Always in my thoughts, now more than ever…

Yesterday my dear friend Katie started whole brain radiation (Canada Katie – we shall refer to her as Canada Katie, as she is an entirely different person from my long time friend Katie who came to visit from Australia a couple of months ago and we don’t want to give that Katie cancer by way of me not distinguishing between the two).

Sorry, let’s just do that again.

Whole. Brain. Radiation.

Have you ever heard a more terrifying three words?

Though i suppose they are trumped by three more words…

Trying. To. Live.

And at 34, she has a lot more living to do, despite terminal breast cancer doing its best to stop her. Once you get metastatic breast cancer (i.e. spread) you never get rid of it. The intention is to survive as long as possible, but you will never be cured. I know a lot of people living with their metastatic cancer. It is possible.

From this absolutely hectic treatment, she will lose her hair once again, and suffer all the horrible side effects like nausea, fatigue, memory and cognitive issues and months of recovery. This obviously bothers her somewhat.

We had a chat a little while ago when she first found out it had spread upwards, about where the point is that you stop opting for the ridiculously quality-of-life altering treatments like this. It’s not now for her, thank goodness, and hopefully we’re a long way from that point. But I can only imagine what it must feel like to keep going through this. To be facing another round of treatment and knowing what a toll it will have on her body and her life.

Her brain is still fine but the cancer has spread to her cranium. The plan is to ‘radiate the hell’ out of her head (in her words), which will hopefully zap the skull guy, relieve the pain and pressure, then we can go back to managing the cancer in her liver.

Big sigh.

I say ‘we’ because she and I are such a team. I mean obviously this is all on her, unfortunately she is the one struggling through this, and if I could take some of it for her, I would.

Sometimes I feel like a broken record, going on and on to her about how much I love her but oh well! This girl has helped me through some hard times and celebrated with me through the good.

My dear (Canada) Katie, I just want to say a few things to you.

You have changed my life.
You have changed the way I think.
You have given me so much courage.
You have helped me know what to say at difficult times.
You don’t know how often I think WWKD (or should I say WWCKD).
I am so proud of you.
My life is so enriched by you being in it.
I am always here for you.
You are a testament to how people should live their lives.
There is a lot that people can learn from you.

To everyone else out there, she could do with all your thoughts right now so if you don’t mind shooting them all over to Canada to hover all around her while she goes through this radiation treatment over the next week, it would be much appreciated. I’m glad Clarence’s brother is over there looking after her too.

So while you’re getting ready for work or starting your weekend and have a thought that at least it’s Friday and you’ve got two days of freedom ahead of you, or that you’re exhausted from a hard work week… Just spare a thought for Canada Katie. And for that matter for anyone suffering, for whom a weekend is not an escape from much at all right now, or who would give anything for their biggest problem to be that their boss yelled at them or their colleague was being a dickhead.

That’s not to say that every day problems are not legitimate problems, if I was ranting to her about an every day issue in my life, she wouldn’t for a second not want to hear about it because it’s not as dire as her problems. She is happy to hear my good news even if her news is bad, etc. We can compartmentalise these things. We still want to hear about you even if we’re going through a bit worse at the moment. (Though while I’ll absolutely sympathise about how much your finger must hurt after shutting it in a door, please don’t tell me that your nail falling off is the worst thing that you could think of, and how will you possibly survive if it doesn’t grow back looking normal… Even if it is the finger your engagement ring goes on… I’m sure you’ll find a way.)

So please spare a thought for Canada Katie. Love you girl, I’m here for you all the way.

A moment for a thought for Amy and anyone else with a terminal diagnosis…

I haven’t really had to deal with death much, aside from elderly grandparents. A pseudo friend died of Leukaemia when I was 17. Another friend from school died a few years after. That’s about it.

Since I’ve been diagnosed with cancer I’ve managed to get into a huge community on Twitter of other people who are going through the same or similar things. Well, similar in the sense that they’re also dealing with or have dealt with cancer. There is a marvellous group of incredible people who I connect with almost on a daily basis. They are so supportive and understanding and have become people I would describe as friends.

One of my favourites is Amy Mattingly, and unfortunately today is her memorial service.

Even in her last couple of weeks she was still checking in with me to see how I was doing. She was interested in knowing details of my recovery and how the swelling was progressing. In the week she found out her SIRT couldn’t go ahead (an experimental treatment that wasn’t funded by the NHS, so she crowd funded and we all pitched in to help), she was telling me how much motivation I had been giving her that week (me giving this amazing human motivation? What a compliment). She was happy for me getting to the pub, she was happy that I had no treatment left, she said I deserved a big holiday. All this, only weeks before she left us.

I like to think she’s on a big holiday now. But I do know the truth of it is that she’s dead. Gone forever. Cancer really kills. And she’s known it was coming for some time. Her final tweet was a great, but true and humbling:

‘Advanced cancer is like SkiFree. No matter which route you take down the mountain, the big robot guy eats you in the end.’

I know a few people with terminal cancer. There is no hope for them of beating their cancer. No matter how positive they are, they will die too, and it could happen at any time. Cancer doesn’t care if you’re positive or ‘strong’ or how hard you ‘fight’. I don’t know how you come to terms with knowing your demise is imminent. But I know you do, somehow. And these girls do SO gallantly that they give me strength to get through anything I have to.

It also gets you thinking about the question of whether it’s better to know about your death in advance or for it to happen suddenly? Either way, it shouldn’t happen in your 30s!

To all the people I know who despite their good attitude, positivity and staunch willingness to live as long as possible, will in fact the die of this horrible fate, If I had one wish in the whole world it would be to save you and restore you all to your cancer free state.

As I can’t quite make this happen, I vow to love and appreciate you while you’re here, to ask you how you’re going, to check in, to always care. And once the inevitable time comes that you are gone, I will remember you forever, my thoughts and memories of you will stay with me and I will live fully in your honour. Please know that connecting with you has changed my life.

To Amy, I will take your spirit and outlook and colour with me everywhere I go. You will be a beacon of light, always in me. You had a profound effect on me, you mean a lot. I’ve been thinking a lot about the meaning of life and I have come up with this. It is our ability to choose how we react to bad situations. And you’ve done so gallantly. This is our humanity. We can have everything taken away from us except our ability to choose how to react to it. And it is our legacy. The things we did in our lives that affected people, the people we knew, the people we loved. And you have reached so many people and you will be with us forever. It doesn’t make it easier, but I know you have had an impact on more people than most people do even if they make it to 100. Cancer sucks more than anything but we’ll keep trying to get to the root of it and kill it all. I can only thank you for being so incredible, so important. For being Amy.

I’m sick but I’m pretty, yeah!

Thank you all for the kind words on my previous post. You’re all amazing.

As promised, for anyone who hasn’t seen it yet and is interested (I think a lot of you will have seen it by now ), here is the link to our little Christmas Day jam:

https://www.youtube.com/watch?v=CXH_7Nkvmnw&feature=youtu.be

We had a lot of fun, and in fact a fantastic Christmas day.

Love this song now, it has a whole new meaning, the lyrics are great.

Unfortunately… No going home today.

Most importantly, I can’t thank you all enough for your finger crossing, crossing of various limbs, thoughts, hopes, well wishes.

Unfortunately cancer/chemo wins this round and I can’t get home for our planned Christmas lunch /day of cheer tomorrow.

I was feeling a bit down about it. But we’ll go to the pub for lunch instead, I’m getting ma to bring in my Christmas dress, and hopefully I can go home tomorrow eve.

I’ll take mum and dad to the Christmas markets on Sunday too so that will be nice.

Chemo isn’t being held up on my account next week but due to the public holidays I don’t start again until Wednesday. So I will get an extra day with my parents before they leave, which is pretty great. I’ll be stuck in over the following weekend, definitely Saturday, hopefully not NYE, but hey… It’s not like I can really go out partying anyway! So I guess no great loss.

So… It’s not what I was hoping for, but it will be nice.

And we always make the most of what we’ve got!!!

And really, I’ve got a lot.

I’ll try to check back in over the weekend but in case I don’t, Merry Christmas everyone. You are all amazing and I can’t thank you enough for your love and support. You make me so happy! You give me life! Give all your loved ones a hug. A big hug.

I’ll leave you with a photo of one of the Christmas Trees in the Cotton Rooms:

The roller coaster ride that puts me in the ward… then puts me back in the Cotton Rooms the next day… But now we need home tomorrow please!!!

So…

This is going to be a bit of a roller coaster. post.

This morning kind of went from bad to worse…

My hopes to get out tomorrow (Friday) in time for our Christmas lunch on Saturday were slowly to rapidly slipping away from me.

And my hopes to get out of the ward and back into the Cotton Rooms today appeared to have gone entirely. I was less worried about that, I just want to get out tomorrow! But they got my parents to go over to the Cotton Rooms (thanks parents, you are amazing), check me out and bring all my things over to the hospital.

So I met with my Oncologist this morning, well he came to visit me in the ward. And basically he thought they’d be keeping me over the weekend unless I did some super human, never-before-seen type Methotrexate clearing. And he said it’s possible (likely) that this is what I’m looking at for my final 6 Methotrexate treatments. Hospitals and weeks that drag out longer. Ugh more hospitals.

As a result, he also said we would be putting off next week’s chemo by a few days. Which means goodbye to all free weekends for the foreseeable future (until the schedule needs to be put off again).

I’m not going to lie, this was all getting me down. The thought of my last 10 weeks of chemo probably now being pushed out, maybe even for months. It’s hard to manage. BUT you know what? Last week I ran into one of my fellow Ambicare Crew (he’s in my next ‘people met so far’ post so I won’t give away too much right now), and he was having a bad week. Sure I was having a bad couple of weeks too. But he had received some bad news, and I can only guess, but perhaps he found out that his chemo isn’t working. Or there may be some other big complication that means his prognosis is not so good. It seemed somewhat serious.

In terms of that, I have had only good news the whole way. My chemo has worked, my scans have been good, I’m finally meeting with the surgeon in a couple of weeks.

Sure, it might take a bit longer, and yeah it will be frustrating and no it’s not what I want. But at least we’re still going in the right direction, even if it’s at more of a crawl. All that will sort itself out.

BUT I NEED TO GET HOME TOMORROW!

Anyway, then my blood results came back, and they were… good. Back to what you would expect for a Thursday! So but an hour after my parents packed everything up and walked it over to me, we were all packing it back up and walking it back to the Cotton Rooms.

So that is good!

I went back into Ambicare, and they think that result is borderline for clearing by Friday afternoon and getting to go home. BUT BORDERLINE IS BETTER THAN THE ‘NO CHANCE’ I HAD THIS MORNING!!!

Not sure what’s going to happen with next week, I was meant to go into clinic tomorrow morning, so I’ll just go and do that and see what happens.

I’ll still get a disrupted sleep tonight, with alarms and bathroom stops, but nothing like last night where people kept coming to shout at me about unimportant things that I’d already told them every half hour to hour.

Phew.

Once again, please cross all your fingers! It appears to have worked for getting me out of hospital by Tuesday last time (even though I had to miss my gig), this time we need to get out of here Friday afternoon. Please please just let me get out tomorrow afternoon. Whatever happens after this week will happen but please just give me this weekend, even if none others.

A post of gratitude.

You know what has been amazing? My friends and family, and really anyone who I have come in contact with.
The support I have received through this all is overwhelming.

I find it difficult to have things done for me, to accept help. I’ve always been staunchly independent. But the offers to help from all different directions, should I need it, have been so lovely, and have meant so much.

And of course not just offers, anyone who has done anything for me when I have needed it, I am eternally grateful.

On top of that, the packages and presents and cards and flowers I have received have been amazing. Seriously.

To anyone who has sent or given me anything, in general or for my birthday, to anyone who has offered any help, or any support, I wish I could find words to thank you all, and I wish I could list you all by name, but we would be here forever. You all know who you are, and I would be lost without you all.

Also to anyone who has given a blog post a comment, or a Facebook or Instagram post a comment or a like… To all the lovely words you have saved for me – Every one of those means so much.

Even to people I don’t know who have reached out with a message or followed the blog, this is special too.

You never want to be in this situation, but I find myself feeling so lucky on a daily basis for all of you wonderful people.

My parents are currently here too, visiting from Australia for a month, and we have been having so much fun now that I am no longer dying in hospital. Even if it involves sitting around for transfusions or playing Scrabble in the Cotton Rooms. It’s been amazing, and I am so grateful to them for being here.

I am surrounded by love and support from so many people, and I can’t thank you all enough for every little thing. And big thing of course! You are helping me get through this, each and every one of you!

So thank you. Eternally. I’ll never forget how amazing you have all been through my hardest struggles.

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Some of the people I have met so far – I am presuming this is only the first instalment of such a post.

I think it goes without saying that all of these people are my friends. Everyone I meet obviously is.

The girl in her mid to late 20s who just had everything cancer and chemo thrown at her and came to ask me about losing my hair and how quickly it happened and what she should do. I told her she would look amazing and to enjoy it. I explained that the head shaving party with your nearest and dearest is fun and liberating and whatever she did, to make sure she had fun and owned it, regardless. She left smiling. I haven’t seen her again since. But I know she’ll be fine. Her attitude was great.

The lady who was having chemo and then stem cells put in a couple of days later. Her chemo went for 30mins on the day we were both in Ambicare, and she had to chain-eat ice lollies which she hated, so she complained and I kept telling her how jealous I was. We became friends after that. I was excited to see her the next day when the fire alarm went off. I liked her. For getting her stem cells in two days later she had to drink loads of water and she came and found me in the Cotton Rooms at breakfast and complained that she didn’t want to drink any more water. But she might not be able to get the stem cells if she didn’t. so I made her promise she would go and drink a whole lot more before she went over. I didn’t get to see her again but I hope she won. Since then I have seen many people have to chain-eat ice lollies in the same way and none of them like it. I did hear one person once had about 12 in one go though so obviously some people don’t mind it.

The lady who must have been about to start chemo because she was about to have her PICC line put in (I later found she was actually re-starting chemo). She had some time to kill before the appointment so she was popping out to grab a coffee and asked if I wanted anything. I said thanks, but I would probably pop out on my own later. I saw her again later, me with coffee in hand, and held it up to her asking if she had enjoyed hers. She said she had, and came and asked me advice for keeping my bald head warm. It is always fun to chat about these things with people and I am always happy to give some advice where I can.

The man I met in the Cotton Cove, the common room at the Cotton Rooms. He was maybe in his 50s, and he was so lovely and a lot of fun. I am glad to have met him and his son. Very good people. It turns out he has myeloma (I think that’s what it was called) – one of those scary blood and bone ones. It’s in his blood and spine. Turns out he’d had it for about a year before anyone knew. He had a sore back and apparently it was due to having multiple spinal fractures, which were pushing down on the same part of his spine. Wow. How do you go about life not knowing you have multiple spinal fractures! He will never be cured, but he will be in remission for any amount of time, maybe many years. But then he will probably need treatment again. His treatment is a lot shorter than mine at least. Of course I am never happy due to someone else’s misfortunes in the slightest, but it’s often quite easy to think how good I’ve got it when I have these people around me who have quite some misfortune. With the exception of my extensive chemo (not many people beat me on that), the majority of people are doing the cancer thing a lot rougher than me. Power to you all. I’m here for you and with you.

The guy who I met in the kitchen/dining room with his mum. She was helping him make some food. He was worrying about the next week when he would be on his own. I said I would be around to help him. I saw him again the next week and he said he had been hoping to see me. We chatted and laughed. It turns out he’d had a really bad motorbike accident and was in for 3 weeks straight having intensive physio. Not everyone in the Cotton Rooms is part of the cancer crew. He was lovely. This is his third week so I hope I see him one more time.