Check out this wonderfully bright jumper knitted by my wonderful auntie!
It's not all doom and gloom...
Out of office on, time to sit back and....oh
To think I actually thought Christmas would be 'normal' this year! This C-19 shizzle just keeps on screwing with us, doesn't it?
I think one of the reasons I haven't blogged much recently, is because I feel everything has been said. Nearly 2 years ago I made a post about how Covid and the lockdowns would and were impacting on cancer patients, cancer diagnoses and treatment, and now I feel nothing has changed. In fact, the government finally woke up to the cancer crisis, said they'd do something about it, and now it's been forgotten again. I know I'm not the only one who is tired by how endless this all feels, and I'm one of the lucky ones who's not been too adversely impacted by the pandemic.
Similarly, we were in the exact situation we are in now back in March 2020 and the government seem to be making the exact same mistakes. Sure, we've got the vaccine now, and it's Christmas time so they don't want to 'ruin' Christmas for us, but is that a good enough reason to sacrifice the health of the country? I don't know, I feel there is so much anger and stress and upset out and about right now, and things haven't really changed in the last year or so, that I don't had much to add.
Though, I felt impelled to write a blog as we are in December, we are nearing the end of 2021, we are in the midst of the festive season, and I couldn't let this all pass without writing something!
I could also do with putting an update on this blog, as it has been a while. In the cancer world, silence is either a very good thing or a very bad thing. In this case, it's good! 12 months ago we received the news that cediranib was working and had shrunk most of my lung nodules and stabilised the rest. 12 months on, things are still stable. Well, I had a chest CT scan last week (14th December 2021) so I need to wait on those results before celebrating too much, but every scan I have had this year has shown stability. This is really good news and has meant I've had quite a peaceful year. It does not mean my cancer has gone away, I still have small nodules in my lungs. I'm still on cediranib for life/for as long as it continues to work and I can handle it. But stable cancer is good. I am able to work a full-time job, socialise, exercise, volunteer, travel - essentially live my life how I want to, and that is the biggest privilege.
I have suffered quite a lot with my digestion this year, and have pretty much had to give up alcohol, which is the only part of my life that isn't exactly how I'd choose it. I tend to overthink my food choices as I'm worried about what effect it'll have on my stomach, and have had bad experiences with diarrhoea and nausea - these side effects should not be overlooked, they can be pretty debilitating if not managed! The stomach issues can affect my energy levels and I have had periods where I've not felt as energetic as I usually would. It's something I'm managing and is definitely worth it for the positive impact the meds are having on my disease, but I would be lying if I said there weren't some days I really wish I didn't have to take chemo pills every day... (I have taken some days off, and those days are BLISS).
However, I feel that my worst fears about being on chemo pills for life have not unfolded. I was terrified to start systemic treatment, about it ruining my quality of life.* Quality has always been my priority over quantity. I'd much rather live fewer days, but happily and healthily - fully, than live more days but in pain, suffering or unable to do the things that bring me joy. Of course, there are ways of adapting, and I'm not saying I'd give up easily, but I just really cherish life and don't think there is much point in having 100 miserable days over 50 amazing days, ya know? I am also fully aware that my mindset may change if/when my disease progresses more aggressively, and I will cross that bridge when I come to it. For now, I am so grateful I can live my life how I want to, and that I have been able to look towards the future much more lately. Now, I just wish the world would catch up, that this pandemic would just bloody END so I could actually live my best life, travel around, do more things!! But hey ho, us cancer patients are used to lacking control...
(A very socially-distanced Christmas...)
My sister came home for Christmas from university this Saturday, which I was very much looking forward to. Well, we all know how rampant the virus is at the moment, so we got her to test as soon as she got home. Lo and behold, of COURSE she tested positive!! So this week has been quite stressful, trying to adjust our Christmas plans, emotions up and down, having to isolate her in her bedroom, having just arrived home, trying to not catch it from her, cancelling plans. We managed to put up the tree and decorate it in a socially-distanced, masked, ventilated way. I must say it took out some of the excitement of putting Christmas decs up but it's better than doing it completely alone, I suppose! As of today, though, she is FREE - she has done her 7 days of isolation and has been testing negative on lateral flows for quite a few days now. Me, my mum and my dad have got very lucky and somehow managed to not catch it. Even before my sister arrived, we were pretty worried about catching it as we all have jobs that involve face to face contact - my mum works in a school. We really have got lucky to not catch it, and now can actually look forward to seeing some family over the next couple days. Let's hope we don't dive back into a full on lockdown after Christmas...
I love Christmas, but I know it is a hard time of year for so many people. Working in the job I do now, which involves supporting deaf and disabled people in the community, I've become even more aware that this time of year is not a celebratory time for everyone. Businesses close down, people spend time with family and friends, and many people suddenly plunge into loneliness. Especially this year with so many people needing to isolate or even shield themselves, the festive period is made even more difficult. There is a lot of pressure for Christmas to be the most jolly time of the year, for there to be no arguments, the food to be perfect, presents to be perfect. We're trying to achieve an unobtainable level of perfect.
As a cancer patient, you may be going through treatment over the Christmas period, or waiting on scan results (like me), or maybe you've just received bad news and now have to wait until January for a plan of action. Whatever it is, you are allowed to feel down, it's not humanly possible to feel jolly all the time.
To anybody struggling right now, you don't need to suffer alone. A lot of services do close over Christmas but there are some places you can turn to for help:
Shelter: 0808 800 4444
Shelter's free helpline is open 8am – 8pm on weekdays and 8am – 5pm on weekends, 365 days a year.
You should use this line if: you have nowhere to sleep, or might be homeless soon
you have somewhere to sleep, but nowhere to call home, you are/could be at risk of harm
Samaritans: 116 123
Samaritans are available 24 hours a day, 365 days a year. This number is FREE to call.
You can use this line if:
- You are experiencing mental health issues,
-Having family problems,
- You are isolated or lonely.
Macmillan 0808 808 00 00
The Macmillan support line is open 7 days a week, 8am-8pm, and is open as usual over the festive period. For anyone who needs support around cancer, whether it be emotional or practical.
There is no shame in reaching out for help.
I hope you are able to enjoy at least some parts of this Christmas. I will certainly be eating a lot of great food (thanks, dad :p), and will try to soak up all the time I can with family. And I will be giving my sister ALL OF THE HUGS now that she is covid-free!
Merry Christmas, and thank you for reading.
Until next time,
M x
A very safe Christmas to you all! Live, laugh, lateral flow!
* Speaking of quality of life, my wonderful friend, Danna, who has rhabdomyosarcoma and is living in Minnesota, US, has made a video about compassion and choices (i.e. assisted dying). Danna's cancer is terminal and she has been advocating for medical aid in dying to be legalised in her region. Please watch her video on YouTube to get an insight into her life and views and please 'Like' and share it.
The majority of my readers are based in the UK, but this issue is still being debated in the UK too. Please educate yourself on assisted dying. Maybe I'll write a blog dedicated to the topic soon...