11.24.2018

Let's smash it!

Another Blog post?! It's a miracle! 

For the last month or so I've been picking up bits when I've found a bargain, to make up my annual Christmas goodie bags. If you've missed this previous years, usually at Easter and Christmas I approach companies to donate items and raise money to buy treats for those who are stuck in hospital at Harefield. Patients are going through a lot of difficult times, they can even be there for months or years at a time. The goodie bags are always well received.

This year I have funded them mainly myself until I realised I'd bought around £100 worth of things (there are 32 beds on the wards) so I decided to ask for £110 on JustGiving to repay myself some of the money and buy a few extra bits. In less than 24 hours my total was smashed and we had £200 of donations. Firstly, how incredible are people? Second, it's all the awfulness in the world right now you've inspired me how much goodness is still out there. 

Anyway, I was a little worried as I'm taking the bags to Harefield on Monday as it's the only day I can deliver them and I don't have much energy to go shopping. However I've been thinking and I have a plan which I wanted to explain properly here. 

So, money raised so far will all go to help patients at Harefield, the majority for goodie bags (I'll post about these in more detail next week) and the rest to whatever the current fundraising appeal is. 
I was going to shut the page but I'm keeping it open and if you would like to donate I would be really grateful. 
Any money raised from now on will be split equally between Harefield and The Marsden. 
The Marsden have kept me alive this year. They are a truly amazing cancer hospital and I would love to thank them for what they do. In ICU they have an amazing resource in a balcony with fairy lights and plants. It means seriously ill patients can leave their room and actually feel the air and sunshine on their skin which is HUGE.
I would love to donate some money to buy new plants or to maintain the outside space. They also have a patient fund which improves spaces in the hospital for patients. 

They are really worthwhile causes which I've seen at work first hand and would love to support. 

If you would like to donate I would be really grateful and if you're a friend who would usually buy me a present please donate instead if you'd like to. Let's spread the love around to those who need it this Christmas. 



Thank you So much. I'll keep you updated on our progress! 


If you missed my earlier post this week the link is here https://tor-pastthepointofnoreturn.blogspot.com/2018/11/another-update-for-you.html
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11.21.2018

An explanation for the things I cannot do....

Another update for you.

It's been a weird old time. First things first, I went to Harefield to get these little lungs checked over and they are doing better than any of us could have hoped. Lung function had actually improved a tiny bit and my consultant told me I'm 'indestructible' (he's a tough man to impress)! He was really happy to see me doing well lung wise and I was happy to thank him for the advocating of treatment he did on my behalf. 

Other things haven't been quite so good. To put it in simplest terms I feel really crap most of the time. My aforementioned consultant did say it's to be expected as this year of treatment would floor a healthy person let alone someone with my added problems. That doesn't help me day to day tho. 
This is probably going to be a bit of a blah blog but I thought it might be cathartic to write, and at the moment I need any help I can get. 

It has been a year where I have once again been faced with the stark reality of my own imminent death. This has not only effected me physically with treatment, I have to remind myself I have had 17 weeks of chemo plus many other powerful drugs and two surgeries, one being major and resulting in the removal of half my stomach. However usually, what I do to help get through these days is think of what things I will do after. Couple this with essentially living life in 3 month chunks between scans and it makes you pretty keen to live your life as best you can particularly when it's likely to be shorter and much of it is spent doing treatment or suffering illness. 

I have run at life and booked in things. I'm now completely being pulled under by those things. I have been to see my friend to celebrate her birthday last weekend, I am off to the Ideal Home show on Friday, I am visiting another friend next week for a few days and then going to Copenhagen for 3 days, the trip I missed due to my cancer diagnosis last year. There are days between these adventures but my body just isn't bouncing back.
I want to do Christmassy things, go shopping, wrap presents and I'm really struggling because physically I just can't. I'm having to stop and sit more often, I'm cold all the time, hurting and absolutely exhausted, but with this desire to go out and live the crap out of my favourite time of year. 

My life has basically been a never ending stream of illness, of friends in my position dying all around me, with more curveballs health wise than I could expect, it gives you an insatiable need to live up the times in between. 
I ate some crisps yesterday which somehow cut my sensitive mouth to ribbons and I am also covered in bruises to the extent I look like a Dalmatian there are so many. Today I went to a high street to look in a couple of shops. I had a massive hypo (sugar low) and sat down, the cold hurt my bones so I sat in Costa, had something to sort sugars, came out, felt that familiar gurgling of the stomach and had to call my dad to rush me home because I was desperate to use the loo. Then I slept for two hours this afternoon. And that's how every day seems to go. It's difficult to concentrate, I'm too exhausted to get up and I get nothing done. I'm constantly attending to health needs.
.

I'm so eternally grateful to still be alive, to have working lungs and be cancer free for now but it is that joy to be alive that makes it harder to not do what I long to be able to. I cutback on plans but still it's impossible, or I force myself to do things but suffer for days after and a lot of the joy is lost when you feel awful.

I have so many things I want to attend at this time of year and loads of friends I've had to repeatedly put off seeing during treatment but I just can't manage it. I worry they'll think I don't care or don't like them, that they'll be offended. It's a stretch to even text some days. If you're reading this please please don't think I don't want to see you, you honestly can't imagine how many tears I've shed over it. 

I was told that mentally it may be very tough once treatment is over. I didn't realise how difficult it would be. I'm so overwealmed and upset I can't do everything, or even most days, anything. I rely on my parents for so much and I don't want to. We have no idea if I'll get better than this or this is 'new normal'. It's made me really depressed if I'm being completely honest. Physical always effects mental health.

So that's my update. I'm hoping it will explain a bit why I'm so flakey and how much I want to see people but it's not always possible. Keeping my head above water alone feels like an impossible task right now.
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10.07.2018

For now, I've won!

Hello bloggers! 

Sorry for the delay in writing, exactly a month I just realised! 

Firstly, thank you so much for all your love on my last post about organ donation week. I'm so grateful. I also have my own link to sign up now so I can see how many people sign up as a result of my awareness over time. 
Anyway, thank you.

So I have updates if you missed them elsewhere.... I had a CT Scan, and then the results. I was actually too ill to get to the hospital for my results, honestly just hideous. However the Marsden as usual were incredible and arranged as a one off to talk to me over the phone. My CT scan is currently free from disease. Free from disease! 17 sessions of IV chemo, daily oral chemo, a major operation to remove my tumour and half my stomach, a year to the day that my endoscopies started and this whole nightmare unfolded. But for now I have won. Maybe not forever but for now.



[my last chemo sign although I looked like crap in the photo! And a bell my sister upcycled so I could ring the end of chemo bell. ]

I have finished my chemotherapy now and am waiting to start feeling better. Right now I feel pretty bloody terrible, there's literally a new or different symptom every ten minutes. I'm absolutely exhausted and sleeping quite a lot and I'm using my wheelchair to help eek out very little energy. I have heard that recovery can take months and even years in some cases. Sometimes other complications develop as time goes on. 

It worked out well as we had Center Parcs booked for a weeks holiday the week after my chemo finished and a week before my transplant anniversary. We were able to go and while it was vastly different from our past holidays it was still lovely. I had to use the wheelchair majority of the time, I slept A LOT! And I felt ill most of the time but it was great to go for a short walk or wheel (!) in the most gorgeous settings. I'll post about my experience soon. 

So what now? Do I happily skip off into the sunset waving cancer goodbye? Sadly not. Realistically, it is very likely that with my immunosuppressive drugs the cancer will return somewhere. You can't say you're in remission for 5 years. I also have my transplant complications to consider, infection, and rejection risks. I will be scanned every 3 months to hopefully catch anything early and have signs to look for when I would need to be seen earlier. It's very much like still having an axe hanging precariously over my head. 

I cannot believe how lucky I have been to be under our incredible NHS and not paying for this treatment. I've had the most amazing people caring from me, from top surgeons to nurses, to the lady who offers me tea and biscuits every week. You have all made this so much easier and I will be forever grateful. 

I have lots and lots of ideas for blogs and will try to get them up soon, it all depends on the fatigue etc. 

Thank you all for being there and supporting me. 
If you're going through hell, keep going my lovelies. Xxx
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