I can’t stress how important it is to keep well.
Radiotherapy will make you tired, very tired. You have to rest and let your body cope.
The cancer is going to take a year out of your life.
Control the pain. Ask for different pain relief if yours isn’t working.
Some people seem to have a relatively easy passage through this. Some don’t. I didn’t.
Keep eating somehow by mouth or tube or PEG. Nutrition is important to help you fight the rigours of treatment.
Somewhere down the line you will get exercises to keep your swallowing muscles working and to keep your mouth open. Radiation can cause scarring in your throat muscles and in your chewing muscles leading to difficulty getting food down, it going down the “wrong way” and to trismus, or inability to open your mouth wide. Do them.
Quite a few people are advised to do them after treatment finishes but I was told to start straight away.
There is lots of support from your team so ask them for leaflets if you haven’t got any.
The night before I start Stan and I have the thickest juiciest steak from our Dexter supplier. Absolutely wonderful. I wonder how long it will be before I can enjoy another? That will be a day to celebrate. I look forward to it.
The Singleton looks like a run down pre World War ll relic with various stages of building improvement dotted about amongst the dilapidation but the radiotherapy block is modern and full of smiling staff. The waiting patients are another matter….how depressing! I spent a lot of time hanging around here, but there was a cheerful cafe so I could watch other people eating and having cups of tea!!
12th and my first day under the beam of Linac 1
I get clipped down and away we go
The treatment room is bright and airy, music plays…heaven knows what, something cheerful.
There’s a nice picture of countryside on the ceiling. Pity I can’t see it as I’m in the wrong place on the table. I can see the head delivering the X-rays move round me. I can see where the beam is coming from and I’m fascinated as I watch the shape of the metal leaves change as it passes. It takes a couple of minutes and it’s painless. Bring it on!
This is Capcom. The nerve centre
Overnight my submandibular salivary glands scream out and swell….alarmingly.
I have another four treatments and see the head and neck team every Thursday from now on.
The Linac team are slick and fast. If there are any problems with treatment they are your first port of call and are a direct conduit to any member of your team.
I do my mouth a swallowing exercises three times a day
Christmas is coming soon and my daughter will be here from Berlin with her partner. I’m so looking forward to seeing her. I have largely isolated her from the horrors I will face. It’s not hers to worry. I actually feel ashamed of my condition and want to share it with nobody but my husband. I thank God my mum has gone in a way. I know what a mother’s love is and she would have been unbelievably wounded.
It will be a strange Christmas. I should still be able to eat well enough so I can share the festivities, though they will be muted.
More of the same with Christmas Day off.
The mask is comfortable enough though quite tight.
I’m beginning to get a sore prickly throat towards the end of it. Everything else is as it always was.
I’m still managing to eat pasta and sloppy stuff, though I can’t taste much.Stan cooks the most marvellous Christmas lunch and I eat some and enjoy it. No alcohol though
Still doing those exercises
Takes me past Christmas and into the New Year
Before the week is up the pain in my throat and mouth has been increasing and I can’t swallow properly. I have ulcers on the roof of my mouth, my tongue and across the back of my throat. My saliva has all but dried up to be replaced with a thick mucous that I can’t swallow so have to spit out. I go through industrial quantities of tissues. By New Year’s Eve I am in trouble. I haven’t eaten or drunk anything for two days and I’m admitted to a ward to get rehydrated and have an NG tube fitted. Not coping well with the pain and I’m very miserable and in tears until the nurses get me on to a drip with Paracetamol added. They and the doctors are so busy on a big cancer ward.
I shouldn’t moan, The other three ladies on the ward are in much worse nick than me.
I spend four days there getting stabbed for blood, wheeled to radiotherapy daily, not getting any sleep and generally feeling miserable. I keep the curtains drawn around me and it’s two days before I venture any words to the other occupants. One lady has “incurable but treatable” lung cancer. Her chemotherapy threw her into heart failure and she is still cheerful. Another lady was flown half way round the world interrupting her cruise when she became ill and has been told she will never walk again.
I feel humbled. I have a chance still, for heaven’s sake.
My husband visits daily. He comes so far I tell him to have a day off at home.
I have a bed by the window and the view across the bay to The Mumbles is beautiful.
I watch the fireworks bring in 2019 and wonder what it will bring.
The NG tube is in place and I’m shown how to dose myself with nutrient drinks and expected to be able to swallow some myself. I have been given Fortisips. They are disgustingly sweet and sickly and thick. Diluting them with a little water seems to help but the first one I manage stays down for ten seconds…..oh dear!
I have to persevere, they are feeding me and enabling my body to fight the radio and to heal.
One day, waiting in my wheelchair, for radio, I meet a man who has had his last treatment. He looks OK to me. Perhaps I’ll be OK? I do envy his imminent freedom.
I go home on my birthday with an analgesic plan and enough drugs to fill a carrier bag.
Looking inside I find a pharmacy
A few words of advice
If you have pain deal with it. Don’t suffer, the drugs are there for a reason. Take them.
My saliva problem continues. If I try to spit out the stringy stuff it just hangs there defying gravity. More tissues and I keep a paper bag by the bed to throw the overnight used ones in to be burned on the Rayburn in the morning.
Not sleeping too badly in the arms of Morpheus.
I’ve actually seen a doctor, my oncologist’s registrar.
I’ve been mithering at the Linac staff and the Macmillan team to get me the results of my chest CT. They keep telling me that if there was anything wrong I wouldn’t be getting treatment yet.
Finally! The CT shows I have two pulmonary nodules. Good grief! More to worry about! Metastasis springs immediately to mind, even before she has the words out of her mouth but I’m assured that lots of old people have them and they are harmless. They will repeat the CT in three months.
The pain in my mouth is getting worse. Stan and I have worked out an analgesic schedule and all my drugs go through the NG tube. I feel constantly sick, the anti nausea drugs don’t work and I sit on the sofa head bowed and semiconscious most of the day. When I was told radiotherapy made you tired they weren’t wrong I’m not even half way through!
This is a snip of what I’m taking
09.00 PARACETAMOL AND METOCLOPROMIDE
09.30 MST (long acting Morphine)
10.00 OROMORPH 3MLS (Morphine)
14.00 OROMORPH 3MLS
15.00 METACLOPROMIDE (for nausea)
18.00 OROMORPH 3MLS
21.00 PARACETAMOL AND METOCLOPROMIDE
OROMORPH ONCE OR TWICE IN THE NIGHT 3MLS
EVERY TIME I SPIT THROUGH THE DAY AND NIGHT I USE BIOTENE SPRAY. ITS ACID AT pH 5.5. SHOULD I BE LOOKING AT SOMETHING MORE ALKALINE?
I never got an answer to this but discovered AS Saliva Orthana from the MacMillan community. This has a neutral pH so shouldn’t play havoc with your teeth
In addition I have all sorts to anoint my mouth with. I have a slippery mouthwash to soothe and Difflam mouthwash which has some numbing properties so that I can swill my mouth out before eating. What eating?
There is also some Caphasol for the mucositis which is what the oral and throat ulceration is called. I have to use Durophat high fluoride prescription toothpaste for ever now as low saliva predisposes to dental decay on a major scale. Funnily enough I’m managing to keep my mouth clean with floss and a gentle electric toothbrush. You just have to experiment with what you can do. Some people have found a gentle toothbrush called Curaprox from Amazon really helpful and a water pic might be better than flossing. I bought one but never used it.
I’m hooked up to a feed pump at night and sleep in the spare room now.
Stan does it all for me. He feeds me, gets my meds in on time, holds me close to him. I’m a wreck. Self pity, crying it’s all I can seem to do.
As you can see, I’m not a very brave soul
I’m still trying to get out and about and get up to our field occasionally with Stan and the dog.
Is more of the same
Getting pain under control has been a bit hit and miss but things seem to be a bit better now.
The skin on my neck is reddening a bit but no more. I keep it moisturised with Diprobase.
The Caphosol seems to help with the stringy mucous and the ulcers quite a lot, anyway I feel more comfortable and talking is easier. Perhaps its the morphine?
A little word about morphine. If you are taking that take laxatives. Opiates slow your gut motility down badly and the last thing you want on top of all this is to get bunged up.
I found Laxido gentle enough but never took as much as my team recommended.
I notice my hair has fallen out at the nape of my neck and I’ve got no more fuzz at all left on the back.
I go in and out of the linear accelerator in a dream. I’m beginning to hate it despite the good I know it’s doing.
Ive lost a little weight and the nurse team have a go at me about it. I can’t physically take as much nutrition through the tube at night as I’m supposed to so lie about how much I’m taking.
The Registrar takes a look at my throat and says, “yes, pretty awful!” She takes a picture of it and shows me. Yes……I agree!
Home straight now. I’m counting off the days. It’s getting really uncomfortable lying on the treatment table. I count the seconds and have to breathe through the rising panic. I can’t look that bloody machine into it’s green eye any more and screw my eyes tight shut against it and the tears welling up.
My neck has held up well showing little crusty spots over a lobster red skin.
At last it’s over. January 23rd 2019
The guys on the Linac offer me the mask to take home. I have seen people leaving with them in bin liners. I don’t want mine, it’s done its job and I can’t wait to see the back of it.
I see the registrar for the last time. I get a good check over with a warning that the radiotherapy continues to work for about two weeks and that these two weeks will be worse than the last one.
I go home, sleep in bed for two weeks, and Stan keeps me alive.