My timeline - The journey to stage 4 cancer, quite possibly, almost probably, started without my knowledge many moons ago.
This section is about the contributing factors over many decades of sun exposure and damage, the initial diagnosis in June 2022, to the stage 4 diagnosis in March 2024.
Whilst most may never have an issue with skin cancer, unfortunately, my paper white skin was just unable to manage the extent of sun bed use, whilst it has not been stated that this was the main reason for Melanoma, it was documented in my history.
Born in the 70s, kids would play out all day, having fun, in the sun, with no sun protection! Not through neglect - but it just wasn't a thing then, nobody knew of the harm, especially to a paper white skin surface.
Moving through the decade, my family and I took a few holidays away from the North Sea, one in Jersey. I remember two things about this holiday: the WW2 museum, and my mum giving me a back scratcher as I had prickly heat.
Ooh yes, prickly heat, what a pleasure! The stages of red, burnt skin resembling a Dulux color palette, and you could always count on a good conversation about how 'lovely' your skin will look when it turns brown. My skin never tanned; it would simply burn, blister, peel, and eventually revert to its paper-white state, possibly aided by the endless applications of calamine lotion.
So lessons were not learnt back then, summers came and went, so did the cycle of 'burn- peel- sun tan' for the majority, and at this time in history, this is what people did.
Moving through the 80's, the time had come to holiday without my parents, Magaluf and Ibiza, popular destination choices of many.
It's 1988, and I'm on a two-week holiday in Magaluf with the girls—our first trip abroad as independent young women. Naturally, I thought I had the world all figured out!
Sun cream was becoming a thing, and for the first week, I was diligent about applying it. As I lounged under the golden Mediterranean sun, a young man remarked on how "pale" I looked, comparing me to a pint of milk, turning the moment into what felt like a public spectacle for everyone’s amusement.
Feeling embarrassed and my self-confidence taking a hit, I went straight to the shop and brought the infamous 'carrot oil,' lured by the promise of beautifully tanned skin.
Well, I probably don't need to explain what happened, but lets just shorten that experience with one word - hospital.
It's the 90s, I am in my prime, and to complete the look, a sun-kissed body is a must, enabled by the home hire of a canopy sun bed; limitless hours and no worries of ever-increasing utility bills, the world of beige was mine.
My friends and I would club together, and hire a canopy electric sun bed from Gary - AKA 'Gary Fast Tan' ( he had a Lancashire accent). We all would also chip in the electric key meter for the person hosting. With our curly perms, sun kissed skin, we were ready to rave the night away. Not a care in the world, and definitely no concerns about the damage that the non H&S sun bed was doing.
Why would be worried, at this point in time, no one was reporting about future skin cancer concerns, or if they were, I can honestly say that I must have ignored this news.
If I am going to be honest, I do look back now, and I know that I was not happy with the skin colour I was given. Years of mockery about how pale I was, did impact how I saw myself, and I was doing everything I could to not be that 'milk bottle', would I have stopped using sun beds if I had known the consequences at the time? I just don't know.
That will always be a question I am not sure I can answer.
Increased risk of skin cancer:
Sunbeds expose skin to high levels of UV radiation, which can damage DNA in skin cells, increasing the risk of developing various types of skin cancer, including melanoma, the most dangerous form https://www.cancerresearchuk.org/about-cancer/causes-of-cancer/sun-uv-and-cancer/how-do-sunbeds-cause-skin-cancer#:~:text=Are%20sunbeds%20safe%20to%20use,to%20too%20much%20UV%20radiation.
So the Decades pass...
Life has changed.
Family life has become a thing, which means family holidays.
Whilst I was always plastering the kids in sun block , even treated them to a colour one during one holiday, I still at times was not very good at sorting myself out; application of sun lotion normally happening after the ship had sailed.
Possibly there was still an element of the 'if you go away, you must get a tan, or what will people have to talk about when you come back?'.
I recall one year, my friend and I packed up our kids, and headed off on a cheap ' Sun Holiday' promotion to the south coast.
It must have been particularly warm, or maybe warm and windy, as we definitely caught the sun.
Driving home, windows down, singing, we thought we were a delight for any eyes to behold, but in truth we resembled two out of date tomatoes, left on the supermarket shelf.
We arrived back at my friends house to be met my her partner, he said nothing when he saw us, I don't think he knew what to say, not because he did not want to offend, I just think he was in shock.
Once the shock passed, he still had no words, but I feel the raucous laughter gave us a gist of what he was thinking.
So, let's start with the cancer timeline
Its summer 2019, I am at the GP surgery, popped on a bed, the blue curtain saving my dignity whilst I have a 'lady' check.
I am in this semi-clothes state, whilst I am here, in this moment, I ask the GP to have a look at my thigh.
I had noticed a 'thing' on my leg, I can't remember it ever being a mole, I can't really remember where it came from, and when , I just know one day I noticed this small, irregular, browny, bumpy mass.
The GP measured it, said to keep an eye on it, but suggested it was a 'Seb K' wart, which was cosmetic and would need to removed and paid for privately; the word 'wart' just made me cringe, so it was something I did not discuss in detail with anyone.
The months pass, I had no reason to be concerned, epecially as within the next 9 months, the world would be sent into turmoil via COVID
I concluded that it was something that the GP wasn't concerned with, and had suggested 'cosmetic', rather than a medical , so I purchased some skin tag removal type lotion, and applied it sporadically whilst in lockdown; it did not disappear, in fact it became more irregular.
So, moving forward, it's May 2021, COVID restrictions are lifting. I am at a weekend break with my girlfriends, and one of my friends comments on my 'thing'.
"What on earth is that on your leg?" , I remembered what the GP had said about it being a 'wart', at this point I was not sure what to say, so I just said it is a 'thing' and explained that the GP said it was cosmetic etc.
At this point, all available eyes were looking at my leg - remarks such as "ooohhh" , but in a tone that was followed up with a "you need to go back, that does not look right".
So, after being harassed on the group chat, I made an appointment at the GP.
By this time it is May 2022
Referral
So, I attend GP surgery, I see a Locum Doctor, lovely young lady, who looks at the 'thing'.
She was honest and said that she was unsure what it was, and because of that reason, she would be referring to the Dermatologist , and I could expect a phone call, or appointment by letter for them to investigate.
Appointment made for June 2022.
A Dermatologist
A dermatologist is a medical doctor who specialises in conditions that affect the skin, hair, and nails. Whether it’s rashes, wrinkles, psoriasis, melanoma, no one understands your skin, hair, and nails better than a board-certified dermatologist. ( Dermatologist https://g.co/kgs/B35DiSL )
During the dermatologist appointment, a full skin examination was conducted after noticing the suspicious 'thing.' The consultant called in a colleague for a second opinion and mentioned that, while they couldn't be completely certain, there was a possibility it might be skin cancer. To be safe, they recommended removing the mass and performing a biopsy to confirm and assess it further.
At the same appointment, they removed the mass, also taking a further cm area of skin around the site. This is called an exision. It was done under a local anesthetic, stitched up, and I was free to get on with my day. And yes, I dressed, and undressed behind the blue curtain.
I was told on the day that they would contact me in approx 6 weeks with the results.
Results are in!
So, I receive a phone call from Dermatology, and I am asked to come back to hospital to discuss the results. I feel at this point I hadn't really processed, or considered that it might be skin cancer.
I was invited into one of the consultation rooms, and the two-way formalities of "how are you" and etcs commence.
I am relaxed, and still oblivious.
"So, we did an excision on your right thigh, this is following a consultation where we had concerns about the irregular mass on your leg" seeking acknowledgement from me, I nod my head, she continues...
"The biopsy results have come back, and I am afraid that the removed area is in fact skin cancer"...
A moment passed.
At this point, I suppose I am a little 'blown away'.
The consultant then proceeds to explain that it is classes as stage 1b, at the time this actually meant nothing to me, I just heard 'skin cancer'.
I was handed a Macmillian support leaflet, and explanation of next steps.
I went home, and told my partner "I have skin cancer"
I really don't feel at this point I understood what was going on, what it meant, and the significance of Melanoma.
Next steps following stage 1b diagnosis.
About 6 weeks after the consultation regarding the outcome of the initial excision, the process starts to investigate if there is any further cancer cells remaining, or if the cancer has spread into the lympathic system.
Procedure:
The day before the wider excision, a radio-active liquid is injected into the original site of the cancer. The liquid feds itself up to the attached lymph nodes to that area of skin.
The attached lymph nodes are marked so they will be the only ones removed; before this medical intervention, the surgeon would have to remove al lymph nodes in that area, this could always lead to further complications such as lymphodema.
I was afforded many blue curtains during this episode.
The operation is a day surgery, and unless there are any complications you can go home and rest.
Again, there is a waiting game to get your results.
For more information please follow link to Cancer Reseach
https://www.cancerresearchuk.org/about-cancer/tests-and-scans/sentinel-lymph-node-biopsy-for-melanoma-skin-cancer
Time for the news that may just impact my future.
Its not an easy wait to be honest, your future is currently in the hands of a testing establishment.
So, once again, back to the consultants office, and I am now actively looking for my blue curtains - they have become my distraction, my safety net, at this point I am a little anxious about the results; during the period of time between operation and results, I had some complications with swelling in the leg, and groin, and was a little under the weather.
A few occasions resulted in a trip to A&E to ensure that celulitus and sepsis were not the cause.
I had started to now process that what I had been through was in fact , quite serious.
I had, at times, referred to the experience as just 'skin cancer', I wasn't aware of just how complex, and serious it was.
The results are:
No further evidence of cancer found in the lymph nodes that were removed, and the wider excision site.
October 2022 I am good to go - I am cancer free.
Taking precautions
I feel that I had a close escape, a brush with an experience, but somehow felt that due to the stage 1b diagnosis, that it wasn't as importanrt as other cancers. I found myself telling people "it was just a little skin cancer, stage 1b, all cleared up now".
I had become more aware of my body, and was now taking precautions in the sun, carrying 50 block in my hand bag for those 'caught out ' moments.
Learning curve - I think it is important to value personal experiences regarding people going through any type of cancer, cancer is cancer, regardless of stage, location or type.
Something is changing
I am sailing along in a sea of calm.
It's Oct 2022. My partner and I get engaged. Life is good.
Sailing into 2023, the sea is still calm.
School summer holidays are in sight. I am tired, but that is a standard in the world of education.
I remember having issues with my bowels, to the point I was starting to become mindful of days out, and ensuring that there would be a toilet.
I made changes to my diet due to the constant diarrhea, even invested in a food allergy test.
The diarrhea persisted, the added bonus of nausea, and digestion issues now in play.
It just did not cross my mind that it was linked to cancer, so I continued to just focus on diet.
October 2023, I started to notice that I was coughing, literally all of the time.
The digestion issues were now at a point where at times I would vomit my evening meal up.
I kept assuming that working in a primary school, the symptoms were due to the snotty noses, and unwashed hands I was dealing with.
Christmas came, I was struggling to digest food, but again, put it down to the rich foods, and red wine.
NYE 2023, My partner and I attended a 50th bday, I remember ordering a Pina Colada drink, as I just felt I needed something milky, we continued to party into 2024, I, for the first time, could not drink the fizz.
January 2024 - things are getting worse, the continuous cough, bad stomach, and pain in the rib area.
I phone the GP for a check up, I believed at this point it was gall bladder issues.
I also inform my GP that I have a swelling in my groin, and cervix area.
Blood tests are done.
Liver function comes back as a concerm, but this could be linked to gall bladder so a blood test is ordered to explore in more detail.
I remind my GP that I still have some issues with swelling in my groin area, she orders a CT scan.
In my mind, I am still thinking gall bladder, acid reflux, and possible lymphodema, or IBS stress.
I am now waiting for an appointment for a CT scan, and endoscopy
Once again I am back looking at blue curtains, and waiting for appointments
The day my life changed.
The appointment arrives for the CT scan - end of Feb 2024
I attend. The ceiling has blue clouds as a distraction - quite pleasant.
I am relaxed, and amused at the sensation of wetting yourself due to the liquid used to enable comparisons.
In my mind, I am hoping that they can find the issue, the feeling of being unwell is starting to impact my life.
Beginning of March 2024 - the endoscopy procedure takes place.
I was not about to be brave, so when they asked me if I wanted to have a local anesthetic, I grabbed the opportunity, I felt obliged to explain that I had infact been up all night vomiting, and so my throat was sore.
Whilst being prepared for the invasion of my throat, and esophagus, the consultant asks if I have had any operations in the last 2 years, I explain about the excision due to melanoma.
The procedure goes ahead - I can honestly say with my big girl pants on - an awful experience.
I am in the waiting room, its my turn to go into the consulants room for the results with a nurse.
"We are pleased to say - we found nothing wrong"
I am almost sad , I ask if they were able to see the gall bladder, as I was confident it was that, I had at this point told them that I was not a medical professional, but had infact googled my symptoms; the nurse politely smiled and said I could go home.
I was leaving the building, partner waiting for me, when the nurse came and stopped me...
"The Consultant would like a word about your results, if you want to speak to him now, we are aware that you have an appointment tomorrow in Bracknell to discuss your CT scan and bloods etc"
At this point I am thinking, it will save a journey tomorrow, so I said to the other half, wait in the car, I wont be long.
I am in the waiting area, I am invited through to the a room with seats, no blue curtains in sight.
The consultant that did the endoscopy and a nurse arrive to speak to me.
I feel at that point I could tell that something was wrong, the body language and solitary faces set the scene.
I am in a moment of 'this feels like a TV drama'.
Where are my blue curtains - they're not here.
The consultant introduces himself again, but in more detail. He explains that is he aware that I have an appointment tomorrow with his colleague, who is in fact in the clinic today, and is happy for me to talk to you.
So, I regain my composure, as I am now thinking 'ahh, they are saving time' , he is going to explain what would have been said tomorrow, and save me a journey, taking note, 15 minutes ago, I have been told that everything is ok.
Looking at me with a blank expression, he starts to speak...
"This is really awkward, as I don't know you, you haven't been part of our clinic, but when you mentioned earlier that you had a previous operation for melanoma, and a recent CT scan, I looked at your scan, I am a liver specialist, and I then spoke to my colleague, and we decided that I could speak to you today" I am looking at him, I say nothing, but need him to get to the point as my brain is in over drive.
He continues " This is not easy to say, the CT scan, it is showing comparisons to having melanoma cancer in your liver".
Have you ever seen the film saving Private Ryan, when they land on the beach in the opening sequence, the bombs drop and shell shock kicks in - well that's as near as I can describe to how I felt in this moment.
Where are my blue curtains - where am I supposed to look ?
He is talking, I am not coherent, I am in shock. I come back to the sound of his voice, he is talking about my liver, and tumours. I look at him, and ask if I can phone my partner up, I say he is only in the car, can he come in here please?
I still think about that moment
The shock
The niavety
The moment that changed my life.
This is where it really starts..
1. Consultant
I had been given the outcome by default, but the official appointment was the next day with a consultant, I was advised to attend - so I did.
The consultant explained in more detail about the cancer, I can remember trying to listen ,trying to process, but I was still blown away that a small area on my leg, that had been initially described as cosmetic, was probably now at stage 4; the official terminology - Metatastic Melanoma stage 4 terminal cancer.
He went on to explain that Melanoma can spread to the liver, lung, and brain, the CT scan had shown similarities to melanoma, and that whilst they were assured that what it was, a biopsy of the liver would clarify this, and clarification would be needed to decide what treatment would be of benefit.
He went on to also inform me that there was a nodule on the lung, but there didn't seem to be a concern about this.
I had to ask "How has this happened, I was given the all clear?"
Conservative response "The probability was that some cells may have slipped away at some point before, or during the initial excision", further describing it as 'unfortunate'
I am now officially on the cancer pathway; a certain amount of time that professionals have to work within from diagnosis to treatment - maximum of 6 weeks, this would also include a triage of professionals that discuss the case.
All I can say is that the whole experience of that 24 hours could only be described as 'surreal'.
And yes, the first thing I did was look for my blue curtains, and this helped as I was refusing to cry in front of this stanger.
As per, the second thing is to look at Dr.Google - always a great way to add to your anxiety.
https://www.england.nhs.uk/cancer/faster-diagnosis/
2. Biopsy
Biopsy date arrives.
Local anesthetic, key hole surgery.
Lots of curtains during this experience.
I did cry - quite a lot during the day, reality has started to hit home, all previous appointments had been verbal, this was a physical intervention, and the reason was to ascertain whether the observed shadows were cancer.
You don't get the answers that day, you have to wait - learning curve - get used to waiting for results.
3. Oncology Appointment
An appointment comes via a telephone call for Oncology.
Oncology are based in the Cancer Unit at the hospital.
My partner and I walk in, not a clue what is happening, we are still learning about the process.
In the room is the main Oncologist, the Cancer Skin Nurse (CSN), and another Oncology Consultant.
They start to discuss my case, and say that they are surprised to see how well I look!
My curtains are there, squashed together like a concertina, desperately trying to ensure that I know they are there.
I just look at the curtains, I look at the professionals.
They all comment to me and each other " Wow, you look so well". Possibly my face looked confused, so they further explained that the scans had identified numerous tumours, I assumed I was supposed to look like I was dying?
The main Oncologist said that they normally have to wait for the biopsy results to start medication, but they feel in this case, they would like to start straight away.
They start to go about the medicine and side effects. Infact, that is really all I heard, side effects.
I had to sign a form to say that I understood about the side effects. At this point I said that I was unsure about going ahead with treatment, my reason being that the side effects were horrific, and at this moment in time, I don't know whether I want to take that risk.
I ask "OK, what is the prognosis here, what is the rush, you've just said I look well!"
Consulatant responds - " Possibly two years with meds, a year without "
I look at my partner, I look at the professionals "So basically, I could have two years with the chance along the way of horrific side effects that might result in me going into ICU?"
I felt at this point everyone went into panic mode 'take the medicine', 'take the medicine'.
So, I signed the 'I will not sue you if I fall really ill from the side effects of your treatment' form.
I am told it will start within 3 weeks.
4. Treatment starts
Well, it wasn't 3 weeks, it was 10 days. I was asked to go in and get various tests done.
Blood tests - 17 in total.
Weight - always a blind fold job
Height - never quite made the height requirements to be a BA air hostess!
Blood pressure, and many other things.
I wasn't really prepared for the rush - I had in my mind that the side effects would take over, so I wanted to do as many things as possible before it started.
The one decision I did make was to sign myself off work during the treatment - to give it the best chance of working.
It was going to be 4 doses, every 3 weeks of something called 'Ipilimumab and Nivolumab', this was immunotherapy.
I had a visit to the treatment ward, and things were explained, to include the side effects, and yes once again I had to sign that I understood about the infamous side effects.
Melanoma cannot be treated with chemotherapy or radiotherapy.
1st intravenous April 2024.
https://www.nhs.uk/conditions/melanoma-skin-cancer/treatment/
5. Immunotherapy.
So, to be honest the first round was not too bad. I did sleep a lot, but generally I felt ok, so much I thought, this is going to be an easy ride, I've got this, things will be back to normal soon. I was feeling positive.
Second treatment comes three weeks later.
I was ok for a few days, and then 'boom', it hit me like a sledge hammer.
I was poorly. I laid in bed, unable to function. I was tired, my body was not able to move, or bare weight.
My appetite had just gone, and I was out of breath.
The Oncologist phoned me, I told him I was not well, explained symptoms, and he said I had to come into hospital.
I spent the night, not quite 4*, but to be honest, better than I anticipated, I would have given a good Trip Advisor review.
The follow up was with my Oncologist, I told him I did not want to carry on with the treatment, and that I would take my chances.
He commented that I did look a bit 'flat' - I responded " No sh1t Sherlock".
He went off, and came back saying that I could try a different form of Immunotherapy - Mektovi and Braftovi.
I declined, and said I wanted time to consider, as once again the list of side effects just put me off.
He told me I didn't have time, and reminded me that I had a liver full of cancer. reluctantly accepted the offer of the new tablet form meds.
At this point I was feeling lost, and thoughts about how unfair this all was were at the forefront of my day.
I did spend a lot of time crying. Mainly in my own company.
6. Tablet Immunotherapy
So at this point, I am having regular CT and MRI scans to monitor the cancer in the liver, but also to observe changes, to include any spread to the brain.
Blood tests are done regularly to gauge liver function, and any toxicity damage to the rest of the body via the Immunotherapy.
I was due to be married in August 2024, a planned wedding from before diagnosis. This was cancelled after the second round of introvenus, as I wasn't too sure I would be able to make it physically.
I started the tablets, and I was starting to feel like I had some control back.
The tablets were released monthly following bloods, scans and Oncology.
The tablets were making progress, in respect of they were holding the cancer, liver function was looking good.
The Melanoma would never go away. The idea of the treatment was to hold the cancer, and stop it from spreading. The cancer is terminal, but it can be in this position for a while.
I can take the medication for as long as I can either manage without any further damage to my body, or until the cancer overides it, and starts to fight back.
Things are looking positive, so much we decide that I can manage to get married, we are back on track - fighting cancer and getting on with life.
7. Nothing lasts forever
Some months later, I start to feel unwell again, consistently unwell with breathing issues, muscle weakness, appetite loss, pain etc.
During my appointment I ask them what is next, it feels like the medication is playing havoc with my body.
The medication is halved, the risks are explained.
I am of the mind set that I would rather have some quality of life whilst I am alive, rather than laying in bed to stay alive.
One of the significant side effects is constipation, and that is painful, impacting my digestive state, and putting pressure on my liver.
Sue Ryder - the palliative care team are part of my care team now, a massive support for pain relief.
I have now been introduced to Morphine, and laxative sachets - what a game changer !
8. Where I am at present.
I am still on half prescribed meds, given monthly after blood tests
Morphine has been doubled.
Scans every 3 months.
Appointments with Oncology, Sue Ryder and Cancer Skin Nurses.
One 999 call out due to inflamed liver
Half meds are starting to have the same physical impact as full prescription, however, I have had a few months out of jail, so I can't moan.
I have introduced a mediterranean diet, Vit D and K, and Manuka honey - I should imagine most people with terminal illnesses are willing to try alternatives in a bid to support the body to manage the brutal impact of side effects.
I also made the decision to give up working completely, whilst I loved my job, it just was not going to work, physically I just couldn't manage, and I felt anxious about letting people down. It was the right decision, and has allowed me to rest when I need to.
I am determined to prove the Oncologist prognosis time of 1-2 years wrong, to be honest I love a good old battle; April 2025 - 13 months in to journey.
The blog is giving my brain a purpose as the rest of the body is a little pre-occupied at present!
Create Your Own Website With Webador