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Cancer Survivors

Meet the survivors and read their stories.


Stephen Bergman, Throat Cancer Survivor

Head and Neck Cancer

Working title: Living in the Darkness
by Stephen Bergman


Introduction

When I was 40 years old I decided, I had to get myself fit and healthy as I was carrying a lot of weight, particularly around the middle and was developing a bit of a barrel chest. I had tried over the years before I was forty by doing the occasional run in my local park and tried swimming in the local pool but never quite maintained it. My birthday seemed significant as I entered my forties;

my father had died at the age of forty seven and I was acutely aware that he was very unfit and overweight at the time of his death and I had convinced myself that I could easily follow in his footsteps. As I discovered later, a fear that existed in both my older brother and sister.

Friday 8 May 2015

Labour lost the election – badly. That fades into insignificance. It would appear I have cancer. I woke up yesterday morning knowing that I was going for a hospital appointment but by the end of the day I had two intrusive tests; a needle into the lump on my neck that was excruciatingly painful and a biopsy on my swollen tonsil which was equally painful and nasty.

I’m struggling to digest all of this. I want to be one of those cancer suffers who survive and can anecdotally talk about the experience. I feel very scared. I need to think about all that has happened and write everything down; it might help. I can’t unmuddle my thoughts at the moment.

I want to tell the world to unburden myself of this. Cast it away by sharing with others but when I am on my own, it is very scary and remains so.

I will most certainly have to have surgery but until we get the results next week, we will have a far greater picture of what is happening.

Jacky has read that if I have the cancer that is most likely then there is a good chance of survival. The reality is that we don’t know what it is and we are holding onto the hope of 93% survival if it is that form of cancer.

Monday 11 May 2015

I feel as if I have told the whole world about my throat cancer. I have been asked how they can be certain. To me, it is clear that the consultant is experienced and has seen this before and knows what this particular cancer looks like. My sore throat is more pronounced this week and I am certain that it is due to the biopsy.

Having an ear ache causes me concern and makes me feel anxious. It is fairly persistent. I’m finding it difficult to discern my aches and pains between pre diagnosis and post diagnosis. Am I looking and more aware of the aches and pains? I had a pain down the right side of my back yesterday. Is that related to cancer?

My throat has become less sore as has my ear ache. The pain is less intense. I am now certain that most of the pain and discomfort this week has been because of the aspiration on my lymph gland and the biopsy on my tonsil. Tomorrow, tomorrow, tomorrow!

I am a bit of a butterfly at the moment. I’m finding it difficult to focus and I am finding it difficult to settle.

Tuesday 12 May 2015 6.45am

I woke up at 4.30am with the most horrendous sore throat. I can’t work out whether it was the result of the biopsy or whether it is the cancer. Whatever it is, I definitely need to be taking painkillers. When they wear off I am uncomfortable.

As I drink coffee I have a pain on the right hand side of my throat. On the whole, drinking red bush tea appears to have a soothing effect on my throat. It is the most comforting and less painful.

I am drinking more water. More than I have ever done. It is refreshing and feels kind on my throat.

Wednesday 13 May 2015

The MRI was at 8.30am this morning. I felt very nervous and consequently it was a difficult experience. The noise and the utter feeling of being buried alive was horrible and I struggled to keep everything together. I have had an MRI before but I think my reaction this time was due to the stress of the week.

My feelings and emotions keep jumping all over the place. I have realised that I am telling myself that the type of cancer I have is HPV where the chances of survival are 93%. Tomorrow’s consultation will reveal all. We are keeping ourselves very busy to try and distract. It helps.

I’ve spoken to most people I know about what is happening to me. I feel exhausted by it.

I seem to have slipped into a pattern of waking up between two and four o’clock. I spend time in the toilet and when finished I am wide awake. This morning I plugged into my iPod and was able to focus on it and I managed to go off to sleep. Cancer Story

Sunday 17 May 2015

5.10 am – High Dependency Ward, Whipps Cross Hospital

I have had a really rough night. This is the first time I have written something since the operation. There is so much going on. So much to write about.

When I woke from the operation I was really traumatised. I had a tracheostomy fitted. This meant that I had no voice at all. It was so frustrating.

My writing has been interrupted by having the tubes changed on the trachi. I feel really awful today plus I had a really rough night.

I spent twenty four hours without a voice and then they put in a voice valve that enables me to speak. I was greatly relieved. I also realised that I had to be upbeat for Sophie. I think I was concerned by the trauma of seeing me in a high dependency ward.

The trachi was fitted because they thought I might get swelling in my throat.

I’m going back a couple of days now……

I thought I was going to be a day patient on Friday; instead I was on the operating table for nearly three hours and had this horrible breathing contraption inserted into my neck. Drainage of the tubes is about three times an hour. I was put on massive morphine quantities to kill the pain. Then early Saturday, all signs were good. I was given water and as expected I coughed it all up. I was made a cup of tea and I felt sick.

I managed a cheese sandwich and fruit salad and felt good. Blood has just splattered on this page by the man in the next bed!

Tuesday 19 May 2015 7am

Whipps Cross Hospital

Another rough night. I spend an enormous amount of time trying to deal with the build up of fluids in the trachi. I am worried about how I will manage it. At some point I am going to have to do all of this drainage myself. At this moment I don’t know how I am going to manage. Conversations with staff indicate that they want me out of hospital as soon as possible but from where I am sitting I can’t see that happening soon. How will I manage the painful suction and nebulising?

It’s 7am and I am sitting on my chair next to my bed. I have been given all of my many painkillers and could so easily be lying on the bed and falling asleep but I don’t want to. I might have to do it soon but I am holding out as long as possible.

The small section of the ward I am in, the high dependency section, is full of sadness. I look around and it appears to be full of gravely ill people. In the next

section of the ward there appears to be a person who is swearing and shouting. The staff are trying to calm him down but are not doing very well.

I am going to have to sleep. Struggling. I can barely keep my eyes open.

Wednesday 20 May 2015

Well, there you are, fifty six today and fighting to stay alive. Not what I expected a month ago. I know I can expect a constant trail of people visiting me today. I was really tearful earlier. I seem to be in a highly emotional state.

I had another bad night. I was reluctant to have oral morphine; I don’t like it very much. It makes me feel slightly nauseous. They offered me ibuprofen but insisted that I needed to eat. I was brought biscuits with a cup of red bush tea at three in the morning. In the end I opted not to have anything at all and managed to sleep through it.

The painkillers have kicked in and I am feeling fine. I will take the last two codeine at 2.30pm when everyone arrives. I might try to have a sleep now so that I have plenty of energy for everyone.

One decision I have taken is that I am no longer going to be at the mercy of the trachi. I’ve decided that I need to try and regain some control. The trachi has been in charge of me and from now on I am going to be in charge of it. I have to learn to drain myself and not be dependent on the nurses and I somehow have to learn to clean the tube of the nasty green stuff.

Thursday 21 May 2015

I sobbed like a baby today after the consultation today. I heard from the experts that they do not believe that I have secondary cancer.

This is curative and not palliative. How sweet those words sounded. I sobbed and sobbed.

I have been focussing so acutely on getting through this week that I hadn’t thought about the future. I have tried so hard not to think about the worst possible outcome. What will happen when I have the chemotherapy and then the radiotherapy? I can’t imagine it.

I’M SCARED. I AM VERY SCARED.

I had a dream. I dreamt that I was at the beginning of creation and at the same time the end life. Images of the hospital with no one in it. Just emptiness. Very dark and in monochrome. This was the end of man. The end of me. The beginning of life held in a single image of an empty hospital ward.

What I need to ask Denise Redman, my specialist nurse and Paul Stimpson, the consultant in charge.

1)Aggressiveness of the cancer. He looked at the cancer; can he judge how aggressive it is?

2)What I can and can’t do. Drive? Lifting? Exercise?

3)Diet – when can I start to eat a regular diet?

Friday 22 May 2015 5.25am

Today I am having a new tracheostomy fitted. It’s going to be a smaller one. I hope it is more comfortable than this great lump in my neck. I’m in constant discomfort.

How close to death have I been to so far?

The consultant told me that he had difficulty in fitting the trachi in the original operation. Apparently I will have six weeks of treatment and six weeks of recovery. I’m not taking everything in at the moment. It all seems so overwhelming.

I have been told that I will have to have my teeth checked prior to radiotherapy. I will also have to have a feeding tube in my stomach ten days before the radiotherapy begins. I am told I will definitely need it. I don’t fully understand the magnitude of all of this at the moment.

They seem unsure how long I will have to have the trachi in. It depends on swelling apparently.

Friday 22 May 2015

Sometime in the early hours.

This is the second day and second night where I am in control of the trachi. Before, it was in charge of me.

Having a trachi is like wearing a badly fitted shoe. Is the new trachi going to be any more comfortable? Will it be a better fit?

The itinerary so far:

Friday, Saturday and Sunday – operation followed by a stay in the intensive care unit (ICU)

Monday, Tuesday, Wednesday, Thursday, Friday – hopefully home on Saturday morning with kitbag of nebuliser and suction.

Cleaning the tube is a painful operation. Phlegm and mucus builds up in the tube and eventually it starts to rattle and becomes increasingly uncomfortable. The

suction machine is excruciatingly painful. The nurse strips back all of the tubing and placing the suction tube in the trachi bringing on a feeling of retching; I am given instructions to cough and the suction machine pulls out the mucus. I have grown to really hate it. It is constantly painful and is a massive relief when it is over. Fortunately I have very good lung capacity and can clear the nasty fluids fairly rapidly but it still needs to be cleared every two to three hours. Day time and night time. I haven’t managed to sleep all the way through the night since all of this stuff happened.

There are two people in the ward who are extremely ill. One will almost certainly die. Emil – Bosnian or Croatian He had a laryngectomy. Permanent hole in his neck. Nicotine patches.

Patrick – my age. Cancer of the larynx. Has spent several months in hospital. Michael – in the bed next to me. Tube through nose. Spent several months in hospital and appears defeated by everything.

Luke – Teenager. Had an appendicitis operation that went wrong. Robert – stomach that ended up in his testicles.

4 out of these 5 people, post their cancer surgery have had complications. Their life style choices have had an impact on ‘what happens next’

I’ve now been on the nebuliser for an hour.

Questions to ask Denise/Paul

Earache – only when I am conscious of it

Lymph gland – when and if will it go down?

Not talked about aggressiveness of cancer. Can they tell?

What can and can’t do. Drive, lifting.

Diet – can I come off the soft food?

Showering/ baths

Saturday 23 May 2015 1.09 am

High Dependency ward, Whipps Cross hospital

The trachi change was done. A bit distressed. It feels as if I have had a wellington boot swapped with a gym shoe.

It is so much more comfortable.

I can’t sleep. Yesterday was once again a day of trauma and extreme emotions. This was followed by many hours of sleep last night.

At 10 am I went to recovery in the operating theatre. Stimpson took out the souchers and replaced the trachi 8 with a trachi 6. I recovered but the wound felt fresh and raw.

We sat with Denise and went through the kit for home and collected lots of goodies. She said I could eat my lunch and go home. Fish, chips and beans. We collected everything and set off home.

Sophie opened the door to me and was surprised to se me.

I did one trachi clean with Jacky to show her how to do it even though the whole thing felt really tender.

I got into my day clothes and slept for half an hour and then Kathleen and Rhiannon arrived separately.

I felt the need to cough so I went upstairs and saw that the dressing was gooey and started to clean it. I twisted ooff the inner tube to see if it was clean and clear and it started to bleed beneath the tube on the skin. I had no voice valve or tube. The blood started to flow more vociferously. I grabbed some toilet tissue hoping to stem the flow; I coughed and blood started to pour out of the tube and some from the wound below. I couldn’t call out. I kicked the door to get Sophie’s attention. She ran in, screamed and got Jacky. Sophie phoned 999.

Jacky got me a towel and within five minutes the ambulance arrived. It was a slow drag up the Lea Bridge Road. I had no inner tube or voice valve so could not speak.

We were taken into A&E and I was waiting on line for a cubicle to be free. The man in front of me was obese and was sitting in a wheel chair. His legs were exposed and his skin was split and angry. He had open sores that were infected and the smell was acrid.

My chest had congealed blood all over it. I was eventually taken to a cubicle. Sophie was dropped off at the hospital by Pete Merchant, another visitor and she was sent to the ward. Jacky was with me and I sent her to be with Sophie.

Alex, the ENT registrar arrived one and a half hours later and described the blood as primary trauma. He conceded that it looked shocking. It looked dramatic but it was blood that had been sitting on my chest since the initial operation and was mixed with phlegm. I was eventually wheel chaired to the ward and greeted by Sophie. Jacky went home to get me some stuff.

The staff on the ward were completely unphased as to what had happened, almost blasé. I was told off because I hadn’t taken the emergency trachi kit with me. A nurse very curtly said to me “you only have one life!” That was a bit of a shock.

I have lay here in bed all night replaying events in my head; full of emotion. I‘ve heard from Gina and Jacky, who I love so very very deeply and it is this experience that has made me realise how deeply I feel. We are as one. We fit.

I fear the worst possible outcome. I don’t want to go. I have so much more living to do. I must enjoy the day. It is this day that counts.

I worry about Sophie but I know she is strong. She is like me. She is so much my daughter. She is part of me.

1.40am

Who would believe this a month ago? I’ve lost almost a stone in 9 days.

Fashion – I need some large V neck t shirts. I also need some small scarves. Look on line when I get the opportunity

Virgie, the night nurse brought me some hot milk. It was lovely. I shall try to sleep

Sunday 24 May 2015

Checked into hospital at 10am – all okay

Graeme and Nick called

Cut lawn

Simon and Kathleen called

Last night was wonderful. I slept for a good seven hours last night. Graeme and Nick appeared as I was mowing the lawn.

They were as usual lovely. Dropped them off at the station

Dropped into Terry and Nat to pick scarves. Diasappointing. There were none I felt particularly comfortable with. Came home and finished mowing the lawn.

I’m getting very out of breath. I’m having trouble adjusting to the trachi. I’m producing a day cough because the secretions are too sticky. I’m now using the correct fluid to clear my throat.

Tuesday 26 May 2015 1.54 am

This is my third night home. I am on ‘leave’ from the hospital. I still have a bed in the ward if I need it. I will be saying goodbye as a day patient in the morning and be discharged at 12 noon.

The last two nights I have slept like a log but tonight I am restless. I have just watched a supremely inane film, ‘Adore’ on Netflix, hence how late it is.

I’ve not settled in three days being at home. Lots and lots of visitors, telling and retelling my story of the last ten days.

I will attempt to sleep. My list for tomorrow

Contact Bob C re: computer

Hospital at 12 noon to be discharged

Shopping at Westfield – T shirts and scarves

Think about writing and recording all that is happening to me

Say goodbye to adorable beautiful Sophie

Wednesday 27 May 2015 12.30am

I am getting anxious. Now that they have all the histology’s there might be a change of plan. We have been led to believe that I will have 4 – 6 weeks preparation and 6 weeks chemo and radiotherapy. I am worried that the full histology’s will expose something that they didn’t see before. The next two days are going to be very scary.

Sophie went back to Chichester today. I miss her.

It seems that Jacky has retreated into drinking every evening. She is so worried and I don’t think she is dealing well with the situation. She almost becomes aggressive and eats and drinks too much when under pressure. Ironically I think it is what Sophie does as well. Neither have the ‘off’ switch. I don’t know how to address it with either of them. Do I leave it? What good would it do saying something? I don’t think a whole lot.

I also need to look after myself. I need to know what will be happening after Thursday.

I remain scared.

Today I felt vulnerable and I didn’t like it. I was exposed to the world.

I woke up early. 5.10am. This has become the usual routine, mainly due to the fact that I have to nebulise. I needed one lot to clear the gooey sticky muck from chest followed by a saline solution to relax the airway. The salbutamol clears the muck. I started to write to Lindsay in Australia. It was in that message that I had some ideas to turning what is going to be a miserable and challenging experience into something that could be positive and perhaps tap into my creativity.

Firstly, I am going to commit this experience to writing a book. As each stage occurs, record what happens. It will be a personal intimate piece but I am going to offer it to Emma and the project that I seem to have signed up to.

I’m also going to ask Barry Bliss if he wants to make a film/documentary about a man recovering from cancer……me!

I’ve already texted Debbie, his wife and our newly acquired friends! I hope he is interested.

Also, I have an unused video camera here. I might start doing some filming but I am fairly certain that I would like someone else to do it. I did ask Guy but he seems to have moved on and is not interested. I’ll wait to see what Barry says.

Thinking about Emma, I am going to ask to see if there is a more active role I could take. I will emphasise that I am not looking for payment but I want to be creative in this misery. Fuck, I have cancer but I feel really inspired!

Don’t forget to write about suction:-

The pain in wanting to retch

The constant pain in the neck

The little relief suction offers

Images in my head of a great tube being thrust into my neckto release the unwanted, sticky secretions

I am thinking about how small my life has become. How limited it is.

Observing Emil, Michael, Patrick Murphy, Robert, the man with the seven stone scrotum, the man with the scar that went from one ear, along his collar bone and up to his other ear. His head was obviously flipped open to remove the cancer in his tongue.

I think everyone in the ward has nicotine patches.

Lying here having had a rush of activity, I am now feeling tired now. I did a mucoclear and then a saline. I have now had to do another set as I am still feeling as if I have mucus on my chest and need to relax my airways. It’s now 7.30am

10.26pm

Bed early because I am really tired. I have done loads of walking today. I keep finding myself out of breath. I fucking hate all this. I can’t do anything. I get tired really quickly. I hate this trachi, fucking hate it.

Thursday 28 May 2015

So begins a new day.

Trepidation

I haven’t had to nebulise immediately. I am wondering if it the change of drugs from paracetamol, Ibruprofen and codeine to the soluble cocodamol. I also managed to do a poo again.

I did masses of walking yesterday. It felt that as soon as I would finish nebulising, I felt that I needed to do it again.

So, the consultation today. My greatest fear is that they won’t be able to keep the cancer at bay because it is so aggressive. It’s as straightforward and simple as that.

I meet with Barry yesterday. We agreed on two things:

P class="p106 ft0">Making a documentary about this experience, hopefully with a happy ending!

Barry will take a series of stills and use my writing. We’ll exhibit it somewhere.

I will mention this to Emma today and will tell

Friday 4 December 2015 9.50am

I had a consultation yesterday with Mr. Stimpson. He diagnosed me on 7 May. I haven’t seen him since. It seems rather fitting that he was the one to tell me that I am clear of cancer.

Initially I was rather low key but as the hours have passed I keep replaying the conversation we had and I am so very very happy. I keep texting people to let them know.

Sophie came home last night and we told her. She exclaimed, “You’ve beaten cancer” and told me that she loved me. Inevitably she brought a tear to my eyes. It’s not about jumping around in an ecstatic excited state; rather I have moments of pure joy. As I was walking to the station yesterday to do the mindfulness course, I was struck, even with the existing side effects from the treatment, how healthy I am feeling. I haven’t felt as well as I do now all year.

I am lighter, more optimistic. I have been trying to build a new future in the last couple of weeks and now I can do it knowing that the worst is behind me. A tiny nugget of doubt still exists inside me but I recognise that is a protective thing.

Even now as I write this I am also texting people and letting them know the situation. It is the same as when I was diagnosed. I told the whole world I had cancer and now I am telling the world that it is gone.

I spoke to Stimpson about the documentary film and he seemed genuinely interested. I am going to pursue the idea of getting into the hospital and trying to get into the ward where I was and arrange Stimpson and Denise to be interviewed.

This has been a long and winding journey. It has been tough and uncompromising at times. I have come out of the other side and I feel lucky, very lucky. Although I am aware that I have made some good decisions in my life. I have always thought that that things happen, it is how we recover that really matters.


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