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 lot of time answering. We are all different. Some people sail through relatively unscathed yet others find their soul at death’s door. Yet there is a common denominator.

I found this webinar-to-come from The Head and Neck Cancer Alliance in The States and I wanted to put it up here to give folk a chance to register and have look. It’s free……. but the bad news is you have to get up at 8.am to view.

They also have a YouTube channel where their webinars appear

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 GP reluctant to commit himself to a fast track referral, I referred myself for a gastroscopy which was an interesting way to spend a few minutes of my life. I am now the proud owner of a 2cm sliding hiatal hernia which is a million times better than the hysterically imagined oesophageal cancer. God, can the mind play some awful tricks on the body!

Talking of quack remedies alternative therapies, I have embraced a few and there is scientific evidence for them…..more later. I am weaning myself off the PPIs I was prescribed at the start of treatment. A heck of a lot of us suffer reflux as some sort of gift from Radiotherapy. I took the drugs without question, a good “pill for every ill” sort of girl that I am. BUT do we really need them? Aren’t we supposed to have stomach acid? So I did some research which led me to these two.

Aloe vera has been shown to protect the gastric lining and Melatonin to increase oesophageal mucous so I take the disgusting Aloe in the morning and a couple of yummy gummies before bedtime. It helps me sleep too which is a bonus. Aloe is widely available most likely places, melatonin is on prescription only in the uk but you can get it from The States. I can say that after a few weeks on these I am a new woman. I feel I can throw the PPIs out of the window on the next sunny day.

I’m also trying one of these which arrived yesterday

This gizmo is called an IQoro, invented by the Swedes. I stumbled across it researching reflux quack remedies alternative therapies. IQoro is a neuromuscular training device that utilises the body’s own natural systems to strengthen the muscles from the mouth, upper airways, oesophagus, down to the stomach. It’s been reviewed by NICE where it seems that it might help but is too expensive to recommend…..sound familiar? I asked my gastroenterologist about it and he looked at me as if I was mad….well his eyes did, the rest of his face was masked. This possibly means that he’s never heard of it, it’s a quack remedy or it will work. Take your pick.

https://www.iqoro.com

Watch this space. I will report back in a month.

I thought I might finish with a snapshot of what keeps me going. If Stan and I go away for a few days it’s like packing for a bottle fed baby!!! You’ve got to laugh, though, haven’t you.

Actually I haven’t quite finished.

The beginning of March 2022 and some crazed despot

is trying to ruin the world we live in for some sort of glory in his dying days.

I don’t pray but God Bless the people in Ukraine and President Zelensky….and keep them safe.

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 Conference https://www.theswallows.org.uk/conference/. over three days with some exceptional lectures. Here’s a YouTube link to the first day https://www.youtube.com/watch?v=A1_fv5OaYK4&t=68s The lectures are up till November 2022 so dip in and have a look

https://www.youtube.com/playlist?list=PL61oFH40ziJdJYI4OJo0BNzH0XMLQOUoE

info@theswallows.org.uk

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 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

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 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.

Cells full of nectar and different coloured pollens

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

Two queens delivered by Royal Mail. £40 each!

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.

Different Coloured Honeys

Honey in the hive

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.

There’s a little more here https https://todaymycoffeetasteslikechristmasincostarica.com/2019/11/27/honey/

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 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

and sang (badly)all the way home.

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 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. 

More info is here https://fundingawards.nihr.ac.uk/award/NIHR200861

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.” 

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 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.

Lymphoedema-1.png

Standing or sitting in front of a mirror, carry out exaggerated vowel sounds (A, E, I, O U)

Lymphoedema-2.png

Shrug shoulders up and down.

Rotate shoulders in circles forwards and backwards.

Lymphoedema-4.png

Facing forward, gently turn head to look over left shoulder, return to the centre before turning to look over right shoulder.

Lymphoedema-5.png
  1. Look downwards placing chin on chest and then gently stretch chin upwards.
Lymphoedema-6.png

When in bed sleep on at least 2 pillows.

MASSAGE

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.

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 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 copy/paste jbrett@brookes.ac.uk for further information

Online survey is at http://www.smartsurvey.co.uk/s/PETNECK2