Today we are continuing with one of our features, personal interviews! You can read our past interviews here. Today Lacuna Loft talks with cancer survivor, Imogen. She is a melanoma survivor, talks to us about her blog, parenting during a cancer diagnosis, doing her research, and so much more!
Lacuna Loft: When were you diagnosed and what is your diagnosis?
Imogen: I have lots of moles & freckles & had noticed a Mole on my back that had changed. I was told by my GP they thought it was OK but I pushed for a referral to the Dermatologist clinic at the local hospital. Over the course of 9 months I was seen by 3 different dermatologists who all advised that the Mole was ok (they used a tool called a Dermatascope which checked the cellular makeup inside the mole). The mole continued to change & grow and was starting to catch on my clothing. I was concerned so went back to my GP & demaded it be removed. The local GPs agreed to do this in their minor procedures clinic – an appointment was scheduled for 2 weeks later. The GP who removed it advised I was a “young pretty lady who wouldn’t want a big scar” so he said he would just shave the mole off & they could always take more another time if necessary. There were delays with the biopsy and the local computer systems failed delaying the report even further. I had been told they would contact me if there were any problems and I hadn’t heard anything so I brushed it to one side.
5-6 weeks after the shave excision (mole removal) I received a letter in the post from the County hospital dermatology unit asking me to urgently attend an appointment the following week to “rule out cancer” – no other explanation was on the letter. The following day (a Saturday) there were 2 further letters advising me not to cancel and stressing the importance of the letter – 1 was from the surgery doctor asking me to call on Monday morning so they could talk to me. On my way to work on Monday I called them up and the GP advised they thought it might be skin cancer and that the hospital would probably want to take a wider excision of skin to be safe. The next day – Tuesday 11th June 2013 at 11:15 am I was advised by a Macmillan cancer nurse that I had Melanoma. They knew it was melanoma and said it was bad but they didn’t know how bad until they took more skin. She didn’t really explain what melanoma was but gave me a leaflet and sent me home saying they would be back in touch to arrange the further surgery. I was called back in 2 hours later. The procedure was done by a Dermatologist on a examination bed in an office – I was conscious throughout and can still smell the cauterising of the flesh now. I left hospital a few hours later with a 7 inch scar down my back. My life would never be the same again.
LL: How did you feel when you were first diagnosed?
I: After what was effectively a very long and drawn out diagnosis, the actual point of being informed I had Melanoma and first main surgery were just 2 hours apart. I was totally shellshocked. I was confused, scared, in physical pain, and emotionally uprooted. I still had no real idea what Melanoma entailed and spent the first few days after my wide excision on the internet reading about Melanoma and what it meant for me. I was terrified – I had been advised it was bad and from what I was reading online I was suddenly aware of just how serious and life threatening this was.
LL: How did you choose to share your diagnosis with your children?
I: My children saw my scar – they could see how scared Mummy & Daddy were – but we didn’t tell them that I had Cancer or Melanoma. We have gradually drip fed additional information to them over time. They were only 7 and 6 years old when I was diagnosed and were too young to be told the full facts until they needed to. I didn’t want them to loose their childhood as well as potentially their Mummy. It was a burden my husband and I felt they didn’t need at such a young age – it was bad enough to see Mummy getting all these scars.
LL: Any words of wisdom to other young adult cancer survivor moms (and dads) out there?
I: Do whatever is best for you and for your children. All Cancers and patients are different – so what works for 1 patient and their family won’t work for another. My children understood that the scars (baddies) were because of Moles and the sun. They understood that I had the scars to take baddies away and that the doctors were going to keep seeing Mummy to make sure the baddies didn’t come back. Over time they have learnt more and have seen me go through other procedures and recently even came to hospital with me and my husband when I went for a CT scan. I started writing a blog about my experiences, so that in the future when they are older they can look back on it and read what happened to Mummy. I didn’t know when I would die (thankfully I am still here 2 ½ years after diagnosis and I am thankful for that every day) and because I wasn’t sure what would happen to me and because everything was happening so fast I thought a written record would help my children process everything I was going through – even if I wasn’t around to tell them.
LL: Who/what/where did you turn to for support?
I: My husband and immediate family and friends were all amazing. The issue was I was having to update everyone at first almost daily with developments and this was both time consuming and emotionally exhausting. So one of the good things about writing a blog about my experiences every day was that extended family and friends could read what I was going through and were kept updated without me having to re-tell the same story 10 times a day. The blog was soon read by all of our friends and family and shared among the wider circles of people we knew. Writing became cathartic – like therapy. I could process my anger and sadness and pain through my words. It was, and remains now, my lifeline.
LL: What (if any) additional outlets could you have used/turned to that you do not feel you had at the time?
I: Many Melanoma patients struggle with the emotional burden of the diagnosis. I am aware that there are Macmillan nurses and counselors available and my Macmillan nurse was very supportive for the first month – but she soon moved on to other patients and I was able to process my feelings myself because I have such a strong network around me – I am lucky. However there have been many times when I have felt sad or in need of help and I haven’t had a contact at hospital that I could reach out to – which I think is a shame. All cancer patients should know the telephone number or email of their Cancer specialist nurse / counselor so that they can get support whenever it is needed.
LL: What kinds of things did you do to distract yourself when you were going through treatments (either at home or at the hospital… Or both)?
I: I looked online and did a huge amount of research. Melanoma can’t always be treated with drugs – sometimes you need to “watch and wait” for it to progress and spread before you can get access to drug treatments. As a result I was very keen to see what I could do to improve my chances and odds for survival. Diet and exercise are extremely important to me. What you eat and how healthy you are can greatly impact your immune system.
LL: When did you decide to start blogging about your Cancer experiences?
I: I started blogging in September 2013 – not long after I was diagnosed – I had been keeping a journal for the previous months so I uploaded that information & carried on from there. My blog is read by over 2,000 people all connected with Melanoma in the UK.
LL: Could you describe how sharing your story has affected your journey with Cancer?
I: Sharing my journey has been therapeutic and helped me process my pain – but more importantly it has given me strength. Through writing I have gained knowledge of the monster I face that hides dormant inside me at present. I get contacted every week by other melanoma patients and have been involved with Melanoma awareness and patient advocacy activities all over Europe. I work with a group of like-minded people who strive to improve the standard and continuity of treatment and care for Melanoma patients all over Europe. I recently formed a not for profit organization called Melanoma Patient Conference C.I.C with the intention of providing an impartial annual conference where patients can obtain the latest information about treatment and trials in the UK.
LL: Where are you now in your journey with Cancer?
I: My health is currently, well – I am N.E.D which means that at this precise moment in time (or at least at the point of my last scan which was 6 months ago) there is No Evidence of Disease. This is fantastic and I am thankful every day that I have remained healthy. However I know how unpredictable Melanoma is and how aggressive it can be. My Melanoma could return at any time – anywhere inside my body – so I must remain in good health and I need to be vigilant. I need to watch my skin for changes, I need to check my lymph nodes frequently and I need to know my body symptoms to know if I am unwell for anything more than a few days and it is unexplained. E.g. a pounding headache or pain in my stomach for no reason. These could be signs of progression and I would need to act quickly & get back to the oncology team to get a scan and put a treatment plan in place quickly if need be. The knowledge of the potential is daunting.
LL: What do you like to do in your spare time?
I: I like to spend time with my children and I run for health and for pleasure. I took up a beginners running group after diagnosis purely for health but I enjoyed it so much I signed up for a 10k which I ran for the British Skin Foundations dedicated Skin Cancer & Melanoma charity It Takes Seven which I helped to launch in 2014. I have continued to run sinceand find it a great release of tension. The only times I can’t run is when work commitments or surgeries get in the way!
LL: What “words of wisdom” and/or advice would you give any young adult facing Cancer or another life-threatening illness?
I: Do your research. Understand what Cancer or illness it is that you have, how it is treated, what new developments there are for treating it. Also find out if you are being treated under the best hospital. There are generally centres of excellence all over the country that specialize in particular cancers or diseases. Travel might be prohibitive, but it is always worth investigating. Where possible get treated by the best. I am thankful that I was able to transfer my Melanoma care to the Oxford University hospitals which is 1 ½ hours away from me. They are a Cancer specialist centre and the Melanoma unit is one of the best in the country. I know that if and when my Melanoma progresses I will be looked after by experts immediately and that as a result of this instant access to expertise, my odds of survival increase. I frequently write about my trust in the team at Oxford on my blog and am honored that they are so happily involved with the upcoming Melanoma Patient Conference. The medical professionals only want the best for all patients and they are just as keen as patients are to see standards improve across the whole of the UK.
Thank you for sharing your story with us, Imogen!
Are you a young adult cancer survivor, caregiver, or do you have a long term illness? Interested in being interviewed by Lacuna Loft? Let us know! We’d love to hear from you!