First of a couple of posts this evening:
As I posted a couple of weeks ago, I was asked to relate my story to the Annual Conference of the Lymphoma Association, held in Birmingham last weekend. I thought that I would share with the blog, the text of my talk. It lasted about the required 15 minutes, though I did stray off-script a number of times.
It was a very interesting thing to do and was very well received by the audience, many of whom came and spoke to me afterwards. Raised a few laughs as well, so that was all good.
And, as usual, the rest of the day was informative and very useful too.
Good morning, ladies and gentlemen.
It’s a pleasure and a privilege to have been asked to speak to you today. When the Association asked me to be the patient speaker this year I was surprised, but honoured and delighted to be able to say “yes”.
By way of introduction, I am Andy, I’m 53, married with two grown up children and a Jack Russell and live on the Wirral. Originally from Maidenhead, we have lived in the North West for the past 22 years. I am a Chartered Surveyor and Project Manager for a commercial property developer based in Salford Quays, and have recently delivered the first phase of a multi-phased project in Blackpool.
In my spare time, I enjoy photography, travelling and walking the dog – preferably all at the same time.
I am a lucky man.
This is a thought that I will be repeating through this speech, but it’s true.
It is almost six years to the day that I realized I had a problem. The day beloved of Star Wars fans everywhere, May 4th, was a particularly memorable one for me in 2009. It was a Bank Holiday Monday and on getting out of bed, I noticed a dull ache in my groin and a lump to go with it. I hadn’t noticed anything wrong before and looking back over the weekend, I didn’t think that I’d done anything strenuous to cause a hernia. For that’s what I assumed it was.
I was able to see the GP a couple of days later. “Sorry, Mr Barton, this is not a hernia. You need to get this checked out and soon”. Looking back, my first stroke of luck was that the GP knew, although he didn’t tell me, that this was a lymph problem. Lots don’t. Despite lymphoma being the 5th most common type of cancer in the UK (according to very reliable sources), many GPs go years between seeing patients with obvious symptoms.
Now, I am a lucky man because I have BUPA through my work, and I was able to see a general surgeon about a week later. A groin specialist – just the man for the job, I thought. He couldn’t find a hernia either, no matter how much I coughed and looked left, but was concerned about the lump. An abdominal CT scan duly followed and, as always, a wait of a fortnight followed while the results were analysed and returned. I soon learned that life on diagnosis is made up of lots of fortnights.
I met him at tea time on the way home from work to receive the results. Incredibly my liver, spleen, kidneys and other useful bits below the diaphragm were all in tip top condition – it’s just that the lymph nodes weren’t. Not just the one we could feel and see in the groin, but deep within the abdomen too.
How long this had been growing in me, is impossible to know, of course, but he reckoned for it to have got to the state that I was presenting with it might have been a couple of years. “I need to do a biopsy to be certain. What are you doing in the morning?”
“Having a biopsy, by the sounds of it”
“Yes. No tea for you tonight…”
At first the biopsy surgery went well, but I developed an infection that sent my temperature to 40C and ended up back at the hospital on IV antibiotics for a few days, just prior to the arrival of the biopsy results. Yes a fortnight later.
Now, I like people who don’t mince their words. My surgeon was certainly one of these at the surgery a couple of days later.
“You have cancer”
“But, if you have to choose a cancer to get, choose this one. Don’t choose pancreatic or oesophageal.”
I thought that I would bear that in mind next time I was looking for a cancer to get.
Getting cancer wasn’t my choice, obviously, but for some reason, I felt reassured by all this.
Eventually, after some input from my GP, I found myself sitting in front of my haematologist / oncologist. After some pleasantries and some history, he looked through the results of the biopsy, blood results and the CT scan and had a good poke around in the various parts of the body that would soon be poked and prodded a lot more. Not good news.
“Well, Mr Barton. I can confirm that you have a chronic cancer. Follicular B-cell non-Hodgkin Lymphoma to be precise. Probably Stage 3. There are 4 stages.
But if you’re going to get cancer, get this one”
Hang on… were these people all working from the same script?
And, I am sitting in front of him, having left the office an hour before, with Stage 3 cancer, when the ultimate is Stage 4? A month ago, I didn’t even know there was anything wrong with me. How does this work?
Let’s face it, and as many of you here will know, either from first or second hand experience, getting a diagnosis of cancer is not great. It’s not something that one would plan to get and, with lymphoma, it’s not necessarily something that you can do much about to prevent getting. What I did appreciate however was a specialist who clearly knew his stuff and was prepared to be honest with me.
I was 47 when I first sat in front of him and to be told that I had Stage 3 lymphoma wasn’t the best news. And to be told that the average life expectancy of someone sitting in that chair, with what I had, was 8-10 years, was a bit of a shock. So much for saving for a pension…
So, how did I feel about this news?
Well, stoical is probably the best way to describe it. But one of my initial thoughts was “Oh, no. People will expect me to run a marathon, now…”
And then, to cap it all, they tell you that they’re not going to do anything about it! Brilliant.
I was on “Watch and Wait”. “Wait and worry”
By this time of course, I had done what you’re not supposed to do. I’d been on the Internet. I’d put lymphoma into my search engine and all sorts of really good advice was revealed in front of me. Some not so good advice too… Be careful out there!
However, I had also found this small but incredibly helpful charity based in Aylesbury that had exactly what I was looking for. Within a couple of days, my leaflets had arrived and I was beginning to understand what it was all going to be about. What I could expect, and what might be in store.
Watch and wait.
So that’s what we did.
I had a PET scan in the meantime and following the advice of the radiologist at The Christie, was very disappointed not to have found a pregnant lady to avoid for 24 hours.
I had the bone marrow biopsy – while wearing my suit. That’s a morning I won’t forget.
And I had to tell my children. They were both in their early 20s. My son lived locally, so he was told in our kitchen one Sunday. I told him all about it and he took it in his stride. My daughter lived in Edinburgh at the time and we arranged a special visit to see her.
“But you never come up mid-term. What’s wrong?”
Fortunately, the Association’s leaflet came to the rescue again and explained it all and she was reassured that I wasn’t going to leave my cameras to her any day soon.
Watch and wait…
In the autumn, it was recommended that some radiotherapy on the original lymph node point in the groin might be beneficial. My right leg was suffering from some lymphedema and the radiotherapy might assist in tackling that problem. So, after returning from a holiday, I had 12 sessions of radiotherapy. I’m not sure that it helped very much, but what was interesting looking back was that despite it not being hot in the hospital when I was seeing the radiology consultant, I would sweat quite a lot.
“Do you always sweat like this?” he asked. As cool as George Clooney.
You will be able to see where this is heading… I was suffering sweats during the day. By the New Year, they would be starting in the night-time as well.
“Watch and wait” had become “You need chemotherapy”
I moved onto the R-CVP in February 2010, needing the full 8 sessions in the electric chair. The staff at my local general hospital in Chester were absolutely fantastic and I got to the point where I was looking forward to having another round of treatment. It was a very good excuse not to go to the office for a few days every three weeks!
The last of the chemo and the summer came and my consultant said that I would very much benefit from “Maintenance Rituximab”. Two years of bi-monthly treatments and with a bit of luck and a fair wind, I would probably extend my remission by 3 years or more. But there was a problem… It wasn’t NICE approved. The cancer drugs funding was difficult to obtain as well.
We looked at re-mortgaging the house. My father, who had just retired, offered his lump sum from his pension to pay for it. My employer even offered to help, which was an amazing gesture. But, as I have said, I am a lucky man. BUPA have a fantastic policy with regards to cancer treatment and they paid for the maintenance.
Not everyone is so lucky and having shared my experiences with Sally Penrose at the Association, she asked me to contribute to a NICE Committee that was considering Ritux maintenance funding – obviously I jumped at the chance.
Now, that was an interesting experience. I don’t think I have ever been in a room with so many PhDs before – or since – but fortunately the Committee recommended maintenance treatment through normal NHS funding and now anyone who needs it should be able to receive it without worry. Long may that continue!
By mid 2012, the maintenance was all over, and I am now still in remission, three years later. No sign on my CT scans of much activity in here.
So, I am a very lucky man.
I am very fortunate in having family and friends and colleagues who have supported my throughout this. I am very grateful to every single one of them and can’t thank them enough for what they continue to do for me.
But others aren’t so lucky. And that’s why I decided that I would volunteer to become a “Buddy”. I spoke with Anne at the Association and one Saturday found myself in Aylesbury for the training day. So far I have had three buddy contacts, one of whom phones me fairly regularly, just for a chat. She is currently in the middle of her Rituximab maintenance and isn’t finding it as easy as I did. Which just goes to prove that everyone’s experience of this nasty disease is different.
Now, for many people, lymphoma isn’t one of those cancers that can be cured. It can usually be managed, but will often come back and have another go at you. This is something that can be very hard to come to terms with and, in my opinion, is one of the failings of the standard treatment regimes available today. The actual medical intervention is fantastic. The care that they administer in hospital, while you are being treated is in my experience beyond reproach.
Yes, patients post-treatment are given regular consultations and check-ups. I am fortunate to now be on six-monthly visits, the next of which is in June. Given the current state of health that I enjoy, these are now just routine prod and pokes and a chat with the consultant. But it’s what is offered between these visits that is somehow lacking. As I have said before, I am very stoical about what has happened to me and I am determined to make the best of every day. But there are days when it’s all too easy to over-think things. When, with the best will in the world, the black clouds come over the horizon.
I have loving family and friends to chat things through – but confess that I don’t necessarily feel like raising matters when I’m feeling a bit low. Not with friends and family.
My consultant at time of my maintenance was mentoring a PhD student who was doing some research into the psychological affects of lymphoma. I was asked to spend an afternoon with her, responding to her questions openly and honestly. I told her things that I have never told anyone else, for fear of burdening them unfairly. She would not be taking any burden, so it was a really worthwhile experience. And one that I would recommend.
As part of the overall care offered, when the treatment itself is complete and “you’re on your own”, a further layer of care should be offered. I do think that chatting things through with complete strangers allows you to open up much more than you feel able to with your loved ones. Cancer patients like us should have access to counsellors, trained and experienced in these issues. This Is not a normal thing to have to live with, knowing that you have a good chance of getting ill again at an unknown time in the future.
This is where our fabulous charity can help.
One of the most useful things I did when I was first diagnosed was get myself to the Manchester support group. Some of my friends there are in the audience here today. I arrived with this “You might have 8 – 10 years to live” thought in my head, and the first person I met had been diagnosed 15 years previously. Everyone was so friendly and supportive – I can thoroughly recommend joining a group if you don’t do so already. Just being in a group where everyone has had similar experiences means that you are on the front foot when coming to discuss any problems you might have.
Then there’s the Buddy system gives you access to a contact who has been through what you have. And the helpline is there, to guide and support you.
All good stuff.
So, here I stand, six years on. With some experiences that I would have chosen not to have, if given the choice. But actually, I am glad that I have had them. They have made me look at my life in a different way. I have done things that I wouldn’t have done if I hadn’t been diagnosed. I have brought forward things that might have been put off until retirement. And I think that I have become a better person.
I am a lucky man.