Category: Friends and Family

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

On By Jen EveIn Friends and Family, People5 Comments

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!

On By Jen EveIn Friends and Family6 Comments

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.

On By Jen EveIn Friends and Family, treatment10 Comments

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!!!

On By Jen EveIn Friends and Family, In the ward, treatment7 Comments

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.

On By Jen EveIn Friends and Family2 Comments

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.

On By Jen EveIn Friends and Family4 Comments

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.

…Heroes!

On By Jen EveIn Friends and Family14 Comments

I’ve been seeing things about ‘carers’ for people with cancer. Like… paid carers are a thing sure, but also partners, parents, probably children in some cases, maybe friends… Still makes me think more of terminal people who are slowly dying and need constant care. Probably mostly what this term is meant to mean. Though to be fair, most people in Ambulatory Care have at least one or even two people with them at all times. I don’t, but I don’t feel like I need someone there with me constantly!

Anyway, then I came across them described as ‘hidden carers’. I don’t think any of this applies to me as much as some people, but Macmillan describes a carer as (and this is a bit abridged on my part):

‘Someone who provides unpaid support to a family member or friend who could not manage without this help. Not everyone identifies with the term carer. You may think of yourself as a partner, family member or friend who is just doing their bit to help. Caring can mean many things including helping with everyday chores, being a good listener, helping with personal care. The person who spends the most time looking after someone with cancer is usually referred to as their main carer.’

Charlie definitely does more than his normal share of washing up dishes these days when I’m not feeling very strong, he does more cooking than usual (though I think he’s just happy to have me out of the kitchen, no longer able telling him what he should do and in what specific way… Control freak? Oh ya).

Our life has definitely needed to turn into nights spent on the couch (binge watching First Dates – cringe but whatever) instead of being out every night, and me whining at him to come home and entertain me because I’m bored. Though we do as much as we can and still get out and do things!

But on top of that, he’s there if I need him to be, even taking a day off work if I have a tricky appointment or something I need him there for. He uproots his life for 3 out of every 5 weeks to live in a hotel with me and live off oven meals and takeaways. Never a complaint from him. He puts up with a lot, but I don’t think he necessarily sees it that way.

He runs out to get things for me from the shop when I’m connected to all my bags of chemo and have something I desperately want (Apple juice! Chocolate milk! Grapes! Potato salad!), and really just does the little things that are difficult for me to do like running downstairs to grab the takeaway (I don’t run anywhere very fast when I have to strap all my chemo bags on to me first!).

Not to mention he likes me bald and hasn’t been deterred by the tubes or anything. Not even by those couple of times he injected me because I couldn’t do it, or when he shaves my head for me every Saturday morning. Also he remains a calming influence when I get bothered by things, like that time my backpack alarm was going off at 10pm at night and I was a bit scared…

I still don’t think the word ‘carer’ is quite right because I don’t really necessarily need him to ‘care’ for me, and I don’t think he thinks he’s ‘caring’ for me, I’m still pretty self sufficient, but he definitely deserves a shout out. A huge one. Or 20. For everything extra he’s taken on, and all the things he’s done to help out. He’s amazing.

Thanks love, you’re my hero.

There, now that’s a more fitting word.