Archives for category: cancer

I walked into the Long Room in the Public Hall, Liskeard and was confronted by an elephant. There he was, Gilbert the elephant, standing proudly, surveying the plates of cakes set out in front of him.  Mugs and quotes littered the table, surrounded by women in deep discussion. Could I get past and sit down without interrupting or disturbing the elephant?

But that was the point of the day organised by Confortia- talking about the elephant in the room- death and dying.

Death is the biggest taboo subject in our society today. We have given our dealing with it over to medical staff who try instead to prolong and save lives. Where it used to be part of the everyday, now we strive to put it out of our minds. We have made death something to be feared. We are scared to face the reality of our finite lives. And in consequence, we refuse to talk about it. Especially to those, our loved ones, who are nearing the end of their alloted span.  Perhaps they want to talk it through but don’t want to upset us. We don’t want to admit that we are losing them. And those of us facing our own demise are wanting to spend the time left living life to the full, not wanting to think of the time when we are not here to offer advice, comfort, love. All of us caught in the tusks of the elephant in the room.

Confortia is a not-for-profit organisation of older women based in East Cornwall with a great deal of experience and knowledge around death and dying, who feel concerned at many of the issues around the subject today, and feel passionately that they want to see improvements in:

  • opportunities for people to talk & share their concerns in a safe environment
  • the choices available to everyone around end-of-life and after-death care and support
  • the availability of appropriate and user-friendly information about death and dying matters
  • understanding where and how to access information and support.
  • ( http://www.confortia.co.uk)

They were founded two years ago and have since organised talks, Death Cafes, concerts etc all to raise awareness that dying matters. This year they held a day symposium during Death Awareness Week on the elephant in the room and Gilbert the elephant was there to greet me.

Devouring lusicious lemon cake and gorgeous gluten free fruit cake we shared experiences of death and being with people as they were dying.  As always when describing human stories there was a little laughter, a little sadness, a lot of support and caring. One was propelled into caring for those nearing the end of life.

I had a look at the Wall of Words, writings on death and dying by those who were facing it or those left behind. Some struck home.

Lynne Dunne, qualified in both nursing and law, took us through ‘Advance Directives’ or living wills. She led us step by step through the maze of acronyms that seem to proliferate anything medical these days. Basically, you have to prove you are at that moment in time, mentally capable of understanding what is said to you,  making a decision and communicating that decision in some way to others.

Discuss it with your family. Let them know in which circumstances you want it enacted- you have to write it on the form. Lodge a copy with your GP and with your consultant so it is with your notes. Also make sure your family know where your copy is. However, you can revoke it at any time, if you say you don’t want it enacted. You will have to make a new one afterwards, but better safe eh?

In the Death Cafe that followed ( I have to admit I secretly wished Mort to appear- he doesn’t have to bring his scythe, I have one rusting in the garage!), the talk ranged from cultural traditions, to family feuds, to burial grounds. All fuelled by more coffee, tea and lots of  scrumptious cake. It was a relief to be able to say, you know, after my diagnosis I went on a search of the cemeteries to see where I would like to be buried and no one think it odd. They laughed when I said I dragged one of my sons with me to a couple of them and that we walked up and down searching for the Jewish sections, (we didn’t find any headstones, so I might be the first but not for many years yet). That it seemed was almost normal. The fact  I have a bag of earth from Mount Zion, bought on my first visit to Israel when I was eight ( I had read a story), ready to go in the coffin with me that my family have known about forever was accepted as yeh, we can see that. This I know is not normal- you don’t have to tell me.

In the evening, Independent Funeral Celebrant, Kate Ward, was giving a talk on her work  ‘Celebrating Life’. Followed by discussion, more cake, more tea. It seems Gilbert loves his cake.

 

 

 

 

 

 

I have just written to my MP, Sheryll Murray , asking her to attend the debate on Monday about the NHS. I don’t think she will go. I have told her what happened to me this Thursday. I don’t think she’ll care beyond the tut tut stage. And we should do something about this. Here is her chance. attend the debate on Monday and do something to help her constituents.

Ah, I forgot. Even though she is my MP, the hospital I attend is in Derriford, Plymouth, so out of her jurisdiction. So she doesn’t need to do anything.

We all know about bed blockers- those unfortunate elderly people who are badly served by social services. We all know that hospitals are at danger level, dealing with so many A&E cases, there are no beds for preplanned operations. We all know about it, but until it happens to us, we tut tut and then allow the next atrocity to grab our attention.

A week ago, my preplanned operation was cancelled as there were no beds available on the weekend- a day they had chosen because the hospital was likely to be less full then. So don’t worry, Jeremy Hunt, the doctors and nurses were there, working twelve hour shifts. They couldn’t do their job because of the dreaded bed blockers. I understood. I was upset because I had prepared myself for general surgery. But I understood the pressure the hospital was under. I went home and waited to be called.

They rang on Monday. Come in Thursday, same time, same place, same nil by mouth. You’ll be staying overnight.

A neighbour dropped me off. He wanted to come with me in case the same thing happened as last Saturday, when they told told me it was cancelled just after I arrived. He wanted to make sure I would have a lift home with my little case. Don’t worry, I said. They won’t do it again.

There I was, the same receptionist, the same waiting room, the same 3/4 hour early. As I chatted with the women there one mentioned she had  been cancelled last Saturday too,but she had been caught as she was going out of the door.  Both of us had been called for 11:30.We watched as the waiting room filled up with day cases. Everyone had a small bag.

It soon grew so crowded that as someone’s name was called in to talk with the nurse, their seat was taken by a newcomer. I watched one couple move around the room, the chairs obviously not comfortable enough for their Goldilocks personas. They move at least four times, each time after someone had been called. Perhaps it was superstitious, those people had been called and if they moved into the lucky seats they would get called earlier. There was some comment from the crowd when a prisoner went in, handcuffed to a prison officer with another officer carrying his bag. It wasn’t long before he came out and went. The muttering died down.

I was called into the room with the nurse who went through my details. I had attended a pre operation assessment clinic the week before my original date. The nurse there was kind and supportive. This nurse was kind and supportive. I returned to my seat, not taken as it was one on its own, but a man in a wheelchair was now parked beside it. We smiled and then ignored each other, as one does. A little later the nurse came out and called me into the room again. They have decided that I wouldn’t need to stay overnight. There weren’t any beds. Could someone pick me up? Yes, I said, surprised, what time? Around 6pm.

Back in the waiting room, the women begin to chat as one does when stuck in a lift with the same people for hours. We count off who have been called to the nurses, who have been called in beyond the double doors. That is our aim now, to get called in beyond the double doors. My crochet went into my bag as I concentrated my energy on those doors. Hurrah! The lady next to me was called, then another, then the man opposite. Finally I was called by a woman in green scrubs- promising.

The anaesthetist takes me into a room and goes through my notes. She is rapidly followed by the surgeon.  He goes over the notes he made three weeks ago. You may be having the mitomycin-C wash or not. It depends what we find. He says, you are staying over night. I say no. I had been told I was going home afterwards. Oh, he says. I don’t think so. I will find out. Do you want to go home? I say I want to be safe.

We emerge into another waiting area. He doesn’t know what to do with me, leave me here or send me back through those double doors. He asks. They decide to let me sit in this waiting room, as a favour.

The women in this waiting room have their bags ready. One by one they are taken into the changing room and come back in their dressing gowns and support stockings. We laugh and chat. It sounds like a WI meeting, says a passing doctor. One by one, we say good luck as they are taken off for their surgery. Until it is just me and the elderly lady. She is changed into her dressing gown and support stockings. I am still in my day clothes with my bag at my feet.

The nurse who had asked me earlier if I could be picked up tonight calls me into a room. There are no beds. They have someone sleeping in Recovery. There are lots of admissions through A&E. It doesn’t look as if I will be having the op after all. Can I call my husband and get him to come and collect me?  I can wait in the outer room.

I go out of the double doors and hide behind the rows of high backed chairs so the children in the area don’t see the tears rolling down my cheeks. I text my husband. It is now 3:45pm. Can you come and get me now? He is an hour away.

Half an hour later my name is called. A different nurse is there at the double doors. I thought I was going home, I say, my husband is on his way. I’ve been told to get you ready for theatre, says the nurse who takes me through a side door into the changing area. She puts my stockings on. My bag is locked away. I sit in my dressing gown on my own in the waiting area. My husband arrives as I am still sitting there.

I am called to go through more doors. He is told it will be a couple of hours and he will be called to collect me. So he goes home.

I come round to find a catheter has been fitted for the mitomycin-C  chemo dose. They ask how many loos we have at home. Two? Oh good, because you need one to yourself. The booklet I had been given three weeks ago had said bleach needed to be put down the loo after urinating for at least 24 hours to make sure all the chemo had been passed. It would burn unprotected skin. I watch as the purple liquid is squeezed into my bladder. It hurts but I have to hold it inside for an hour if I could manage. I am given lots of pain killers.

I can hear the elderly lady as she is taken off to her ward. I hear another day case being discharged and the doors pinging as she leaves. I am alone in Recovery. There are no evening cases. The unit will close at 10 pm. My husband rings and is told to come in and park at the drop off area so he  can collect me.

The mitomycin-C is drained out of me and the catheter removed. All they are waiting for now is for me to wee. I sit up  and have a cup of tea. My head is spinning. Great, I think, this is my Meniere’s kicking in. I sit on the commode. I drink another cup of tea on the commode. I am shaking. It is getting late and I haven’t weed yet.  They have found a bed for me if I want it.

I don’t know what to say. Am I taking someone else’s bed who will need it more than me? What is the right answer? I want the comfort of being in my own home, but that is over 40 mins away. To go home and be worse? To stay and block a bed? I have to make the choice.

My stomach makes it for me and I am violently sick.

I stay overnight. I have a full blown Meniere’s attack and sleep most of the morning until my husband can come and get me. But from the moment they bring me a hot drink in the morning till I leave, I feel dreadful. I am a bed blocker. I have taken someone’s bed. Someone who had an emergency in the night won’t be able to move from their trolley to a bed because I am in it. And because of the Meniere’s, I can’t get out of bed to move to the day room to allow someone else in first thing in the morning. This feeling overrides the fact that I have had my TURBT ( TransUrethral Resection of Bladder Tumour). It is out. All 2cm of it. I should be happy. I am glad. Glad that now I am home and will no longer be a bed blocker.

So Sheryll Murray and Jeremy Hunt,on Monday, when there is the debate on funding of the NHS,think on my story. What the NHS needs is more funding, not less. The doctors and nurses don’t need to work more or longer, they do enough. What are needed are more beds. Non-joined up thinking with social services is only part of the problem.  Closure of local hospitals and wards within bigger hospitals is the problem. Re-open the local hospitals, provision them with the full care teams they need and some of the beds will become unblocked. There is no need to put people through the emotional turmoil that I have just gone through. I am not the only one. There are thousands like me across the country. Every time a pre planned operation is cancelled because of lack of beds someone goes through stress that only adds to their ongoing pain that put them in the position of having an operation in the first place. In a time when you have to be on your knees with pain before they will consider you for a joint replacement operation, then every delay is agony.

Find the money. We don’t need a high speed train, we need a high functioning health service.

The sun is shining. I have been told to buck up. The day is lovely. It is.

I was not expecting to be seeing it from this window. Not today. Maybe tomorrow, but not today.

So what if the op was cancelled because of lack of beds? Buck up, don’t dwell.

Anticpation and preparation for an operation is not only on the hospital side.

It doesn’t matter how minor it is, the emotional preparation is still the same.

Still, buck up, don’t dwell, don’t wallow.

We tried to ring you before you left so you wouldn’t make the journey- well, we tried an hour before you were due here, when you live over forty minutes away and were allowing for traffic, roadworks , parking and finding the unit. Sorry.

There are no beds available and because you are a pre-planned op we are cancelling you. We’ll try to get you back in , well at least get you a date. The office will open Monday. If you haven’t heard by Friday… do you have the unit’s number?

No, the only one the letter gives is the ward where I don’t have a bed anymore.

Sorry. Here, ring the switchboard if you haven’t heard by Friday. But go and have something to eat now as you’ve been nil by mouth since early this morning.

That’s okay, it’s only early stage  so a delay won’t matter much, I say.

The nervous energy that has kept me going until now leaves with a whoosh. Like a deflating balloon. But the pin that pricked is still stuck inside, its sharp point trying to get out.

Back home and I have to buck up, don’t dwell, don’t wallow.

I am sorry I am not smiling right now. Maybe tomorrow.

 

My eyes are aching with tiredness.

I tried dozing off this morning, but the radiographer kept interrupting to tell me to breathe in, breathe out and then hold it before breathing normally again. I tried several ways of breathing in- pushing my lungs and diaphragm up and out,  breathing in to my back, breathing so my shoulders lifted, and finally I gave up trying and breathed through my nose into my stomach. Breathing out completely was beyond me, I held it easily though. It was  breathing normally that stymied me. Short and sharp, slow and easy? How are you meant to breathe when you lie on your back and are belted down?

The man who had been in before me was the same man I had followed around on Friday. We’d both had the ultrasound and quick x ray in the morning before going off and meeting back again in the clinic where they do the internal exams and tell you what’s up (very kindly and taking as much time as you need) before handing you a letter. Everyone who had been in x-ray that morning gathered in the clinic, where we were called in order of our morning appointment. So we had nodded, then said hello and then chatted as we waited to be called in the afternoon. Today we smiled and chatted as he stood in a hospital robe and dressing gown and black socks, holding his basket. We could have been in the aisle of a supermarket. And yet again he went in before me.

Some time later he emerged to trot to the loo before going back in. Oh, I thought, they let you go if you need to, that’s good to know. When he finally came out, he skipped into the changing cubicle before we had a final chat. I had the feeling I would be seeing him again, fairly soon.

Eventually my name was called. I stuffed the arm I was crotcheting into my bag, losing all sense of what round I was on, even though I had brought my row counter. (I can see I will be redoing that arm.) I go in and the radiographer greets me as ‘ma’am’. Fortunately as the time goes on she changes to ‘sweet’. Somehow I would rather be called sweet than ma’am, which sounds very American to my ears, however polite it is.

Belted down and the initial x rays taken, she then tries to insert a canula for the dye. My veins have decided to take up slippiness in their old age. Time was, my veins used to pop up and taking bloods or inserting a canula was easy. Now, because they are getting crabby and want to make sure that easy is not what they want to be known for, they allow the needle entry and then send it out the back door. She tries to get it back in, coaxing a bit of the dye into my arm, before conceding defeat. Now she knows who’s boss, my left arm veins roll over and access is accessed.

You’ll feel a warmth and maybe a metallic taste, a feeling of wetting yourself, but you won’t be, she tells me. And then asks me repeatedly to say how I am feeling while all I want to do is sleep. I mumble as she puts a tray with two bags on top of my stomach. I am rebelted as she pumps air into the bags to compress my bladder and tubes, so the dye stays in the kidneys for a bit. Halfway through the compression my leg decides that it has had enough of my stomach being the one everyone is concentrating on and throws a hissy fit on the table. I buck and twitch until the spasm passes. My kind radiographer waits, asks me if I’m ok and then rebelts and continues to compress.

X rays taken, she unbelts me and dashes off behind the screen to take pictures of the dye rushing through my ureters ( the tubes connecting the kidneys to the bladder). Then sends me off to the loo. Now he makes sense.

One final set of images and I can leave. The results won’t be ready for a good couple of weeks she tells me. That’s all right, I say, my op is booked in for a week Saturday. Are you doing anything nice this afternoon? she asks as we walk to the door. Sleeping, I said, more sleeping.

 

After throwing its weight around, the wind has died down, leaving one of those blue skies with fluffy clouds and a very cold nip in the air. A good day for walking, gardening or as I did this morning, singing. I was at a Natual Voice session run by Neal Jolly in a village not far from mine- about 5 miles, with 20+ other women, singing in harmony. (Men were allowed, they just didn’t turn up! The one who popped his head round, beat a very hasty retreat, leaving the door ajar, drawing all the warmth out in his wake.) We had a lovely time, getting to grips with five different levels of harmony all taught by ear. I came away thinking what a great morning that was.

I had laughed, I had sung, I had chatted and drunk coffee, yes I know it’s not terribly good for the voice. And apart from telling two friends who had asked me directly, I didn’t mention my news.

I have early stage non invasive bladder cancer. Which of all the cancers to have is the good one. They will cut out the cancer and then deliver a dose of chemotherapy in a localised, directed hit immediately afterwards. And that could be it for ever. Depending on the histology. More chemo perhaps or not. It could grow back and then they will cut it out again and this pattern could go on for years. Or it could never grow back- the chemo directed in this way, inhibits further growth. My dad had bladder cancer, radiotherapy and then lived another 25 years without recurrence.

I am lucky.

I am one of those people who take an unnatural interest in what their body is doing. I suppose because I have had spinal fusion and still have a grumbling pain in my stomach and lower back with the occasional pinched nerve to chivvy me up a bit. I am aware. Perhaps also having  grown up in a household where the latest copy of MIMS was the reading material in the loo, I have maintained my fascination for obscure knowledge about medicine without actually having any training in the subject. Just for the record I am and always have been a non -smoker. And an almost non- drinker.

For the past six months I have been having problems with my stomach. In June I had  a colonoscopy resulting in a large polyp being cut out- I watched as it went pinging around the walls of the colon as they tried to catch it in a tiny net. They managed to retrieve half and told me they had tattooed the place where it had been.

The follow up colonoscopy, a month later, was to find the tattoo and see if anything new had happened. They lost the tattoo. It was blue and the walls were pink but somehow it had disappeared. Never mind. In August I had a phone call to say that I didn’t have cancer, not that I thought I had, and it was all most probably irritable bowel syndrome.

However, this call came whilst we were dealing with my husband’s lung abscess and in weighting, my stuff was in the microgram category, whilst his was in the mega ton. So noted and dismissed.

I had the six month call, in December, for another colonoscopy where they found new polyps in a completely different place and not only had they found one blue tattoo, they found three! Lucky me- tattoos multiplying without me having to do anything. I’m sure my kids had to pay to get more tattoos. Envious or what!

In January I had one show of blood in my urine- it filled the bowl. Then a couple of days of period-like pain but no more blood. I had hoped that at my age I had outgrown period pains- one of the perks of the menopause. It subsided and I was back to my normal grumbling ache and pinched nerve, though feeling so tired all the time and dangerously slipping back down the well into depression.

Knowing this I made an appointment with my doctor. Who listened. And then made a series of tests and appointments resulting in my attending a haematuria clininc on Friday.

Where I saw my early stage non invasive bladder cancer for the first time.

Oh, I said, are they polyps? expecting the answer yes. No, said the doctor, that’s cancer.

A wave of tiny white fronds strung with fairy lights.

Do I really want something so pretty to be cut out?

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