got my first Saturday job in Forbouys in Downham. (Correction: Jo and I did the News Shopper - free local paper - paper round for a good couple of years when we were about 14-15! I still have nightmares of lugging those papers around!).

Anyway, the situation is what it is and all we can do is make the best of it. MANY people have been EXTREMELY generous and given us monetary donations for which we are VERY grateful. Mostly the money is used on everyday things like groceries but we have managed to have the odd night out at the cinema with a meal out at the noodle house. That's a BIG night out for me now.

It is Tuesday morning and I have had the most fantastic Bank Holiday Weekend! It really started on Thursday when Nicky came over and we had a lovely afternoon together, then Ashley's friend Chris came over and we all had a luverrrly roast pork dinner.
Friday Ashley had a stressful end to the week but we chilled out in the evening and I made healthy fish and chips (baked cod with green beans, herbs and pine nuts and sweet potato chips), we had a glass of wine and watched 'Capote' (good film, bit slow at first but draws you right in and Philip Seymour Hoffman is an incredible actor).
Saturday I went to Down House with my friend Gosia who I haven't seen for ages and we had cream tea at the coffee shop in Downe village. Then Chris was over again and we had a barbecue on the back terrace of the flat (anyone who's been there knows that it is really just the roof of the shop below!).
Sunday we knew we weren't doing anything so it was Spring Clean The Flat day which was immensely satisfying. Then lunch on the terrace, 'Dirty Rotten Scoundrels' on the TV (classic film) and a relaxed evening and early to bed.
Bank Holiday Monday we woke up early as it was officially the first day that Ashley was on the lease for the flat meaning that for both of us it was the first time we had officially lived with a partner. We had Kir Royale (champagne and cassis) and Eggs Benedict for breakfast and waited (in our very clean flat) for Ashley's dad Andy and his wife Lynn to pick us up as we were going out for the day.
They ended up being late so we had a Bucks Fizz as well!

We spent the day at Hever Castle, childhood home of Anne Boleyn. It is a beautiful Tudor house/castle with extensive grounds and the weather was PERFECT. A warm. hazy summer's day. As it was May Day there were some events happening and we saw King Henry VIII himself! There were several people in costume doing things like archery.
It was a great day, Ash and I provided the picnic (including a bottle of wine but no corkscrew!) and just driving through the Kent countryside was... well those that know what it is like know that at this time of the year, on a sunny day England is just beautiful and Kent is one of the most beautiful places. The wildflowers were all out in the banks and hedgerows, the bluebells are carpeting the woods and the trees are all just coming into leaf and are the most amazing shade of green. I felt really lucky to be able to enjoy it and it reminded me how sad it is to live in a town or a city and miss the seasons. There is nothing like getting out into the countryside to really remind yourself what time of year it is!

I remembered to cover my head all day as last week I managed to sunburn myself a but whilst at the allotment and I have been peeling ever since (not attractive!). I think my arms have got a bit tanned though yay!

It is another beautiful day today, not a cloud in the sky and the forecast for this week is 22-24 degrees all week - huzzah! I'm off to take our new tree down to the allotment at lunch time (£5 apple tree from Wilkinsons - bargain) and then I have an appointment at the Pain Clinic this afternoon about my back. Which is handy as I have woken up today with backache (I think I slept funny).

I dreamed I had hair last night which was very weird! I think that is because I was wishing I had hair yesterday as whenever I see myself in the mirror I look like I have a big moon face. It needs some accessories!

Also I must mention that I went to see the Hypnotherapist last Friday who was great. I think I will write about that later as this has become a VERY long blog and my hands are getting tired from typing.

Have a great day everyone and enjoy the sunshine!

Lots of love

Liz
xxx

Home on the range (again!)

Hi guys,

So I went in to hospital last Friday 18th April with a raised temperature, another infection. It is such a horrible sinking feeling when you know you feel a little bit 'not right' and you don't want to do your temperature because you KNOW what it is going to say. It wasn't too bad in hospital. I was in the room next door to the one I was in last time. I felt rough for a couple of days until they started giving me Paracetamol (a real wonder drug) and my temperature went down and I started feeling much better. By that point the antibiotics had kicked in again.

The infection was in the Hickman line again which meant that it had to come out. That happened on Thursday. It wasn't too bad. There's no pain as such just some tugging and a lot of lying there not doing anything.

I'm home now having been discharged on Friday (thank you Dr Sawicka for discharging me a day earlier than expected!). The staff on the Chartwell ward were fantastic YET AGAIN. Especially my nurse Ricardo who tried so hard to stick a cannula in my hand and just managed to bruise me - it looks as though I haven't washed my hand for a while!

Ashley and I had a celebratory curry Friday night and watched DVDs (Flight of the Conchords - LOVE IT!). Saturday we went to the allotment and I think I caught the sun on my head. We've planted loads of things now but not a lot is coming up except spring onions which are just poking through. The weather is starting to improve now so hopefully we'll start to see some more changes.

My brother came over Saturday night to finish our mammoth Star Wars watching session. We had planned to watch episodes I, II and III and the Clone Wars cartoons but every time we watched a film I was ill! We finally watched Revenge of the Sith last night and it was brilliant apart from the very cheesy 'Noooooooooooooo' from a clunky newly born Darth Vader. Hmmmm.

I feel pretty good now although I'm going to be careful not to do too much. There's lots of financial things to sort out so I'm going to the Citizens Advice Bureau on Monday to see if they can give me some advice. I've sort of got a break now from treatment as I am on antibiotics for another week then a week off with nothing to make sure I'm OK then the Hickman line will go back in (well a new one anyway!) and then chemo will recommence.

Particular thanks in this blog to my sister Helen and to Lloyd who both sent me gifts that arrived on the same day (awesome day!) and to Katie for the book - it reminds me of our Uni days!

Will keep you all updated as and when anything happens

I'm off to see my grandparents and aunts and uncles that I haven't seen for ages in Hastings

Lots of love to everyone

Liz
xxx

Back In Hospital

Hi guys,

I'm currently back in the hospital with another infection in my Hickman line. They are going to remove it and put another one in. I will fill you in on all the details when I have the time, at the moment they have let me out for an hour. My parents have brought me home and are probably napping downstairs as they have jetlag having just got back from the states.
Love to all
Liz
xxx
KT Thanks - I'll look out for it!

Days Out

This week is a busy week for me as without really realising it, I have managed to book up almost every day this week with social activities! It started on Sunday when my little sister Helen asked whether I would accompany her and two of her colleagues on a couple of pre-visits. She is a primary school teacher so they have to do Risk Assessment visits to all the things they want to do before they take the children there.
Sunday = Horniman Museum. If you have never been there (and stop sniggering about the name!), it is a small museum in South London. It is free to go in, open all week (I think) and was set up by John Horniman back in the olden days. He was a tea plantation owner I think and he collected ALOT of stuff from his travels around the world. He was a collector in the great Victorian sense of the world. The museum itself is an impressive example of Arts & Crafts architecture and the display cabinets are all the original wood and glass ones. www.horniman.ac.uk
I was a bit tired walking around and it was raining outside which always makes it harder to get around for some reason. It's a great place though and I can't wait to take Ashley there, he'll love it.
Monday = London Zoo. This was with my sister too. I nearly didn't go because I was walking down to my other sister's house to feed the cats and I was feeling really stiff and was shuffling along like an old lady. The reason for feeling a bit stiff in the old joints is because of the Neulasta injection (the one that saves my white cells). The main side effect is bone pain. In the Cancer Vixen book she had the injection when her white cells were already low and she experienced really severe pain. I think because I am having it as a precautionary measure it is not so bad but my white cells are at the lowest they've been yet (about 2.8 - it's OK it's not a problem until they are under 1). Since the last lot of chemo I have had pain in my jaw and neck and everywhere that bone is near to skin (admittedly not THAT many places on me!). It's like when you are REALLY REALLY tired and you touch your neck and it aches. It doesn't hurt constantly just when touched. Which makes things like sitting and lying quite uncomfortable. And kissing was nearly out altogether!!!!! How awful!!!!!

I decided to go to the Zoo because it was a sunny day and I didn't really want to spend the whole day at home doing nothing. I was still a bit worried about money because although my sister said she's pay for me I had to buy a travelcard to get up to London and that in itself is £7. That's a lot of money to me now.

Got to the Zoo - it seemed like it took forever. I guess because it's a complicated journey, train to Charing X, tube to Camden Town then a 15 minute walk. It was pretty good at the Zoo but SOOO much walking! It rained on an off during the day which was a bit annoying as you were hot one minute, cold the next - great British springtime weather!
My favourite bit was the temporary butterfly exhibit thing. It is a great big inflatable tunnel that you go in and all the butterflies are flying around you. One even landed on me. There was a lovely lady zookeeper who told us all about the butterflies and moths and Helen and I didn't want to leave.

This picture is deceiving because you can't tell the size of the butterfly but it was about the width of my hand.

The exhibits in the Zoo that are open and the animals are within reach are amazing, I was about a foot away from a sloth with no barrier in between! I'd highly recommend it but BE WARNED - there are NO elephants any more :( Helen bought me a little toy elephant instead :)

Tuesday = Lunch with Lindsay in Bromley. An friend from school, we've now known each other for 20 years! She bought me a lovely new headscarf which is all bright colours and bold patterns.


Wednesday = (today) Cinema with (another) Lindsay and dinner. We love a bargain so it's half price cinema tickets and half price dinner courtesy of Lindsay and the amazing deals she manages to find! Thanks hon.

Thursday = Lunch with Sally at the House of Commons. I've never been up there before so I can be a bit touristy at the same time!

Phew!

I think next week I'll have to go back to work because I need the money :(

Thank you for all your continued messages!

Lots of love

Liz
xxx

Pace of Life

The thing about not working is that your pace of life slows down dramatically. The thing about not working AND being sick is that your world becomes so small. I literally live in between my flat and the hospital (and the supermarket) which are the only places I seem to go these days.

Not working and having money would be fabulous; lunches, days out, I would take driving lessons and courses in drawing and painting.

Not working when you don't have money is like being in prison. You can't go out and DO anything. And walking around the park gets boring very quickly. I'd love to get down to the gym and do some yoga or gentle exercise classes but that's too expensive. I'd love to spend the time I have trying to become more healthy, juicing and eating properly etc. The tragedy of society these days is that if you have no money you CANNOT be healthy. Did you know you can feed three people a large dinner of lasagne and garlic bread for £3.14? Supermarket value food is disgusting, it tastes horrible and is full of salt, fat and sugar. Vegetables on the other hand are EXPENSIVE! What is going on in the world????

Thank goodness for our Abel & Cole delivery every week. My wonderful sister Helen and her group from church wanted to do something for us and rather than give us money they have set up a delivery from Abel & Cole (organic vegetable boxes) who deliver once a week on a Monday. I think they will run it for the rest of the year and it is about £15 a week so it's not cheap. BUT IT"S BRILLIANT!!! We get 3 types of fruit, 6 types of vegetables and potatoes. We've had some great stuff too - Kohl Rabi (looks like an alien), Fennel, Aubergine, Carrots, Onions, Leeks, Beetroot etc and Oranges, Kiwis, Bananas and the most delicious Pears. We both love pears but when you buy them in the supermarket they are always too unripe and then they seem to turn overripe too quickly so I never buy them.
Anyway, free veg is great because we have it it means we have to eat it so at least some healthy eating is happening! THANK YOU TO EVERYONE WHO HAS CONTRIBUTED - WE LOVE IT!!!!!

It is a really spring-y day today. April showers + sunshine and big fluffy clouds. I am feeling physically and emotionally much better today. I might even dig out my yoga DVDs that I know are around and try out some poses!

Lots of love to all, especially all the people who have left me messages in the last 24 hours!

Liz
xxx

Grumpy

Hmm, I was a bit grumpy yesterday wasn't I? It's probably because I didn't sleep too well the night before. It's a strange feeling when your body is tired but your head just keeps going. ALL NIGHT!

I've been thinking about how I want to get this blog out there. I have an Analytics thing with Google that tells me how many people have been on here and where they are i.e. what city/county. It's odd looking at the cities because I'm sure I don't know people in some of them but who knows where you guys log on to the internet! The world map is pretty cool though, my blog is being read in Great Britain, Ireland, France, South Africa, United States and Australia. Cool!
BUT.. I want more! Please tell people about it, have links to it, whatever - I really want to get this out to as many people as possible. Don't ask me why, I am just going to make it my mission.

The other thing is - don't be afraid to ask questions. You can contact me by
1. Email: liz_ford_1999@yahoo.co.uk
2. Facebook: www.facebook.com/profile.php?id=512538596
3. This website.

If you want to ask a really big or personal question then please do so - these things have to be asked and if you want to do it anonymously then please email me. I am not afraid to answer these things. If I can help anyone else out there lessen their fear of breast cancer then that is what I want to do. I was trying to tell myself this afternoon that I had breast cancer to shock myself into believing it but it still wasn't working!

It was a strange day because I was in on my own most of the time and didn't really speak to anyone. Ashley went to see his nan after work and it wasn't until he got home that I realised how much I had missed him and how low I had been feeling all day. I had a good old cry about the usual things that I get upset about now:
Why did this have to happen to me?
I just want to be normal again
Will I ever know what it is like to have energy again?
How much longer do we have to go through this?
Why do we have to do this AND be poor?
etc etc
I felt MUCH better afterwards, even though there aren't really any answers to those questions. :)

Lots of love to all of you
Liz
xxx

Chemo sucks

Not feeling so good today. I feel really tired like I am totally drained of energy. I'm not really in pain although my jaw aches slightly and I can't find a comfortable position anywhere. I feel tired but don't want to sleep and I hate napping during the day anyway as it messes me up and I get a fuzzy head!

I have managed to get down to Becky's to feed the cats today, Sainsbury's to get some groceries in and the man has come to fix our toilet which is brilliant! It was leaking when it flushed (from the clean water pipe) and making our bathroom a wetroom.

Ugh! I just wish I was better. It's days like this when I feel as though I will always be like this and I can't remember what it is like to have energy. When I walk around I feel like an old lady, I just shuffle along. It's weird having people look at you when you go out. I know what they're thinking - she's got cancer. But I am not going to try and pretend everything is OK and that I feel normal or can do normal things because I'm NOT NORMAL!!

I'm going to go back to playing games on the Playstation or maybe listening to some music. I am drinking gallons of orange squash today as I have that horrible metallic taste in my mouth.

I'm still pretty annoyed about our financial situation, especially when I remember that my friend who just had a baby is better off than me as she has full maternity pay for, I don't know, but a hell of a lot longer than me. Plus she gets benefits which I don't get until all my sick pay has been used up.

Okay, enough moaning now.

Love

Liz
xxx

Halfway there!

Hello everyone,

Just a quick one (don't I always say that?), to say that I had my last dose of Epirubicin today and will start the CMF in two weeks. That will be 4 doses, two per four weeks - I'll explain it all nearer the time.
Anyway, I feel better today than I have for any of the other chemo sessions. Gemma came with me today, without children! It was nice for her to have a day off from them and lovely for us to spend some together although we just did the things we normally do which is watch TV, read gossip mags and drink copious amounts of tea!
Had to show her my orange wee of course! Felt OK all day then flaked a bit in the evening and just felt tired.
Wednesday - feel great. Have taken all my pills like a good girl so I'm sure that helps but generally I feel better today than I have for any other chemo sessions.

On Sunday - SNOW!!!! It was great, Ash and I got up early and went out to Downe through the fields. I have never hiked in the snow before and it was sooo much fun. We played a game whereby we had to knock the snow off the trees onto each other. Sounds stupid.. and it was but at least it was fun (until the snow went down my neck!). Anyway, it was brilliant to be out and we had breakfast in the cake shop at Downe and then got the bus back as we were soaked and getting cold. It was weird because the snow had all but gone by the evening. The whole experience served to distract me from the fact that half my family and some friends of ours were jetting off to Florida for two weeks on a holiday that I should have been on. We had planned it for two years and I was gutted that I couldn't go. There are pros to this of course, I get to stay at home with Ash, I don't think he could have coped with me being away for two weeks and I am not spending horrendous amounts of money. On the other hand, it is the biggest thing that I have had to sacrifice because of the cancer and I WAS upset about it. I went down to Becky's to feed the cats (a constant reminder that I am not on holiday and they are) and had a good old cry.

Not much is happening apart from that. I have been offered all sorts of things, days out and such like. An anonymous donor (anonymous to you but not to me) gave me a cheque for £100 which was amazing! I don't even know this person THAT much and I was truly touched.

I think I am feeling more positive now that the weather is getting warmer and I don't mind going out so much. The snow was brilliant as I love snow but I HATE grey overcast weather. It depresses me.

Oh, one more thing. I read a book recently called Cancer Vixen (which Becky & David got me for my birthday). It is a book that I knew of when I was a student and it is a graphic novel about a woman's struggle with breast cancer. She is a cartoonist in New York. I wanted to buy it when I was a student and distinctly remember being in Waterstones in Oxford Street thinking that I couldn't really justify the price as a) I didn't want to work in Oncology and b) I didn't have cancer!
I finally worked up the courage to read it and I was a little disappointed. I mean, don't get me wrong, I'm sure that she had a terrible time being told that she had cancer but it transpired that she a) only had a lumpectomy (not a mastectomy - therefore keeping her boob) and her tumour was only 13mm (mine were 21mm and 31mm) b) she only had CMF chemo and didn't even lose her hair! c) the whole thing was over in 8 months.

So many people aren't that lucky and I just felt like she was making a big deal of something when she should have been bloody grateful that it wasn't worse. Blimey, I thank the powers that be every day that I only had a Grade I cancer (when it was more likely to have been a II or III, given my age), that I didn't have to have a double mastectomy, that I actually feel OK on a day to day basis and the chemo hasn't completely knocked me out.

The only thing in the book was that as she was diagnosed at 43 and had to be on Tamoxifen for 5 years she couldn't then have children. I hope that I am able to although I am still young enough to have options in that department as I could have IVF etc afterwards if necessary.

All in all I am feeling very positive. As always the spectre of not having an money is hanging over my head although I have bitten the bullet and spoken to my parents about paying off my loan for me so that I can pay them back when I am working. So far although I am getting paid roughly £200 off my paycheck (half a month at full pay and half a month at half pay) I am really losing £600 a month as I am not doing any overtime. I don't even want to think about radiation therapy when I will not be able to work at all for 5 weeks and more surgery when I will not be able to work for large chunks of time. I don't want to work at the moment but I think I will have to throughout the rest of the chemo. :(

The system sucks. I would happily agree to work for the NHS for the next couple of years if they give me all my sick leave at once. It just bugs me because before this I never took 1 day sick. Oh well, there's no point being stressed about it. All I can do is get through it as best I can. If that means sacrificing certain things then that's what will have to happen.
I must add that lots of people have been very supportive, especially Ash's dad and his wife who have offered to buy our food shopping etc. It's practical help like that (from people who aren't even MY family) that is the most touching of all. Thank you.

See you all soon

Lizxxxxx

Mini blog

I hope you've all noticed that I am getting a liiiittle better at blogging more often - more than one in a week - WOW!

Today I went to have blood cultures done which means blood taken from the Hickman line so that they can try and grow bugs in the Pathology Lab. It has been decided that as the cultures will take about 72 hours to produce results, the chemo will be postponed until Tuesday of next week. This is good for me as I was planning to do some work for a friend of mine over the weekend and now I will feel OK to do that. Also, it means that at least one weekend this month I will feel OK and not grotty.

There are a couple of things I wanted to blog about but I forgot:
One is that I spoke to a lovely and very encouraging lady on the phone yesterday from Alliance & Leicester re: financial stuff and I gave her my blog address so if you are reading Angeline - I hope you enjoy it! (It was one of those phone calls to a call centre where you end up having a chat with the person, I do it all the time when I call my bank (First Direct - they really are lovely people too!)).

The second thing is that I have a friend (hello Sally!) who works at the House of Commons and she sent me the most amazing message - she said she had shown her boss my blog about how I wasn't entitled to any sick pay (well, not much) and that he had asked how I was getting on and that he was trying to change the system but it took time. Intrigued, I read on. It turns out her boss is only the Secretary of State for Health (The Rt Hon Alan Johnson MP)!!!!!!!!!!!!!!!!!!!! So for the record - congratulations on your (relatively) new post and thank you for trying to make the system better.... and can I have more sick leave please?? ;)

I haven't blogged much about how I have been feeling recently - there's so much else to write that I forget about that sometimes. Mostly I have been OK. I was upset at the prospect of going into hospital and having an infection during chemo but my immune system is holding up pretty well at the moment. I'm in no more danger than a normal person.
I'm starting to feel like I'm missing out now. I've had to cancel a couple of social events (sorry Nicky, Darren, James, Lindsay and Hazeley) and I really miss being carefree and being able to go out and have nothing more to worry about than whether or not I'll have a hangover the next day.
I'm not really worried about hangovers as I am pretty much totally off alcohol. I feel too headachy and sicky to drink even a glass of wine with dinner or an early evening gin & tonic (shocking, I know).
The one thing that has been surprising is that I get really out of breath easily now. I asked Dr Harries (oncology) about it last week. He said that it's perfectly normal and that I will lose all my cardiovascular fitness as I am not doing anything. Now, I'm not fit by anyone's standards but I have stamina and I can hike and climb up mountains! Now it wears me out to walk from the bus stop to the hospital. Dr H said yoga was the best thing to do as it is gentle but strengthens your core muscles.
I would love to go swimming (can't do that as potential for infection in the Hickman line is HUGE - just think of little kids and all the pee that is in a public swimming baths... ugh!), I wouldn't mind even going to the gym and just walking gently on a treadmill or using a cross-trainer but that's out as it's far too expensive. When the weather's better I can walk around the park etc but it's been too rainy and cold recently (OK that's just my excuse!). I have a couple of yoga DVDs so I'll probably try those, the problem is, of course, that I still have slightly restricted movement in my right arm.
Speaking of which, I was supposed to do these exercises for like, two years but I haven't done them at all. The movement is pretty good so I reckon it's OK. I think the exercises are for people who get scared of using their arm again and then don't try to use it. It was difficult at first because I couldn't reach properly but I am getting better at carrying shopping again and I can do housework (boo!) so it can't be that bad.

Right, this was supposed to be a short blog but I am rambling now.

Love to everyone - keep reading!

Liz
xxx