Welcome to Dani’s Blog
A journey through throat cancer
Finishing It
I can’t configure
a tablet
chiselled by God’s finger
or forge
a scrawled prescription,
but here’s an inscription, formed
on the small white dot
of its own
full stop,
the sugared pill
of a poem, one sentence
that speaks ill
of illness itself, bullet
with cancer’s name
carved brazenly on it
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What to do with my Radiotherapy tattoo?
When I had my planning CT ….so long ago, it seems, I got dotted with this! Why couldn’t they at least have got it central? I’ve mithered about what I should do with it for a while. The obvious choices were to leave it or have it removed. Not so simple though. It’s part of…
A History of Radiotherapy to celebrate British Science Week
Some science about Radiotherapy. A lovely presentation by Rad_Chat who produce radiographer led oncology podcasts https://linktr.ee/radchat They are really worth checking out for some interesting stuff. More links at the bottom of this post Just recently they had an interview with a lovely chap called JJ about his experience with cancer. It’s here https://radchat.transistor.fm/74 and…
SURVIVORSHIP
Today is my fourth Anniversary of treatment end. Something to celebrate? Or something to just note down in the blog on the way to the MAGIC FIVE years? Or maybe something to use as a vehicle to explore how to cope with life after treatment? Please don’t call me a cancer survivor, a hero, a…
What to expect in the first year
When my oncologist first talked to me about my diagnosis and we discussed a treatment plan he told me that the cancer would take a year out of my life……and he was right. “What can I expect” is a common question from patients newly diagnosed and one that we on the Macmillan community spend a…
Three Years Clear
The first day of Spring I missed my three year anniversary in January mired in anxiety about more cancer. The fear can strike us any time. I spent a miserable Christmas worrying about increasing reflux that wouldn’t respond to treatment. PPIs, drastic diet change, sleeping upright and surfing the net for quack remedies. With my…
International Day of Medical Physics
Today is The International Day of Medical Physics So I thought I might start with a physics joke Then I thought I might add some pretty pictures Ending with a really cool picture of protons travelling through gelatine Which takes me to some interesting education. This week saw the Swallows International Head and Neck Cancer…
The Legends
Strange title. I should have posted this three weeks ago I’ve written previously of my cancer buddy Hazel. She is RadioactiveRaz and has a blog https://radioactiveraz.wordpress.com We have messaged for two and a half years and together we created and still run a WhatsApp group to help and support folk going through treatment. Some people…
Bees and Honey
At my last hospital appointment I dropped off some honey for the two consultants who look after me. I said I’d update the blog with a little info so especially for Mr Kittur here is a glimpse at where your honey comes from. If there are any beekeepers reading this it’s just a simple glimpse…
A celebration
A message I got from a friend so touched me There is a Facebook group called Young Tongues. https://www.facebook.com/search/top/?q=young%20tongues%20private%20group They are fairly new and need more members so take a look….but I digress My friend sent me this picture of the cake a young lady’s boyfriend gave her for her six months after treatment for…
Post Treatment Follow Up Trial PETNECK2
Research Question: Does PETCT-guided, patient-initiated follow-up result in similar overall survival compared to current post-treatment routine surveillance for head and neck cancer (HNC) patients? International guidelines recommend regular routine follow-up, aiming to detect recurrences early and enable successful re-treatment. This regimen is effective at detecting recurrences. However, because detection rates are low in asymptomatic patients…
Lymphoedema
I have been chatting to a friend on the Macmillan forum about coping with lymphoedema. This unpleasant swelling occurs when lymph drainage is damaged by either radiotherapy or surgery. It can vary between a mild inconvenience to a painful hard to put up with and hard to manage condition. The earlier you tackle it the…
Two Year Anniversary
Today has been a day of contrasts. A bit like the last two years; not much to say except to leave a few snaps
The future of follow up
As I hadn’t had a nasoendoscopic exam for 8 months I asked that my next appointment wasn’t over the phone and was a F2F. I was looking for that reassurance even though I felt well. Dr Banner and I talked about follow up. I was keen to clarify a few things as my mate Hazel…
A quick review of the year
A Snapshot Light at the end of the tunnel? I’ve seen a few lights already. Some of them have been oncoming trains BUT After Lockdown we got away a few times. Still enjoying a beer 🙂 Then out of the blue came a message from Macmillan. Did I want to join the Community Champion Team?…
Another Birthday
Twenty years ago this morning I stood gasping but deliriously happy at the top of this mountain. So I’m raising a glass to the next twenty and bugger Cancer!
Coping with Treatment
I was going to put a 2019 review up next but talking to somebody on the Macmillan forum https://community.macmillan.org.uk/cancer_types/head-neck-cancer-forum I think I’ll just put a few words up about treatment in general and how to be proactive. I’m not feeling brilliantly well organised just now so I’ll just jot a few things down in no…
Happy New Year 2021
It just occurred to me that I haven’t posted here for months so the start of a new year seems to be a propitious time. Time to reflect and the mirror for these reflections is deep this year. Not a year to simply reflect on my recovery and marvel how life goes better than I…
Surviving Covid-19
Well we are still here. Time I put some more work into this blog. I have been terribly lazy and not visited here for some weeks so I should get off my backside…or rather on it… back at the computer keyboard. In my defence Stan and I have been busy in the garden and poly…
And Now For Something Completely Different.
Absolutely nothing to do with cancer I spotted this piece on the news today. It gave me so much joy and the hairs prickled on the back of my neck so I thought I’d share https://www.bbc.co.uk/news/science-environment-51553381
After Treatment
This is an excellent article about life after treatment. I’ll put a link to it at the end in case anyone wants to save it but I thought I’d put the whole piece here. After the Treatment Finishes – Then What? Dr Peter Harvey Consultant Clinical Psychologist Leeds Teaching Hospitals Trust Imagine a roller-coaster. Some…
Robot Surgery
A significant number of oropharyngeal tumours are in difficult to reach places and have conservatively been operated on by splitting the lower jaw and prizing the two parts apart (a bit of an oversimplification here, but humour me). As you can imagine this causes much post operative pain and disfigurement and results in longer recovery…
Acupuncture Update
Today I had another session of Acupuncture so I thought I would add some pictures. Excuse the ragged gardener’s nails! This type of Acupuncture is called Auricular Acupuncture and there is lots of data on how well it works for salivary function. It is designed to stimulate those minor salivary glands that are often largely…
The Customer Knows best?
This from CRUK’s Twitter feed made me smile and just had to share it With profuse apologies to my two lovely doctors from Oncology and MaxFac
World Cancer Day
February 4th was World Cancer Day and Radiotherapy for Life were at an event at the House of Commons trying to raise the awareness of the importance of Radiotherapy in the successful treatment of cancer. RT is severely underfunded and understaffed in the UK (what part of the NHS isn’t, come to that?) and many…
The calm before the storm Ciara
It’s the beginning of February and our mild winter is morphing into proper winter. We have storm warnings that we should actually expect for this time of year. Even so the newspapers are full of apocalyptic warning. Batten down the hatches and prepare for Armageddon. I’ve had a bit of a storm myself. Episode 1…
First Anniversary
One year, one whole year has passed since I scrambled off the linear accelerator treatment table at the Singleton for the last time. I have had a year of incredible ups and downs, of pain and joy, of delight and horror but I’m still here and more or less in one piece. I am not…
Acupuncture The experiment has started
A couple of weeks ago I had my first appointment with Alison. She is a lovely lady and we hit it off straight away, swapping tales of CND experiences of our youth; my one Aldermaston march (cheating by just doing the Trafalgar Square beano) and her chaining herself to fences and getting arrested at Greenham.…
Honey
Honey is good for you, miles better than sugar. Naturally produced, raw unheated, unrefined honey with the pollen unfiltered has vitamins, enzymes, antioxidants aplenty. Most honey is significantly antibacterial.Some people swear by it to help them with seasonal allergies. It tastes good. Take your pick from any of that I’d like to mention Manuka Honey…
10 Months on
Yesterday was my 10month anniversary, or to be more precise 43 weeks and 3 days since my last radio session. While my general fitness marches on I am still working hard on the saliva front. I can manage most foods, needing a drink with only the driest but I am getting quite frustrated with my…
Christmas is Coming
This last couple of days I have been wrapping presents for the Radiographers on LINAC 1 and the Head and Neck Nurse Support Team at The Singleton Hospital There’s a bottle of Prosecco and a jar of our honey and I might add some chocolates too. Last year I was getting zapped daily and I…
Immunotherapy
More ammunition Yesterday the BBC reported was some excellent news about a drug trial for head and neck cancer that was advanced, had recurred or had spread. https://www.bbc.co.uk/news/health-50507069 In a trial, pembrolizumab kept head and neck cancers at bay for an average of two years – five times longer than under chemotherapy. The patients also…
Getting Fitter
Today I woke up to this The day proved to be a Shepherd’s Delight not a warning. The sun shone and it certainly made me feel alive. Time to get out of this pit of indolence and get fit again. I used to run. Nothing serious since that London Marathon more than ten years ago,…
Proton Therapy. The future
Mooching around the internet, as you do, I found this. It’s one of many articles from USA hospitals. Quality of life is so important especially as so many younger people are being diagnosed, cured and living for many years with the sequels of radiation. Then I found this So disappointing. We can only hope that…
Fundraising The Moustache
I have bullied Stan into growing a moustache So we are crowdfunding for MacMillan Cancer care You can donate here if you fancy https://www.justgiving.com/fundraising/stan-akrigg Day 1 Day 7 Day 14 Day 21 Last Day Stan has decided he might keep it….Grrrrrrrr. Looks like I’ll have to bribe him to shave it off. Fund is nearly…
Onward and Upward
I am now nine months post treatment and on two month check ups split between the surgeon and the oncologist. On my latest visit I asked about checking my thyroid hormone levels and my carotid arteries. Radiation to the neck can destroy thyroid tissue and 50% of people need thyroxine therapy so monitoring is advised…
This summer
Since then Stan and I have visited his mum and his children and grandchildren. We upgraded our camper in February to a bigger new mobile home so that our collie Bracken can come with us in comfort. We visited the Malvern Autumn Show and walked three miles there and back and I felt comfortable with…
Drugs
Here is a list of the drugs I got through. Some are from my own team and some I got myself from MacMillan Community advice: Things for my mouth: Biotene mouthwash is nice and soothing Gelclair and Caphasol helps mightily with the mucositis A Benzydamine mouthwash called Difflam is a good numbing agent before you…
Results and a hiccup
Five weeks later there are a lot of people in the consulting room again and I am pitched into the dark again as I’m told that the PET/CT shows an 8mm hotspot and they need to biopsy but everybody tries to reassure me that they have never had a failure at this stage, especially as…
Recovery and scans
Two weeks pass and life begins to reappear somehow. I have an appointment to see Dr Banner in four weeks time. It seems a lifetime since I saw him. I forget what he looks like. I have been plagued with nausea from week three. I suspect it’s the morphine but I can’t do without it…
Support
I have to add a few words about support here: The MacMillan nurses have been absolutely stupendous in propping me up. Both teams at the Singleton and in Carmarthen have been exceptional in their care. My brilliant daughter, Cat, has Skyped me from Berlin and sent me encouraging messages throughout. When I couldn’t face anybody…
Treatment:December and January
December Treatment I can’t stress how important it is to keep well. Radiotherapy will make you tired, very tired. You have to rest and let your body cope. The cancer is going to take a year out of your life. Control the pain. Ask for different pain relief if yours isn’t working. Some people seem…
My Journey through thick and thin: August to December 2018
August Believe in your body and in your second sense. Usually if you know there is something wrong there is…trust me; women are particularly good at this. My GP couldn’t appreciate much to see but at my insistence he arranged a fast track referral. September A quick word here about waiting. You get used to…
My Story
The first part of this blog is retrospective though based faithfully on my diary account. I’ve always been a “Glass Half Empty” girl. It’s the way I am. It’s a form of self defence. Expect the worst then be prepared for it. Positive mental attitude doesn’t cut it for me but I luckily have a…
I am 67 years old, retired and living in Rural Wales
Once upon a time there was August 7th 2018 The whole world changed for me that day. The earth continued to spin but stopped dead for me. That was the day I discovered my cancer at the back of my tongue. I knew what it was the instant my finger found it. I sat on…
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