As you can tell, this blog is all about matters of the heart…
My Parents raised me to believe there are two types of people in this world: Those who eat to live, and those who live to eat. My family has always firmly fitted into the latter category with our Decembers full of Christmas food planning and with us regularly looking for new things to try.
I have to admit that I am completely obsessed with food and eating. There’s always something out there to try or imagine eating, and anyone who has spend more than bout ten minutes will say it’s my favourite topic to discuss. Actually they would say that I never stop banging on about it. I spend my days thinking about how to cook recipes, or where I can get the food I can’t cook myself.
Food is bit of a difficult subject when it comes to cancer treatment. It is so essential to keeping strength (and spirits) up but most regimes don’t exactly encourage feasting. Weight loss is one of the most common side effects, and with the wigs available these days one of the most visual.
Loss of appetite, sickness and taste changes has been and remained one of my biggest ongoing concerns throughout this journey. When I was told I could lose my taste buds I was honestly appalled. Food actually cheers me up, so being told I may not be able to taste it for several months seemed unnecessary and cruel! Thankfully I didn’t experience too many taste changes during my first treatment, I only went off chocolate. Seeing as it was Christmas, my siblings were certainly glad as they got all I was given!
Transplant was a bit of a different matter. Mainly because it somehow took me from being a teen foodie to totally obsessed. 4 weeks of either being unable to eat or having only food from ‘the muck truck’ (as a friend used to say) has changed me. Those long weeks of mouth sores and sickness mean I now want loads of food, great food, nearly all the time. I definitely drove my parents to almost insanity watching cookery shows in isolation (still do) because they couldn’t possibly see how discussing food, looking at menu’s, planning meals or just daydreaming could be at all comforting to someone so restricted at that time in eating. Each to their own I guess, and I am certainly one out on my own! There is nothing worse than feeling physically hungry but being physically unable to swallow even water…
I wouldn’t say that I have experienced terrible side effects taste wise….though my mum would definitely say no good has come of my new love for sausagey picnic products! I just don’t know what it is, I’ve always liked a cocktail sausage or sausage roll, but generally being a lover of quite exotic and fresh food would only ever really eat them at you know, picnics or kids parties….my love for scotch eggs is also quite something else!
Let me shout it from the rooftops though- food is vital to getting better. It will keep your strength up, a healthy weight makes you less susceptible to infections. If nothing else, we all have certain foods that just make a bad day better. For me that’s a takeaway Bao from my favourite gourmet takeaway, for some that’s a pot noodle. Each to their own.
If you’re currently on treatment, and want to take an aspect of your care into you own hands, eat yourself better. That’s not going ‘raw’ and eating only linseeds and blueberries by the way, but stuffing yourself silly with a variety of great food to help you thrive through treatment. It’s hard but by golly, I’ve seen the difference it makes. Calories vs. Cancer. Flapjacks are recommended, always.
Here’s to being a foodie, being ‘food happy’ and treating yourself. I’m certainly food happy right now after a feast from the ever delicious, mastercheffy Hokkei. A delivery from them to the hospital always brightens up what may have been a long and frustrating day (as today was!) and I’m quite sure squid had never entered here previous to me ordering from them! Mmmm salt and pepper squid…..
So that’s a slight introduction to me and food…..there will be much more to come. The next few blogs are all going to be centred on my stomach. After all, I am on a rather hefty dose of steroids!
Next time be ready to hear about the nemesis of all inpatient foodies….The hospital food trolley!
*dun dun DUUUUN*
(As always, I’d love to hear your recommendations to do with food, of any sort! I want restaurants to visit, if you know of any particular good ready meals, unusual foods that should be on a foodie bucket lists….just if you have something to say about food, tell me! Also, if you are a producer or owner of any foodie business, please know I’m always up for a visit*hint hint*)
I’m doing ok.
As a family we’re doing ok.
To just be ok, is showing how hard it is at the moment. Like really, really hard and more emotionally draining than it has all ever been before.
AS usual I feel I am completely a tale of two halves. The ‘right here, in front of you’ me seems to be doing pretty well. I’ve started uni, made some friends, made a few of my classes. I can walk about and chat, ad go for lunch with my family. I can squeal over Bake-Off like everyone else in Britain and on Saturday I am going to the wedding of on of my most treasured friends. It’s not an exciting life, but it works and I am lucky for it.
The ‘medical notes’ me is in quite a different place. The skin graft versus host disease (GvHD) has progressed rather dramatically over the last few weeks and is the main reason this blog has been in the writing for quite a while. Trying to explain everything that going on is overwhelming and upsetting , especially I really felt that I would be ‘better’ by now, or at least feeling like things are significantly on the up. As well as having hospitalisations for the ongoing infections and temperature spikes, the breakdown of my skin has led to me being referred to start a specialist treatment called Extra-Corporal-Photopheresis, abreviated to ECP for short.
I have been through a lot, and had some insane treatments (having someone else’s DNA for example!) but this one is hands down the most mental, and sci-fi of them all so far. Don’t quote me on any of this detail, but to my understanding it is a rather revolutionary, yet novel treatment that is really changing things for people with GvHD like me.
It involves a process like dialysis, where blood is taken out of my body and filtered into a machine. It is then separated into the different components and the red blood cells and plasma go straight back into me. The white blood cells are then mixed with some medication that makes them sensitive to UV and exposed to it. SOMEHOW this sun bedding of my blood will improve the condition for my skin!!!!!
It is completely bonkers. And I love that.
They have no idea why it works, but I’m so glad that some fabulous scientist had this theory and tested it out because I have such high hopes for it. It’s down to this GvHD that really feel that I have been struggling emotionally. The current treatment is immunosuppression which is obviously contributing to the contraction of all these infections and is probably why I can’t get rid of the para-influenza I currently harbour which means I have to spend all of my inpatient time in isolation, which is as you can imagine, horrible, especially seeing as I am a social person. It really could lead to me not having to spend so much time in hospital, which since June has definitely been more ‘in’ than at home .I’m actually in hospital typing this, after having spiked on Tuesday night.
The thing that I have the highest hopes for is the improvement of my hair. Since the transplant my hair has grown back but recently most of it has fallen out again, as a result of the skin GvHD. As you can imagine this is absolutely devastating, to finally look like I’m getting better, and then look patchy and sick again. The most horrible thing is that I don’t know when it will grow back, I just have to treat my scalp well, do my treatments and hope. I hate the uncertainty, because though hair loss is nothing new for me, before it was end of chemo = hair. Now it’s rather a lot more of a grey area. (The situation not the hair. At least not my hair)
It is very important to take notice at this point that I said the GvHD was causing the loss NOT cancer, and NOT chemotherapy. I would hate for someone to think that I had relapsed because I has a headscarf or hat on. From that point of view medically I’m doing very well, thank you very much! It’s not a thing against people with cancer, duh, but I want people to know how even though this is so so hard and I’m still ill, I’m on the mend.
So that’s where I’m at. Juggling going to university with being an inpatient and am going to be having crazy special skin treatment…. The CMV virus has flared up again (according to my blood results) so I’m stuck in hospital for some time yet.
Oh, and I won an award!
I literally don’t actually know much about it, but last night I won the ‘Local Hero’ Award at the Voice Magazine (for Newport)’s V Awards! I had been invited to the ceremony, but had assumed it was an invite due to my being in the charity circles from doing work with the Mayor last year. I hadn’t imagined I had WON something. Goodness. I didn’t get to go, what with being stuck in TCT, but it is a big honour to have. Thanks to everyone at the Voice and whatever kind person/people who nominated me.
On that more happy note than above, keep smiling….
Today I am officially 6 months and one week post transplant. Counting the weeks I know 27 have passed. A quick search on my phone tells me that it was 187 days I received new life, but that could be lies seeing as I stopped counting days at 100.
I meant to write a post on the actual six month, but hospital admissions got in the way of that, and what is a blog unless you feel like it. I guess that’s the element of “no matter how it may seem” about all this.
Because in the past week, I have taken the single biggest step since having the transplant in way of.recovery.
It’s probably the most exciting step as well….
I HAD MY HICKMAN LINE TAKEN OUT!!!!
Anyone who has ever has to live with any sort of permanent central line will know what a huge deal this is and how much it means.
Admittedly, I had it removed due to infection (not my fault may I add) but the fact it hasn’t been replaced shows how I am no longer dependant on electrolyte and blood product infusions. Less than two months ago I was having blood every fortnight, platelets almost 3 times a week and magnesium at least twice. I’ve come a long way.
I may still have CMV, but I’m having a new form of treatment for that, so that’s all good. I still have this mysterious para – influenza, the flu that doesn’t make you feel ill, and we can’t get rid of….but that’s all good. I probably still have mild GvHD. Clinically I look a bit shifty still, but even my consultant has to admit in that person I don’t really match up to my notes, I’m too well!
I’m a great believer that if.youre well enough to be bored, you can’t be that ill, and this past hospital admission has really shown that. Thankfully I was discharged today!
I am so happy with where everything’s going. I’ve had a Chinese takeaway, something we couldn’t have dared do without a decent neutrophil count, however the removal of my stiches today has lead to the most exciting development…
I have had a PROPER bath for first time in 9 months!
Yes, this is a weird thing to share, and yes I have been washing since November, let’s make that clear.
You see, living with a hickman line isn’t all about just having a tube you can see. It’s a tube that genuinely goes inside of you, meaning anything that tube is exposed to can too. Meaning washing becomes a fiasco of tape and towels, and not getting the dressing wet and being careful and most definitely not having a deep relaxing bath.
Having one today was freedom. Bubbly, hydromoly, blissful freedom.
I am very glad the bathroom is a private place because if anyone had seen the way I was smiling just laying in the bath, I fear I may be off a rather different type of hospital for sure!
Just imagine though (if you’re a bath kinda person) how great a deep, hot, bubbly bath on a bog standard day…
Now imagine it after being discharged
from hospital, after having to have a cannula placed, needing a relax AND having been deprived of a proper bath for almost 9 months. You can see why I’m a happy chickie right now.
Don’t take the little things for granted, because they are great. I’m not saying that to make you be ‘inspired’, make you reassess your life or suddenly start crazy philanthropy. People with cancer are ordinary cool people with the short end of the stick. I’m saying it because life is awesome. Especially the bits with baths and Chinese food and steak. Hickman lines and transplants and doctors and all that are pretty great too, but it’s better when we don’t need them.
I hope you’re all doing well and that you get in touch with how your lives are going 🙂
P’S. In case you were wondering, because these things are of great worldly importance, yes my bath did indeed have a rubber duck 😀
Next stop : The Beach!