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 come for a few weeks, some stay to help and some leave to get on with their lives. One lady labelled us “legends” which was hilarious…..because we are not but it has jokingly stuck.
Three weeks ago we finally got to meet up in New Quay on the Cardiganshire coast in the sunshine to share gossip, an ice cream and a hug. So I simply wanted to raise a glass to my fellow legend
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 into my bees.
Some shots from the hive. Top we have one of our queens. She has a white mark on her….wearing off…. to help us spot her quickly amongst the thousands of daughters and sons in the colony. She lays eggs in the honeycomb which hatch into larvae that look like little white commas and when these are ready to pupate the bees seal the cells with a mixture of wax and propolis and that white grub changes into a bee which emerges 12/13 days later into the dark warm hive where she will live for three weeks before she flies to collect pollen and nectar.
This is the Apiary in July. The hives producing honey are at the back and the five in the foreground have new queens. As you can tell…I’m pretty disorganised and not really into coordinated colours here. There is a real mish mash of wood and polystyrene and different colours. A kaleidoscope of boxes.
This year we have new genes in the Apiary. Exciting times await
This is one of our better colonies. There is potentially 200lb of honey stacked up next to me. Time will tell when we take it off the hive at the end of August. Most of it will be from Bramble, Rosebay Willow Herb and Clover.
Honey varies in colour and taste depending on where the bees forage. In spring Hawthorn nectar produces an amber coloured, toffee flavoured honey and dandelion a paler one that crystallises quickly, smells of sweaty socks but tastes wonderful….a sort of Durian of the honey world. In the summer clover gives you a perfumed pale honey and Rosebay a pale straw coloured one.
Last but not least, watch two new queens emerging one after the other. If you look closely you’ll see another running around. They are hungry. The first thing they do is dive into a cell to feed.
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 tongue cancer
Today I had ask appointment with my surgeon Mr Kittur. I was hoping I’d get away with a phone consult but no….the booking office rang me and arranged a F2F. I have got so used to long distance monitoring that when a physical event presents itself it brings back all the anxiety of the past. I check myself routinely. I know what to look for but……….. HOORAY ……..he has a good feel of lymph nodes and a look in my mouth and I’m free for another six months. Recurrence is more common in the first year, the longer I remain in remission the better my chances of living. I’ll take that.
The bees said thank you too and left Mr Kittur and Dr Banner, the oncologist looking after me a couple of jars of honey each
I wasn’t going to indulge in posting interim reports on me but you know what…..Wales is basking in a really well earned heatwave after a miserable Spring. The sun was shining. I was on my own in the car. I’d just got an All Clear, at two and a half years. So I pulled off the M4 onto the Welsh country lanes I know so well, wound the windows down, put my favourite Steely Dan album on full blast
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 attending routine consultations, this routine surveillance regimen is inefficient, resource-intensive and increasingly unsustainable. Patients also report that follow-up schedules are too frequent, and may exacerbate fear of recurrence. In contrast, detection rates increase dramatically when patients initiate earlier review because of developing new symptoms.
Aim and Objectives: With patients and clinicians, develop a patient-centred, evidenced-based and theoretically-informed complex intervention and information and support resource for PETCT-guided, patient-initiated follow-up for HNC.
I’m so proud to be a tiny small part of this trial and I’ve been involved in Zoom meetings to help draw up an App as part of this resource; an App to enable patients to self monitor and keep in touch with their hospital team. There are lots of other extras like links to support groups and living well tips.
I thought I might sneak in a few snaps of what this might look like on your phone.
I think this is very exciting and might well suit quite a few patients. Much as I like seeing my wonderful Oncologist and Surgeon (though I must admit both have been either a distant voice at the other end of the phone or hidden by an alarming amount of PPE paraphernalia for the last year) I guess seeing them less frequently wouldn’t impact much. My Oncologist has done his job…..I sorely hope my surgeon has….. so I feel my survival is now down to luck.
Ive left this on Twitter …….“Just been in a PetNeck2 Zoom call, So proud to be helping finesse an app for Head and Neck Cancer follow up. Do I want an App replacing my oncologist? Human intelligence or AI? Daddy or Chips? Seriously; done properly it makes sense and I would be happy with it. They have done a brilliant job with it.”
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 less likely it is to become a real pain.
These simple Exercises can be carried out either sitting or standing and each exercise should be repeated 5 times.
Standing or sitting in front of a mirror, carry out exaggerated vowel sounds (A, E, I, O U)
Shrug shoulders up and down.
Rotate shoulders in circles forwards and backwards.
Facing forward, gently turn head to look over left shoulder, return to the centre before turning to look over right shoulder.
Look downwards placing chin on chest and then gently stretch chin upwards.
When in bed sleep on at least 2 pillows.
This isn’t like a deep muscle massage. It’s a combination of light, motions that stretch the skin and begin moving fluid to an area that has not been damaged and can drain more effectively.No oil or cream needed, simply dry hands and a light touch It’s not often that I post a picture of myself but I did this just to show how easy it is to move lymph to the lymph nodes behind your ears that often escape any damage.
So Ian (Rossi500) this is for you
Routine: Get into a routine.After treatment, when your long recovery starts one of the things you do is drink lots to get the mucous shifted and to keep your trashed mouth moist. So…….you do go to the loo a lot and I found this the ideal time to do my neck stroking. 50 strokes each side and in no time it was gone. Now and then my neck gets a bit puffy so a week of attention and it disappears.
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 had been eased out of the cancer pathway for her checks and I was not happy that the same fate might befall me. (she wasn’t happy with her situation either….in fact she was furious and did something about it)
Bless him. He was keen to assure me that I would remain on his list and he would definitely be the one to “discharge” me at five years. His words, “I don’t just want to see sick people. I want to see that I can make them better, to see them well.” Hardly surprising that. Can you imagine how miserable it must be to see ill people in various stages of radiation decrepitude and not see them thriving? Another thing I learned was that it was his policy to not actually discharge his patients but to simply say he didn’t need to see them again and that if there was anything worrying us that we thought might be cancer we should bypass our GP and go straight to his secretary.
Anyway I digress
The long and short of it is that follow up of head and neck patients is labour intensive, inefficient and unsustainable. Most recurrence is symptomatic and reported by the patient. Nasoendoscopy in particular is invasive time consuming and doesn’t pick much up. Clinicians are looking at changing the way head and neck cancer patients are monitored with a view to making the whole thing more patient led. One protocol being looked at is to have patients undergo a PET/CT at a year and those at low risk (ie no cancer) go on to a patient initiated appointments with guaranteed contact with their clinical nurse specialist and a two week emergency appointment with a clinician if needed.
This is the way patient surveillance is going and is the future
Below is information from Birmingham University exploring how this might be done. Anybody interested in this should have a go and we can shape the future of the folk who walk in our footsteps
The above link is not clickable so please email@example.com further information
Light at the end of the tunnel? I’ve seen a few lights already. Some of them have been oncoming trains
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?
Who are the Community champions? The Community Champions are a dedicated team of volunteers here in the Community. They are members who found the Community to be really helpful and wanted to give something back. Our Champions offer support and a listening ear. They help new members find their way around the site. Community champions also help the Community team to keep the site safe for everyone.
I must admit I thought it was a huge challenge, a huge responsibility but I thought I could give it a go. My mate Hazel https://radioactiveraz.wordpress.com and I had already been running a WhatsApp group for people with head and neck cancer and I thought, yes….I can do this. It’s really strange. I was getting better but I couldn’t let this cancer go somehow, yet I wasn’t going to let it define me so I put it away in a drawer while I helped others along the way.
And then some months down the line we all got this…….so chuffed for everybody
Then summer came. We got more bees, some free
Some quite expensive
Stan made a pond
And put up a new Barn Owl box
And even though the weather was bad and it rained most of the year our bees brought us some honey. We had enough to share and sell
Christmas time our Cambridge Fairy came out
And thanks to Covid-19 we spent a Christmas without the family and the children and the grandchildren BUT none of this I would have seen if it wasn’t for the brilliant NHS and my wonderful support teams at The Morriston and Singleton Hospitals