Samantha. J

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6 years on from my stem cell transplant

stem cell transplant

I wasn’t planning on writing or publishing a post today but as soon as I woke up I felt like I just needed to write something.

Today marks 6 years since my stem cell transplant. My immune system is officially 6 YEARS OLD. Up until a couple of days ago I hadn’t realised the date until I looked on my calendar and saw ‘6th re-birthday’ written down on the 2nd April. I hadn’t even thought of the significance of the date up until then, where as years ago I would have been counting down the days to it knowing what a huge day it was for me. It’s strange the farther away you get from treatment the less important the dates seem but honestly shouldn’t it be the opposite? I mean as the years go by the the less chance you have of relapsing. I guess I’m still trying to figure it out and I’m still very much learning how to cope even after all these years. I thought it would get easier which it does but the dates and anniversaries definitely bring back all the emotions.

Waking up this morning knowing that this time 6 years ago I was lying in a hospital bed feeling as weak as ever after the high dose chemo and wondering if the transplant would work and how the next few weeks would feel, I didn’t know what was in front of me, to be honest I don’t think I would have liked to have known but I remember waking up on that day, having my morning tablets and a quick wash and then sitting in my chair next to my bed while taking a panoramic photo of my room and thinking no matter how bad I was going to feel, I was going to beat it and I was going to come out the other side cancer free and I did and even though I did have some shaky moments where I just didn’t know if my body could handle it and I did have my down days but I just knew I wasn’t going to give up without giving it everything.

Going through something like a stem cell transplant really does give you a mental strength you can’t really explain to others from outside the cancer community. I think sometimes your mental strength really does outweigh your physical at the most important times. I honestly can’t believe it’s been 6 years. 6 years since my own little stem cells saved my life and I’m just so grateful the transplant worked.

As the years go by and the check-up’s become less often I always worry, it’s normal but for me now I’m not thinking about wether I’m going to relapse, I’m over that period. I’m more mad at how the chemo and transplant has left my body with the side effects it has and me having to deal with them daily, it’s something I haven’t learned to accept yet and that may not be healthy at all but I think it’s just going to take time. I don’t know when that will happen, probably not for a while yet but it’ll come.

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How I’m feeling about covid as a cancer survivor

covid

Covid and cancer. Two very different things but it’s weird how they both take me back to how I was feeling 6 years ago.

Going through something like cancer really helps when a global pandemic comes along because your forced to do what you’ve already done and that’s isolate. Isolate from the world just like you did when going through chemo, living in your own little bubble, staying away from people, only going out when necessary, wearing a mask, sanitising everything constantly. Everything they are recommending now. I’ve seen people on social media moan about how they just don’t think they are going to be able to stay at home for weeks and I get it, it’s boring as hell but I and many cancer patients did this for months and months even years. My advice: take it day by day and don’t get too overwhelmed. Stay positive and focused. Attitude plays a massive part. Focus on food, sleep, exercise, get outdoors when you can, it’ll make such a difference.

I should have got used to coping with covid by now, it’s been around for a good while but to be honest I still can’t get my head around it and don’t think I will. It’s not something I thought I would see in my lifetime. It’s like you’re in a bubble with no way of getting out, well that’s how I feel about it right now living in the uk.

It’s hard knowing after going through all the years of chemo, and a stem cell transplant that something like a virus could kill me, but it’s not JUST a virus. It’s not easy trying to get over that thought. I mean it’s not like I think about it daily but there’s always reminders. I’ve now got used to not sleeping at night because of fear and anxiety and waking up in the middle of the night emotionally drained. Sometimes there are nights like that and I have accepted that but others I can sleep right through and get a good 10 hours.

covid

As I’m so far out of treatment now I’m only classed as clinically vulnerable and not extremely which was a little upsetting when I first found out from my consultant. I mean its not like I want to be classed as extremely vulnerable but knowing I wouldn’t be able shield from last March was really scary, even after taking all the precautions I can. Right now, I am on furlough as the company I work for is classed as non-essesntial and thankfully gave me a choice but I know others aren’t so fortunate and I feel so grateful that I can now shield at home for the foreseeable.

I didn’t think when I was lying in my hospital bed 6 years ago that now I would be fearing for my health once again. Fearing if I did catch covid would my body be able to handle it. I don’t want to think that I wouldn’t be able to handle covid but I know my body and my health has taken a battering over the past few years although saying that I am SO grateful for my health as I know there are others going through a lot worse.

It’s not easy living as a cancer survivor during a global pandemic, the feelings that it brings back and the memories that I would like to forget about and the late nights not being able to sleep but I am coping as well as I can. I know a lot of people are finding this lockdown harder than the others mental health wise and I can totally relate but this won’t last forever even if right now it feels like it will.

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There’s no right way to feel after finishing cancer treatment

Cancer Treatment

Once you hear that word ‘cancer’, you’re never going to be the same. The struggle of being a cancer survivor is real. It’s scary and lonely but remember there’s no right way to feel post cancer treatment. Your feelings are valid.

After I finished my treatment, I had so many emotions. I didn’t know what to think or where to turn. I mean the relief that I was done with treatment was very overwhelming and it didn’t feel real that I wouldn’t have to get up and go to the hospital every couple of days for a blood test or chemo. My emotions were mostly positive for a good few days, I mean I’d just been through the fight of my life and come out the other end, I don’t think you can really describe that feeling but on the other hand I had this cloud over me that I couldn’t shake. The end of treatment is such a big milestone and you may want to celebrate but it’s okay if you don’t feel like you want to. Your feelings matter.

The shock of what I’d been through didn’t hit me until I went home after a few weeks of recovery. I was alone with my thoughts most days, it was draining. All my thoughts had started to catch up with me. Everything that I had been through basically hit me at once and I realised. All these feelings I’d bottled up over the past couple of years just exploded and I really did hit rock bottom. I didn’t want speak to anyone. I hid myself in my room crying. I didn’t know what I was feeing, I just knew I was feeling down and I didn’t actually know how depressed I was at this point.

I was scared, angry, worried. I didn’t know a life without the hospital, blood tests and biopsies. I was lost. My feelings changed so quickly in the space of just a few days/weeks. There are still times now when I still break down and cry for no reason and that’s okay and I’m taking life day by day.

Cancer Treatment

I struggled for a long time and didn’t want to accept I was feeling down and depressed. I tried to get on with life for my family but deep down I knew I was struggling but I didn’t want them worrying anymore about me which is why I think I struggled even more because I kept it to myself. If I’d have been honest with myself I think the past few years would have been a lot easier.

I think getting back into normal life and trying to integrate back into normal conversations was a massive thing for me to adjust to. The hospital felt like the only world I knew. Hospital care and being in bed most of the time had been my routine for so long that I really struggled to process coming out of it. The support structures fell away faster than I imagined they would.

It’ll be 5 years next month since my consultant told me there was no more cancer left in my body and I was in remission and even through I’ve come a hell of a long way since then I still struggle and I know I will for years to come but remember there’s no “correct” way to experience cancer and your feelings are valid and recovery is a gradual process.

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How social media can help you through a cancer diagnosis

Social media and cancer

When you receive a cancer diagnosis you can feel so alone and isolated. I know I did. SO. What did I do? I turned to google of course, I needed some answers as to how my life was going to be and what I was going to go through as a cancer patient. That’s all I could find at the time, there was no guide book on how to deal with cancer.

I feared when I was diagnosed who could relate to me? I think for a few weeks I was just in shock and everything went by so fast, all the scans, tests and biopsies just everything. I didn’t really know where to turn.

Although there were days throughout treatment when I felt more alone than ever, there are millions of people going through the exact same thing. The pain, the sickness, the chemo, every single thing.

It took me a while to post on Instagram with my first cancer post, I’m pretty sure it was just a quote or something which may have seemed small to others but was a huge deal to me, I was putting myself out there. I wanted some support. While scrolling I found a hashtag called #noonefightsalone and it’s so true. Nobody does fight alone. Ever.

I connected with so many amazing people going through cancer treatment and not just on instgram throughout social media and found I felt comfortable chatting to them about anything and everything. Cancer really does connect people in such a strange way and there’s such a bond.

Search Instagram for hashtags of your type of cancer, search Twitter, search on IHadCancer & the Blood cancer uk forum which both have amazing communities full of support. Just reach out and comment! They have all been there or are going through the same thing you are right now and will be so supportive.

Social media and cancer

I have met some amazing people through Instagram who I am now real life friends with and if it wasn’t for cancer, I wouldn’t have met them. SO, thanks cancer. I’ve flew to New York to meet a girl called Nicole and even though it was like a monsoon the day we finally met after talking for years before it didn’t matter. I was so happy to finally meet one of the girls who had been by my side since the beginning.

Seeing others sharing their stories and seeing what they are going through really inspired me to put myself out there and share not only the good times but the bad as well and that’s when the best support happened, the support I needed the most.

Yes, you probably have a support system of friends and family, but unless they have or have had cancer and as much as they would like to they can’t relate to the things you are going through.

For anyone going through treatment right now.. 

You’ll develop an unexplainable bond to anyone else who has or has had cancer. You’ll meet other cancer fighters and survivors through social media that you eventually become friends with. They get you. They understand you. They will help you get through it.

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Let’s talk about post chemo hair growth

This post contains PR samples but all thoughts are my own.

I lost my hair during my battle with Hodgkin’s lymphoma. I didn’t just lose it once though, because I relapsed I lost it twice. The first time I shaved my head just after finishing chemo for six months, I tried to keep it for as long as possible as my hair was very thick but I knew when the time was right and then the second time was about a week after I was told the cancer had come back, the chemo I had was a lot more intense so I lost it way quicker than the first time.

Chemo hair

I’ve always had long thick hair and when I saw it coming out in clumps and strands in the shower I was devastated. Not only was I losing my hair but my eyebrows and eyelashes as well. I wore a few wigs while my hair was growing back and I felt like me again and I had my little security blanket back but ultimately wearing wigs really didn’t help my hair grow. It’s now been about 3 and a half years since I finished treatment and my hair is BACK and long again. I’ve had a few trims and some colour put in and I’m obsessed with it now even though I do need to get it cut again real soon.

My plan is to keep growing and keep it as healthy as possible then I would love to be able to donate it to the Little Princess Trust. To all of you at the awkward stage of hair growth, it does get better and eventually your hair is going to look amazing, just be patient although if you want to do as much as you can to get your hair to grow I’ve got a few tips that may help it along.

Vitamins and hair volume supplements.

I left it about 3/4 months after finishing chemo before I started taking vitamin A, D & C. A couple of people recommended these tablets as they help recover your hair and they are also really good for you which is a bonus.

Oh & I have recently been trying out some hair volume gummies from New Nordic. They are an apple flavoured chewable that includes biotin and zinc. Thankfully they look and taste like a sweet so it doesn’t feel like your taking a vitamin. Biotin seems to have become one vitamin in everything hair related recently so that’s got to be a good sign. The gummies supply nutrients to the scalp and hair follicles where the hair is formed.

As I said before I’m trying to grow it as much as I can then I’ll able to donate so anything to help my hair grow and keep healthy I’m all for. I’ve been really impressed with these for the last few weeks, my hair seems to be more healthy and manageable and I have also seen a little growth which is amazing, I’m very excited to keep using these to see more results.

If you are still in treatment or just recovering then definitely talk to your consultant before taking any supplements.

Chemo hair
Don’t over wash your hair.

I know it’s a little strange but making sure not to over wash your hair is important. Washing it as little as possible, 2 to 3 times a week is the best. Oh and dry shampoo will be your best friend..

Fast shampoo & conditioner.

Again, I got this recommend to me by a couple of other people who had just finished treatment and they said how amazing this shampoo and conditioner was and I was really intrigued so I decided it was worth buying and I am SO glad I decided to purchase even though it was around £30 which obviously isn’t cheap for shampoo and conditioner. My hair grew at such a rate and wether it was down to using these or just a number of things but I’m pretty sure this made a big difference.

Trim your new hair.

I remember when my hair first started coming back, I didn’t want to cut it because I was way too nervous for anyone to touch it, I just wanted it to grow but I did eventually get a trim because it was starting to resemble a mullet and no-one wants to see that. The best thing you can do is go for regular trims by cutting off the split ends. It’ll make it look so much tidier and you will feel so much better for it.

Chemo hair
Oils are your best friend.

Every few days I would massage my head with oils, mainly castor oil because you can also use this on your eyebrows and eyelashes as well and it worked a treat. It increases the movement of blood to your scalp so helps stimulate growth. It also leaves your head feeling very soft!

Avoid straighteners.

It may be hard when you notice your hair getting longer and you want to try to straighten or curl but DON’T. You want to try and not damage it too early. My hair came back really wavy and I was so tempted to buy some of those tiny straighteners but I resisted and it was one of the best things I did. You really don’t want to use any harsh products on your hair until it’s grown to a point you are really happy with.

Some stages of hair growth can be very frustrating. Through some of the awkward stages I got to a point where I wanted to shave it all off and start again. It’ll take a long while for your hair to get where you want it to be but just be patient, it WILL get there.

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Survivor’s guilt

Life after cancer like I’ve said before is sometimes worse than going through treatment but survivor’s guilt is something that I never understood. I’ve heard about it a lot in the cancer community but it never really hit me until it happened to me. When you have cancer you connect with a lot of other people so you create a bond. That bond is so special because you get what each other is going through or have gone through, there’s no other one like it.

When I was initially diagnosed I wondered “why me?” but after I battled through all the chemo and stem cell transplant and came out the other end then heard my consultant say “you’re in remission” then heard others who were battling at the same time as me but didn’t make it I thought “why not me?”. What did I do that made me survive and others didn’t. It’s not fair. I fought cancer and won so I should feel elated, thankful and for the most part I do however now and again there’s one emotion that overshadows all of these and that’s survivor’s guilt.

Survivor’s guilt

Whenever I see children and babies who fight so hard but then see that they didn’t survive and they had all their life in front of them and then there’s me crying at the thought of their families who have lost a massive part of their family and I really couldn’t imagine what it feels like to lose a child to cancer or any disease for that matter but I’m like why couldn’t it have been me?

There are so many friends I’ve made over social media who I’ve seen pass away because of the dreaded C word. The treatments have stopped working or there’s been nothing else they can do and when you read something like that I can’t tell you the emotion and the heartbreak. The times my friends have said they are relapsing and there’s nothing I can do, it hurts. It really hurts.

Coping with survivor’s guilt

Acknowledge your guilt. I suppose the first step in coping with survivors guilt is to acknowledge that the feelings are real. This is something I didn’t accept for a long time but your feelings are valid and there’s nothing wrong with feeling the way you do.

Reach out. Sometimes just trying to express how you feel can be hard especially when not everyone understands but there’s always someone who will know how you are feeling. A lot of my cancer friends get all of my frustrations and feelings so please reach out if you’re struggling, even just a simple “hi” can spark a conversation.

Allow yourself to grieve. Even if you don’t know someone personally you should still give yourself time to come to terms with what’s happened. That sadness that comes with survivor’s guilt can be overwhelming so give yourself some time to grieve.

Accept that there are no answers. I’m always asking myself why I’m still in remission while others are dying or relapsing from cancer but honestly there’s no answer. You have to acknowledge that there may never be an answer for that question and accept that sometimes life and cancer don’t make sense.

Act of Kindness. If you’ve lost a friend to cancer or just someone who you were close to sometimes a little act of kindness can make the feeling of loosing them a better memory and may make it a little less painful.

Give back. I know personally how giving something back to the cancer community can help with survivor’s guilt. I set up a little page on Facebook to raise awareness and money for blood cancer now and this helps me concentrate on giving back but honestly it doesn’t have to be something massive, just something like maybe volunteer at an event or donate a few pounds a month if you can!

Survivors guilt

I try to take each day as it comes as I know each day is a gift. The past no longer exists and there’s nothing I can do to change it so what’s important is the here and now but If you are struggling with survivor’s guilt please don’t hide yourself away, reach out and I can promise that taking to someone will help a lot more than keeping all your feelings inside.

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Let’s have a catch up..

I haven’t written a personal post for a while now so I thought I’d sit down and have a little catch up you all. I’m currently lying on the sofa under a massive throw which is the SOFTEST throw ever and it’s from Primark, go and get yourself one, you won’t regret it (you’re welcome).

I’m pretty sure I’ve got the flu, if it’s not the flu I don’t know what it is because I have ALL the symptoms.. I’ve felt ill since Friday morning and had a high temperature, ugh. All I’ve done is lie in bed or the sofa because every time I get up I feel like I’m going to faint so that’s great. I wish I had a normal immune system because this is the 2nd time in 3 weeks I’ve had to take time off work because of illness and I hate having to call in and let them down, I feel so bad about it but I know I can’t go in ill. It just sucks but I’m dosing myself up with all the medicine and hopefully I’ll be better soon anyway I don’t want to bore you with how ill I am right now because you get a lot of moaning from me on my twitter account..

Catch up

If you didn’t know I finally got a job after my cancer treatment and I’ve been working in retail for about 5 months now but it honestly seems like I’ve been there so much longer. I’m enjoying it although it’s not what I want to do for the rest of my life. I mean I love the people I work with, they are all really lovely and I think that’s one of the most important things is to get on well with your co-workers.

My ultimate dream job would be in a cancer charity and I know I’m an ambassador for Blood Cancer UK which I absolutely LOVE doing. It’s so great to be involved with the blood cancer community and It’s amazing to know I’m helping on projects to help support patients but one day I’d love to be working full time at a cancer organisation. Someday I hope I can make that jump. I was also invited by Blood Cancer UK to help at a couple of events not too long ago but again I was too ill to go, I was so sad I couldn’t go and help, I know there will be lots more events to help out at but I was just so annoyed at myself even though I couldn’t help being sick. 

Last week I had booked a week off from work as well as my mom and sister because my birthday was on the 17th October so we all just decided to book the week off and try to be productive haha. Most of the week we spent shopping to be honest so wasn’t exactly productive but I had such a lovely day for my Birthday as we decided to go to Manchester for the day and I was super excited although my mom wasn’t too happy with the £18 parking charge.. YES £18.

We spent most of the day shopping and I actually only brought 2 bath bombs from Lush and some tee tree stuff from The Body Shop, I literally didn’t see much else around the shops which I was surprised with to be honest. We did go and have a little explore and saw the cutest little details ready for Halloween also seeing all the I ♥️ MCR signs throughout the city was so emotional. I’ve only been to Manchester twice but it’s becoming one of my favourite cities and I can’t wait to go back. 

On the Wednesday I had a check up at the hospital and I woke up feeling physically sick. The anxiety before any kind of check up is horrible and a part of me will forever fear it. After having 5 files of blood taken I went to see my consultant she normally just asks how I’m feeling and wether I’ve had any symptoms etc and tells me my blood results which were all good (YAY) then I have a physical check up where she feels for lumps in my neck and under my armpits, then she feels my tummy and listens to my breathing all that seemed fine.

It was honestly the BEST birthday present I could have asked for. 2 years & 4 months in REMISSION. I’m getting closer to that magical 5 year mark and I couldn’t be happier with how far I’ve come since finishing treatment. 

Oh, update on the gym.. I haven’t been for months. Ooopppssss. I kinda just wanted to get into my job but then I always kept putting off going because I was super tired after my shift but now I’ve got used to everything I am determinded to get back soon as I need to start training for a 10K which I’m planning to do next year. I’ll tell you more about this when I actually sign up. 

On the blog front I’m pretty happy with everything at the moment although I feel a little out of the blogging community but that’s probably just my fault as I really need to make more of an effort with commenting and interacting which I’m so bad at right now so please leave me your latest posts below as I would love to have a read.

I’m also REALLY trying to up my content and photography game. I kinda like to keep my photo’s simple and white but then I see other bloggers with amazing photo’s and I’m like HOW. I know I shouldn’t be comparing myself to others but it’s hard not to. I also signed up to Influenster a couple of months ago and although I haven’t received a VoxBox yet I’m actually really enjoying going onto the app and interacting and writing reviews on there. I was shortlisted for a box about a month back but never got it. I was a little disappointed, not going to lie. I also did have a little think about doing Blogmas but I didn’t want to put that sort of stress on myself so I will be posting in December but not every day. 

I don’t have much else going on in my life right now, it’s pretty boring haha. I hope you guys are well and enjoyed reading this little life update.

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Things you shouldn’t say to a cancer patient

When someone close to you, a friend or even just an acquaintance is diagnosed with cancer it can be hard to know what to say. You want to say the right thing, but what if it comes out wrong? You want to be there for them, but how? If you’re supporting someone with cancer but you are stuck for words, sometimes admitting, “I don’t know what to say” can be the best way forward.

Cancer

When I was diagnosed back in 2014 most people didn’t know what to say or just said the wrong thing. Hopefully if you know someone going through treatment right now then this will help. So here’s a list of things you shouldn’t say to a cancer patient..

“THINGS WILL GET BETTER”

Okay. This was probably one of the worst things that was said to me. I know things will get better but right now I’m losing my hair, being pumped full of drugs and really don’t want to hear it. I’m just trying to fight for my life..

“HAVE YOU TRIED ALTERNATIVE TREATMENTS”

The MOST annoying thing ever. People asking if you have thought about alternative treatments or natural remedies. Just NO. When you are going through cancer you don’t want to hear about vitamins and oils that could cure cancer.

“YOU DON’T LOOK SICK”

Another personal favourite. A lot of people don’t “look” like they have cancer but just because you can’t see the side effects of the cancer or treatment doesn’t mean they aren’t there.

“HOW ARE YOU FEELING?”

It’s a perfectly fine question but when asked every hour or so it can get annoying. I know people can mean well but I’m not going to be feeling good for at last six months.

“I FEEL SICK TOO”

Please don’t complain about how sick you are to me. I’m so sorry that you have a cold, or are struggling with being tired. Really, I am.

“I HOPE THIS IS OVER FOR YOU SOON”

Yes, someone actually said this to me. Cancer will stay with me for the rest of my life so no it won’t be over for me soon..

“YOU HAVE THE GOOD KIND OF CANCER”

First things first there is NO good cancer. Nobody enjoys being poisoned every week and losing clumps of hair every time you wake up. Also if you didn’t know chemo and radiation give you a higher chance of developing a secondary cancer.

“I KNOW SOMEONE WHO DIED OF THAT”

Another no, no. Please don’t share a cancer story with a bad outcome. It’s probably the last thing a person going through treatment wants to hear. 

“BE POSITIVE” 

Thanks for the support but sometimes you can’t just be positive all the time. It doesn’t exactly help so just don’t. 

“SO, YOU’RE ALL BETTER NOW, RIGHT?”

Honestly this one for me was the WORST. People often don’t realise you are left with so many long term side effects of cancer. After I finished treatment I was left depressed, scarred and tired and I still am even more than 2 years post. Even though life appears to be returning to normal it never will be ‘normal’ again.  

“I THOUGHT CHEMO WAS SUPPOSED TO MAKE YOU LOSE WEIGHT”

Nope. I was on steroids so I was eating like 5 times a day and put on about a stone although I needed too because I had lost so much weight before I was diagnosed. 

“JUST BE GRATEFUL YOU DON’T HAVE (INSERT ANOTHER FORM OF) CANCER”

Comparing cancers is not helpful so just don’t say it. No matter what type of cancer you have and no matter the stage, it’s a life-altering diagnosis. 

“IF THERE’S ANYTHING I CAN DO, JUST LET ME KNOW”

Okay, so this is kind but it’s not so great because then I have to figure out what I can say and then having the burden to ask. I don’t want to make you go out of your way to help. I also hate making decisions..  

“WE DIDN’T ASK YOU TO COME BECAUSE WE DIDN’T THINK YOU WOULD BE UP FOR IT”

So I get why people would say this and honestly most days I was just in bed recovering from treatment but it would be nice to just be asked. Cancer can make you feel so lonely. 

“WILL YOU LOSE YOUR HAIR”

Ermm. Yes but I kinda don’t want to talk about it. It’s a massive thing for a woman to lose their hair and go bald. Well to me it was anyway..

“OH, I’M SO SORRY. I WISH I COULD TAKE IT AWAY”

Thanks.. 

“I KNOW EXACTLY HOW YOU FEEL”

Unless you’ve been through cancer no you don’t know how I’m feeling. You have literally no idea. 

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Let’s talk about mental health in the cancer world

I thought I would share my experience with mental health in the cancer world. I never suffered with mental health issues, well that was before I was diagnosed with stage 2B Hodgkin’s Lymphoma then it all changed. The day I had been waiting for had arrived on the 30th June 2015, I had finished treatment and had been told I was finally in remission after nearly 2 years of difficult treatments but after only a few weeks I found things were changing from the way they had been during treatment.

The support I had been receiving was slowing down, the hospital appointments became less frequent and then I had a sudden feeling that I felt completely alone. I was honestly terrified of what would happen next.. Yes, I was done with all things cancer, the needles, the surgery, the sickness, everything but I didn’t feel like I had imagined I would feel.

I remember having a little cry because I was so scared of the unknown, its like you have to re-learn how to live the life that didn’t involve cancer and I honestly didn’t want to. I still wanted to be in the cancer world. The depression of missing your old cancer life and the anxiety of trying to piece it back together still haunts me. I obviously feel very lucky and happy that I am still alive today and that I got through the chemo and a stem cell transplant but life after cancer and trying to get back into the normal world post treatment seems impossible.   

Mental health

“Having anxiety and depression is like being scared and tired at the same time. It’s the fear of failure but on urge to be productive. It’s wanting friends but hate socialising. It’s wanting to be alone but not wanting to be lonely. It’s caring about everything then caring about nothing. It’s feeling everything at once then paralysingly numb.”

Dealing with anxiety and post traumatic stress is the hardest part although when I think of post traumatic stress disorder I think of soldiers, warriors, heroes.. I never think of myself. You constantly live in fear with whether the cancer will comeback, every little ache, symptom or the sounds and smells things that bring me back to that moment I was lying in a hospital bed having the poison that is chemo being pumped through my veins. Loud beeps, like phone alarms remind me of my chemo pump going off through the night and those thoughts make my heart beat faster.  Every single day I have memories that take me back to certain days of my cancer journey.

There has been so many days that I haven’t wanted to wake up and I’ve just wanted to stay in bed because I felt so alone, no-one could understand how I was feeling. I just wanted to crawl up in a ball and cry. The last couple of years, suicidal thoughts have come into my head which obviously scared the hell out of me. Would life be better if I wasn’t here? Then my mom wouldn’t have to worry about me like she does everyday. Thankfully these thoughts have become less and less as the days have gone on but I’m always scared they are going to creep back up on me.

I always loved going out to see friends and family but now its a completely different story, in the past year or so I have hardly been outside as just the thought of being with a crowd of people absolutely terrifies me and I get really panicky and start crying. I fight with some sort of anxiety every single day and I try and manage it but it’s always there bubbling up under the surface.

Mental health

The photo above was taken about a month ago on one of my worst days. I remember having hardly anything to eat, I just wanted to sleep and shut the world away. I had been crying most of the day until my mom brought Thumper upstairs which cheered me up a little. 

I think it’s a common misconception that once treatment is over everything is fine, you go back to work and back to a ‘normal’ life but that’s just not how it works for us cancer survivors. I think the hardest part post cancer is purely to survive trying to find ways to relate to people and be a part of regular conversations.

I can’t tell you how many times people have been talking to me and I will just zone out, I just won’t be interested in their conversation just because it’s not cancer related. They will be talking about something they did last weekend and I just want to shout back at them that my friend has just relapsed or I have got a check up in a few days and that I’m worrying about every single pain I’ve had for the past month so please stop talking about the nice meal you had. This may be really selfish of me but cancer is always in my head and it’s not easy to relate to people.

Even though I’m done with treatment it doesn’t mean its any easier for me, probably harder. Writing this post hasn’t been easy and so many times I have come to carry on with it and just broke down in tears because sometimes its just hard to think about & dealing with so many side effects cancer leaves you with does get me down but I will always get back up and fight because that’s what I do every day. I am happy, healthy and I’ve got so many supportive people in my life who I love and I will not let my mental health win.

Mental health has been in the public eye lately because of the Heads Together campaign and I love that more people are talking about it but so much more needs to be done to educate people. If you are struggling please remember you are NOT alone, please reach out and talk. The emotional and physiological side of blood cancer is so overlooked as is mental health in general and this really needs to change. 

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Little health update & celebrating my 2nd re-birthday! 

re-birthday

Last week was quite a big week for me as on Friday (31st March) I had a check-up at Heartlands Hospital. I’ve been in remission for 21 months but to be honest it only feels like 3.. Lately I’ve been having so many random pains, I’ve been so much more tired than usual so I really wasn’t looking forward to going to my check up. Usually I’m okay with going because once my consultant says I’m okay it reassures me but the waiting kills me, it’s the worst. 

On the day of my check up my mom & sister came with me which they normally do to most big check up’s or appointments. My appointment was at 9am which I really didn’t mind but I had to be there about half an hour before to have a blood test although when I got to the ward they were running behind so I didn’t go in to have my blood taken until 9ish then there was quite a wait to see my consultant (he talks a lot). We finally went in just before 10.. My blood results all looked perfect and my physical examination was all clear! Although my blood results came back fine I really don’t trust them anymore as when I relapsed my blood results came back normal which I found really strange at the time. 

Anyway, I can now say I’ve been in REMISSION for 22 MONTHS. So close to 2 years! EEEKKK. Last time I told my consultant about my ambassador role at Bloodwise so he asked how that was going, he then said they might be starting up a survivorship programme at Heartlands and asked if I could do a speech, I said yes straight away! I’m not the best at public speaking but if sharing my story helps just one person it’s worth it. My next appointment at Heartlands will be in 12 months which is crazy. I have appointments at my local hospital every 6 months just to keep a check on everything which definitely helps my anxiety.   

re-birthday

On the way home from the hospital I was absolutely fine but once we got home I burst out in tears. To be honest I’m still not sure why. My mental health has been the worst it’s been for a long while so I think I just broke down. It’s not easy living with anxiety & depression. I haven’t really mentioned my mental health a lot on social media and on my blog but I do want to start as I want to make more people aware how hard it is living life after cancer. It’s not easy. PTSD doesn’t get talked about a lot in cancer survivors and this really needs to change.  

re-birthday

On Sunday (2nd April) I celebrated my 2nd Re-Birthday! My immune system turned two years old. Two years post transplant. Two years since I was lying in a hospital bed having my new stem cells pumped back into my body after days of high dose chemotherapy. The moment itself is underwhelming, just like having a blood transfusion but the weeks after were the hardest weeks of my life. But now, two years on it remains one of the most important days of my life. It’s one of the few days associated with cancer that’s actually worth celebrating!

I had decided that I wanted to go to Oxford for the day so that’s what we planned, mostly because I was going to meet Amy. Amy and I were diagnosed around the same time 3 years ago both with Hodgkin’s Lymphoma and we first started talking on Instagram as we were both going through the same chemo, having the same side effects and we could just relate to each other, she inspired me to keep fighting when I was feeling so weak. We started talking more and more then we became friends on Facebook.After 6 months we had both finished chemo but still kept in contact, unfortunately as you guys already know I relapsed and had my transplant in 2015 but only a year later in 2016 Amy relapsed and had to go through a stem cell transplant which literally broke my heart but instantly we became closer. Thankfully Amy is now in remission and I’m so lucky I can call her one of my best friends.

re-birthday

I’m SO happy I could finally meet the girl who’s been my rock for 3 years. After meeting Amy.. Me, my sister and mom went to explore Oxford and I didn’t realise how pretty it is and somewhere I’ll definitely be going back too, unfortunately I forgot my camera but I did take a couple of photos with my iPhone before my battery died which you can see below! We had lunch at a lovely pub and did a little shopping but by about 3:30pm I was exhausted so we decided to head home.

Oxford
Oxford

I had such a perfect day with some of the people who matter the most. I hope you enjoyed reading this post!

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1 year cancer free! 

Today is June 30th 2016 which means I’m celebrating 1 year cancer free! I can’t actually believe it, still doesn’t seem real. 1 year ago I heard those words “you’re scan is clear.. You’re in remission” Literally the best day of my life although this past year I’ve struggled with a lot physically and mentally I couldn’t be more thankful and happy to have hit this milestone. There are so many dates and anniversaries that come with a cancer diagnosis but I think this date will forever remind me of my journey.

Cancer free

It isn’t easy living as a survivor, always thinking in the back of my mind that it could come back at any moment. Whenever I feel an irregular ache or pain my mind tries to assume the worst but I know with time it will get easier. I have learnt so much about myself during my cancer journey. The one thing I have learnt that I constantly live by is looking at life in a totally different perspective. I appreciate the little things a lot more than before, I have also learnt to stay strong at even the weakest of times.

 I think cancer has changed me a lot as a person as I now think of my life and future differently. If I want to do something I don’t really think twice as I believe that life is too short. No matter what age you’re at, no matter how healthy you are, you never know or when an illness can strike. Please don’t ever take your life for granted. 

Thank you to every single person who supported me throughout treatment and continue to do so, I am so lucky to have you in my life and I wouldn’t have made it this far without you.

The charity Blood Cancer UK asked me to write a blog for them about being 1 year cancer free and how I’ll be making a difference as an Ambassador for them which is why this post is short.. Sorry!

1 year down, the rest of my life to go! I GOT THIS!

“Surviving cancer isn’t a second chance in your life, it is a new life altogether”

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A new start

Oh, HEY. I’m going to apologise in advance as this is going to be quite a long post to explain why I’ve completely revamped my blog. If you want the short answer I just needed a new start, a complete change so grab a drink and let’s get into it.. 

Why I started a blog in the first place would be good right?

I was diagnosed with cancer in January 2014 and it’s been quite a journey, after finally hearing those words “your in remission” I decided to set up this blog in July 15′ as I wanted to share my whole story with cancer but I just couldn’t remember half the things I wanted to and I was getting VERY frustrated with myself, I blame it on the ‘chemo brain’. I think I got up to chemo 4 when I decided I couldn’t write about it anymore, it was just too hard. So I then took a break from blogging. It has taken me quite a while to back into writing and I didn’t mean to take this long but I’ve had quite a few things going on and this just kept getting pushed back.

From now on, I’m going to be writing about life after cancer, my life in general and just the things I‘m passionate about.

Since finishing treatment I’ve had so many opportunities which I am so grateful for and if it wasn’t for cancer those wouldn’t have happened, so as funny as it sounds thanks cancer.

The last few months..

On the 8th November I was given a pair tickets by The Teenage Cancer Trust & The Queen Elizabeth Charity at the QE to go in a box at Aston Villa for a football match (Aston Villa v Man City) with two other people who had been treated at Birmingham. We had a lovely 3 course meal with drinks and also had a tour of the ground. It was such a lovely day so thank you to the Teenage Cancer Trust who have been absolutely amazing since I got connected with them.

Also thanks to the teenage cancer trust on the 13th – 15th November I was able to go to find your sense of tumour ‘FYSOT’ which was one of the best weekend’s I have ever had. FYSOT is basically a weekend conference for young people who have had cancer and to connect with other young people around the country. It was such a nice weekend to have a little break from everything for a while, so many inspiring stories I will never forget. Having cancer is devastating for anyone to go through especially young people but meeting everyone, sharing stories and spending time with them all makes life better.

Then on the 21st November.. Yep, a lot happened in November. I got contacted by an MTV producer as they were working on a video montage to celebrate the memory of Diem Brown as she sadly lost her battle to ovarian cancer in 2014. She was very much about supporting young women so I was honoured to be asked to be included. In the video, Megan Brown – Diem’s sister reflects on her childhood, adult life and her final battle with ovarian cancer.

Awareness is so important and to let the world know cancer doesn’t care about age, race, gender and religion. We should all be working together for a cure and research. If you have a few minutes please take a look! Here’s the link to the video: https://youtu.be/xNeL7N5UDz8

December came around.. December has always been quite hard for me and my family as that’s when I was originally feeling ill and around when I relapsed last year but we were all determined to make this a good Christmas. BUT at the beginning of December I got asked to write a blog for ‘Blood Cancer UK’ which are the UK’s biggest blood cancer charity.

Blood Cancer UK are the best charity and help support everyone affected by blood cancer, without the research they are doing I wouldn’t be here today.

About a week later I received an email from Blood Cancer UK asking me if I was interested in becoming one of their very first ambassador’s.. Well of course I said yes! I couldn’t have been more thankful for the opportunity! The project is still in the early stages but I’m excited to get started to help spread awareness and support patients with blood cancer.

A new start

After having a couple of amazing months I was so excited for Christmas with all the family. It was so nice to just enjoy the holidays as the last two were just filled with worry and lots of hospital appointments. I had the best couple of weeks celebrating! 

January came around and I couldn’t have been happier to be starting 2016 cancer free. I’d been through hell the last couple of years, so many up’s and down’s, so many emotions but now 2016 would be a fresh start not only for me but for all my family too.

I’d decided I wanted to take on a challenge this year so on the 2nd January I signed up for race for life (5K) at Walsall Arboretum in May. Not only did I sign myself up I also decided to make a team called #SambasArmy. My first thought was I better get myself to the gym.. So that’s what I did! On the 4th January I had my first training session but before I go on I have just got to say a BIG thank you to Fitness First (Cannock) for arranging me to train at their gym for free until my race, I am very lucky to have such amazing support.

Obviously I was VERY nervous as to how my body was going to handle everything, I mean my body has been badly damaged by all the chemo I’ve had but I actually coped alright.. I managed 2km on the treadmill, 1km on the cross-trainer and 3k on the bike. I would have never thought I could have done that on my first session.

Health Update

Since I was given the all clear I’ve been going for check-up’s every 3 months or so and everything has been fine. No lumps or bumps! 2 months after my transplant my bloods were all back to normal ranges which I was VERY shocked about as my bloods aren’t usually that quick to recover.

It’s nearly March now and I’ve got my 8 month check up in a few weeks. For my check up’s I have just been going to my local hospital (Walsall Manor) but for my 8 month check up I have to go back to Heartlands Hospital, this is where I had my stem cell transplant so this a quite a big check up. I’ve been trying to put it to the back of my mind and to not overthink it but it never get’s any easier. I’m sure everything will be fine as I have been feeling really well lately but obviously there is always a worry.

Well, that’s it your all caught up in my life, I promise I won’t leave it as long next time! I’m excited for a new start with my blog and I really hope you are as well. 

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