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)

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Shrug shoulders up and down.

Rotate shoulders in circles forwards and backwards.

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

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  1. Look downwards placing chin on chest and then gently stretch chin upwards.
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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

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?

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

Swarm Arriving

Some quite expensive

Our new Queen Bee from Germany

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

SO

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 particular order as they come to me. Lazy git that I am.

First, STAY OFF GOOGLE. I can’t comment really on chemotherapy so if you’re having Cisplatin along side RT drop Hazel a line here https://radioactiveraz.wordpress.com She is a mine of information.

Radiotherapy is not in itself painful but there is collateral damage to your mouth and throat and the side effects generally kick in around three weeks but by the end of week two you’ll probably have an itchy scratchy throat. Keeping your mouth in tip top condition can help reduce these side effects. There is research to show people with active gum and periodontal disease do much worse with RT so my advice would be theft if you have time get your mouth in the best of health. You get a dental exam as part of pre-treatment assessment in hospital but a visit to your own dentist to get a thorough clean is a good thing to do. Then work on it when you get home. Floss twice a day to get those gums nice and hard and make sure you get some high fluoride toothpaste from your nursing team so that you can start before treatment. The prescription toothpaste is Duraphat 5000.

There are protective mouthwashes and gels available OTC but they are expensive and available on prescription. Caphosol and Gelclair are the common ones. Some oncologists are wary of Caphosol as there isn’t any concrete evidence to support its efficacy but there is masses of anecdotal.

From Wiki and there are many other sources

Head and neck cancer

Caphosol has also been associated with low occurrence and severity of oral mucositis in a registry of cancer patients. The registry data provide further evidence to support the use of Caphosol to treat oral mucositis and suggest that Caphosol is associated with a low occurrence and severity of oral mucositis with high adherence to treatment as well as high levels of satisfaction from both patients and physicians.

The registry analysed the effects of Caphosol in head and neck cancer patients along with the frequency of patient dosing, adherence to treatment, and patient and physician global satisfaction assessments. Patients at risk of oral mucositis were given Caphosol and instructed to rinse 4-10 times daily depending on the severity of the mucositis. Patients and physicians completed questionnaires on the symptoms of oral mucositis, mucositis severity and satisfaction with the treatment.

The results showed that 88% of patients receiving chemotherapy and/or radiotherapy for head and neck cancer who had used Caphosol experienced no or low grade (mild-moderate) oral mucositis, and 44% experienced mild or no oral pain. Furthermore, the vast majority of head and neck cancer patients (79%) and physicians (78%) were satisfied with Caphosol as a treatment for mucositis.

I was given both once my mouth was ulcerated which is a tad too late. Ask for it as soon as treatment commences and use prophylactically

There might come a time when you find it difficult to keep brushing. I managed with my electric toothbrush and a sensitive head right the way through but there are softer options like Curaprox. Amazon have them.

Drink lots…… 3 litres a day. Heaven knows why this helps but it really seems to.

Some dieticians say to bulk up before you start treatment but I’m not convinced this helps. Being fit is a definite advantage but being fat on purpose seems daft. Yes, you can lose weight if you’re not eating but it makes more sense to make sure you can keep eating. Despite getting myself into a fix at around three weeks ( inadequate pain control) I lost only about 5 lbs. So we come round to adequate pain relief. Pain is better managed preemptively…..very important word, that. Not reactively. Take your meds on a rote basis and make yourself a list of when everything is due. You can take a heck of a lot of morphine if you need it. I managed 100mg a day plus 40mg of long acting without problems…….just remember the LAXIDO ( morphine has to be taken with laxatives or you get really badly constipated)

Food replacement drink. These are horridly thick and sickly sweet but one they come in at 2Cals per ml and you need 2500 Calories a day so you can see they are invaluable. Don’t stint. Dilute them if you need to. Rinse your mouth out afterwards. We are quite prone to oral thrush and the yeast thrives in the very sweet stuff that’s keeping you alive and well.

You’ll be given neck and jaw exercises. Do them. Do them before you start.Neck exercises here https://www.uhn.ca/PatientsFamilies/Health_Information/Health_Topics/Documents/Prevent_and_reduce_stiffness_caused_by_radiation_treatment.pdf and Jaw and throat exercises here https://www.royalberkshire.nhs.uk/patient-information-leaflets/cancer%20information%20head%20and%20neck%20swallowing%20exercises%20head%20and%20neck You can miss the lip ones out.

All this seems really onerous and you might think what’s the point? But really, you might feel crap but if you can spend a little time doing some of them you’ll really benefit.

Moisturise your neck which will “burn” with RT. I used Cetraben through the day and Aloe Vera gel applied liberally as soon as each session was over. My neck got red and flaky but nothing to write home about

Finally I’d like to touch on damage to salivary glands. This can be quite severe and although my saliva has recovered maybe to 75% of what it was it will never be perfect and it’s taken two years to get here. You need to protect your teeth which rely on normal saliva to keep them safe. Artificial saliva can keep your mouth moist but keeping your salivary glands actually functioning must surely be a better thing. Stimulating them with sugar free chewing gum is key and if you throw xylitol into the equation you’re quids in; food for thought.

There is a separate post here on acupuncture. Have a look. It’s made a huge difference to me.

Really finally……. Do as you’re told by your support team. Don’t be brave trying to struggle through when there are ways and means of making the passage to cure so much easier and do use your daily contact with your radiographers to bring up concerns.

Really really finally. A positive attitude helps you cope with being miserable but there’s nothing wrong with having miserable horrid desperate days. Miserable people get cured too, they just feel worse so don’t be brave just be you because the rotten trampled frightened you is merely hiding the real you that will emerge in the end.