What Can People Say?

Photo Copyright: Maggie May

As the week is passing by, I am reducing my pain relief considerably, and apart from my usual arthritic pain, I am enjoying the freedom from that dreadful bone pain I had prior to the radiation treatments.

Pain is the very opposite of all that is good in life.

It has the power to impair a brain's functioning. It drains your energy. It takes over your mind, your body, your thinking, your creativity.

Like the pains of childbirth, when it has stopped, the severity of it disappears somewhere into the unconscious mind and a little door is shut on it. It isn't until there is a repeat experience of it that you remember how awful it is again.

At present, I am just having to wait and see what happens next and try enjoy each day as it comes.

This doesn't come easily to me.... the born worrier.

Will IT come back?

However, each day is a gift of extra life...... a bonus.

All that I know is ..... that I feel things more intensely. My family and friends mean more to me than before. The sky, the garden flowers and colours all seem more intense than they did before. My freedom seems more important too and I am making plans to go to the singing group again and take trips to the sea.

Everything that isn't life threatening seems to be quite unimportant to me. I used to worry about the most ridiculous things. I wasted so much time doing this.

People, on the whole, seem to be friendly and supportive towards me. However, there are still some who feel terribly awkward when they spot me and would rather run into a shop than to have to say anything.

I feel it is better to risk not saying the right thing than to run away. I don't think there is a right or a wrong thing to say anyway. Just be yourself.

I don't think people find it easy to meet up with anyone who is having a close brush with death. I think its not in our culture. "If I don't have to talk about this, I don't have to face up to the problem of cancer."

They feel threatened when they get close to someone with persistent cancer. It makes them feel under threat too. "If this can happen to her, then it could happen to me. I'd rather not think about it right now."

It is a big problem. One only has to spend a short time in Oncology to realise just how common the problem is.

I hope by talking about it that I will help others to drop their barriers a bit, though much of the time I want to be treated as normal. I am Maggie, the same person as I have always been ..... I experience the same things as you and face the same fears as you.

I just happen to be battling cancer.

I don't always want to talk about it but sometimes I do because my whole life is so tied up with how it affects me and how it makes me feel.

One day it will get me but not yet. I have so many things I want to see.

I want to see my granddaughters at least get settled into Secondary school. I want to share in the joys of their new house. I want to be able to do things with them again.

Amber, my eldest granddaughter, on hearing that I had finished my treatment, said to me, "Oh good now you can start doing things with me again."

She knows that I have cancer and she also knows I've had a problem with a sore bottom. Goodness only knows what she has said at school. (Don't forget that I used to work there.)

Some people see me standing in the playground and look the other way. Some of them are work mates or parents I knew very well. They are not all like that though, by any means.

I often just open my arms and say, "Yes, I'm still here." That seems to break the ice and put others at their ease.

One person who I thought I knew extremely well said to me. How can you just keep acting normal when this is happening to you?"

Well my answer really is, "What else can I do? Do I just lie down and wait to die? It might take a long time and it would be a bit of a waste of time, don't you think?"

I am learning to laugh at this because it is a terrible problem and one that any body might have to face sooner or later.

So how about seeking out someone you know who might be battling cancer or any other disease (that people find difficult) that takes you out of your comfort zone?

You might make a difference in that person's life. More than you think.

Personalised Pain

Photo Copyright: Maggie May

How could anyone ever describe pain? It is even harder to imagine someone else's pain. It is a personal experience and surely everyones' experience of it must be different. There are different types of pain. Niggling pain, nagging pain, hot, searing pain, stabbing pain, dull, aching pain, cramping pain....... the list is endless.

My pain over the last few weeks has been almost unmentionable and almost unbearable. I put much of it down to arthritis and sciatica and ageing aches and pains. However, it soon became apparent that that there was something very bad going on as well as these other things.

Imagine having a knife rammed somewhere where the sun don't shine! Yes...... not nice. On the right side of the knife the blade is jagged and catches with every movement. A pain that makes you feel that you are being tortured nonstop.

This was the only way I could describe the pain that was coming from the tumour on the coccyx (tail bone.) There isn't much room down there anyway. Imagine having to go to the toilet and the pain that that caused me.

If you find this imaginary exercise too unsavoury, then I'm sorry but that is the only way I could describe it.

I was dreading my daughter coming to see me in this state, let alone my grandsons.

However, by the time they arrived, a few days ago, they found me rolling about like a wild animal and yelping, moaning and pleading for help.

My husband and son and my granddaughters were looking on in horror and every one thought I was not going to be here too long.

I have been backwards and forwards to different departments of different hospitals for a few weeks now and all I knew was, that I had to wait until August 11th for my radiation details to be calculated and put into the machine. This is a very delicate operation and cannot be rushed. If mistakes are made with this treatment then it couldn't be rectified later. I knew this and understood it. Every day seemed like a week, though and I was becoming convinced that I wasn't going to make it long enough to get my radiation. It seemed too far away and I knew I couldn't hang on with this pain much longer.

How much pain could anyone bear?

My daughter knew that there were certain drugs intended for the treatment of particular conditions that could beat this type of pain. It had been found out by accident over the years, so she rang up the Macmillan nurses to ask about it.

They got in touch with St Peter's Hospice which is an organisation that most people know to be a charity who help people with painful, life threatening diseases and they have charity shops all over England to support all their good work. They have hospices, where cancer patients can go for respite care and stressed relatives can receive advice and support, too. One of the great things about these nurses is that they have expert knowledge of drugs that can help people stifle the symptoms of cancer. Lets face it...... once we know we have this illness and have got the necessary treatment, we don't need to keep having to experience the pain dragging on and on relentlessly and dripping like a constant tap. Eventually pain can consume all our thinking and feeling and engulf our whole personality so that we have no energy left for anything else.

It was because of the precise description of my pain, that the nurse who came to visit me in my own home, was able to immediately recommend a very low dose of a drug for depression. The wonder drug for me turned out to be Amitriptyline. This drug can affect the messages of nerves to and from the brain to certain sites in the body that produce pain.

My doctor was asked to write out a prescription for 10mg. to be taken every night. This tiny tablet that leaves my mouth feeling like its full of cotton wool every morning, has given me a good nights sleep for the three nights that I've been taking it and I have managed to cut down on many other of my pain killers, including morphine, which I was really scared about taking.

If this hadn't worked, they were going to try a drug that prevents epilepsy. Apparently this drug can cut out this kind of pain message to the brain too.

Isn't it marvellous what these drugs can do? I haven't much patience with people who would love to go back to the *good old days*. They wouldn't have been very good for me.

It must be because of other peoples' pain that doctors found out by trial and error that sometimes the most unlikely drug could help with other types of conditions. So maybe my horrible description of my type of pain might help someone else in the future to get help.

Please, if you know anyone battling with severe pain, ask them to get some kind of advice from a specialist in pain relief and ask if they could try some of these unlikely drugs.

Ordinary GPs do not know enough about this complicated pain relief. Out of three of my doctors, only one told me this drug might help and one said it definitely would not.

I can now move forward and am within sight of my radiation date and know it is going to really happen now and in the meantime, my quality of life has improved tremendously.

We must always get a second opinion and I cannot ever thank my daughter enough for urging me to try this drug and for leaving a desperate message on their answer phone.