Wrapping Up

It's getting harder for me to stay comfortable at home. I want to stay at home as long as it is practical for me to do so, but that time is limited.

My meds have been upped as much as my team will allow from home, and I'm using oxygen a lot now too.

I have my stick and my chair but I don't go out anymore. I don't get dressed. I get out of bed and get onto my super comfy sofa and stay there until bedtime.

I have my wonderful husband here to look after me, which he does to the highest degree. I have lovely view out of the window, I hear birds singing and when the weather is right we open the doors and I feel the breeze. 

It's become hard for me to have visitors, physically and emotionally, so I've cut down on that (but not stopped it entirely - I do still want visitors, it's just harder now).

Every day is a little bit scary, because I'm a little bit scared of going into hospital and what that means for me. And every day now I wonder if today will be that day. 

I mentioned in a previous blog how I've done so many things for the last time already. Well, the list keeps growing at an alarming rate, there are so many things to be taken away. Have I gone outside for the last time? Will I ever stand up while brushing my teeth again. I'm sure I'll never wash unassisted again.

It almost sounds boring but it's not. I'm desperate for more time. There is so much more I want to do. Big things and small things. And I know that the chances are they won't get done. And I also know it doesn't really matter in the grand scheme of things. I'm blogging today because I'm scared. Scared that this might be my last chance. 

One of the other things I'm never going to complete to my satisfaction is to say Thank You enough to everyone who's touched me over the last 18 months. No, over my lifetime. I've been so incredibly privileged to know some of the most amazing people that could possibly exist, and to be treated like a friend by those people is an honor I can hardly fathom. It's truly made my life a joy. I'm still devastated I don't have more time with you all, but for the time I have had I am truly grateful. Thank you.

Here is a part of copy and paste from a blog I prepared a while ago, I didn't publish it as it seems so self indulgent, but part of it is inspired by my ever-consciousness that people don't know what to do or say at these times. I don't intend to have a funeral service, and Dave and I do not want flowers or gifts, so knowing this stuff below may be helpful in its stead. It was written when I had much more energy so it might sound a little 'energetic'. But I was, once. I'd also like to add that while Dave is one of the most independent and practical people I know, he will be going through a very tough time and will surely appreciate your love and support going forwards.

OK, here is this thing I wrote a little while ago, ways you can honor my memory really. 

Practical Things

• Dave and I are super practical and have most bases here covered, and we value practical gestures greatly. My income and Dave's have plummeted as a result of my diagnosis, and at the same time we have many new cancer related costs to incur. There are a couple of different ways you can do a little something financially for me.
• Support our fundraising page. We've made it predominately about our surrogacy costs. Cancer was not a choice. Having children is. Thanks to cancer to stick to that choice has become ridiculously expensive (which having kids already is!). If you don't wish to support our surrogacy but do wish to support our cancer treatment costs, you can still use the fundraiser - and just let us know it's specifically for cancer treatment - we'll have no trouble honoring that!
• Donate some money to a charity (See below for more details).

Look After Yourself

• Your body is your most valuable possession. Actually, it is your only true possession. And it has to last you a lifetime. And it's an absolutely wonderful thing. And so many of us spend too much time complaining about this incredible thing we have and feeling dissatisfied. Be grateful. And look after your body like it's the most important thing you own.
• Next time you feel dissatisfied with your body, count how many working eyes, ears, legs and arms and organs you have.
• Embrace getting old. We all seem to have a terrible relationship with death. Which is crazy because it's guaranteed to all of us. So many of us bitterly resent getting old when it is a privilege denied to many. Getting old is a beautiful achievement. Embrace it, admire it and be grateful for it.
• Remember I love you. Your friends and family love you. Give this wonderful fact the respect it deserves, don't just dismiss it, and it will give your mind and self esteem a boost.
• Listen to your favorite music. Nice and loud. Frequently.
• Go for a walk, leave the car at home. Walking has had a fantastic impact on my life so I hope it can for you too.

Kindness

• Here is a magic trick. You don't have to do something for me to do something for me. Every time you do a good deed it is a gift to me.
• Pay it forwards
• Give people the benefit of the doubt
• Be kind to yourself
• Donate to a charity

Support a Charity

• If you want to support a charity that directly affects me, I prefer ones that fund cancer RESEARCH. Some cancer charities only fund SUPPORT actions, and while this is important, research for a cure is the thing that saves lives (which will help Support Organisations too, indirectly). My two favorites are the GI Cancer Institute and Bowel Cancer Australia.
• But any charity is good. I have others close to my close to my heart and there so many important causes out there. Non cancer causes I love include Cystic Fibrosis and environmental protection. 
• Give Blood if you can. I've never given blood my entire life and I regret it. At first I was to scared, and by the time I'd plucked up the courage I was no longer eligible.

Sustainable Things

• Many of you know that am I passionate about protecting the environment and indeed all occupants of our beautiful planet, including ourselves. Any or every environmentally sustainable act you do warms my heart.
• Say no to disposable plastic. If just once this year you remember your reusable shopping bags or say no to the plastic lid on your coffee or the straw in your drink that will make my day. 
• Compost! It's a fantastic way to reduce your impact on landfill while getting in touch with nature.
• Buy sustainably. If you must buy new, make sure you are buying has not been made in a sweatshop.
• Ask me! I have heaps of tips and tricks on how to make any corner of your life more environmentally sound. I'll stop writing now, I could do pages and pages.

Sensible Things

• I'm super sensible. Its boring but I can strongly recommend doing the following BEFORE you need to. Once you need to it is either much harder or entirely too late.
• Write your will.
• Consolidate your super.
• Make sure you have GOOD income protection and life insurance.
• Plan your funeral.
• Trust me, you'll feel good when these things are sorted.

Shout about it

• Send me a message if you do something good. Or better yet post it on Facebook! Some people think it's not cool to share good deeds like that in case it somehow devalues the act, but I think its inspirational!

I know I can trust you all to follow my wishes to various degrees that suit you, but I'll also encourage you not to wait. My beliefs mean I don't think I'll get to actually see what you get up to after I'm gone. So if you have something to say to me, or something to ask me, now is your chance. Just be patient with me as I am slower than I was and busy with messages.

Love to you all.

Round 29 - You Can't Protect People

Round 29 of chemo has come and gone with no major dramas. Here is me on the way home. I'm wrapped up because I'm back on the chemo that gives me a numb tingling reaction to cold temperatures. You can't see much from the photo but I'm wearing a dress I've had for about 10 years or so. I bought it new but at a massive discount, and I remember when I got it home realising what a cheaply made garment it was, and thinking what a rip-off it would have been at full price. Still, I paid very little for me and it's done me well over the years. It doesn't have pockets but I found I can tuck my chemo bottle in the top over the belt detail quite easily.

I've learnt an awful lot of things since my diagnosis. Or is that a lot of awful things? No, I've learnt a lot of things, and some of them have been bad, but some of them have been good too. Some of them are facts, and some of them are life lessons.

One thing that I only figured out on my trip to the UK in September last year was this. You can't protect people. You can try. But it's not really protecting them. I thought I was protecting people. Then I wondered if I thought I was protecting myself. But actually I was just delaying peoples opportunity to process the truth. Learning this didn't really change my behavior though.

Another thing that only dawned on me recently was that people translate a positive attitude into a positive prognosis. I didn't mean to mislead people. But I may have done so inadvertently.

Since Round 29 I've had a CT scan too. And I've had the results. And I've had a little time to process it. I need more. But that is the thing, isn't it. We all want more time.

Chemo is no longer working. I am out of options. My tumors are very aggressive. It's a hard thing to share. Because I don't like focusing on bad news or potentially upsetting people. But if this news upsets you, well, then the sooner you hear it the better, not sharing it will not protect you from the inevitable.

As I write this I'm still pretty comfortable, and I will write again very soon to let you know what you can do and say at this time, but  I will just quickly say I don't need food or flowers or gifts. If you still really want to spend some money on me you can donate some money to our fundraising page. We still have a lot of appointments to attend and expenses to pay. Our Cancer Fund

Round 28 - Late

Round 29 is due tomorrow and I still haven't blogged about round 28.

It's a lot of rounds of chemo I've blogged about now, and a lot for you to read about. They all have their own little variations, they are all their own little adventures, and they are all tough. But here we are.

I'm finding it a little hard to blog at the moment for various reasons. One is that the treatment is tough on me and sitting up at my computer and typing and making sense are all just too hard to do in a timely fashion. Then by the time I am feeling better, I want to get on with other things. I've reflected on enough rounds of chemo now, I want to move on and I do (sort of) have a lot to do.

How do I have sort of a lot to do? I don't have much to do compared to a normal busy person. I'm not a normal person anymore. I need a stick to walk short distances and a wheelchair for longer distances. I can't pick things off the floor myself. I can't get out of certain chairs myself. I can't lift heavy things. Even a full bottle of milk is heavy to me now. Everything I do takes ages. Everywhere I go is a procedure. What drugs do I need to take with me, how am I going to move around, what is the access like, how long will I manage for? This is me on a normal day. On bad days I can't even get out of bed.

But the sun rises every day. Every day I get to see my wonderful husband, and I often hear from people I love. If I do get out of bed I see the mountain and trees and birds and clouds out of my window. And that is on a bad day.

'A Bad Day'

At this point I was going to leave talking about Round 28 but it turns out my love of record keeping means I just have to put something down now. If I don't it will be gone forever.

Round 28 almost didn't happen as it turns out my white blood cell is a little high. I thought this sounded like a good thing but it can be a sign that I have an infection. If my body is already fighting an infection, giving it some chemotherapy to contend with is a bit much.

After a second blood test and a thorough consult, I was allowed to go ahead with the chemo.

Round 28 day was a very wet day after a long spell of beautiful sunshine. Our appointment was at 9am which I found a little early but we actually made it on time.

I don't fit into many of my clothes at the moment. Although my arms and legs are stick thin my stomach is very swollen and a lot of things I own are now just too tight. I'm not sure if I've worn this great little stripy green dress to chemo before. I got it while Op shopping with a friend many years ago. It has no pockets but it does have lots of room and good memories.

Today is my best day. My day before chemo. It might be my new blog day too in future.

Round 27 (Not really round 27)

I'm still so far behind with my usual meticulous reporting!

I'm not sure if I will ever catch up or not, but I figure in the mean time I'd better just keep up!

So this Friday was what I consider my 27th Chemo treatment. I've had two in hospital as an in-patient, which I'm yet to blog about.

This was my first one as a day visit then, for a couple of treatments, and I was a little nervous about because of that, but also because it's a change in treatment again. Not a new treatment, but a return to my original regime. 

I feel that it went quite well at the time, but I was in much better health at the time too, so I've been wondering if I will tolerate it so well this time.

Well, so far it's been quite a similar experience. Today is Sunday and I am feeling pretty strong fatigue, but not the worst - here I am blogging after all.

Before chemo, I was booked in for another fluid drain. First I have an ultrasound so they can pick the safest spot to insert the needle. What they want is a nice big pocket of fluid, and I do seem to have favorite spot. 

I find the ultrasounds quite fascinating and a little bit sad - talk about the wrong reasons! However of course I maintain plenty of gratitude for them too.

Next is the drain. This has to be performed by a doctor. I've lost count of how many drains I've had now (I'm sure I could work it out easily enough in 5 mins, but not now). Each one is a slightly different experiance, and this one was very different for a number of reasons.

 All this equipment is laid out ready for my drain!

Firstly, I almost felt this drain might be a little soon. The timing is very delicate. They need a certain amount to make it safe to do so. Left too long and I will get very sick. This is what has been hospitalising me - drains not being done in time. And it can turn very fast from not being needed to being urgent.

However, the team were satisfied that we had a good entry point so we decided to go ahead. If I waited I could well have ended up in A&E at the weekend, and then possibly checked in to hospital again.

The next milestone with this drain is that I declined to take a sedative. This is huge for me. I remember for my second or third drain there was talk of me not having a sedative and I was terrified and did everything in my power to make sure I got some.

But they do rather knock me out for the whole day, and I had a busy day ahead of me, and this is more like my 6th or 7th drain, I'm getting rather used to them.

The doctor did a fantastic job and with plenty of local and with Dave there holding my hand I coped really well.

But here's the other unusual thing about this particular drain.... They couldn't get any fluid out. We tried all the tricks, and there is no denying there was fluid there, but it would not drain out. There are a number of reasons why this would happen, and we can't be sure what exactly it was. So we had to give up.

So I'm sort of stuck for now. It could be worse. I'm bloated and uncomfortable but managing that will pain medication. I never feel hungry but I can still eat. I'm on the waiting list to have another go next week, but I don't feel the need to check into A&E at present. It's been a long time since I've managed to go this long without a drain and that is awesome. It would have been nice to have a bit of relief but I'm coping. I'm still at home and being well looked after.

Because I'd had the attempted drain in the morning, I was booked for a bed instead of a chair for the day, so that is where I got my chemo too. 

This is not a band t-shirt - I'm loosing track of which one's I've worn and I'm running out. This is a pretty significant souvenir t-shirt though. In 2008, on Dave and I's first wedding anniversary, me and my rowing crew won a race! This was on Tresco in a Cornish Pilot Gig, in the Stern First Race. Bit of a novelty race, sponsored by (delicious) Cornish brewery Doom Bar. Hence t-shirts for the winners - that's not usually a thing. The race ended on island of Bryher with live music and general pub festivities. It was an absolutely cracking night all round.

So this chemo see's a return to the Bottle, which I've just had removed. It see's a return to some old side effects too, including the reaction to cold. I'd forgotten a number of my old tricks to manage this but I'm quickly getting back into them. It's a little different managing it in summer to winter, but I've got this.

On the way home Dave wheeled me back to the car. I've been using the wheelchair since I checked out of hospital before New Year and I must say it's been incredibly useful, and definitely due it's own blog page soon.

Catching Up

I have a lot of catching up to do. Today is Sunday. I got out of hospital on Friday. I was there for nearly two weeks.

It's going to take a few blogs to get all my usual detail in, so today's blog will be a bit different.

I will start by explaining what put me in the Royal. It's called ascites. Fluid builds up in my abdomen because of the tumors. It needs draining regularly. It can change very suddenly from something that is uncomfortable to something that is intolerable and makes me unable to keep any food down, and from there it doesn't take long for my condition to slide quite fast.

So here is where I'm going to take this blog in a bit of a different direction to my usual style, and start with me trying to relay to you all a wonderful analogy I read once about grief. This is only my poor interpretation so I hope I can do it justice.

It was an article that described grief like finding yourself clinging to your shipwreck, that which you've lost, with massive waves crashing down upon you and almost drowning you. That is the grief, and the waves are so powerful and terrible that you think you will die. But you don't. Even though they keep coming, you hold on and survive somehow. Gradually the waves slow down. Gradually they become smaller. There will always be waves. Sometimes you will see them coming, sometimes you won't. Some will be small and some will still be massive. But you survive them all. They become part of your life.

I just loved this analogy so much. I found it so beautiful. But for me it was very easy to twist into an analogy about what it has been like to loose so much condition so fast.

At first when I was sick I was hit by a massive wave, yes it knocked me under the water but I recovered well and was nicely afloat again before the next wave hit. Well the waves keep coming, but in the case of my health, they keep coming harder and faster, each time I get knocked down it's a little harder, and each time it takes me a little longer to recover, and then suddenly you're not getting any time to recover at all before you're in danger again. Its frightening. You wonder how long it can go on, how much you can take, how serious are things going to get.

The last couple of weeks have been confronting and frightening. I've had the best possible care, but no assurances. 

I've felt gratitude every day, and it's a powerful magic. It fills my heart in a way I can't explain or put into words. I'm very good at feeling gratitude, but very inadequate at expressing it. Any one of you who has so much as sent a good thought my way has contributed to it, but I don't think I can ever let you really know what it means to me. 

Moving forward, as much I definitely needed to be there at the time, and I'm very grateful I was able to be, I really want to stay out of hospital as much as possible. I'm taking things very easy while I recover gently at home, and being very well cared for of course. I feel like myself and my medical team may have been caught a little off guard by this sudden 'storm', but hopefully with some more careful management we can keep me out of hospital.

I'm booked for another fluid drain on Wednesday and Chemo on Friday. The sicker you get, the harder it becomes to do the right things to stay well. Eat well, exercise, even take medication. It's another challenge, but I'm up to it.

New Normal - Treatment 25

For a little while in my mind now, I've been trying to adjust to a new normal. A normal where I get out of hospital and can't go for long bush walks. A normal where I need an afternoon nap every day. Where I can't do more than one thing in a day. I take a huge amount of medicine to manage symptoms and side effects. I can't do many things for myself. I can't drive. I get three or four 'good days' in a fortnight. A good day still means no more than being able to walk for 30 mins, and still needing that nap. 

I have been on Chemo for over a year now. Fourteen months. So it's no wonder there is a certain 'normality' to it now. I've had a couple of small breaks in that time. The last one, the longest I've had, did not do my health much good. 

But I was talking about it over lunch with a friend on Thursday and she encouraged me to fight again. And I'm glad. Its not a normal I want. And I went home and had a really good walk - a 30 min walk which included a steep hill. A walk I haven't done since before my holiday. And I booked into the gym for Friday.

So today I walked to town. This has been a staple of my chemo routine. Yes it's part of the new normal but it's a positive part. Then I went to the gym. I haven't been to the gym for three months. That is a long break. I was a bit nervous, but I went through a super light version of all my exercises and it felt great to have done it. Getting back to better things. Normal things. Real normal. Pre-cancer normal. OK, so it's Pinc Pilates I do now, but at least it's still going to the gym. And it's always good to see my colleagues too.

Warming up on the bike

Then Dave and I grabbed a quick take-away from Heartfood before rushing to the hospital for chemo. It was so busy in the ward when we arrived. It took a little while for us to get settled in and I was worried about what time we'd be leaving - late!

Today I wore my Bad Manners T-shirt from a very recent show they did at the Rebublic Bar for their 40th Anniversary tour. It was a real treat to see the legendary Buster Bloodvessel in action. 

I got a surprise half way through my treatment. A treat, you could say. A doctor came and told me that they are not giving me any Irinotecan today as the side effects were so strong last time. And I complained! I want my treatment! I've said it before - as much as chemo is not a great thing to be facing - I'm very lucky to have it not only as an option (rather than being told that nothing can be done for me) but it is available to me. Not everyone who gets cancer gets the same opportunities as me. But I can have it again next time. I need to stay well during this process too. Once I have got my head around this I will be more grateful for the rest. Which I will make as un-restful as I can manage of course! I can look forward to feeling well for more days this fortnight and possibly getting more exercise and fresh air.

The air was pretty fresh today! I didn't manage a walk home but as we left hospital much sooner than expected and feeling much brighter than expected we did have a little walk around town. My fitbit tells me I've done over 10,000 steps today. I'm pretty pleased with that.

I took this photo in Liverpool street. I like the two different cloud colours.

I started driving again this week too, for the first time in about two months. Just a short distances to start. I've had the medical 'OK' for a while now. It was totally fine, and felt good to be doing it. I'd never dream of driving if I didn't feel 100% up to it. As much as it was great to drive though, it's better to walk. 

Treatment 24

Last week, technically, I did not receive chemo. Cetuximab may be delivered in hospital, on the oncology ward, and the nurses may 'suit up' to administer medicine through my port, and it will upset my cancer cells and give me some fun side effects in the process. But as I think I've mentioned before, chemotherapy is a word that only applies to 'cytotoxic' drugs. Not all drugs delivered in the same style are cytotoxic, so not chemo.

My appointment was booked for 2pm. If I'd arrived at 2pm I would have still been in hospital at 7pm. Luckily someone noticed this and asked me to come in 'before 12pm' today instead. Of course, I said. No problem.

We got there at about 11.59pm.

So very early by my usual standards.

Another lovely spring day. More awesome street art. 

The date was 11th Nov. Remembrance day. Always a day touched with sadness. But we still find joy in each day too, as I would hope the fallen would want. Today while listening to the radio we also learnt that musical poet legend Lenard Coen has died. More sadness, but more celebration too. 

Irinoteken means an injection. It means we were there until just after 5pm.

I wore my Laneway Sydney 2016 T shirt. I've actually worn it to chemo before but I was featuring the skirt I was wearing at the time, not the T-shirt. Laneway in Sydney is great, we've been a few times, and make a little holiday out of it.

When I have chemo (by which I mean, treatment) I also get given antihistamine to help against reactions, anti-nausea to help against nausea and steroids to help with fatigue but also other side effects. And when I have treatment in the afternoon instead of the morning I'm then up for a good chunk of the night thanks to the steroids. Tired but totally unable to sleep. I have many good strategies (and drugs) in place for difficulty sleeping, which of course hits me from time to time for various reasons, but on a late treatment day nothing seems to cut it. So I've been going with it. It's gone 1am and I have sent an number of long emails. Facebook is quite dull at this time of night. I still make more comments and longer ones. And then I generally don't get back to my computer for a number of days as I recover from treatment and fatigue. It's OK though. Perhaps even an opportunity to get some bits done. Not that I fully trust myself or what I write during these strange steroid buzzes.