My cancer journey

So it all begins June 2016 not long been engaged and starting to plan my dream day when suddenly everything went wrong...

I am a moley person and have never thought anything of them always went on hols got burnt spent time in the UK out in the sun got burnt and laughed it off never did it occur to me how much damage it was doing to me. 

So Lee (my boyfriend at the time) was keeping an eye on a mole on the top half of my back which was changing shape getting very painful and wasn't feeling normal. One day Lee said to me it's time you need to go and have that mole looked at it isn't getting any better.

My doctors at the time wasn't easy to get into and after a few attempts it took me around 3 weeks to see my doctor. 

So the day of the doctors appointment arrives I was at work as my doctors was near where I worked I walked there and went by myself because little did I no what the doctor was going to say to me....

So I'm in the doctors they look at my back and straight away they say I'm going to refer you to dermatology as all indications are showing this could possibly be skin cancer ( sorry what ) never did that thought pop into my mind. Niave as it sounds you never think anything like that is going to happen to you. 

I came out the appointment in such shock I was alone confused and scared so I got straight on the phone to Lee who left work and came to be by my side. 

A few days past and suddenly through the door an appointment to see a dermatologist.

So the day of the appointment came and off to the hospital I went where they confirmed what the doctor said and it looked alot like skin cancer so that's where I was then told I would be having an op to have the mole removed to be tested. 

So that was it a week or so later I was in having the op I was awake throughout the op and could feel a lot of tugging etc. Half an hour later I was done and out with a few stitches and a few days off work to recover. 

About a week later I had a letter through the door with a follow up appointment on for a weeks time. 

A week later I'm back in to hear the news I've been dreading. The mole had came back and was confirmed as skin cancer so the next stage was a further excision to make sure they had got it all and that hopefully hasn't spread. 

So the next thing I no I'm in having the wider excision again awake throughout the whole of it and this time a whole lot more stitches (see pic for size of scar) . Another couple of weeks past and another appointment through the door to see dermatology.  With that appointment I finally got some good news there was no sign of it spreading and the wider excision was clear (whoohoo finally thought I could put the horror behind me)

They would be keeping a close eye on me every 3months having check ups and told me to keep a really close eye incase any of my other moles changed. 

A couple of follow up appointments went without a hiccup everything seemed great until around June 2017 I was in the full swing of sorting the wedding was a few weeks away from my hen party when I had a check up.

The doctor did his usual checks checking all my lymph nodes when suddenly he felt a lump under my right armpit. He there and then took a biopsy and booked me in for a pet scan (A scan where they inject radio active dye into your body you have to lie in a bed for an hour to give it time to get into your system and then put u on the scanner and scan your whole body).

A couple of weeks passed again and I was due to go in for my results the hospital ended up ringing me early and getting me an earlier appointment I knew there and then this wasn't going to be good....

So I walk into my appointment  sitting there is my macmillian nurse the doctor and a man I had never seen before... They then broke the news to me that the cancer had spread to my lymph nodes and was now classed as melanoma. I was sitting there numb scared and angry , they then continued to explain that I needed an operation to remove all my lymph nodes and the man that was sitting in the room who id never met was infact the surgeon who was going to do the operation.

I'm still completely in shock and they go on to tell me because I'm getting married in a months time they want to get me in for my op asap as I would need as much time as we could to help me heal. So that was it I was booked in for my op this was on the Thursday they told me and they had arranged the operation for the following Tuesday 1st August. 

That weekend was my hen party part of me wanted to cancel it and not have it but I thought long and hard and thought no I need to go ahead. So I did and wow what a night!! My bumbas ( Adam and Mitch ) did the best job at organising it for me and all my closest friends turned up made me have such a laugh and tried to take my mind off the following week as much as possible! 

The dreaded day arrived the day of my op! Never have I ever been so scared. I'd never had anything like it and knew I was getting put to sleep. I was so scared the hospital staff were lovely and let Lee come as far down as possible with me so I wasn't alone. I was all gowned up and  had to say goodbye to Lee. I was then taken to the operating room and lay on a table then the surgeon came in and I just remember lying there seeing all these people around me getting more and more scared. 

The surgeon held my hand and said don't worry I'll look after you, you'll be asleep soon and that's the last thing I remember. 

Around 5 hours later the next thing I remember is being wheeled up to the ward, all I wanted was to see someone familiar to me I needed Lee so bad I was confused and didn't no what was going on. 

As I was being wheeled up I remember hearing my dad's voice was on in the corridor and had spotted me and was on the phone to Lee saying she's coming now I can see her! They then got me settled on the ward and suddenly Lee arrived I was so happy to see him I was in pain and just needed him there. I was still pretty much out of it and didn't really no what was going on but I still managed a cheeky little selfie to let you all no I was ok. 

I was in hospital 4 days, within them 4 days I hardly slept was in so much pain and had drains coming out of me to drain the lymphatic fluid around my scar, when I first went for my op they said I would have my drains in for a few weeks and that I could go home with a district nurse however it turned out the fluid slowed down quick and I ended up having one drain out a day after my surgery and the other drain out the day I came home! 

The month before the wedding was horrible being so Ill with recovery I had staples in my armpit which had to keep coming out in stages so back and forward to the hospital having them out having fluid drained , and just general check ups. 

A week before the wedding I still hadn't tried my wedding dress on because of my arm recovery I finally managed to try it on so they could finish altering it. 

Within this time I went back to my g.p to get more bandages for my arm  I've never experienced nothing like it the nurse didn't have a clue what she was doing she bandaged me up nowhere near where the issues was see picture on what she did to me! It was shocking! 

Sunday 3rd September 2017 the happiest day of my life. The day I forgot everything and actually felt like a normal human being. Marrying my best friend my rock. We had the best day and night and it's a day I will never forget and I felt so good! 

This picture makes me giggle as Its a month after the operation I've been in so much pain with my arm haven't been able to lift it yet the adrenalin must have let me lift it way above my head hehe. 

Obviously with everything going on we didn't manage a honeymoon, and still haven't however we did manage a minimoon which was amazing a week away with my husband having a laugh relaxing together just what we needed! 

And so back to reality and back to hospital appointments and being told I needed radio therapy to make sure that all the cancer had been caught as when they removed my lymph nodes they found that the cancer was trying to escape out of 3! 

I had to wait a while between my op and radio therapy as my armpit needed to heal which took a very long time! 

It was November I started radio therapy I had 21 rounds my skin kept getting more sore and I was getting even more sleepy but there the only side effects I had with radio, the staff were lovely and made me feel at ease everytime I went .

The day I finished radio therapy was a great feeling me and Tracy (who came with me everytime I had radio) can't thank her enough we had a selfie Aswell as lots of stoggy flapjacks 😂

So my check ups were every 3months so in March I went to see my consultant she arranged for me to go and have a ct scan with contrast just to make sure the radio therapy had caught everything. The c.t scan wasn't very nice they injected dye into me but they found it hard to inject me and I just remember seeing alot of blood , the scan itself lasted no longer than 5mins and I remember the nurse saying it might make you hot and feel like you are going to wee yourself which it did. It was such a strange feeling. 

A week or so later I got called in the news wasn't great... I was told they didn't catch the cancer in time and it had now spread to my liver, lungs and chest. 

I sat there just thinking I'm gunna die I'm not gunna have long to live why me? What have I done to deserve all this? 

I was sitting there thinking what next chemo? 

Instead they told me about a new treatment that's only been going for about 5 years called immunotherapy it's given like chemo but it boosts your own immune system to fight the cancer. I was told it would NEVER go and it would be a case of managing the cancer. 

The side effects that was explained to me were so scary and I was told It was 99% curtain I would get some of the side effects.

They sounded that scary I thought should I really put myself through this for something that probably won't do anything.

There was 2 different immunotherapy types but I chose to have the highest one as yes there was more side effects but I had to give myself the best chance. 

So in April I had my first round of immunotherapy I was there all day!! It was so long !! I had 2 big bags of treatment and inbetween had anti sickness and flushes I think we was there 7 hours in total luckily Lee was with me keeping me calm and entertained.

The first round of immunotherapy finished and then unfortunetly as we came out the hospital we had a phone call off my sister in law saying my mother in law had been taking into hospital Ill.  We raced on the m6 to get to Birmingham to be with her But by the time we had got there she had past away unexpectedly. So not only did Lee have the heartache of losing his mum he also had me being poorly to deal with. Dunno how he got through it he is so strong !!!

Inbetween treatments I had been speaking to macmillian support in the hospital to help with finances they was such a great help ( I found macmillian phone service not very helpful)

I then got told about look good feel better a free afternoon of makeup class to help people struggling with the effects of cancer. It was free programme ran by volunteers and it was a great time and I got a free goodie bag as shown in the picture. I would highly recommend this to anyone affected by cancer!  

I have also been speaking to a psychologist as I was having a tough time coping and since diagnosis I have been really struggling with anxiety, it's funny I used to be so confident and nothing much bothered me but since diagnosis, I get very anxious meeting speaking to new people and the thing that's bothered me the most is speaking to people I don't no much of at all on the phone.

My psychologist helped with things like techniques to help me sleep better and cope a little better, but I'm still trying to over come my anxiety. 

Every 3 weeks I had immunotherapy , side effects i didn't really have any to start off with just felt tired didn't have any sickness or anything which was good.

My next appointment was on my 30th birthday what a way to celebrate and I defo won't forget it in a hurry. But don't worry I still managed a selfie hehe

I then had a couple more rounds of immuno. Side effects were skin irritation mainly around my top half and all over my boobs looked like eczema I was given a cream to sort this which after a few days had cleared up dramatically.

My consultant also made me aware because of the immuno it had made me have a under active thyroid which was making me tired and drained so I'm now on tablets to help this however it takes a long time for your thyroid to improve so this is still ongoing. 

I have also been diagnosed with lymphedema because my lymph nodes have all gone on my right side the fluid is struggling to adjust and is making my arm and right breast swell. I'm currently ongoing treatment for this to try and help the fluid re-adjust and hopefully this will get easier as time goes on.

In July I was scheduled to have a pet scan to see if the immuno was helping I was told when I first got diagnosed that on my first scan there probably wouldn't be any change as immuno takes longer to get into your system.

I went for my scan and had a couple of days wait after to find out the results. 

The day of the results came I was so scared! Never felt so scared in all my life! I had it in my head it was going to be bad news Lee finished work and came to get me from my parents but I broke down and said i couldn't go! He really tried to get me to go but my head was spinning that much I couldn't! 

So Lee went to my appointment for me they had to ring me to get my consent to let Lee no the results.

In what felt like the longest wait lee then walked back into my parents house. He walked in and said "come here" I walked over to him he hugged me so tight and told me the scan was clear and that all the cancer had gone. I kept saying to Lee "your joking" "your having me on" I felt like I was dreaming.  He told me the consultant was gutted I wasn't there to be told the good news but she wanted to see me the next day as something had flagged up on the scan they wanted to talk to me about. 

I phoned all my family and friends and posted online to let everyone no I can't believe the amount of support I have from them all the amount of people that were behind me that was so excited when I told them I can't thank everyone enough..

The next day I went to see my consultant she told me something had flagged up on my scan on my right breast but could have just been an infection so to keep my eye on it.

I have now been on a lower dose immuno which I have every 4 weeks instead of 3 weeks and I've been having that for the last couple of months .

I had to double check with her that I was still continuing my treatment in which she replied I will be having this for the rest of my life now but if it's keeping everything at bay and away then I'm more than happy to do so!

In August I had the best time away with the best people we went to st ives and it was the best break and the most deserved break me and Lee had for a while we had such a laugh and again I felt like normal and I could forget everything again!

Thanks Kirsty, mark, esme and kye for a great trip! 

In September me and Lee also managed to celebrate our 1 year wedding anniversary we went to marco Pierre whites restaurant in Birmingham it was lovely.

Back to reality again...I then got booked in for another pet scan  which I had 9th October.

On the 12th october I had to get my results again I had to go through the hellish day of waiting around all day for my results. I got myself worked up again but this time I managed to get myself to the hospital.

They called me in to get weighed I had a panic attack on the nurse got so upset they moved me into a quiet room and brought Lee in with me to wait , I then walked in and consultant hugged me and thanked me for turning up. I was then told the scan is still all clear nothing on my lungs liver and chest. The bit that flagged up on my right breast had disappeared.

This time something has flagged up on my bowel however the consultant is pretty sure it's nothing to worry about and we are going to wait till my next scan I  January to see if it's still there or not if it is she still is certain it isn't anything cancerous so we will have to wait and see .

*update* were now in March because of how well I have responded to treatment and my anxiety my consultant has decided not to scan me until April. Treatment has been going ok. The only problems I have been having is they are finding it hard to put the cannula in as my veins are drying up. They can only use my left arm as my right arm has lymphedema,  they are in talks about me getting a permanent port fitted which is placed on my chest and is a constant feed for them to get blood and put my treatment in. I'm really anxious about having this done and am putting it off along as possible as 1- you have to be awake whilst they do the procedure 2- you cannot get it wet so having showers going swimming will be difficult. Most days I feel "normal" i don't want a constant reminder what I'm going through. However when the time comes and they really can't do anything more I will have to have it. Below is a pic of what the last cannula did to me ouchy. 

My next consultant visit is on the 31st so I guess then I will no when my scan is going to be and start preparing myself for that. 

But for now I will continue to fight this and will continue to enjoy myself as much as I can. I will keep everyone updated via my blog when and if anything changes. 

*UPDATE MARCH 2019* Went to see my consultant for a check up, she asks me the usual questions how are you any side effects? To which I reply no nothing. She then goes on to tell me I'm having my scan the middle of may now and due to go and see her for results 23rd may. Due to the nurses keep telling me I need to have a port fitted as they are finding it hard to get my veins, I thought I would speak to my consultant about it for her to say something I was never ever expecting her to say. If my scans continue to stay clear and everything goes ok they are looking to taking me off treatment next April 2020. Wow! I'm in shock, because immunotherapy was so new they thought I would have to stay on it to keep it controlled but because of how well I'm doing and how well the treatment is coming on they can take me off it and if I ever need to go back onto it they can get me back on it at any time! I cant believe it I never thought I would have heard them words. So now I just have to pray that all my scans continue to stay clear so I can come off it and start living a normal life again! 

*UPDATE MAY 2019*

So a little update for you all following my story, on the 13th of may I had my 4th pet scan. The scan itself is a long progress but you just have to zone out and get on with it. My scan results weren't planned until the 23rd of may so it was a long wait! 

It got to the morning of the 23rd and the week leading up had been hell was just crying all the time and getting so scared. My appointment was at 4pm and at about 2pm I just got so scared and anxious i just couldnt do it so i didn't end up going to my appointment my mind was playing such tricks on me. 

On the 24th the nurse rang me to ask me why I didn't turn up so I explained and she was trying to reassure me it was all going to be fine and I agreed to go and see my macmillian nurses to get the results .

So Wednesday 29th I was due to go for treatment anyway so before hand i nipped into see my nurse and she told me that my scan was clear no cancer, because pet scans are that good some stuff did flag up but we have managed to rule it all out. So still all being well and they continue to stay clear I will hopefully be off treatment next April.  

I thank everyone for their best wishes/support it's so overwhelming but much needed. Xxx

*UPDATE July 2020

So its been a whole year since I last done an update so just wanted to fill you all in with what has happened over the last year.

Every month I continued having my immunotherapy treatment without any issues or many side effects (just my skin irritation)

Watching my best friends get married in August never thought i would make it to their special day so it was such an honour being a bridesmaid at their beautiful day.

In December I had another scan which also came back clear. With this came great news that all being well I was still due to come off it in April.

At the beginning of march I went for my treatment as normal (little did I realise this was going to be my last one). 

I then recieved a phone call of my nurse as Mr covid had decided to appear in this country and she had spoken with my consultant and due to lockdown and them not wanting many visitors into the hospital I had to make a decision to either continue with my last 2 treatments or finish early. I told her I would have to think and at that time I was more petrified of covid then I was of anything else so after speaking with family and friends I made the decision to stop treatment early. 

It was such a bitter sweet feeling.... never in a million years did I think I was going to be off my treatment which was just such an amazing feeling however having to finish the way I did without seeing it through to the end was such a sad feeling. 2 years of every month going and getting treatment was over! 

At the beginning of July I had a telephone conversation with my consultant just a check up and she said the dreaded words to me its 'scan time' so within a week I was having my scan. 

I was very anxious about going to the hospital as with all the covid stuff going on, its really the last place I wanted to be but the whole process was painless and it wasn't as bad as i thought it was going to be. Then it was a two week wait for my scan results as previous scan result waits go it made me just as anxious if not more as this was the first one since coming off treatment ( so in my mind I was thinking maybe the treatment was keeping it away? maybe it will be back now?)

And so the result day arrived.... I was actually calmer than usual which really surprised me (and lee) lol .

I walked in to be told it was still clear! I'm still cancer free!

So I will continue to have my consultant check ups every 3 months and they are going to scan me every 6 months although this is such a tough process for me im forever grateful they are keeping a close eye on me.

UPDATE OCTOBER 2022

Sorry for the delay in an update...

So it's been a year and a half since coming off treatment.

I've had a few more scans and a few more checkups with my consultant, all good and no sign of it coming back. 

My consultant feels pretty confident that it shouldn't come back now but obviously she can never say never. So I will continue having my check up and scans until she sees fit to stop. I litterally trust that lady with my life so when she says the time is right to stop I trust her 100%.

The after effects of treatment are still really effecting me-

My arm is constantly going numb and I get more nerve pain then I ever have. It really makes doing any day to day activities more complicated.

My anxiety and mental health is still a struggle. I panic over the slightest things but I continue to push myself to overcome this.

I continue to try and make the most out of life now and enjoy it to the best I can. 

Within the time of me last posting I have been on a few holidays ( in this country ) as that is the new normal for me now.

Me and Lee also purchased a puppy Millie-moo she is a malti-poo ( maltese Cross toy poodle ) we have had her a year now and she has brought so much joy into our lives. 

1st picture below is one of the first pictures of her.

2nd picture is a recent photo.

Thanks for reading and I will update when there is ever anymore updates. 

Xxx

I continue to thank everyone for all your support a few people I want to mention-

My consultant having the patience with me and the knowledge of what is going to work for me.

Macmillian without the support of my skin cancer nurses especially Louise I would be lost and feel so alone !

Cancer research without you I wouldn't be here now I will continue to support this charity for as long as I can!! More and more people are surviving cancer because of them!

My husband my rock I couldn't and wouldn't have got this without you and I'm gunna make sure we continue having fun and enjoy life!

My family especially my mum and dad who want to kick my ass most of the time but who support me so much.

My friends wow to many to mention people the support from you all has been massive but huge love to my best friends Adam and Mitch who makes me laugh when times are tough, who's there when I need to cry thank you so much.

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Please listen to this song!! It's very fitting...