I just wanted to update everyone that’s been following along on my Hodgkins Lymphoma journey, because the interim scan results are in and it’s great news – all the tumours (I had 5) have been well and truly zapped by the chemo and have gone!
The PET scan shows I have no evidence of cancer there, although it can’t fully pick up some cells that may be lying dormant…. which is why you have to continue with the full treatment to the end. What it does mean is that we can drop one of the medicines, Bleomycin, which can have some nasty effects on your lungs, so the sooner it goes the better and the rumour is that this knocks off some of the nasty side effects too…here’s hoping!
So, since I told you all about my diagnosis and the start of the journey, pre-chemo beginning, I haven’t filled you in on how it’s gone so far and I thought it might be useful for others out there to hear what it’s really like, especially those who may be starting their own chemo journey soon.
Firstly, let’s start with the positives; the people, all the medical and volunteer staff involved in my care have been amazing, and there are a lot of people!
Here are the team; Haematology specialist nurse – talks you through all the treatment, organises key scans and referrals for additional holistic treatment, financial help, wig appointments and is there to answer any questions, no matter how bizarre, all the time, the picc line nurses who insert a fine tube that goes in through your arm and up around into your chest and stays in until full treatment is finished and make sure you treatment gets in without any pain and keep the line infection free; the chemo nurse team – these are the guys that keep you calm, comfortable and entertained on treatment day, administer the treatment and look out for any reactions and do all the blood tests prior to treatment too; the volunteers on the unit keep you topped up with tea, toast, and lunch; the doctors; consultants and more junior doctors who review you after each cycle, check all your blood results and make sure you are ok for your next treatment and if not give you meds to get you there! And finally, the therapists at a place called The Well Centre (in Barnsley), who give you 6 holistic treatments to supplement chemo and make you feel a little more human, for free!
As you can see it’s a lot of people and that doesn’t even include the staff that do the various scans and tests you need along the way. When you add up all those who help to get you well, it makes you incredibly proud of the NHS. So many people complain about it going wrong, and yes, some appointments that should take an hour can take half a day instead, but overall, I couldn’t have asked for better service and care.
Now onto the harder parts, I‘m not going to lie, chemotherapy is one of the hardest physical and mental things I’ve ever been through.
I was partly prepared; I have family who have been through it but boy is it a complete roller-coaster. And I’m lucky, the treatment I have, called ABVD is one of the most effective treatments out there for Hodgkins, and quick in terms of results – it’s only taken me 2 months to get to this point of success but part of me suspects that’s because it is such aggressive, full-on treatment.
My treatment plan runs every 2 weeks, I have chemo on a Friday and the side-effects mainly hit me in that first week from Sunday to Friday. On the first 2 days I’m mainly buzzing on the steroids that they give you prior to chemo, which have had some interesting, enlightening moments – not least finally coming up with an ending for my book!
The reality of side-effects though is that you don’t have much control over them because you can’t take many medications to quash them, such as paracetamol and nurofen because they artificially bring your temperature down, and you need to keep an eye on that for infection purposes. One relief I have had is that is hasn’t made me sick – the drugs they give you for that, have worked for me, thank goodness!
My main bug-bears are constant aching (kind of like flu), loss of appetite, intense headaches, restlessness, horrible taste-buds where food just tastes gross, hot flushes, ridiculous tiredness and insomnia – essentially I’m going to need some cosmetic surgery after this because I look like I haven’t slept for a month!
But the good thing is, I get a week’s reprieve before it all starts again. In the 2nd week I feel far more human, still tired, but much more my self and able to do stuff, rather than trying not to have a fight with myself, forcing myself to eat or just laying in a zombie-like state watching TV! The challenge on the 2nd week, is trying to fit in as much fun as possible, in-between the next round of appointments.
The mental battle throughout this is just as hard, trying not to be miserable when feeling rubbish and trying not to be angry about the fact that there are few places I can go when I do actually feel well enough to get out.
There are several times already when I have been neutropenic (where your blood white-cell count dips too low, making our immune system practically none-existent) which has required me to take extra injections at home and meaning I have to be extra careful to not expose myself to any bugs out there – i.e. become even more of a hermit!
The next challenge is the hair battle. I’ve been weirdly lucky to keep it for longer than I thought, I normally goes after the 2nd treatment and I’ve just had number 5. I cut it shorter into a bob (like the main picture) a while back to prepare and it’s lasted a while like this but now it is really thinning on top and I know I’m going to have to be brave at some point soon and shave it off, but I’m scared to death about doing that.
From normally long, to wig choosing, to lots coming out on each wash, to my current half-scalf look – the hair loss is a trial in itself!
It’s hard enough not feeling yourself and feeling ill but your hair is so much part of your identity and I know that when I have to face myself eventually with no hair in the mirror, it’s going to be shocking and to me, it will just look awful.
I’ve got hats, scarves, the wig etc so I’ll have to get used to them. I know it’s temporary and I know it will grow back, but that will take months and I just think it’s the cruellest thing for people with cancer to go through, on top of everything else.
So, whilst of course I am so happy the treatment is working and all this is not in vain, I’m also very aware that I’m not even half way through yet – I have 7 more sessions to go, there are still more challenges and side-effects to overcome, follow-up appointments and what I can only imagine for anyone going through this to be that eternal fear – will it come back?, before I can finally begin to get ‘me’ fully back – but I am writing this on my bad week so I’m sure I’ll feel more positive again next week – see what I mean about it being a roller-coaster?
What I am immensely grateful for is the other huge team around me of family and friends that are sending supportive messages, helping out with the kids, calling in to keep me distracted, dropping in flowers and other lovely gifts and telling me all their news (because it’s way more interesting than mine!) – it all helps to keep me motivated so thank you!
Just some of the lovely gifts I’ve received, including handmade jewellery from my friend Rachael of Pippi Silver, green fluorite earrings from Gale Barker who runs the writing group I go to and my friend Gemma wrote to my heroine Author, Clare Mackintosh, who then sent me this lovely note! Feeling very spoilt!
A little bit of sketching is helping to keep me calm!
In the meantime, on my good days, I am trying to be as productive as possible and last week went especially well. I went back to one of my writing classes (it’s in a house so allowed!) and used my chemo-fog brain, continuing when I got home to do my ‘homework’, met up with some Wow Wednesday members for lunch and brainstorming about the upcoming Vision-board Workshop we are doing, got out in the sunshine with the dog, wrote two small writing competition entries and my first blog post of the year on my writing goals, took part in some of the #30daysketchbookchallenge, mind-mapped out my guiding words of the year (blog to follow on that next week) and finally met the lovely Sam Bunch for brunch at the weekend!
Sam wrote the fabulous ‘Collecting Conversations’ book a while ago and so I connected with her via Instagram and it was so nice to meet up with her in real life! She was up here promoting her new book – Menopause – The Hot Topic at Read Bookshop in Holmfirth and the event went down a storm with 40 women! We could have literally talked all day long about every topic under the sun – don’t you just love it when that happens?
Our fabulous WOW Wednesday group just keeps growing and growing!
Today I, a little-shakily from lack of sleep, headed back to our Wow Wednesday group, I begged the doctors and they’ve said I can go so long as I’m careful. Last time we had 6 new members and today another 2 new ladies! It’s going great-guns and I don’t want to miss out – it may just require a power nap in the afternoon to recover from lots of inspiring chat!
So, I’m hanging on to these positive days and it certainly helps you focus when you have a small window of opportunity to crack on with what you want to do. This weekend it’s my birthday coming up so I’m hoping for nice weather to get out into some fresh air with the family and a few other lovely things planned, so come on weather gods, play nice!
Until next time…
Juliet, The Curious Creative x
Ps for those who don’t know my diagnosis story and want links to symptoms and support, please read my initial blog post here