Radiation side effects for neck treatment

[GH]

Radiation side effects for Dummies GH 2009 Background: • Diagnosed with left tonsil cancer on 27/02/2009 • Left neck dissection performed on 12/3/2009 • Started radiation treatment at Perth Radiation Oncology on 18/05/2009 • Finished radiation on 08/07/2009 Like a lot of cancer patients I spent a good deal of my time researching on what cancer would do to me, either through surfing the net or reading material from various other sources. I have always refrained, and do still stay away from blogs. Unfortunately there is too much quackery on the blogs that needs to be checked. I was lucky in the sense that I never believed that I could possibly lose the battle with cancer, even though I had been a chain smoker for 25 years. This gave me an unbelievable naivety about the whole process. My rationale for documenting my radiation experience is simply to offer some help, assistance & reassurance along the way for other sufferers. My body went through some strange experiences with treatment, some of which made me verge on a full blown panic attack. In hindsight, somehow the mind & body cope but it is easier if you know that somewhere someone has gone through the same thing. The other thing that astounded me was that sometimes what didn’t work early on in treatment did work later or vice versa. Nothing is constant! I hope it also highlights the absolute necessity to run everything past your oncology nurses and Doctors. I took the view very early that they were the specialists and that as such, I would trust their judgement. Our well meaning family and friends will also offer suggestions and alternative remedies, If you think they have merit, run them past the oncology team before trying them, they are very diplomatic and will give you their honest opinion. I constantly thought that there was always some poor bugger in a worst situation than me, I am forever thankful for the support, strength and love I get every day from family & friends. I still believe I am blessed. Important notes •Pain - don’t be strong, pre plan. I never used to take aspirin but after a talk with a nurse at SJOG in Murdoch, I decided now was not the time to be a hero. I simply didn’t want my family to see me in pain. I had Panadaol soluble on hand and the doctors supplied me with stronger pain medication so I had it on hand when needed. •Never suffer in silence – Always ask for advice from nurses or doctors. I can’t recall an issue that they couldn’t help me with. I can’t praise them enough. •Constipation Senokot tablets plus the fact I was using liquid food supplements made it a non issues. •Dry Mouth – Started fairly early, from week 2 til 5 I found good relief from Grape seed oil & vanilla essence but from week 5 on I could not take it as I would gag after every use. I had tried all the other sprays but I found them disgusting. After radiation treatment I will return to grape seed oil and once I get mix right this will be ok. •Dry Nose & Sinus – Started last week of radiation. Nurses gave me Nozoil nasal drops which gave me instant relief. •Depression – No matter how up you try and be there will be days when you are down. My strategy to deal with it was to simply lie down. A lot of my feeling down was bought on through not being able to sleep during the night. There is no point in trying to bluff your way through. Your real friends can see past the bulldust anyway. Be honest with yourself & everyone else. If you don’t feel up to being centre of attention – DON’T •Sleeping – I used Restavit every 2nd night to help. No script required •Keep occupied – when you feel like it. I bought an IPod nano and started learning Indonesian on the net. DON’T put yourself under pressure. •Fatigue – I found when I was tired I had to sleep no matter what time of day, just go with what your body tells you. •Skin – Dry skin treatment - as I had psoriasis prior to my cancer I was very aware what would work for inflamed skin. I still swear by Sorbolene. Dermadrate & Cetaphil also help as a backup. •Skin –washing. I used Aqueous cream to wash radiation burning on neck after soaking with a cold towel to draw the heat. I did twice a day. •Life for your partner – It’s tough for them! I would have been hopeless without Jule. The only relief she got was when I convinced her we need to sleep in separate rooms so at least she could sleep at night. •The Gunk – Comes on about week 6 or 7 into radiation and is revolting, plus it’s usually when the throat is at its most inflamed. I found I needed to constantly cough it up. The only way I could get some relief from it was to clean and rinse my teeth with Biotene and then gaggle with salt water, Vicks inhalers helped with breathing. Unfortunately this is at worse at 3 – 4 am and is coupled with a very sore throat. Simulation Activity discomfort pain Simulation 2 0 Face mask 10 0 Eating Normal Sleeping Used Restavit Fatigue Nil taste Limited change Dry mouth Early stage diet Normal Skin Normal Notes: Had a panic attack from mask, just from claustrophobic feeling. Discussed with staff to help allay my fears Use this time to add weight for later on in treatment Week 1 & 2 Activity discomfort pain Eating Normal 2 0 Sleeping Normal 2 Fatigue Normal 1 taste Normal 2 Dry mouth Early stage diet Normal Note: Gained weight Week 3 Activity discomfort pain Notes Eating Limited 5 0 Lost 3kg Sleeping disrupted 5 0 Fatigue early stages 3 0 taste No food taste 6 0 Dry mouth Water only 6 3 diet Soups & stew 6 Note: Gargle with salt water to prevent tooth decay Visit dentist for check up Week4 Activity discomfort pain Eating Limited 7 0 Sleeping disrupted 5 0 Fatigue 5 0 taste No food taste 6 0 Dry mouth Water only 6 3 diet limited 6 Note: Unable to eat, nausea is an issue with all food types Continue to gargle with salt water to prevent tooth decay, although water makes me nauseous and gag Week 5 Activity discomfort pain Eating nil 9 0 Sleeping disrupted 8 0 Fatigue 8 0 taste No food taste 9 0 Dry mouth Water only 9 6 diet Jevity only 6 Note: Started to produce gunk in mouth, sip water only as drinking water makes me nauseas Gastro tub fitted, all feeding performed by tube. Lost 10kg Week 6&7 Activity discomfort pain Eating nil 9 0 Sleeping disrupted 8 0 Fatigue high 9 0 taste No food taste 9 0 Dry mouth Water only 9 6 diet Jevity only 6 Note: All food by gastro tub, lost 3kg but tube feed takes pressure off weight loss concerns Gunk in mouth & throat excessive particularly in early morning. Nasal dryness also developed. Able to drink water again

[debstar]

wow.. that sounds amazingly excruciating, a very honest account and something that is hard to read. its a long hard road thank you for such a well written journal its helped us to know what to expect,, however hard it is to read, at least we now know .I hope things are going well with you? and that your battle with this dreadful disease has been won? we both wish you well..and thank you for your wonderful post. best wishes from debstar and Terry