Frustrations 11th August 2013

2 minute read time.

I am becoming increasingly frustrated by the day.  I have been told that I will get worse for 7-10 days after radiotherapy as the effects will still be in my body.  But nobody has defined what worse means.  They probably don't know as everyone is different, or they don't want to worry me about something that may not happen.  So I am in constant anticipation of something bad happening.  The nurse said last week that 7-10 days is not precise.  I should allow at least 14.  Then I will turn this corner they all keep telling me about.  I presume that means the gunk in the mouth will disappear and I can start trying to drink again, and perhaps try some food.  At the moment I am only allowed small sips of water as I must not swallow the gunk.  Today is day 11 and I am getting impatient.  I am getting through a frightening amount of paper towel.  The corner is not in sight.

And now I have a dilemma.  I really need to go and see my parents this morning.  There are household things to sort out.  On one hand I think it will reassure them to see that my neck is much improved.  But my voice is worse than last week and I don't want them to know how bad my hearing is.  We decide to go.  It is a very frustrating experience.  It takes about an hour of passing a notepad and pen between my mother and I to just sort out a few basic things. 

Then we all settle down for a chat.  Except I can't join in properly.  I can make out the odd word and I think I have the gist of what is being said.  I know my mother is saying that there is more in the papers this morning about the baby, isn't it all exciting?  My father and my husband are clearly uninterested in this topic of conversation but I want to join in.  I pass Mum a note to say that I am excited too, I hope it is twins, I can't want to see the cubs.   I get a note back.  It says Royal Baby not Panda!!  If this happy event materialises I would like to go to Edinburgh Zoo next year.  Before I got ill such a trip would have been easily achievable.  It had even been partially planned in hopeful anticipation.  Can't imagine doing it now.

Lastly I am extremely frustrated at my lack of knowledge of basic biology.  I have never had any regrets in life before, but I am now wondering if I should have tried harder at school.  I failed my biology 'O' level.  Never understood any of it, and I still don't.  It never seemed important till I got cancer.  Was amazed at the location of my stomach when they inserted my feeding tube.   Still don't understand what my lymph nodes are or how my immune system works.   Or how the ear, nose and throat are all connected up.  There are days when I feel stupid and inadequate and this is one of them.  There is so much I can not do.  I can not ride a bike, drive a car, climb a ladder, cook anything decent, do needlework (another failed 'O' level), use our DVD player, programme the Hard Drive Recorder, or operate a digital camera.  I do have skills but they all revolve around work.  I may never be well enough to go back to work. 

Anonymous
  • FormerMember
    FormerMember

    If you want to know more about basic biology, you could always think about doing an introductory course - via the Open University or a local college, perhaps - when you're feeling well enough to do so.  Could be an interesting thing to do?  There's lots of things that any person can't do (I'm pretty certain I'll never be able to do needlework!) and your list doesn't seem especially unusual - though if there are things you'd very much like to do, you could always try to learn?

  • FormerMember
    FormerMember

    Hello Margaret.   Well having ' been there and got the tee-shirt ' I can sympathise with the effects of the radiotherapy, especially the gunky mouth and loss of voice. Yes, it does take some time for the RT to peak before it starts to settle down ... it's the proverbial ' piece of string ' question as to when it all happens and that corner is finally in sight !

    Why don't you post in the head and Neck Cancer group for more help and support ? We've all been through it and can offer something to help ... for example, try a bicarbonate of soda mouthrinse to help cleanse the horrid mucus or a mild salt rinse which is also a natural cleanser.

    Hope that things improve for you soon, take care.

    Joycee x

  • FormerMember
    FormerMember
    Hi Margaret, it's mamma here from atheists group, I'm cyber stalking you. It's never too late. Remember, it only took you minutes to find god. The suggestion of open university is a good one, but if that is a bit intimidating why not try BBC bite size. It's for gcse's. I used it with my son to help him revise. You can dip in and out of subjects and there are quizzes, which are quite good fun. Climbing ladders is overrated by the way.
  • FormerMember
    FormerMember

    hello just to let u know it comin g up to a year since my surgery and my chemradio finished in nov 2012 there is light at the end of the tunnel i am now eating almost everything as before but eat different due to dry mouth but even that gets better, its taken time. I have learn we need to have patience and take one day at at time.When i read about your journey i realise how much i have improved. We are all different in our progress, you will get back to normality but not quite the same as before. hope this helps 

  • FormerMember
    FormerMember

    hello just to let u know it comin g up to a year since my surgery and my chemradio finished in nov 2012 there is light at the end of the tunnel i am now eating almost everything as before but eat different due to dry mouth but even that gets better, its taken time. I have learn we need to have patience and take one day at at time.When i read about your journey i realise how much i have improved. We are all different in our progress, you will get back to normality but not quite the same as before. hope this helps