Visit from the nurse

2 minute read time.

FormerMember

20 Aug 2013

Had the weekly visit from the nurse today. Usual check up and maintenance of feeding tube which I always struggle with. So water in the balloon which stops the thing falling out is changed, tube is twisted round to stop it sticking, bicarb squirted down to clear blockages, and lastly the site is inspected for infection. As I suspected there is a problem again. My skin keeps trying to heal and grow over the site, something to do with regranulation. We keep getting it healed and then it starts up again. So back on the steroid cream 3 times a day for 10 days. Weight recorded to give to Dietician. Lost some this week, now at lowest weight ever. Then a little check up which will be reported back to my team. No problems with mouth, neck fine, gunk slightly better, sleeping better, energy levels improving, voice less croaky, hearing worse. So we haven't turned this mythical corner and it is not in sight yet, which is why I have given up reporting daily progress.

So instructions till next week when my check up will take place at hospital. Do not yet attempt to swallow any water as all this is doing is making me cough and choke. My body will tell me when the time is right. Do not put anything in ears. I now have a fact sheet about my ears. I have "glue ear" which is a build up of fluid instead of air in the middle ear. It will clear naturally in the next 3 months. Otherwise there will be a minor operation.

I am slowly adjusting to the silence I now live with. Fortunately the ringing in the ears has stopped. I have plenty of things to keep me occupied, some of which I haven't done in years. The days pass quickly. I have enough novels, jigsaws and puzzle books to keep me occupied till Christmas. My concentration levels are better and I've even managed a bit of freelance work. Friends and family keep in touch by email, I email my husband now for complex discussions. I am rediscovering the art of meditation and I find this helps the most. I used to be into that heavily in the 1970s, but I gave it up when my Guru went to India. Fortunately I do not need him now as I have finally managed to hear my inner voice. My mind is calm and I am almost at peace with myself. My husband thinks I am going mad.

The only thing that I am struggling to come to terms with is that I regret agreeing to my treatment. Not to the neck dissection that removed the tumour, but to the chemo and radiotherapy that came after. The op cut out most of the cancer and I could have recovered from there enough to have my old life back intact by now. The nurse says that if I had walked away and taken my chances then worry of the cancer spreading would have always been at the back of my mind.

I disagree. Nobody can tell me if my cancer will come back now after this treatment, or if I might get cancer elsewhere in the body in the years to come. Like nobody can fortell if I will get any other illness in the future. You learn to live with it and fortunately my Guru taught me how. I told the nurse to try meditation. She is recommending me for counselling.

FormerMember over 11 years ago

Margaret, it's good to see that despite the challenges you remain very intact of spirit. Despite husband questioning your sanity, and nurse assuming you need to talk to someone skilled and impartial, your reasoning does make sense. Mamam
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FormerMember over 11 years ago

Margaret, it is indeed a long-haul journey and you are doing just great ... so don't rush things, it just takes time. Yes, in some ways I also regret having the radiotherapy - my surgery was a ten-hour complex procedure but compared to the RT it was a doddle - just happened that I was one of the unlucky ones who suffered from a particularly bad reaction to the radiation. Typical.

I have had in-depth conversations with my husband about this and I have to agree that if I had refused consent to the RT then there was a very good chance of my cancer eventually returning ... the cells can be so small and won't be picked up by any scans. As he pointed out, if they thought I could get away without the treatment, why spend a fortune on me by using these machines ?

His other comment really brought it home to me when he said ... " perhaps I'm being selfish and I know how you have suffered, but they have given you back to me "

Enough said ...

Joycee x
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FormerMember over 11 years ago

Margaret, I come away from this entry with conflicting reactions.

One is: Good for you. Go tell 'em.

The other is: Don't regret the treatment. You are enhancing others' lives by your posts.

Some days when I feel sorry for myself, I read what you patients go through. I tried to get Laing to keep a diary of his chemo as a record "so we could look back at it" (was I living in hope or trying to give him hope?) and to be able to remember should he have more treatment, and also to help others (that was my idea unexpressed to him). It turned out to be half hearted and eye wateringly nice about me.

Your journeys are what none of us wish to make, but should we have to face it, it is individuals like you who make the difference. Macmillan should really try to bundle up some of these blogs you lot write. Some of you carers and patients are amazing. Heroic is a word overused for those who do nothing special except run faster or jump higher than others.

You are all truly heroic.

What you do is special.

We lesser mortals stand in your shadows.
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FormerMember over 11 years ago

Wow. All of those comments have bought a tear to the eye. Thank you. After I wrote that entry yesterday I did what I perhaps should have done days ago. Asked my family and friends what they thought. Was it the right decision? Husband isn't sure. Mother and two friends say no. Rest either yes it was, and one helpfully reminded me that I made the decision easily at a time when I was a stronger person.

As in most cases in my life the best words of wisdom have come from my Father. He won't say what he thinks because his opinion doesn't matter. Decision was made and can't be reversed. So forget about it and move on. Thanks Dad. I will.
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FormerMember over 11 years ago

I think you are coping amazing well. I'm sad that your biggest love - apart from tennis - is your music and stupid glue ear is affecting that!

I think you've made the right decision re: treatment. You've got to give yourself the best possible chance going forward. Yes none of us know what is around the corner but you'll feel better knowing you've given it everything for sure. This is just part of that rehabilitation process - although it is awful, it is an investment in your future. If you had just had the op and been feeling fine now, and something did happen in a few months, how would you feel? You'd have to go through this at some point anyway, so the sooner the better in my opinion :)

We had the 'treatment' or not discussion with dad, but as his was not curable, it's a different discussion to have. I think if it was me, curative i would go yes all the way, palliative I'd have to think long and hard whether I would put myself through it.

Chin up xx
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