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 and one day before a nurses appointment the retching is so bad the NG tube comes up. I get it replaced the next day.

I’m not making much effort in eating or reducing my pain meds. It all seems so much and I’m mightily depressed these days.

I see the oncologist. Nothing much to report and another appointment in another four weeks. He says I should lose the tube soon. He’s right. I throw it up again and this time I decide to leave it out and make more of an effort to eat.

I discover ice cream….I can eat ice cream and eat lots of it.

Six weeks after I finish radiotherapy I can manage soup, baked beans, scrambled egg, ice cream but not potato which is grainy and horrid. I can drink the ghastly Fortisips too. It all tastes of nothing though. Things are improving slowly but I’m still on the morphine.

I try sipping water frequently but it washes what little saliva I have away so I try keeping it just for night time.

At night I find I get a useful time asleep if I can keep my mouth moist with some Xyligel rubbed on my teeth and couple of Xylimelts which are tablets that stick to your gum above your molar teeth slowly dissolving in whatever saliva is there. It works.

At my next appointment the doctor says there is no way I should still be on morphine. He books an MRI. He doesn’t tell me why and I don’t ask but I suspect he thought there might be cancer still there. The scope shows nothing amiss.

We discuss a PET/CT scan. This is a scan done after being injected with a fast decaying radioactive glucose and will have to be done in Cardiff. It shows up tumours.

So I have my MRI around twelve weeks after radio. I wean myself off the morphine after initially just stopping it. What a stupid mistake. I should have known better, known that I would get withdrawal symptoms….shaking and sweating.

At my next appointment I get shown both sequences. The first MRI and the second. The original tumour looks huge to me but in the second there is no evidence of it at all. I am ecstatic. My oncologist seems jolly happy too.

We chat about HPV vaccine which is being rolled out for boys in Wales as well as 13 year old girls that have been given the vaccine for over ten years. The incidence of Cervical cancer in young women has plummeted as a result. This is a real success story. He chatters on about a subject which he is obviously passionate about and I forget my problems listening to him. 

My PET/CT is booked for the next week and it will be five weeks before I get the results.

Because the radiation causes so much damage a lot of hospitals have been getting false positives at twelve weeks so many scans are being moved to 16. This is the plan for me.

I go home and keep recovering.

I look after my mouth with a gusto verging on obsession and my dental hygienist is really pleased with me.

I can eat more and more normal food and my saliva is returning a little but taste is still 

problematic.

PET/CT stands for Positron Emission Tomography/Computed Tomography

The scanner is hidden in a concrete bunker at Cardiff University hospital.

I arrive starved from the night before and get an injection of a radioactive glucose tracer that has been prepared that morning especially for me. Then there is a wait of around an hour while the marker travels round my body. The radiation decays and produces gamma rays which can be detected by the machine. Cancer cells are actively growing and use a lot of glucose so the radiation in that sugar can be picked up by a suitable scanner.

Dress warmly for your scan. That hour feels like a long time in a cold room. Take something to read.

The machine is just like a double CT scanner. One takes a CT scan, the other a scan of all the glowing bits of tumour and other active stuff like heart, liver and brain then the two are superimposed.

It is a very skilled job to interpret it; more complicated IT.



Published by Dani Akrigg

I'm 68 in 2019. Retired Veterinary Surgeon

4 thoughts on “Recovery and scans

  1. Dani I am 10 weeks post end of treatment and I have been reading your blog. I had 7 weeks of RT with 6 Chemo treatments. I have just had my PET scan and am waiting for results. My tumour was on my epiglottis and my Consultant is pleased with me so far. In the last 2 weeks, I have been getting a really sore throat? And stiffness in my jaw and neck. Saliva still not good and absolutely no appetite. Can you tell me if you got throat pain this long after treatment? Thank you.

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    1. Hi Penny. First don’t panic. 10 weeks is really early and I’m not surprised your throat is sore. Really it doesn’t sound like anything to worry about.
      I was still on morphine at 12 weeks.
      We are all different in our recovery but there is a common theme. I was completely disinterested in food for six months. Food was fuel. Sad really but it does get better.
      My throat didn’t settle for weeks.
      Have you been given jaw and swallow exercises to do? They help with stiffness and I was told to do mine for life.
      My saliva took months to improve too. Chewing sugar free gum worked wonders for me.
      I can recommend BioXtra mouthwash which is refreshing and mild.
      Xylimelts are pretty good for keeping your mouth moist at night. I started off with two and even now I use one at bedtime.
      So it sounds like you’re on track.

      I didn’t have my PET/CT till 16 weeks.
      I hope this puts your mind at rest.
      Keep in touch?
      All the best
      Dani xx

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      1. Oh Dani thank you so much for your great reply!! Honestly I think I have tried to do this thing too much on my own. I haven’t really talked to anyone about how I’m feeling, or when things are worrying me. I know you are right. My throat has good days, and bad days, but it was just so sore tonight and I didn’t really understand why? I suppose it is still just healing. I seem to be clearing my throat more as well? Also I think I must be more careful about what I eat. They are taking my RIG out next week and maybe I’m so worried that I am eating enough I am trying to get back to my old diet too quickly? I must remember to do the jaw exercises too. Thanks so much Dani. Sending you big thankful hugs! Xxx

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      2. Yes just take things easy with food. You need to heal.
        We all need some sort of help with this. People who have been through the same.
        Have a good read of the Peter Harvey article. It really resonates.
        Be kind to yourself.
        Hugs back. Xx

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