Living with and beyond cancer
Living with and beyond cancer
In their own words… our patients share their experiences of living with and beyond cancer:
Greetings from Penny Doyle, if you're reading this, you're in the right place.
If you're a little like me (then God help you) I'm no geek when it comes to computers and websites etc…..they're all gobbledygook to me, but I hope this site will help you, even with things you didn't even know you needed help with, all within a few clicks.
Probably I started on this journey via a different route to most of you. I suffered a stroke in June 2011 and was hospitalized for 3 months. In August of the same year, during all the scans, it was also discovered that I was at stage four of Non-Hodgkin's Lymphoma- a double whammy eh!
So you can imagine how my husband, children family and friends were feeling. When my chemo finished in Feb 2012 I was so lucky to have all the care and love from my family. I still think its worse for them, we as patients know exactly how we're feeling and coping, which in many cases I'm sure looks far worse than it actually is. I was, and still am to some extent, wrapped in cotton wool.
All of this love is so reassuring, but my life had now completely turned upside down, I am the one who should look after everyone else, I am the one they should come to, for chauffeuring-shopping-cooking-laundering and-advise, not the other way round! For me, this was the worst transition to accept, as my husband and family have taken all those chores upon themselves, I still get very tired very easy. I felt I needed to -no, Icravedto talk to people in a similar circumstance.
So whoever you are, whatever you've been through, if you want to meet someone who has been there, and done that, someone to show you the way over the rainbow, then the road just may start with this website. Tomorrow truly is the first day of the rest of your life, we are blessed to be here
If you are reading this, you probably remember the shock of being diagnosed with cancer, but you are now eager to get back to normal and leave all that behind you. I was the same: it was the Spring of 2010 - an absolutely beautiful Spring with gorgeous weather and much warmer than expected. For me, my husband and my nearly three-year old son it was a special time.
We had recently moved into our first own house and we were expecting a new baby in two weeks time. Life was as perfect as it could possibly be. Then cancer struck. I remember coming back from hospital - the diagnosis raw and unbelievable - and looking at the commuters stuck in rush-hour traffic and already miles removed from what I would have called normal a few hours earlier. I really wanted to be in one of those cars - a normal person just coming home from work!
For now and the coming year, normal was out of reach, but I was determined that if I managed to pull through all the treatments that were in store for me, I was going to have a big celebration to mark the occasion. Only that once I came out on the other end eight months later, I did not feel like celebrating. The first birthday of my newborn son came around and I was in tears, torn up by fear, worry and regret. Yet, we forced ourselves to celebrate - everybody sort of was expecting it.
Hadn't I come through treatment and, by all accounts, quite successfully? Did I not have a beautiful baby son, despite all of it? Why was the joy and relief not getting through to me?
Maybe at this point you're just shaking your head and thinking, what in the world is she on about. Maybe you are actually in a celebratory mood, now that you're considered to be a survivor. If so, congratulations! However, if what I've described rings a bell for you, I want to reassure you that it is not going to stay like that indefinitely. Even more so, the struggle that you may be in the middle of can ultimately make you stronger and more mindful of what it is you need from life.
When one of the male nurses I encountered during a stay in the hospital asked me, "So, how has your cancer journey been so far?" I could have slapped him. I felt miserable, not as though I was involved in some glorious journey of self-discovery that I would feel comfortable to discuss with others. With hindsight, however, I can see what happened to me as a meaningful journey. Rather than simply going back to join the "normal" people in their rush-hour traffic jam, I really feel that this experience has changed me. I am stronger, more self-confident, happier and more caring towards myself and others.
I love my little family; I enjoy work -- life is as perfect as it possibly can be once again. And I hope that you will soon be able to say the same.
I was diagnosed with testicular cancer in nineteen seventy eight and having got over the initial shock of being told that I had cancer, I had to accept that this was a life changing experience and that I would have to think seriously about all my options.
What was my future? What is the survival rate of this type of cancer? What type of treatment was available and will the treatment be successful? So many things to think about and I soon realised that I was going to need a lot of help and support from my family and friends to help me get through this difficult time.
After my surgery I was told by my consultant that I was going to have twenty sessions of pelvic radiotherapy, for four weeks with weekend breaks in between which was really nice to be at home. I soon started getting side effects from my treatment and I had sickness and Irritable Bowel Syndrome (IBS) and had difficulty with eating and found it difficult to find things to eat without having nausea this lasted for a month while I was on my treatment. I lost a lot of weight and I was very tired, at that time there was no support from health professionals so one had to make the best of your side-effects, fortunately things have changed and there is more information available today for patients.
My employer was very sympathetic, and I started back at work three months after finishing my treatment on part-time. I thought that this was very therapeutic and very helpful to get back to normal as soon as possible.
So that brings me to the present, it is thirty years this year since i received the all clear from my consultant. I lead a very active life which includes playing golf, as well as a volunteer at The Christie I have recently been given a ten year service award for volunteering at The Imperial War Museum North, and I also work for the National Trust at Dunham Massey as a room guide during the summer months,
I feel very positive and I do not allow my (IBS) to control my life more like I control it. Although I do have to take medication and my GP is very good, some things that I have to do like my diet is very important and I have to eat the right foods at certain times. I have also given up smoking in recent years and have to be careful how much alcohol I drink except of course at Christmas and New Year.
I hope that this testimonial is useful to any patients that access this website, and is helpful to you on your cancer journey.
Hi, I'm Sue and this is my story, well the cancer part of it anyway. After feeling unwell for some time I was diagnosed with vaginal cancer, didn't know you could get cancerthere! Well, what do I know? Turns out there are many types of cancers, as many as there are days in the year, even. Trust me to get something different, a cancer that embarrasses almost everybody, as if conversations weren't already difficult. Some friends and family found it hard enough to deal with cancer, never mind having to use the word vagina!
But the thing is, getting the diagnosis was actually a relief, now we (me and Gary) could get on with dealing with it! Well bring it on…
First the treatment. Surgery wasn't an option, that was a pain, I just wanted it cutting out, get rid of it, but that couldn't happen, great. Six weeks of daily radiotherapy and weekly doses of chemotherapy, at the same time. Trying to find info and statistics, survival rates, etc. was no good as the info just wasn't out there at that time, even on the net! It didn't matter (still doesn't) we concentrated on each day at a time, get through this bit and then the next. And side effects? Yep, we were told about them, read many leaflets, but the way I look at it is, wait and deal with what actually happens when it does, you never know it might not happen!
All this was seven years ago. Yes, this has been quite a "journey", sorry for that overused phrase! And there has been a variety of side effects with treatments including tablets, foams, creams and even going into a decompression chamber! Won't bore you with that, but it's dealable with (that's not a word but it should be)! And there were more investigations and results. So what kept me going through it all? Well the loads of help and support which is out there, from people close to you through to the many professionals. They're here for us, how good is that?
So how are things now? Well I'm still here!! Although my life has changed dramatically. Due to my health I eventually retired from my job as a head teacher so suddenly I was off the spinning merry go round and just like being dizzy it took me a little while to find my feet. Life is now busy again, but in a different way. I spread activities out so as not to get too tired, some things (like occasionally ironing, if I must) are done sitting down and others do lots of stuff for me, I don't have to be superwoman!
Some stuff I just don't do, some things are just not important. Cancer has a way of reminding us what are the important things. This fantastic world! (can't help being cheesy). Embracing the senses, sounds, sights, smells of our world. For me it's a salty, stormy sea on Brighton beach, Taylor's face lighting up on opening a Christmas present, the rustle of multicoloured autumn leaves swirling like confetti at our secret Gretna Green wedding and so much more.
But, most important of all, precious, precious people. Family, close friends, friends revisited, colleagues, those we pass on the street who may smile those we have yet to meet…
And it really is true that it's all waiting for us. This always has been the first day of the rest of our lives, cancer or not… and I for one am going for it, why not?!
It's not just about life; it's about the quality of that life.
One of the scariest things for me about being diagnosed with rectal cancer was, not knowing I had cancer, of any description, in the first place - which is why it was such a shock when I was told. I thought I coped quite well with that little revelation, "OK, cancer - I can beat that!" was my thought process. It may well have been naive of me but because I hadn't really known I was ill I assumed that the cancer wasn't that serious. I had no fear of death as it seemed like a non-starter, so my mentality was Ok so where do we go from here - I wanted to get on with my life and cancer was just a bump in that road.
The fork in my aforementioned road came upon hearing my treatment options - radical surgery resulting in a permanent stoma for life or about 12months to live (bag or box scenario as it's known in bowel cancer circles). I hadn't thought about the consequences of actually having the cancer, I thought we would just take it out and part our ways. At no point did Radical Surgery even enter my consciousness and the only Bag4Life I was interested in was the one I went to Tesco with! I planned on living and as far as I could tell the consultant surgeon wanted to help with that as well, however with little no thought for what my life would be like once it was saved. I was only 31, had a girlfriend but no kids yet and more to the point I was quite attached to my ar*e. Luckily for me I sidestepped fear altogether and went straight to 'How very Dare you!' and said no and I want a second opinion.
This decision gave me what I thought I was being deprived of at this most important juncture of my life - time! I did go away and get a second opinion and I did find a treatment called Papillon at Clatterbridge Cancer Centre up near Liverpool. That decision was 10 years ago this June and I am still here and still get to read the Sunday papers sitting down on the toilet, so not too bad considering I was only given two options - bag or box!
Surviving cancer IS the priority but fear of the cancer itself can stop you taking time to really think about what your life will be like after it. I still have some side-effects from the radiotherapy and chemotherapy I underwent, and I still had a micro-surgery; so believe me when I say my chosen path was not an easy one but it was MY path and not the surgeons. My survivorship pathway would have looked a lot different had I gone with the permanent stoma and with it, its own set of side-effects and complications be that physically or psychologically. Whatever, you decide has to be the right decision for you! If they have caught the cancer in time and are talking treatment options and times when they would take place - you should ask for time to think about what you want to happen to all of your body not just the little tumour that the doctors seem so focused on.
This year is my 10 year all clear and I'm very happy and lucky to be alive and have done some great things since being ill but one of the my proudest moments of my life looking back is that I took control of my future and didn't succumb to fear of the Big C. I am not anti-surgery or stoma I am pro-choice and the reality of the situation is that you are the one that is going to have to live with whatever choice is made in connection with your cancer care - I would rather that choice be mine.
18 months on from being diagnosed with Stomach Cancer
The story I am about to tell
Concerns a dreaded cancer cell
No bigger than a finger nail
But more dangerous than the Richter scale
Now before I start I must confess
Too much worry can only lead to stress
So on being told I had a tumour
I resorted to my sense of humour
A positive attitude can remove the fear
Along with eight pints of beer
So if you believe that I'm teetotal
Please treat this poem as anecdotal
I hadn't reached retirement age
When these symptoms I began to stage
Burping, trumping and feeling bloated
Get to the doctors my workmates voted
My Doctor for the past forty years
Just gives you tablets and hopes it clears
Fortunately he was out on call
So I saw a locum who was on the ball
A colonoscopy is what you require
The thought of it made me perspire
And another test if you'll agree
We will send you for an endoscopy
USHM is the place you'll go
A teaching hospital if you didn't know
It's renowned for its reputation
No finer place for an operation
I was told to strip and wear a gown
An enema would help me settle down
To add to my tails of woe
My backside was all on show
Following the irrigation
The camera did its exploration
The doctor told me there and then
It seems all clear - I said Amen
A short time later I returned
Still uptight and a tad concerned
A camera down my throat would find
More problems than an exposed behind
The Doctors face told me the answer
I knew I had the dreaded Cancer
The nurses gave me their support
As the doctor read out his report
The news you hear becomes a shock
The C word causes a mental block
The biopsy may show us more
I then turned white and almost swore
You are left alone with an Orange drink
To compose yourself with time to think
I don't do drugs, drink or smoke
So why pick on me I'm a healthy bloke
You have pent up anger and frustration
Before you attend your consultation
I met my surgeon Mr Welch
And told him how I still burp and belch
He is the most amazing man
And in layman's terms told me his plan
No hospital jargon to make me worry
Just calm precise and in no hurry
My tumour on a scale one to four
Was touching three but at worst no more
So with chemo and a slight loss of weight
The best cause of action was to operate
A total gastrectomy is what we recommend
He knew I didn't fully comprehend
So to ensure I was in no doubt
That's all your stomachs coming out
Chemotherapy will help prevent it spreading
So off to Christies you'll be heading
Pumped full of drugs may sound gory
So well leave the chemo for another story
12 weeks later I was all prepared
And can honestly say I wasn't scared
You put your life in one mans hands
And I was already making future plans
The theatre team were all first class
But I am sure they gave me laughing gas
I woke up in I.C.U
All unsung heroes that nursing crew
My partner for the past eight years
Was by my bedside in floods of tears
I woke up from the surgeon's knife
And asked her quietly would she be my wife
I had tubes in every orifice
But managed somehow to steal a kiss
My daughters both full of stress
Could now worry about there wedding dress
A4 was my surgical ward
And for the next 10 days I wasn't bored
A high standard of nursing care
Was there aim which they achieved with flair
Physiotherapy may be a touch sadistic
But the support I got made me optimistic
6 weeks later I was feeling brighter
Back at work and 2 stones lighter
Gastro Reflux can be a side affect
And toilet issues you may expect
But we are lucky if all we fear
Is nausea and a bout of diarrhea
Some experts will try to claim
That instant meals is part to blame
The truth is no one knows for sure
The causes still remain obscure
Now in trying to keep it short
I've missed thanking people for their support
The dietarians kept on repeating
There no substitute for healthy eating
Chew food and eat more slowly
Is sound advice from Tina Foley
Both Fran and Tina are special nurses
That deserve more than just two verses
There knowledge and positive attitude
Should count for more than just gratitude
So at the next support group meeting
My sincere thanks I will keep repeating
The nurses and the Registrars
Have so much patience all were stars
But to those I would give Champaign
Are the loved ones who kept me sane
I know that cancer sometimes kills
But so do cars and sleeping pills
So don't let cancer get you down
Be upbeat and remove that frown
Be positive and have ambition
Don't fret is it in remission
It's not just with this disease
That you will receive no guarantees
Light hearted humour I maintain
Relieves the worry and eases pain
So as patients we can do our bit
And assist the surgeons to make us fit
The moral of this story shows
Although we still have highs and lows
Laughter, smiles or just a grin
Will ensure the C Word cannot win
Chemo and its side effects don't believe all you read
Another poem by John Rothwell
Chemotherapy for twelve long weeks
Has side effects with troughs and peaks
It taught me tolerance and resolution
But played havoc with my constitution
It's not easy to guess or predict
What traumas the medication will inflict
But for those with low blood cells
Expect flu like symptoms and dizzy spells
Nausea and vomiting must top the league
With hair loss followed closely by fatigue
Toilet issues may not escape I fear
With constipation or even worse diarrhoea
Your skin and nails become dry and sore
You wonder just what's next in store
Its stress, anxiety and deep depression
No wonder your sex life goes in recession
Your taste buds suddenly start to change
the food you like becomes weird and strange
Short memory loss becomes a fright
And insomnia keeps you up all night
I know I exaggerate and dramatize
Some might even call it telling lies
But no pain no gain is the only answer
To get rid of this bloody cancer
The Movie Stars
When I was asked earlier this year by Janice Lang my Speech therapist to appear in a film being made on behalf of the Christie Hospital, Manchester, I was only too pleased to oblige. I had received radiotherapy treatment there five years earlier and had been impressed by the courtesy and care I had received. So if I could repay them in any way, I was up for it.
A diagnosis of cancer on one of my vocal chords had necessitated the surgical removal of my voice box. This had been carried out in September 2007, not at the Christie but at Fairfield Hospital in Bury. All the staff there including the surgeon had been very kind to me but, one cold morning in early December when he rang my husband at home, my outlook suddenly became decidedly chillier.
He told him that I had been discussed at the regular meeting of consultants and my oncologist had said that he considered a month-long course of radiotherapy to the surrounding tissue would be advisable. Offered the choice between being in hospital for a month and attending daily, I opted for the latter. So, two days into the New Year and not really understanding what was about to happen to me, we commenced our early morning twenty-mile trek down to the Christie.
Fortunately, after recovering from the effects of the radiotherapy and regular check-ups, both at Fairfield and North Manchester Hospitals, I was finally told in October 2012 that my presence would no longer be required. Hooray.
Off Like a Shot 'Could you attend with your friend Philomena (who is also a laryngectomy patient) at the Bali Health Spa in central Manchester where the filming would take place?' We were off like a shot. It was bitterly cold day that day too in late March, but the warmth of the reception we received more than made up for it.
The film crew were unloading their equipment when we arrived and the narrowness of the street had ensured the inevitable honking of horns. So, when my husband completely blocked the street to drop us off it was like a fanfare for the famous. Once inside, we were greeted by Ben, representing the Christie and Damien from the film production company. Both were charming young men who introduced us to Karen a fellow laryngectomy patient who would also appear in the film with us. Her bubbly personality combined with Philomena's leprechaun wit was just right to lighten the proceedings.
Three young lady therapists had been assigned to look after us whilst we were "interviewed on camera" - Beyonce eat your heart out! The white toweling robes didn't do much for our film star image but the head and neck massage that followed was very pleasant indeed. After that we tried to resist the tea and cakes but couldn't, telling ourselves they were a vital accompaniment to the gossip that we then indulged in. Our contribution would form the last component of a three part film aimed at giving as many cancer patients as possible the reassurance that the disease can be survivable or 'lived with' whilst enjoying an acceptable quality of life.
Terms such as "survivorship", "living with and beyond cancer" and " mind and body," all of course, tremendously and seriously important themes in the film, were being used, but by this time we were in full 'diva' mode and encouraged to tell it 'our way'. The Premiere Then in mid -July it was time for the "premiere". The film would be shown after dinner, on the big screen at the Manchester Conference Centre and we were invited. So, in best frocks and with the excitement unbearable, we attended with some forty or so others including Janice our Speech Therapist.
All had been involved to a larger or lesser extent in the making of the film. They included six other "stars" who had appeared in parts one and two. They were all such interesting people and included a sculptress and a professional musician. The stories of how they had coped with a variety of cancers were a humbling experience yet much of the evening, including during the showing of the film was filled with laughter. Alas, inevitably, much of my performance - and I expect that of the others - had fallen to the cutting room floor.
No offers of a contract have yet been received. The following week, and in glorious weather, we attended what can be best described as a 'garden party' held in the Conservatory and among the rose beds at the Christie. It was the launch of the new website and the introduction of the film to various professionals, volunteers and patients. Dozens attended, and doesn't it make such a difference when the sun shines? Conversations and banter tripped lightly through the next three hours before it was all over and I returned home to get the washing in. The film has been so professionally prepared, and the message it contains so reassuring, that I would recommend everyone to take a peep. It can be opened on the above website or viewed on YouTube.
We all long for clarity of understanding of our disease but this usually eludes us. The consultants necessarily trim off the clinical complexities that would only confuse us, and instead try to leave us with a clear- cut idea of the treatment that will help, and even cure us. We then ponder on all that has been said and search for the answers, the ethics, and the morality that has allowed this 'thing' to invade our bodies. But the inevitable 'why me?' always remains unanswered. Although I was told I had the classic 'smoker's cancer,' I had never smoked in my life. Although feeling clean of the guilt of having caused the cancer myself, it didn't help. The nasty complexities of real life don't allow for it. There was nothing I could do to cure myself.
The question was how I could survive until the experts could get rid of it for me. Hard to be Positive Developing a positive frame of mind did not come easy. My brain had gone to work and come up with nothing but negatives. The more ill I felt, the more desperate they were. My own method was to try and feel happy about everything else in my life such as my home, my life-style, my three sons and their families, and of course, my ever-supportive husband. I did not actually sit down and make a list of all the good things but I wish I had. I hope that you will think our little film is a good thing too. I think you will. Hazel Barker, The Oldham Quiet Ones Club
To the BRIRS team
I have just returned home after two very uplifting days with you and your team. I cannot thank you enough for the treatment and advice that was available. Words seem inadequate to express my gratitude for all the advice which has helped put many things into perspective.
Although every specialist was wonderful, I would like to especially thank Paula, Julie and Tracy for their invaluable help towards alleviating the problem with my lymphodaemia. At my advanced age, I didn't think that there was much more anyone could do, but they have given me renewed optimism re. the future, and I have taken all their advice on board.
I am seeing my oncologist next week and will be pleased to tell him of recent developments. Thank you again for everything and I wish you well in your work with other patients. With all good wishes Pat Llewellyn
A New Life
I've had probably the most exciting 18 months or so of my life, with the shadow of cancer fading by the day. 'Living with cancer' is a phrase that in my opinion caused me a lot of confusion and anxiety.
I lived with cancer while I had 'Terry' (my name for my cancer!) in me, but since chemo and remission, my new life is cancer free, I shouldn't have to live with cancer. Yet, why do I think about it every single day, without fail?
When I was going through treatment I had short milestones to aim towards and it helped me focus on being cured: 'in one week I'll be a third of the way through; 5 more bags of chemo left; 2 more United fixtures; 1 more sleep', etc. However, the first few months after being given the all clear I felt strangely vulnerable,
I was now free from The Christie for an entire month. Cancer sprang up so quickly it could do it again surely? That month passes and I'm onto three monthly check-ups. I aimed towards taking part in many different sporting events in 2012, not only to fundraise for The Christie, but also for my psychology: if I can run half marathons, 'Terry' can't be back. However, since getting engaged at the end of 2011 there was only one milestone on my mind, get to May 4th 2013 cancer free.
2013 was a massive year for me and my fiancée Soph. We actually planned our 'big day' on the final night of my stay at The Christie in August 2011. On May 4th 2013, we turned that dream into reality and felt truly blessed to have such an amazing family and group of friends to share it with. We celebrated in style with all the people that had been there for us through the tough times. This was our day in the sun! 2013 was certainly a year of celebrations, not only did we get married, we also moved house, my dad was 60, Aunty Pam was 60, Uncle Ed was 70, my sister Jess graduated and got herself a job at a great school….
Since the wedding, I haven't thought about cancer in the same way. I used to think about it because I would have a cough, an ache or pain, or I'd be checking everywhere for lumps. Over time I've learnt how to 'live with the burden and memory of cancer'. I feel a lot more positive about my future new life without cancer and I think planning and aiming for short and longer term events really helps, whether that is a sporting challenge, a big birthday party or a weekend away. Looking forward helps because you picture yourself in that place, putting yourself in a positive frame of mind. 'Living with cancer' will be defined in many different ways by patients.
At the end of 2013, we were rocked by the news that my mum's cancer had returned. She had breast cancer over 10 years ago, you'd think after that length of time you are rid of it for good? It has returned, this time in her bones which despairingly makes it incurable. The good news is that it hasn't spread to any vital organs and the oncologist says they can manage this, hopefully for many years. When mum lived with cancer the first time, as with mine, she saw an end in sight: the treatment will cure you. But this is different. I've spent a lot of time chatting with her over the past few months and I've seen a massive change in her frame of mind.
Understandably, at first she was totally devastated, we all were. Her mum died of secondary bone cancer so she had written off her chances. However the more we read and speak to the experts, the more positive we all are. She's started her treatment now at The Christie and has a plan for the foreseeable, she's looking to the future and well she should because….on the Friday mum came round to tell us about the return of cancer,
Soph and I also had news to share. I wasn't expecting mum to tell us what she did so we saved ours for a couple of days as we got our heads around another battle with cancer! We went round and dropped off a Christmas card, it read……
Dear Grandma and Grandad, Merry Christmas and can't wait to meet you! Love, Baby Smith xxx
Cue that beaming smile, tears, hugs and something to fight for, something to aim towards. Everyone was totally overcome, what a rollercoaster of emotion. Soph and I had the 12 week scan last month, and to see that new life, already having such an impact on the lives of others, made me feel so proud and humbled. We had been trying for a few months and had started speaking to Cath at The Christie about the damage cancer might have done to my fertility.
I can't describe that feeling when Soph did the test, we were like a child on Christmas morning, dancing around the house! A new life, it's a miracle! I especially wanted to write this blog for all the young men that are going through a battle with testicular cancer at the moment. I hope this story provides you with optimism and the hope that you can dream and get everything you want from life.