Lymphoma Out Loud

Our Mission Against Cancer!

Who are we? We’re the disruptive charity that educates young individuals. Energising mind, body and spirit!

​Lymphoma is the most common cancer in the under 30’s. We can’t afford to stay quiet anymore. Lymphoma Out Loud is an education and awareness initiative for under 30s. We maybe small, but we’re a mighty team with one vital and important message – #BeBodyBrave

We provide a network offering information and support amongst like-minded individuals and family members supporting those experiencing lymphoma. You’ll be able to learn and understand the challenges lymphoma brings.

This form of cancer is becoming increasingly more common with many are unaware of its life-threatening form. We scream in the face of cancer and help others to confront their fears too. Encouraging others with concerns about their health to visit a doctor with confidence.

 

#BeBodyBrave

http://www.lymphomaoutloud.org

The Chemo Graduate!

Today is final treatment day!! t’s pretty crazy to think that I’ve been having treatment for cancer for the past two and half years. It’s been a long, tough and rocky road and there’s still a lot of uncertainty for the future but I’ve made it and i’m massively sticking two fingers up to cancer today.
This blog is going to be short and may not make a heap of sense – i’ll blame that on the drugs that i’ve been pumped full of today. 

I have so many people to thank for helping me to get right to this point. But three in particular.

My defiant sister. You helped me get through those dark early days. You faced my cancer diagnosis with a steely determination that I would beat it and never once did your belief falter and you never let mine falter either. Despite having my two little nephews – you put me first. Together we harvested wheat grass, we filled my body with nutrients and goodness to fight the cancer. We took on the cancer together, my body was battered by the treatment and you built me back up again.

My amazing girlfriend Francesca – I cannot begin to imagine what you must have gone through, watching the person you love in pain and seriously ill. But you did so with such bravery and love. You’ve not known me without the cancer and you never once made me feel like the girl that was seriously ill – this is credit to what a beautifully kind and loving person you are and have been bought up to be. You were my light and driving force to getting better, in you I saw my happy ever after and you were and are so worth fighting for. We’ve gone through what no couple should have to and we’re stronger for it. Thank you for never missing an appointment, holding my hand during the tough days and celebrating the little victories and of course the Mentos supplies at chemo days. I’d be lost without you, I love you.

Lastly but no means least, the wonderful NHS. My consultant, his amazing secretary and all of the nurses. You’ve quite simply, saved my life. Thank you for the care and compassion you’ve shown me these past three years. I’ll forever be grateful.

In a conversation with my consultant I asked him what happens now.

He said, “you go and live and most importantly be happy.”

I think i’ll go and do exactly that.

Along came the blip..

Sorry for the radio silence for the past year but I didn’t think I had anything new or interesting to share and have been working hard on the charity launch. The cancer was behaving, the bimonthly treatment was becoming easier to manage, I’m going on adventures with my girlfriend, I’m eating three meals a day (four at the weekends), I’m going for weekend drinks with friends, I’m attending weddings and celebrating birthdays. Everything is just normal – expect of course the cancer. But that’s my normal and like I said, that was behaving – but then along came the blip.

 

 

Of course there’s a blip – I was never going to get any easy go at this. The blip began around 5 months ago – sickness, bloating, tiredness. It wasn’t just the physical symptoms, I’m emotional and feel weirdly clouded and distant, my girlfriend can concur – I haven’t been me.

So along came a phone call from the consultant – your liver levels are 6x over the normal reading (and have been for a fair while). Balls!

Cue – back to back hospital appointments and the cancer comeback anxiety.

I was worried, the consultant was professionally concerned. Scans were needed to find out what the heck was going on and why my liver was freaking out. Our main concern was more cancer!

I haven’t had a CT scan since waaay back 2015 – 3 months into my strong chemotherapy regime – where it showed the alien tumour still bobbing about in my abdomen. So I was super anxious to find out whether the massive bastard had been wiped out or had spawned its ugly self all over my liver too.

This day in hospital was a tale of two tales; My sister, brother in law and nephews were on one side of the hospital with my nephew who was receiving IV antibiotics after infecting his arm from falling in the woods –(my nephews are gorgeously wild) and on the other side of the hospital was Francesca and I, wildly pacing corridors.

Today was one of the most difficult days since I was diagnosed with cancer. I think I was weirdly calm – I’ve become pretty good at cocooning myself to get through tough days. However, it’s not just me going through it, I have an amazing girlfriend, who has never left my side or let go of my hand through any of this, and she’s witnessed everything. She’s held me when I’ve been too weak to stand and encouraged me to eat when my body wanted to reject everything. Today she’s watching needles go in me, she’s seeing me rushed into scans, and today she could possibly hear that the person she loves is really sick again. I know she’s scared and I know she’s sad – her blue eyes tell me, but selflessly she doesn’t let on, instead she bolsters my cocoon with ‘love yous’.

The wait for the results was long and stressful. Watching my consultant walk down the corridor with the results on the paper seemed to last forever and all sorts of crazy outcomes ran through my head. “Its spread, it’s spread, the cancer has got worse” is all I could hear in my head; I braced myself for those words.

“The scans clear”

Pardon?

“THE SCAN IS CLEAR” my consultant repeated.

My chemo nurse stood next to him grinning. I felt the weight of relief fall off of Francesca who had been so strong all day. My scan showed no signs of tumours!!

“The scan is clear, you’re effectively in remission” my consultant confirmed, a little smile on his relieved face.

REMISSION!! I AM IN REMISSION!

That one little word that I have been desperate to hear since I was diagnosed! Having my sister on the other side of the hospital was pretty perfect. She had been there since day dot – she was in the room when I heard the words ‘you have cancer’, she helped me get through the dark early days. She is another strong, selfless and wonderful woman that I am lucky to have in my life, she has lived through this with me and I couldn’t wait to tell her the news.

The day ended so differently to how it began – lots of happy tears and an incredibly squashing group hug – my sister (and baby Bo bump at the time), brother in-law, my two wild nephews and Francesca and I.

After endless hospital appointments, years of medication, needles and tears, I had finally reached the end.  At that moment, I felt so so happy and so free. A huge, suffocating weight had been lifted from me and I could actually see a future away from cancer, I couldn’t quite believe it and a part of me still can’t – there is still a lot of uncertainty ahead – I have an incurable cancer and possibility of relapse is there but right now absolutely nothing is going to take away the absolutely joy and determination I have to live!

Don’t get carried away folks – it’s not over yet, the blip continues with liver biopsy and bone marrow results– updates to follow

Chemo to 10k

If you’ve been reading my blog you’ll already know this, but, for those late to the party i’ll bring you up to speed. In March 2015 I was diagnosed with an incurable type of lymphoma. Lymphoma is a blood cancer and the most common cancer in the under 30’s! However, despite this very important fact, doctors were dismissive of anything being wrong because of my age. By the time I was eventually diagnosed my body was covered in tumours and the cancer had spread to my bones – my chance of it being cured, I was told, was gone.

Two months after my diagnosis I set up Lymphoma Out Loud, an education and awareness organisation aimed at young adults. With lymphoma being the most common cancer in the under 30’s, we as an organisation want everyone to know the signs and symptoms of this disease, be body aware and to have the confidence to head to the GP if they notice anything that doesn’t feel right.

I am currently undergoing immunotherapy treatment every two months for two years – this is a maintenance therapy to prevent my cancer from relapsing. I’ll be having this treatment two days before I take on a 10k run to raise money for Lumped with Lymphoma. We want to raise £3000 to get us registered as a charity which will enable us to reach many more young adults to spread more vital awareness.

We’ve got quite a running force, a running force that should probably belong to the Unlikely Runners Club. It’s going to be one heck of a challenge for me and it would mean the absolute world to me if we would reach our target. 

https://crowdfunding.justgiving.com/LumpedWithLymphoma

Our very snazzy running vests

 

#bebodybrave

It’s been 1 year and 29 days since I was diagnosed with cancer.

March 19^th 2015 is a day I remember so vividly and a day that has shaped my future. I am so thankful that my amazing sister was there that day, and she has not left my side since. She managed to convince me that this wasn’t the end of my life, it was just the beginning – a pretty tough feat considering I was diagnosed with an advanced stage incurable cancer!

And it’s been one heck of year. Countless hospital gowns, drips, injections, collapsed veins, sick buckets, nurses, tears, laughs, and bags and bags of chemotherapy. My summer of 2015 was spent kicking cancers butt!

It hasn’t all been terrifying and painful. I’ve started up an organisation to raise awareness and educate young adults on the signs and symptoms of lymphoma. Setting up the organisation is my way of taking on cancer and equally ignoring the fact that I have it! I did not like the feeling of helplessness that came from my diagnosis nor did I want to be absorbed by the feeling of fear, I wanted to stick two fingers up to cancer and create something positive from my very shit situation.

Check it out here www.lumpedwithlymphoma.org or here https://twitter.com/bebodybrave or search for Lumped with Lymphoma on Facebook.

Lymphoma is the most common cancer in the under 30’s and people being diagnosed is increasing year on year and it’s not because they’re getting better at diagnosing cancer, which is pretty scary. Knowing the signs and symptoms of this awful disease would have helped me push for an earlier diagnoses and potentially a cure. So take 5 minutes out of your day and read and share the signs and symptoms of lymphoma, it could save a life.

My life a year on since being diagnosed is extremely happy and fulfilling – I spent March 19^th 2016 on an adventure weekend, I spent that day tearing around on a quad with the most incredible woman who has helped me transition ‘cancer life’ into ‘normal life’ and keeps that smile on my face.

I’m still having chemotherapy treatment, I have immunotherapy infusions every two months. This is to stop my cancer from relapsing., until they find that cure or until my body is strong enough. So for now, I’m living with cancer and I bloody love living.

Now go check out Lumped with Lymphoma! Know the signs and #bebodybrave.

Immunotheraphy infusion

Vroom vroom

Happy Days!

 

 

Lucky number 16

August 16^th was the start of an incredibly beautiful adventure, September 16^th was the end of the toughest, cruelest part of my life. How could two things so completely different collide so perfectly?

For 6 months my life had been shattered, my heart broken and my body empty, ravaged and exhausted by cancer and chemotherapy. You don’t expect anything good or positive to happen from such a devastating diagnosis, but that’s the one thing I held onto. Through my darkest days I kept hold of the good times, clung tightly to the positive thoughts and hoped desperately for a happy future.

It’s only in the darkness that you can see the stars

On August 16^th I finally saw the stars and met the most amazingly honest, soulful, caring and beautiful woman. On September the 16^th I finished chemotherapy and there ended 2 years and 9 months of pain and turmoil. It was like the darkness that was trying to overwhelm me had been instantly dispersed by purity and goodness. It was fate, destiny, my light and star all in one. In one person I could finally see my future; a loving, happy, adventure filled future.

Being diagnosed with cancer has changed my life. I appreciate the small things, laugh at the silly things, I’m kinder, more selfless and understanding, I’ve opened my heart to love and I’m the happiest I have ever been because of it. So i’ll take all of that darkness because I’ve finally been able to see my star.

Chemo zombie

There is no sugar coating chemotherapy treatment. It is bloody horrendous. It’s the worst kind of hangover x100. I always walk into the first day of treatment fresh faced and then leave 5 hrs later a horribly sickly grey colour. I don’t feel myself, I don’t feel human. My brain is mush, my muscles ache, the fatigue is incredibly frustrating, my mouth is coated with a gag inducing metallic taste, I don’t want to eat, I have no concentration or want to do anything, i’m easily frustrated and confused, sleep is impossible. I am a chemo zombie.

I’ve just finished my 4^th cycle, I thought the more treatment I have, the easier it’ll be and the better i’ll cope. Unfortunately, this is not the case. I’m now fully aware of what awaits me come chemo day and the anxiety and nerves kick in once i’m in the car on route to the hospital. You shouldn’t wish your life away, and I certainly shouldn’t be doing that, but, I want these next two cycles, these next two months to be over with. Life can then return to normal and I can continue being a crazy 20 something year old, that doesn’t have to miss her best friends birthday because of chemo sickness!!!

The first week after chemo is the yuckiest and it’s a constant battle to stay sane. So to try and avoid turning into that chemo zombie these are my do’s and don’ts for this week.

Do sleep – sleep when you can, have a quiet space that you can take yourself away to. Rest is a big must.

Don’t push yourself – I’m not a very good ‘sick’ person. I treat my cancer as though its the common cold and don’t see it as this scary illness. So I think I can do more than I actually can. Resting frustrates me and I feel guilty for doing so, but in order to get better it is a necessity.

Do eat. Eat little amounts and eat whatever you fancy. I put pressure on myself to stick to a healthy diet and its pretty impossible. Taste buds are gone and the thought of food is gross. So grab anything that takes your fancy.

Do drink water. Drink tons of the stuff, the only way to get those toxins and dead cancer cells out of your body is to guzzle that H20.

Do get outside. I’ve found staying indoors only makes me feel worse. The fresh air and change of scenery does wonders.

Don’t stress. Don’t put any add stresses or pressures onto yourself. And if you do feel overwhelmed and stressed then listen to music, meditate, read, walk and laugh! Laugh about your unfortunate shitty situation 🙂

Do know that this is only temporary, know that you’ll come out of this stronger, fitter and tougher. Know that this is the hardest thing you’ll ever face, and face and beat it you will.

Ta-ra hair

One thing that I hate most about all of this is how the bastard is trying to take control of my life. Trying being the operative word here. From being hospitalised from the pain of it fighting back against treatment, to isolating myself from everyone because of my low immune system. I felt it was digging in its long, dirty, nails into me and exerting its control. So I decided to take some control back, starting with a hair cut! Obviously the big thing with chemotherapy and the stand out feature of cancer is the hair loss, in the grand scheme of things not a big deal right? But the thought of my hair coming out – as dry and frizztastic as it is, would be soul destroying. And although my consultant said he doesn’t think it will all fall out, I didn’t want to take that chance, I didn’t want to have to unclog it from the shower plug or see it on my pillow when I wake up in the morning so I went and booked myself in for an ‘intensive trim’. I thought this would be tough, i’m not saying it was easy, but watching my hair fall to the floor I felt triumph, I was sticking two fingers up to the cancer and it felt great. 

The tantrum

I’d been home one night before I was rushed back into hospital. Ok, so I was expecting sickness, tiredness, you know, the standard well known chemo side effects but this horrendous pain in my abdomen was not expected. My stomach was a swollen mess, I looked heavily pregnant – but pregnant with an evil alien cancer bastard. The next 12 hours were spent in A&E on morphine. The morphine was only able to slightly take the edge off, whatever was going on inside my tummy was not letting up. I figured the alien bastard was enraged about the chemo I attacked it with the day before and was throwing one almighty strop. The scans and blood tests (it only took two nurses this time to find a vein) proved inconclusive so it was back for a stay at my cancer ward – which is fastly becoming my second home. My consultant said he believed the pain and swelling was caused from the chemotherapy attacking and breaking down the tumour/alien bastard, and because the alien was so big it was causing all sorts of problems for my organs – so I was right, it was having a tantrum.

Breakfast, lunch and dinner

Luckily this time around I snagged my own room for my stay and I spent the next two days attached to a drip, feeling incredibly rough and sorry for myself. Occasionally i’d wonder down to the main ward to see a friend that I’d made when I was having the chemotherapy. She was having treatment for lung cancer and had already undergone lots of treatment, I found her incredibly brave and she made me feel positive and safe. Although, these visits were short lived because my drip machine would have a panic attack about being unplugged and would beep constantly at me until I plugged it back in. Me and that thing had a love, hate relationship. But the visits to her were well worth the drip aggro and it was reassuring to know she was still there once my friends and family had left for the day. So when she knocked on my door a couple of days later dressed in her clothes i.e. no hospital gown and needles out, I knew she was leaving, she was going home. And I was so happy for her, long hospital stays mixed with cancer treatment can become soul destroying, and we all focus on getting better and back home. But I couldn’t help but feel sad and choked up when we were saying goodbye, I guess the only people that truly understand what you’re going through are the people that are also going through it. Once she left my room, I cried, I really cried, I felt horribly alone and scared. Everything hit me that day, I sat alone in that room, well I guess technically not alone, the alien bastard was keeping me company wasn’t it. This was one of my hardest days.

“Hope is being able to see that there is light despite all of the darkness” – Desmond Tutu

But soon my sadness turned to frustration and anger and determination. There was a battle going on inside my body. The alien bastard wants to consume everything, it wants to make me fearful, and ill and scared but hell if i’m going to let that happen. I don’t think it realises how competitive I am, well it’s about to find out.

Two days later, the swelling and pain was gone and my consultant sent me home. Ha, up yours cancer. 1-0 to me. *smug face*

Oh yes.

Cancer juice

Rituximab and Bendamustine will be my cancer fighting juices for the next 6 months. Such serious names right?! They should definitely be renamed something much cooler. So Rituximab is a monoclonal antibody, or immunotherapy treatment. It works by teaching my body’s immune system to recognise those sly cancer cells to then attack and destroy!! Cool huh. Then Bendamustine is your regular chemotherapy drug and comes in to do the clean up work, literally destroying everything in its path, including my lovely healthy cells. But I guess as long as its destroying the cancer i’ll let that part slide.

My new friend for 6 months

Something i’ve discovered throughout the multitude of tests i’ve had to go through was that my veins can be incredibly wimpy. As soon as they become aware of a needle coming for them they shy away and today was no exception. No matter what I do my veins just won’t co-operate, they don’t want to play this cancer game and quite frankly I don’t blame them. But i’m now on my third nurse in an attempt to get a needle in to start the treatment and i’m starting to become a tad squeamish and embarrassed at the fuss this is causing. But hallelujah, third time lucky, I’m going to call her the vein whisperer.

Pumping the drugs in

To ensure i’m sufficiently distracted for the day my friends skived off work to keep me entertained. My friends provide me with that sense of normality in my very confusing new world. And even though i’m sat in a hospital ward, attached to an IV with poison pouring through my body, the cancer is temporarily forgotten and the fear is gone. Instead the room is filled with hysterical laughter, its talk of what takeaway they can sneak in and how we can replace the fluid in the IV bag with wine. Sure, chemo day is bloody scary but having your best friends there making you laugh until you wee, makes it a damn lot easier!