Uncertainty

Photo copyright: Maggie May

I guess that I have been living with uncertainty since my cancer was diagnosed in the Autumn of 2009.

It doesn't get any easier as the time goes by and I wonder if every new twinge that I experience is the beginning of a new outbreak somewhere else in my body.

I was hoping that the results of my scan would tell me that I was clear of the tumour on my spine following the radiation that I had to endure, but knowing how awkward I am, I never seem to get a black or white answer and my scan results proved inconclusive.

The Consultant just said it was impossible to tell if the tumour had gone or not but the scan revealed that I had a fracture of the coccyx (tail bone.) My scan results will be sent to a major hospital in Bristol to see if there is anything to worry about. Apparently only time will tell if the radiation has worked or not.

This waiting game seems to be the story of my life these days and I must just learn to enjoy what I have when ever I can and live for the now.

Flare-ups

Photo Copyright: Maggie May

I expect that you are all wondering what it is like to go through radiation treatment.

I can honestly say that it is not as bad as chemo...... not by a long chalk.

However, when I went through chemo, I was ill for a week or so and then started to pick up each day until the next infusion.

Going everyday for radiation treatment might not be as harsh as that but it can make one feel extremely tired all the time and can cause flare-ups of pain.

As my coccyx is involved, it can get really painful. Bone pain can be excruciating so I am still on some meds for it but trying to cut down regularly depending how I feel.

The department I go to is very busy and people of all ages come here from miles around. I'm lucky that I don't have far to go.

The saddest thing is to see little children going through chemo and there are also many younger people than me and a good few are brought in on trollies. This all makes me feel I shouldn't be grumbling.

One day my appointment was cancelled because one of the machines broke down. I have been assured that I will get an extra session at the end of my treatment so there are no problems concerning that.

No one has any idea what is going on in my body. I have been told to concentrate on getting through the treatment and live for the day.

Nothing about my life is certain. I could make myself ill with worry. However, most of the time I am too tired to think too hard or go beyond today.

I do a little job or two each day. Sometimes I can only manage to clean one shelf of the fridge. Other days I romp through the house or go for a walk with no problem. There is no rhyme or reason for this...... no way I can tell in advance how I am going to be. I tend not to make any really important arrangements because I might not be able to keep them.

I am drifting through life and trying not to care.

However, I am glad to be alive.

The sunflowers were brought round by Hetty, a good friend. They lasted a long time.

They were bright and cheerful in my front room.

I am over halfway through the treatment now and hoping non of the terrible side affects (that I had to sign a disclaimer for) will happen to me.

By the end of this month I should have finished the treatment but it will go on working for a month after that. I could feel tired during that month too. Not sure what state I will be in by then. Only time will tell.

I feel I have lost my summer and am dreading the winter weather coming round so soon.

Chicken and Flowers

Photo Copyright: Maggie May

Last week I went for the first two of my 30 sessions of radiotherapy.

I didn't really know what to expect but it seems that I just have to lie very still on my stomach, after being lined up by humans .... then the machine takes over. It moves over my head and turns round and sometimes it seems dark and sometimes not. I have no idea what is going on, and can only hear the different noises that the machine makes as it goes its own way. Nothing hurts and there is no feeling when this beam of radiation is being shot into precise parts of my body. As long as I keep still all is well. If I need them to stop, then I can raise my hand and then they will interrupt the cycle. There is someone watching me all the time and obviously someone must be in control of the machine, behind the glass screen.

Before the first session, I waited half an hour in the waiting room, but last time I was kept waiting a good deal longer than that, so it does take a chunk out of the day and its best to take a book.

The department is 2 stories down in the basement so there is no daylight coming in or fresh air and whatever they use instead of this, makes me very sleepy.

When I came home from the very first session, my husband told me that I'd had flowers delivered by hand while I was away.

I had no idea who they could have been from until I opened the little card. It was from Denise Nesbitt. Some time ago, before I knew about my tumour on the coccyx........ Denise told me that one of her chickens was leaving home and heading for Bristol and could she stay with me?

I had no idea why she'd want to leave the beautiful countryside where she'd been living........ but was very pleased to receive Chicken Nesbit into my home. You can catch up with her arrival, HERE.

Chicken Nesbitt has been looking out of my dining room window since then. Occasionally she falls down onto the netting on the rabbit run and I have to untangle her feet.

Anyway...... she seemed to sense that the flowers were from Denise and her other chickens and she had to go and have a look and sniff them!

They are beautiful flowers, Denise, and I was truly overwhelmed by your kindness.

Thank you so much.

Just proves that blogging friends, however virtual they may seem to be, can be really supportive and kind and break through the ether, occasionally.

I have had another visit from my daughter and grandsons over the weekend, which was really lovely. I don't usually see them as often as this because they live nearly 200 miles away. I must have really scared my daughter when she came two weeks ago and I was in such pain. However, she can see that things have really improved since she was last here and that must have been a relief.

As it was the Balloon Fiesta in Bristol and the weather was not that brilliant, we didn't think that we stood much chance of seeing many hot air balloons over this way. However, on several occasions we looked into the sky from our road and saw great clusters of them floating slowly in the distance and we could hear the burners as they boosted their height. Radio Bristol announced that 62 took off together.

It was naturally on our local television news and we were dismayed to see that one unfortunate lady who was sleeping in her bedroom at the time, heard a noise like an explosion and found that a balloon had crashed into the side of her house. No one was hurt and you can read about it and see the picture here.

I wonder what this week will bring?

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.

The Battle Goes On

Photo Copyright: Maggie May

Some things just go on from one year to the next without too much attention. My roses are like that, appearing faithfully every summer no matter what happens to them. If only humans were the same.

The last few weeks have been difficult for me as I haven't been really well. I have tended to throw myself into other things, like the singing...... to take my mind off my present situation.

Well, I have seen the top Consultant at Onchology and I have had the results of the CT scans and bone scan that I have recently undergone, and there is no doubt now that I have a tumour on the coccyx (tail bone.) This is excruciatingly painful and I am drugged up a bit to mask it.

Well..... what can be done? I was groaning inwardly about having to have more chemo.

However, I am now on a waiting list to start radiotherapy to try and blast this thing off the bone.

It seems that I will be starting treatment next month.

There are various side effects and other organs close by might be damaged, which might mean operations and minor disability if things go wrong.

I did feel rather depressed by all this, but as the Onchologist explained, if the chemo hadn't been as successful as it was, I would have had 4 months to live at the very outside. That was in December 2009, so I am one of the lucky ones, so I have been repeatedly told, to have survived this long, against statistical odds.

This is the first time that I have been told this bit of information and if I'd known this at the time I was having chemo, then I might not have had the will to pull through.

I have a good chance of a longer life after radiation treatment and I completely trust the Onchology team.

So I am mustering up my strength and courage and throwing myself into God's hands and hoping for the best. As far as I am concerned, the sooner I start treatment the better.