All the things you want to know, but are maybe too cautious to ask.
Let's be honest, talking about Cancer can be a tricky conversation at times. There are probably many questions you want to ask, but may feel uncomfortable, worrying about causing upset, or that you are being intrusive.
This page is for you to ask me those 'questions', and I will endeavour to respond as honestly as I can from my perspective.
Cancer impacts people in different ways, physically, emotionally, and financially, with a whole heap of uncertainty for all involved.
This particular section of my blog was initiated when I had to ask my Mum how she felt about me having Cancer. I wasn't sure what was going on for her. I asked as she was dismissing and avoiding conversations, a communication nightmare, I needed to talk, she wasn't able to listen. Her response was that she was unable to process the news, if she ignored it, and didn't accept it, it wouldn't be real.
We all deal with things in different ways, and at different times, there is no right or wrong in situations like this.
I hope this page allows for some questions to be answered, enabling communication and support for anyone that is going through a tricky time.
Question Time
Q. How did you process the diagnosis, how did your family process it?
Good question. I am not sure I have still fully digested what is going on tbh. I feel like it is still very surreal. If I had a broken leg it would be in a cast, and I would visually see the illness, aside from feeling the pain that went with it. Possibly because I've only been told I have cancer, and I haven't seen any visual proof, it may not be resonating with me? I do have days where I am in pain, or physically ill, but I don't really think I have grasped in full that I am poorly with cancer. However, I know there are days when I look rough, which at times reminds me that I am infact ill, and at times my body reminds me too.
My family have managed in different ways, at different stages. One family member described it as a never ending grief cycle.
At first I feel everyone went into their own chaos, thinking the worst, and thinking it was imminent, and this is totally understandable, at the beginning of the stage 4 diagnosis it was just very chaotic - scans, blood test, meds, appointments etc, all of us unbeknown and uneducated in the area of Melanoma. However, we are learning to live in the 'new normal' as I like to describe it, taking one issue, illness, side-effect, scan, DAY, at a time. It is not that it has got easier, I think we are just starting to understand the process more.
Q. Are there any times that you experience 'normality' or have things totally changed for you, and the people around you?
Ohhhh, now there is a question. I like to call it my 'new normal'.
I am not sure I will ever be the same person I was, but we do have days of normality, we have to, life hasn't stopped, it can't. The house still needs to be cleaned, and food needs to be cooked, just not by me all the time.
I try, we try, to normalise as much as possible, in the early stages, I think we were all walking on egg shells a little, needing to 'carry on', but not knowing how to, as we were still living in shock, and not knowing what was going to happen, and when.
I feel is it has evolved into our 'new normal', more quickly for those directly involved, it is much harder for those on the perimeter, but even harder for those stuck in between being with you some of the time, rather than all of the time, as they are the ones that are still navigating their way through the situation, wondering what to say and do.
Normality at this present point of the journey, when I can, is going to the supermarket, doing some type of housework, doing my blog, meeting up with friends, and attempting to make myself look reasonably human.
The reality is - things have changed. It is now about learning to accept, evolve, understand, and adapt to what the day brings.
Q. Where can family or friends get support?
That is an important question. At some point in our lives, something may change, and we may need support to get through it.
I fell apart a few weeks after diagnosis, during the second round of immunotherapy, my body and mind were just exhausted.
I contacted Macmillian, who referred me to one of their counsellors.
Below is the webpage link :
Q. How do you compartmentalise your illness so you can enjoy 'precious' time with family and friends and 'forget' about the cancer, just for a while?
This has been one of the biggest learning curves.
Whilst you might be in a position of distraction, others around you may not. This is an area that has had to evolve through experiences and reflection.
It was hard at the start, I feel because the professionals used the word 'terminal', it made it sound imminent, so every day was suffocated with upset.
I feel blessed that I have had a fantastic support network of family and friends around me that have been on the journey with me from the start, so we have organically grown and evolved together, allowing for the upset to pass, and the games to begin.
There are days, or times, that it can be overwhelming, and I do still get upset, upset that I may not get to experience special dates etc, but I have learned the art of distraction, and goal setting.
I have learned to make short, achieveable goals (I sound like I am back in the classroom), i.e. booking a lunch date with friends, or having 'date-night' with the ol' man, these are not booked far in advance, and if needed, can be cancelled. If I am well enough to go, I go, and I make the most of it, not taking anything for granted, and absorbing every moment.
If this journey has taught me anything - it is to be grateful for what you have, and never be complacent about even the small things in life.
But again, I shout loudly from the rooftops - I could not have done this without the support of my family and close friends, they have made moments very special for me over the last year.
Q. How are your family dealing with it all?
In the beginning I feel all of us were just bomb shelled - much life grief, everyone got through it in their own way, in their own time, whilst we are still picking up the shrapnel, we are all aware that the journey is not over yet.
I got married 4 months after diagnosis, to my partner of 9 years. He has been a solid consistent of support for me throughout; I am aware he has had moments of anguish, upset, anger, and shock. He deals with things face on, and his coping mechanism is to go boxing or listen to music.
The kids - all different in their management, and approach, presenting at different times, I suppose that is what keeps things real, you're still a mum, even if they are adults. My biggest distraction - two very young grandchildren who do not have a clue what is going on - and so keep things very natural and undisturbed.
My family are all 270 miles away up in the glorious N.E. -
Mum - doesn't like to talk about it in great detail, I am aware that she struggles to comprehend the future, so we discuss the weather, dinner, and lots of other normal things.
Sister - I phone her when I need to cry - she cries with me, so the world is OK.
Extended family are also 270 miles away up in the glorious N.E. - they stay in touch to ask how I am, with my Aunty Maureen always telling me to 'look after ya'sell Pet'.
Q. What occupies your mind and time when you are feeling well enough?
I would love to say wholesome things like: making homemade bread, the gym, reading, making jam, knitting - but I am just not that person - I like an easy life.
I have found doing nothing really hard - I was a 100mph person, nowadays, mainly due to the meds, getting out of bed and getting washed is an effort!
So, in no particular order with the exception of no.1*
*Grandchildren (energy level priority)
Annoying the Ol' Man
Meeting up with people
What's app group chats - especially from certain members who love to send an insta video link
Buying crap off Vinted
Buying crap off Temu
Instagram videos of dogs
My blog
Trying to be a Mediterranean Chef
My latest venture - my herb garden ( It has 5 herbs in it, but it is a start)
Current Temu order on route!
What is a good day for you?
WOW - million dollar question.
OK, If I am honest:
A good day, is being able to get up, get washed, eat, do a 'something', and depending on what that 'something' is, may mean I don't need an afternoon nap.
A good day - is my body responding to the meds positively without me having to ask Alexa "What is wrong with me today?", I look remotely human, and can walk and talk like I haven't just been birthed by a Sloth.
A good day is me getting up about 10am to take medication, on time and downstairs, if I am feeling chirpy, I may get up earlier - well maybe a little earlier.
A good day - is feeling physically and mentally well - as to be honest, they go hand -in-hand.
I try to organise my days as : one day activity, the next day rest, If I am going somewhere special, I may rest for 2 days prior to going, just so I can make the best of the day. This is not just because of the cancer, it's the impact of the cancer medication on my body, and the added bonuses that come with that, to include more medication to counterbalance the cancer medication :)
Q, What is a bad day?
OK, this is hard to answer, as it has become something that is starting to define me, and dictate my life of late.
A bad day is not being able to wake up feeling rested enough to get up
A bad day is not having the energy to wash
A bad day is feeling overwhelmed and depressed because you cannot get up and get washed , or dressed, and make yourself feel normal
A bad day is being in agony with stomach pain due to constipation
A bad day is vomiting because you have not eaten, you cannot eat because you're in pain, but also have no appetite
A bad day is my arms and legs being in pain from the medication
A bad day can sometimes lead to, two bad days
A bad day is feeling guilty that you've been in bed all day and not achieved anything
A bad day is sh1t to be honest - I hate them
A bad night is a distressed sleep due to pain, or the side effects of morphine to alliviate the pain (night terrors)
Q, Are you happy that you chose to take the treatment?
That is a really good, thought-provoking question, and something I still think about.
I feel like a lot of people that are in my situation have limited time to consider treatment, I think most would grab the opportunity of being well again. I always said that I would not have treatment if I was ever diagnosed with cancer, this is because I have seen the damage that such an evasive medicine can do to the body, however, this was before I was in the situation of having a cancer diagnosis, surrounded by professionals with a ready made plan for me.
If I go right back to the beginning, to the first excision, in effect that was a treatment, unbeknown to me at the time it was identified as one of the possible causes of the matatistic cancer (stage 4 spread); cells may have slipped away at this point - but , I will never actually know.
At the point of the stage 4 case consulation, and the medicine plan on offer, I was still very much in disbelief, and I did say, "I am not sure if I want the medication, as the side-effects appear to be as intrusive as the cancer itself". This was met with some disbelief from the Oncologist, and they were very honest with me - it was my only chance at this late stage to prolong life; approx diagnosis by them at this point was : 2 years with meds, and a year without.
I felt that I owed my family the opportunity of discussing this in more detail, so I agreed and signed the disclaimer regarding the side effects, knowing that if I got home home and changed my mind, I would just cancel.
I went ahead, I only managed 2/4 introvenus immunotherapy sessions, due to respitory, and other debilitating issues.
At this point, I withdrew from further treatment.
I was then offered 'Targeted Therapy'; tablet form of immunotherapy. I initially declined, I wanted time to consider the impact on my body, as again the side -effects appeared to out-weigh the benefits. I was told that I didn't have time to consider this, it had to be choice today.
I decided to go with it.
So I plodded on with the new tablet form. After a few cycles (monthly check ups and next batch release), I again became very poorly, and decided again I wanted to withdraw. I was given the option of a reduction in quantity, I took it.
I am 9 months in, and taking half the original prescription, the lowest amount I can have. I have had 1 break for a week due to a stomach bug. I am currently, (May 2025), on a 3-week break due to a recent diagnosis of Peripheral Nueropathy down my right side, this unfortunately is a side effect from the medication. I am not doing too bad if I am honest, I've have had some control in my decisions, and my body.
I feel I am in a place now where I know the medication is a wall that is holding the cancer back, what I need to do is to try and support the wall by listening to my body and eating a diet that assists with keeping me as healthy as I can be.
I am happy I chose to take the medication? - I am still here, so it must be working, so yes, I suppose I am.
Do I regret withdrawing so early into the cycles? No, I had to a make a current life-balance choice at that time.
Q. Is there anything you would change looking back?
pending
Q. How do you manage your mental health?
WOW - what a great question.
At this point, it would be unfair for me to be nothing but transparent.
Whilst dealing with cancer, I am of a certain age that dictates the dreaded 'Menapause!'. What a time I am having!
OK, so complete transparency - I did not cope initially. The shock of the diagnosis, the lack of time to process before treatment started all took its course on me - I laid in bed for days, not just because I was so ill, but I know I was in shock, infact I would say I was dealing with trauma. If I wasn't in bed, I was pacing the living room floor, trying to make sense of it all. My whole life had changed during one hospital appointment. I had no clue how to manage this.
I was told to take one day at a time - I wanted to tell them to 'fk-off', I wasn't even managing one minute at a time.
I am aware of all things 'brain', and the responses and automatic negative throughts, etc, etc, but supporting someone through a trauma, is different to supporting yourself. You are with you 24/7, brain wired and on overdrive, body exhausted, and full of drugs, of course it is going to take it's toll.
The problem with me? - I don't like to give in. But in this case, I had no choice, it wasn't just me suffering, and I didn't want what time I had left to be spent in a state of dispair, for myself, and the people around me, they were processing too.
So, I am on anti-depressants to support anxiety and depression, I also contacted Macmillian and received some counselling; the counsellor, poor woman having to deal with me, she remained quiet ( a tool used to get you to talk), I remained quiet as I knew what she was trying to do, reflecting back, I just wanted her to take everything away - I realised for this to work I had to give in, and speak. It helped. I needed to put my experience of being the counsellor to one side, and be 'vulnerable'. I was vulnerable - I was dealing with something phenomenal, I knew I wasn't going to deal with this on my own - no one could.
I still have 'down' days, especially when I am poorly in bed - obviously your mind takes over.
To manage mental health, you need to know yourself, understand what triggers you, and put a safety plan in place for those moments.
This cancer isn't going away, I am in limbo, with that will come good and bad days.
When it is a 'bad' day - I try to look at what is going on - physically, mentally, emotionally, to include the environment. What can be changed, what can I control, what can I do to help myself.
It is not easy - this takes practise, and at times it does not work - if it is a no-go day - I will be honest, I try to get some sleep, so I can gain some energy to re-start the process.
My safety plan includes :
Talking to my grandchildren, either face to face or video call.
Ensuring I have slept, eaten and been watered.
Distraction - watching small videos on Insta; if they are too long my mind starts to wonder.
Messaging people - not to tell them I am in a state, but to get some distraction from my situation
Not setting targets or goals that I cannot achieve, be kind to yourself.
Communication and a good network of support - I know who I can call if needed
My Blog - especially if I cannot sleep
I would say I am 'managing' my mental health, it is, I feel part of the journey now, running parallel to the physical aspects of the cancer; a poorly body may mean a poorly mind.
The key to managing mental health - for what ever reason it's descended on you - is to seek support - whether that is medically, professionally, or from your network.
Be kind to yourself. https://www.mind.org.uk/
Q. What is your best achievement excluding your children.
I wonder who sent this one in?
I changed my vocation many years ago; I left school with limited exams due to disengagement, and took up a career in hairdressing. I loved it, but when two small children came along, and I became a single parent, with the main work days being the end of the week, and weekends, it wasn't practical.
So, long story short, after volunteering in a school, I decided to take up a job as an LSA. I enjoyed it, it suited family life. Eventually I became passionate about the behaviour side of disaffected children, and studied in the evenings via Open Uni, achieving numerous qualifications - my main passion Psychology. After working my way to a Behaviour Support for the LA, I started working in a PRU, and eventually got the post as the KS3 Phase lead - absolutely hard work, but WOW, I enjoyed it. I also studied CBT, Educational Psychology, and a quick Criminal Psychology course. Eventually I left the job after burn-out, and took a post back in mainstream. Before the cancer I was appointened as Safegaurding lead, and all things that were family/pastoral support based - again absolutely loved it.
My greatest achievement - definitely the timeline of re-inventing my career, to include my last OFSTED inspection, Feb 9th 2024. I was very poorly, but not aware it was cancer at this point, I just remember running to the toilet being sick, but determined that they would see what schools had to deal with, so launched data at her, whilst praying that I could hold on another 15 minutes.
Looking back on this moment, it was probably 'GOOD' I did not know I had stage 4 cancer - outcome for the school 'GOOD', with 'OUSTANDING' elements.
For the person who asked the question - you are right having children is the best achievement anyone can be blessed with, they are the gift that keeps on giving.
Q. When you see someone that you haven't seen in a while, the first thing you usually ask them is " how are you?", but in this situation, where you are aware of the cancer- is it OK to ask that, or what do you say?
pending
Q. Do you feel frightened sometimes?
Yes, I would be lying if I didn't say it is frightening, overwhelming, and yet still surreal.
I would also be lying if I said it has not impacted my mental health.
Whilst we all know that one day we will meet our maker, to be told directly leaves you in a position of limbo. I have not been given an exact date, only an approximate, but the journey so far has left me at times too poorly at times to go out and fast-track until I stop.
I do consider what it will look like, feel like, and how it will come about, not just for me, but for my family, I suppose having no control is what makes it hard. I am mindful that what you see in a movie, may not be real life - good or bad.
A certain amount of control has been afforded by the Sue Ryder Hospice team, they discuss with you and end of life plan.
Mine says 'red lipstick, leopard print PJs, and as much morphine as the NHS can afford.
Q, Where are you currently with your medication, do they access you, change it, find new meds etc?
So, the options for curing Melanoma are relatively new, if I was diagnosed 10 years ago, there would be no solution, Chemo and Radiotherapy do not work on Melanoma Cancer.
To treat Melanoma they use : Immunotherapy and Targeted Therapy.
Immunotherapy
The immune system protects the body against illness and infection. Immunotherapies are treatments that use the immune system to recognise and kill cancer cells. Two types of immunotherapy are used to treat melanoma:
- checkpoint inhibitors drugs such as ipilimumab (YERVOY®), pembrolizumab (Keytruda®) and nivolumab (Opdivo®)
I had 2 out of the possible 4 offered of Immunotherapy: Ipilimumab and Nivolumab; my body was unable to manage the full dosage, and the cancer continued to progress.
I then went on to Targeted Therapy
Targeted therapy is medication that interferes with the function of abnormal molecules within cancer tumor cells that regulate their growth. When the molecules have certain genetic mutations, they signal the cancer cells to grow and spread.
Targeted therapy is systemic, which means that the drugs travel through the bloodstream to all parts of your body.
I am currently on Encoafenib and Binimetinib
How do they access the cancer during treatment?
The medication I am currently on is my only option at present, unless any clinical trials become available.
I have two outcomes:
1. I continue with the targeted therapy for as long as my body can manage , I will be taken of them if the side-effects become to prevalent for my body to manage
2. The cancer becomes immune to the treatment and starts to progress beyond what the meds can hold back, I will be taken off medication
I have monthly Oncology appointments, we discuss any changes or side effects issues. To support this, I have a full blood count taken, this gives details of toxicity, liver count, amongst other things. If all is good, the next months cycle of medication is released.
I have 3 monthly CT scans of the upper body to access growth and location, or any spread.
I have bi-annual ECGs for heart health, and MRIs on the brain to ensure that it has not spread to the brain; Melanoma predominantly tends to spread to the liver, lungs and brain.
I am supported via Sue Ryder, Oncology, GP, and the Cancer Skin Nurses (CSNs) - who between them sort the extras out such as, skin checks, and the other medications that are needed to support pain, and side-effect relief.
I initially started Targeted on a full dosage, due to complications with side-effects it has been reduced to the lowest amount possible. I am currently on a 3-week break due to complications with side effects; unfortunately, I am not allowed to have an extended break, in the event the cancer progresses during a break, the probability is it will not be funded to re-trial.
Have you tried complementary therapies alongside your treatment, and if so, which have helped the most?
Pending.
Have you thought about what you want when you are near the end? Have you thought about your funeral? Is there anything you would ask from your friends or family? Have you got a bucket/fuckit list?
pending
Got a question?
Got a question - write it below and click submit. Once received in my inbox, I will answer via this page, presented as above - no names given.
Create Your Own Website With Webador