Update – Hospital Visit (Oncologists) Royal Surrey Hospital, Guildford. Thursday 17th April 1030am.

Met up with 2 oncologists this morning, a radiologist for a dental x-ray, a dentist, a dietician and a phlebotomist.

5 hours later I left the hospital and headed home absolutely famished – I ate like a man who’d been on a desert island for several months.

Stepping back to 1030 this morning I met up with the Oncologists who explained that I would be bombarded with information – yep, she was right.

If you buy any medication and look at the instructions in the box you’ll see all the possible side effects of that medication but you take it anyway, on the whole, right?

That’s what I was bombarded with – side effects. But it wasn’t all gloom and doom but these things have to be laid on the table, I understand that. Everything from Thrombosis to secondary cancers due to radiation.

I should step back a little more and give you a ‘heads up’ about these last few weeks, stay with me…

I had my right tonsil removed 2 weeks ago as it was cancerous. I had been in limbo for 2 weeks as the docs weren’t sure, once they’d confirmed the lymph node was indeed cancerous, where the primary site was.

It decided to take its natural route into my lymph nodes – 2 of them in my neck, one of which is the lump I noticed 6 weeks ago which drove me to make an appointment at the GP surgery. The first GP dismissed it as swollen glands saying I should leave it 2/3 weeks and come back if it wasn’t any better, but I knew something wasn’t right and saw another GP the following week who gave me an urgent referral to hospital.

Like many cancers they go unnoticed until a symptom brings things to your attention.

It made me think how often we look into the back of our throats? When I felt the neck lump I dived into the bathroom, torch in hand, and had a look in my mouth – my right tonsil was so much bigger than my left. Something wasn’t right, I knew that for sure. Just contrasting and comparing left and right.

I guess my poor old little tonsil was just doing its job and soaking up all the nasty stuff and keeping things from going any further.

So, I’ve been in the ENT (ear nose and throat) system ever since having operations, scans, x-rays, and biopsies etc.

The consultants had a hunch the primary site was the tonsil but they had to wait for pathology to confirm. I also had a CT scan of my neck and chest meanwhile. The mind wonders during any period of waiting, waiting for results. That was the unsettling part for me and my family, of course. By the way, my partner is Denny, our two daughters – Sophie and Hannah, 23 and 21 respectively and my son, Elliot 15 years old.

Last Thursday, the surgeon did in fact confirm that the Tonsil was indeed the primary site. The neck and chest scan came back clear. It was good news amidst the not so good news of the past couple of weeks.

My partner and youngest daughter were both with me that day – I’m glad they came along because it lifted their spirits having been living with the uncertainty of the last couple of weeks.

That was the first time, I had my family come along to the hospital and it was nice. I’m not a rock, I know that. At first, I wanted to keep things on a need to know basis but found it more difficult. I had initially wanted to protect my kids from knowing stuff perhaps they didn’t really need to know but things are more out in the open and upfront now, and in many ways that’s a good thing, both short and long-term for all of us.

On a lighter note, we left the hospital that day and went straight to the fish and chip shop and wolfed a portion of chips – it was just what I fancied. It was the first time in a week I could swallow normal food, other than the fantastic healthy juices Hannah prepared for me.

I should say at this point my diet has been driven by my kids and partner. Enter the world of Juicing. As much organic food as possible. I have given up all dairy, red meats, processed foods and as much sugar as doable in whatever form – I have a real sweet tooth and that’s damned hard!

Yep, I’ve slipped up a few times and have eaten things I daren’t tell Hannah about. She must never know….

Technical bit…

So, we have the soft linings of our mouth. The tonsils are part of the mouth (oral cavity) technically it is in the Oropharynx (back of the throat)
My cancer is a Squamous cell carcinoma. As the lining of the tonsils are squamous cells it follows that the Cancer is a Squamous cell type.

Yes, it has gone into my lymph gland (node) which isn’t ideal but it’s all local and treatable (curable) The lump is just below my right jaw line on the neck. For all you anatomy geeks, it’s smack bang anterior to the sternocleido mastoid muscle. It’s probably about 3 cm in diameter. A relatively small lump which is good to hear but it feels a lot bigger. These things grow slowly but surely.

The Treatment Plan…

I had read a couple of the Macmillan booklets the nurse gave me about this particular type of cancer and the necessity of having both Chemotherapy and radiation at the same time. Once again, not ideal and each with their own side effects – a double whammy.

I will be zapped with Radiation for 6 weeks, 5 days a week with Chemotherapy on one of those weekdays, staying in the hospital all day.

Shortly going into hospital for a mould to be made of my face and neck to make it an ‘exacting’ zapping and to keep me really still when being zapped.

This will all be kicking off in the next couple of weeks along with a few other scans and procedures.

Because my neck and throat and mouth will be zapped, it means a lot of potential soreness. Eating normally will not really be possible, so its fluids all the way.

I am also going to be zapped both sides of my neck to be sure (I was hoping it would be just the right side). This increases the soreness – essentially I’ll be red roar inside my mouth and throat lining – that was my understanding. Hardly surprising?

If you are a little squeamish best turn away now…

Being zapped both sides makes this worse so I will have to have a tube inserted into my stomach where I will have the luxury of pumping liquid food directly into my stomach.

Not so keen on that if the truth be known but if that’s what it takes then so be it.

There are other things that I don’t need to go into for now but I thought I’d share this little bit of info. Maybe your initial reaction wasn’t too dissimilar to mine?

Good news… I don’t have to have any teeth removed. Because of the radiation, if you have any dodgy teeth they have to be removed now rather than later. The dentist gave me clean bill of health –sigh of relief. I gave her a big smile and ran out the room.

Back to food and my diet quickly…

I have been so good with my diet these last few weeks. I mentioned at the start about feeling ravenous today when I left the hospital.

The dietician said to me “Eat what you want to eat now! Eat all your favourite foods, eat them all!” That resonated with me, as I envisage a long 2 or 3 months of feeding myself through a tube. Yep, I have a couple of weeks for my throat to heal from the tonsillectomy and then the zapping begins so I will let my diet slip just a little in the days ahead and treat myself – steak and chips I reckon.

Final words…

There’s a possibility of taking part in a research trial which I’ll tell you more about next time.

Thanks for lending an ear guys and gals. Excuse my ramblings too. My monkey mind dives all over the place when I sit down and start to think about putting my thoughts down on paper into hopefully legible sentences.

Have a fabulous Easter Weekend.

Signing off

Adex

p.s what makes me laugh every morning is that I don’t get that much post thankfully, but my post is becoming very familiar looking these last few weeks. Hospital appointment confirmations – that’s what they are. It’s always good to get things in writing – very comforting.

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14 thoughts on “Update – Hospital Visit (Oncologists) Royal Surrey Hospital, Guildford. Thursday 17th April 1030am.

  1. Rob & Karen says:

    Hi Ade, That is overall great news (although being fed through a tube kinda takes the edge of that) Enjoy the food rampage for the next couple of weeks and thank you for the update.

    Rob & Karen.

  2. Gillian says:

    Wow Ade – well done for getting all that written down and so entertainingly too! My thoughts and prayers are with you and your family as you support each other through this ‘interesting’ journey. It’s always easier when you know what you’re dealing with and can get on with dealing with it. Keep the updates coming and meanwhile enjoy those steak and chips!

  3. Anne says:

    Hi Ade – Thanks for the informative and cheerful update. I’ll do my best to find some helpful herbal tinctures that hopefully you can pop into that tube along with the other liquids. Rescue remedy sounds a good bet! Meanwhile my love and prayers.

  4. Viv says:

    Hey Ade, sounds like it’s going as well as could be expected. I remember you saying you were looking for a challenge – not the one you were expecting no doubt! – but one I reckon you can handle. I hope it all goes according to plan. Best of luck. Viv.

  5. Mahab says:

    Thanks for all that info! Really appreciate the detail and the honesty.
    Its a gift u are sharing with us all!
    Can u believe the bit that I found most disturbing was idea of them removing ur teeth. Shows how intense rest of it is to proces so ur a real inspiration.
    Smiling thinking about u wolfing down the steak n chips.
    love
    Mx

  6. amayah says:

    great to hear from you…admire you for dealing with everything with such humor…I also love the determination! I know you’ll beat it all 💪
    enjoy stuffing your face 😜 and lookin forward to more good news…
    All the best,
    Amayah

  7. Thank you for writing such an open and honest story. You are so brave and will have the strength to get through this. It does sound horrible and I will be thinking of you through all the treatment. I hope on a lighter note that you ate lots of Easter eggs! Take care.

  8. Your Mureican Family, says:

    Only you can be so entertaining, We love your spirit Ade!
    We will be praying for a faster recovery time.
    Stay strong and well,

  9. Mel Wilson says:

    Hi Ade, sorry to hear your news, but it sounds like you have the remorse to beat it. Not sure if you remember me, Mel, Andy Terry’s kid sister. Andy came to see me on Easter Monday following my surgery for Breast Cancer and told me about your plight and the blog you have written so I was very interested to read it. My thoughts are with you and your family. Keep up the good fight 🙂

  10. Sue says:

    Hi Ade, very interesting and of course entertaining blog from you. Thinking of you and miss you in the office. Looking forward to you being back asap. Sue x

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