carly leigh james 🦋 @carlyleighj Twitter profile

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carly leigh james 🦋

9 months

5 whole years of LIVING with myeloma 🧡 5 years of ups and downs, 5 years of winning 🥰 #myeloma #cancerversary #lifecanstillbegood

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carly leigh james 🦋

@carlyleighj

6 months

Guys I done it 🎉🎉 after the year from hell last year, my cancer relapsing and starting 2nd line treatment I got my results today and I’m STABLE!!!!!! everything is within the normal range and my paraprotein is too low to measure 🙌🏼🎉 here’s to a healthy 2024….so blessed 🧡

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carly leigh james 🦋

@carlyleighj

11 months

Transplant day 🎉🧡 I’m showered and ready, seen the doctor everything looks good to go. Come on tiny stem cells do your thing.

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carly leigh james 🦋

@carlyleighj

7 months

Lovely night out last night…it’s been a while. No wigs no head scarfs just embraced my baldy head 😂

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carly leigh james 🦋

@carlyleighj

3 years

3 years today I was told I had incurable cancer…myeloma!! I felt sick, dizzy, scared. Now 3 years on I feel hopeful…hopeful that I can actually imagine a future…new treatments in myeloma are coming on so fast and it makes me excited!! What is life without hope 🧡

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carly leigh james 🦋

@carlyleighj

7 months

Day +100 since stem cell transplant 🎉🎉🎉 feeling positive and strong 🧡time to stop some of my medications now also which is another huge milestone. Myeloma doesn’t get to win this time….dancing my way into 2024 with my cancer stable 🙌🏼🎉🧡

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carly leigh james 🦋

@carlyleighj

3 years

TWO WHOLE YEARS since my stem cell transplant!! And I’m thriving 🎉🎉🎉 I feel so incredibly blessed and thankful. Thank you to my beautiful friends and family for making it so special for me and a huge thank you to my incredible medical team I’m so grateful to you all ♥️♥️♥️♥️

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carly leigh james 🦋

@carlyleighj

3 years

Still in remission still doing great! Almost 3 years since diagnosis and this is the outcome I could only have dreamed about. I’m LIVING with cancer 🎉🧡 #myeloma

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carly leigh james 🦋

@carlyleighj

3 years

I’m alive 🙌 surgery went well. I’m in a lot of pain but keep telling myself it’s temporary ♥️

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carly leigh james 🦋

@carlyleighj

4 years

Myeloma is still firmly in remission 🎉🎉🎉🎉

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carly leigh james 🦋

@carlyleighj

5 months

Amazing results this morning….undetectable paraproteins and everything else within the normal range…blessed, grateful and so happy 🧡 #myeloma

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carly leigh james 🦋

@carlyleighj

3 years

I will never get tired of hearing the words “your lightchains are within the normal range and your paraproteins are undetectable” 🙌🧡 Carly 1 myeloma 0 🥊🥊🥊

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carly leigh james 🦋

@carlyleighj

10 months

I feel like I’m getting stronger every single day after transplant!! Still getting really tired doing the smallest of things but I’m getting better and that’s all that matters 🧡

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carly leigh james 🦋

@carlyleighj

11 months

Ice lollies 🤢 if you know you know 😂

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carly leigh james 🦋

@carlyleighj

3 years

Still in remission 🎉🎉🎉 wow I have to admit I was scared for this clinic appointment. I’ve felt exhausted and weak lately. It’s my colitis that has suddenly flared up causing me to feel ill. I’ll take that over relapse any day 🙌 2 years in remission!! Feeling so lucky 🍀

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carly leigh james 🦋

@carlyleighj

7 months

Wow I am blown away by the comments on my last post….perfect strangers supporting me and lifting me up….thank you so much 🩷 I have a love hate relationship with social media but this proves the good outweighs the bad 🥰 Have a lovely blessed Sunday 🙏🏼♥️

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carly leigh james 🦋

@carlyleighj

3 years

Still in complete remission 🎉 and my amazing haematology team have given the green light for my hip surgery from there end!! 🙏🏻🙏🏻🙏🏻

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carly leigh james 🦋

@carlyleighj

3 years

Currently inpatient on ward 34 at the nccc and as usual the nurses are pure gold 🥰 absolutely phenomenal care!! One nurse in particular talks so passionately about the future of myeloma it’s really made my day ❤️🥰

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carly leigh james 🦋

@carlyleighj

1 year

Well it’s safe to say my 2nd line treatment of KRD is working very well. The results from just 1 cycle are phenomenal 🧡 I’m absolutely over the moon to know it’s all been worth it. Started 2nd line yesterday and the results were the boost I needed 🥰

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carly leigh james 🦋

@carlyleighj

3 years

Starting these bad boys today, apart from a little hiccup the new scheme for CEV people in regards to priority pcr and antiviral meds is amazing, fast and efficient #covidwithcancer #myeloma #antiviralmedication

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carly leigh james 🦋

@carlyleighj

9 months

Every muscle in my body hurts since transplant, walking upstairs is agony!! I don’t remember it being so painful last time. Feeling super sorry for myself today #myeloma #stemcelltransplant #healing #painful #stillsograteful #alwaysblessed

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carly leigh james 🦋

@carlyleighj

11 months

Day one done….melphalan in and I feel ok! I’m taking it one day at time. The staff are bloody amazing. I feel safe and looked after 🧡 all done wearing my myeloma uk t shirt!! It’s only right since this is day 1 of kicking it’s arse AGAIN!!

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carly leigh james 🦋

@carlyleighj

10 months

After what can only be described as absolute hell is finally over. After 3 & a half weeks in the hospital I’m coming home to my babies 🎉 I’m broken, weak and traumatised but I’m thankful!!

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carly leigh james 🦋

@carlyleighj

9 months

Todays been a good day 🧡🎀

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carly leigh james 🦋

@carlyleighj

5 years

When you have faith and believe in yourself you can move mountains 🙏🙌😊🎗

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carly leigh james 🦋

@carlyleighj

4 months

Look at all that hair 🙌🏼🙌🏼 5 months of growth…it really fills my heart ♥️ #myeloma #hairloss #cancer #stemcelltransplant

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carly leigh james 🦋

@carlyleighj

3 years

As scared as I am for surgery tomorrow I honestly can’t wait to never feel this horrific pain anymore. Sitting here crying in pain but also happy tears as it’s the last night I’ll feel like this 🙌 #myeloma #youngwithcancer #hipreplacement #letsdothis #avn #surgery #bloodcancer

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carly leigh james 🦋

@carlyleighj

3 years

Really scary announcement today for my beloved blood cancer community ♥️ sending love to anyone vulnerable who just feels completely FORGOTTEN by this useless government!!!

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carly leigh james 🦋

@carlyleighj

2 years

Appointment went well, confirmed I am relapsing but slowly. Good thing about this is it gives us time to decide on 2nd line treatment. We discussed what this will be at great length. So thankful to my team at the freeman ♥️ I feel so safe and looked after.

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carly leigh james 🦋

@carlyleighj

11 months

Last chemo done ✅✅✅ Time to celebrate with my family. 6 cycles of KRD done 🎉 Next stem cell transplant number 2 🥹

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carly leigh james 🦋

@carlyleighj

2 years

What a day I had yesterday. Went for my MRI had to have contrast with it, only had a bad allergic reaction to the contrast! Had to be put on a ward, saline drip and antihistamine injections!! You couldn’t write this shit!! Only me 🤦🏻‍♀️😂 managed to complete the scan tho 🙌🏼

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carly leigh james 🦋

@carlyleighj

3 years

Hopes for 2022……to keep staring myeloma in the face and winning 🙌🏼🧡 almost 3 years in remission…blessed beyond belief 🙏🏻

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carly leigh james 🦋

@carlyleighj

3 years

I’m coming home tomorrow 🎉 this has been so tough I literally had no clue how hard it was going to be!! I’m beaten, exhausted, sore BUT determined to get back on my feet

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carly leigh james 🦋

@carlyleighj

1 year

Great morning at my local myeloma support group. Todays talk about new up coming treatments has given me so much hope I’m so glad I attended 🧡

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carly leigh james 🦋

@carlyleighj

3 years

Bloods still great my paraproteins are undetectable and my light chains are within the normal range. Going to be having an mri in the next few weeks because of some bad back pain. But with bloods this good I’m not worried 🧡🎉

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carly leigh james 🦋

@carlyleighj

6 months

Wow 170k views on my latest TikTok. That’s 170k people who have now heard the word myeloma…awareness is key 🧡 and it’s something I’m passionate about. If even 1 person out of those thousands seeks help for symptoms it’s been worth it 🥰

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carly leigh james 🦋

@carlyleighj

1 year

Myeloma uk info day. I had the privilege of standing up and telling my story. What an amazing day full of hope for the future 🧡

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carly leigh james 🦋

@carlyleighj

1 year

Definitely relapsed, spoke to my consultant this morning who said we are going to start treatment soon. Transplant clinic next Thursday the 16th and hopefully come out with a solid plan. Scared, emotional but ready to get started and get back in remission 😢

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carly leigh james 🦋

@carlyleighj

2 years

In all seriousness tho. I’m feeling so blessed and grateful that 4 years down the line the myeloma is still asleep. I can’t thank my team enough for everything they do for me. I couldn’t do it without them 🧡

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carly leigh james 🦋

@carlyleighj

9 months

Good clinic appointment today. They are pleased with my progress 🧡 4 weeks ago I could hardly walk I was so weak going into clinic….today I drove myself there feeling really good 🥰 #myeloma #NeverGiveUp

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carly leigh james 🦋

@carlyleighj

3 years

Feeling lots better tonight….I finally stood up and took a few little steps. Felt like I’d ran a marathon but I was so proud of myself 💕

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carly leigh james 🦋

@carlyleighj

1 year

Started cycle 4 today….and got a date for stem cell transplant number 2 which will be September. Scared but so ready!! Lots of fun things planned for beforehand to enjoy summer. Doing transplant as inpatient so going to soak up every summer moment with my boys 🧡

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carly leigh james 🦋

@carlyleighj

3 years

I genuinely wouldn’t be here today without the amazing team at the freeman hospital, they really are the absolute best! From my amazing consultants, my cancer nurse specialists and all the amazing nurses who are just angels in my eyes. I feel very lucky 🧡

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carly leigh james 🦋

@carlyleighj

2 years

Had such a great morning at my 1st myeloma support group yesterday. Run by my amazing nurses. A great talk from prof Jackson about new treatments 🧡 the future looks so great for myeloma patients 🥰

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carly leigh james 🦋

@carlyleighj

8 months

Myeloma clinic today. Consultant is pleased with how it’s going. I need to slow down a little bit, which to be fair I knew! I’ve been doing too much too soon. Bloods taken should have the results next week 🤞🏼🙏🏼

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carly leigh james 🦋

@carlyleighj

3 years

Blood cancer treatments have come a long way but it’s still one of the cancers that takes the longest to be diagnosed! Learn the signs and symptoms and advocate for yourself. My cancer was caught early I was lucky, however in hindsight I should have been referred much sooner!

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carly leigh james 🦋

@carlyleighj

6 months

So excited for the things I have planned this year 🙌🏼 starting this weekend with the girls 🎉♥️🥂 my only goal for this year is to live it to the fullest 🧡 #cancer #myeloma #stableresults #livingwithincurablecancer

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carly leigh james 🦋

@carlyleighj

1 year

Treatment day today, I spent 6 hours in the hospital. Because I was a little unwell and wobbly they wanted to check my bloods before green lighting treatment (all ok) my team are simply amazing, they leave no stone unturned when caring for me. I’m incredibly lucky ♥️🥰

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carly leigh james 🦋

@carlyleighj

2 years

Big results day tomorrow. After 3 & a half yrs of undetectable paraproteins I was told before Xmas that they have reared there ugly head again. I’ve had more bloods done and a full body MRI and will be at the hospital at 9am tomorrow to see what the plan is 😢

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carly leigh james 🦋

@carlyleighj

3 years

I have tested positive for covid, I guess it was unavoidable giving that both my kids have it. I used my priority pcr and I’m just waiting for my anti viral meds 🙌🏼 so far just a slight headache 🤕 praying it stays this way

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carly leigh james 🦋

@carlyleighj

4 years

Today marks 1 full year in remission 🎉🎉🎉 feeling so blessed and grateful 🧡 hearing you have incurable cancer is so traumatic but now I know more about myeloma and the way treatments constantly change why can’t I dream of a future 🙌

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carly leigh james 🦋

@carlyleighj

3 years

I hate this disease with a passion!! It’s changed my life forever and it’s taken the lives of people I love and care about!!! It’s just so wrong. Fuck you cancer 🖕🏼

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carly leigh james 🦋

@carlyleighj

3 years

Registered interest for an access to higher education course in nursing today!! I can’t sit round waiting for myeloma to come knocking again. It’s time to follow my dreams and nothing feels more right then nursing….I feel like it’s calling me even more after everything 🙏🏻♥️🥰

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carly leigh james 🦋

@carlyleighj

10 months

It’s lovely being home 🧡 but I’m really struggling still. Zero appetite and just so weak. The emotional trauma is a lot too. Wish I could fast forward a few weeks 😢

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carly leigh james 🦋

@carlyleighj

9 months

Waiting for a phone call with my 1st lot of results since my transplant 🧡 stomachs going wild with nerves.

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carly leigh james 🦋

@carlyleighj

11 months

All packed for tomorrow. Got to ring the ward in the morning to see what time I have to go in…. I’m praying to the bed gods they have one 😂🙌🏼

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carly leigh james 🦋

@carlyleighj

1 year

Week 2 of cycle 3 🧡 potentially 1/3 more cycles to go and then gearing up for my second stem cell transplant. Hopefully ending this year back in remission 🙌🏼🙏

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carly leigh james 🦋

@carlyleighj

2 years

Some amazing charities who do so much for us as patients… @bloodcancer_uk @MyelomaUK @BrightRedOrg @DKMS_uk @AnthonyNolan As a myeloma patient I remember feeling utter fear, like I held my breath for 4 years. But now I feel hopeful and that’s huge 🧡♥️🤍

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carly leigh james 🦋

@carlyleighj

1 year

Day 1 of 2nd line treatment….nervous as hell but so ready 🥊🙌🏼♥️

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carly leigh james 🦋

@carlyleighj

2 years

#NationalCancerCNSDay I don’t know what I would do without my specialist nurses…they are always my 1st port of call, they listen, hug, explain things in terms I fully understand. They are my angels 😇 they genuinely go above and beyond constantly 🤍

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carly leigh james 🦋

@carlyleighj

11 months

Sitting packing my bags for my transplant on Tuesday. Hairs coming off tomorrow. Shits getting real now 😞 #myeloma #stemcelltransplant #scared

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carly leigh james 🦋

@carlyleighj

2 years

38 today 🎉🎉🎉 feel nothing short of blessed to see another year and be doing as well as I am ♥️ today consists of family friends cake and wine 🍷

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carly leigh james 🦋

@carlyleighj

1 year

💖💖💖

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carly leigh james 🦋

@carlyleighj

2 years

They get me through my darkest days 🥰💙

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carly leigh james 🦋

@carlyleighj

3 years

#ThisIsBloodCancer 🩸 1in2 of us will be diagnosed with cancer….that’s staggering!! Get to know your bodies, educate yourself on signs and symptoms, learn what’s normal and seek advice ASAP for what’s not!! Early diagnosis gives you a much better chance ♥️

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carly leigh james 🦋

@carlyleighj

3 years

37 today 🎉🎉🎉 blessed to see another year. Feeling strong and lucky to be surrounded by the best people 💗 #birthday #myeloma #lucky #blessed #cancerdoesntgettowin

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carly leigh james 🦋

@carlyleighj

1 year

Reality has hit me hard today that I’m now on 2nd line treatment. I don’t feel poorly as such but I feel really tired and odd. Just got to remind myself this is 6/7 months of my life and push on

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carly leigh james 🦋

@carlyleighj

2 years

It’s so bloody stressful waiting on scan results 😩 I’m a giant ball of anxiety 😥

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carly leigh james 🦋

@carlyleighj

4 years

I’m having my covid vaccine on Thursday 💉🙌 I feel very emotional and so so grateful!! Thank you to everyone who worked so hard to make these vaccines available ♥️ I feel like there is light at the end of a very long tunnel

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carly leigh james 🦋

@carlyleighj

1 year

Just putting it out there I HATE dexamethasone 🤢

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carly leigh james 🦋

@carlyleighj

4 years

@CancerisanASS How hard life after treatment is ♥️ mentally and all the long term side effects. It’s not spoken about enough. Your in a treatment bubble then it’s back out to live a life that’s very different

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carly leigh james 🦋

@carlyleighj

1 year

Cycle 1 of KRD smashed 🙌🏼🎉 a week off now and then let’s be having you cycle 2 🧡

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carly leigh james 🦋

@carlyleighj

4 years

It's my 1st birthday 🎉🎉🎉 One whole year since my life saving stem cell transplant 🙌 I feel so completely blessed and so incredibly lucky 🎉 Tonight I'll celebrate with a glass of fizz and also raise a glass to every single person touched by cancer 🥂 Keep fighting 🧡🧡🧡

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carly leigh james 🦋

@carlyleighj

2 years

Today feels really heavy, call social media what you want but on insta we have the biggest most supportive cancer community!! But with that comes deaths, progression and end of life and you lose the friends you have come to love!! It never gets easier 💔

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carly leigh james 🦋

@carlyleighj

1 year

💫chapter 39💫 Blessed to celebrate another year 💖

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carly leigh james 🦋

@carlyleighj

2 years

4 years since diagnosis and doing ok 🧡 I feel so hopeful for a long life.

Myeloma UK

@MyelomaUK

2 years

🧵 You may have seen reporting today that suggests that myeloma patients can only expect to live for months after a diagnosis. This isn't accurate. #Myeloma is a very individual cancer but thanks to progress in diagnosis and treatments, life expectancy has dramatically improved.

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carly leigh james 🦋

@carlyleighj

3 years

Just received my invite for my third covid jab 🙌🎉

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carly leigh james 🦋

@carlyleighj

1 year

Well 2nd line treatment is starting in the next 2/3 weeks. I’m starting KRD…feeling scared and nervous. Looking forward to getting a few good nights with my girls in before then, they know just how to cheer me up ❤️

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carly leigh james 🦋

@carlyleighj

1 year

Chemo today….after today I only have 7 more left 🎉

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carly leigh james 🦋

@carlyleighj

3 years

Finally got the call today....my surgery is in 3 weeks time 😬 finally going to have a brand new hip 🙌 last week of freedom next week as I have to isolate for 2 weeks before I’m admitted. Excited to be pain free but so nervous to have the surgery 😢

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carly leigh james 🦋

@carlyleighj

4 years

Just had a lovely chat with my favourite nurse cath cox ❤️ I love her!! She’s always there for me!! She was there the day I was diagnosed and has been by my side ever since!! I love my medical team 🥰❤️😇

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carly leigh james 🦋

@carlyleighj

8 months

Amen 🙏🏼🙏🏼🙏🏼

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carly leigh james 🦋

@carlyleighj

11 months

Last night in Bulgaria 🩷 had the best time. Transplant next week….I’ve got this 🧡

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carly leigh james 🦋

@carlyleighj

2 years

4 years yesterday since i was diagnosed with myeloma. And I spent it asleep on the operating table getting my knee fixed 😂 you couldn’t make this shit up!!

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carly leigh james 🦋

@carlyleighj

3 years

Walking into a new week 🧡

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carly leigh james 🦋

@carlyleighj

7 months

Wishing you all a happy and healthy new year 🥂🎉🧡

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carly leigh james 🦋

@carlyleighj

3 years

Just done the school run 🙌 obviously not alone as I can’t drive for a few more weeks but I walked from the car to the school and back again!! To see the look on jacks face that I was at the school was absolutely priceless!!! Everyday gets better ♥️

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carly leigh james 🦋

@carlyleighj

8 months

Had such a great day at my local myeloma support group Xmas party! These groups are so important to patients 🧡 and I’ve met some of the loveliest people over the past year. Only complaint is I didn’t win the Xmas quiz 😂

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carly leigh james 🦋

@carlyleighj

1 year

Bank holiday fun at the sage seeing the incredible Whitney queen of the night show 😍♥️ no matter what your going through grab life by the balls and enjoy every second…..cancer who 🤷🏻‍♀️

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carly leigh james 🦋

@carlyleighj

4 years

Today is #CancerSurvivorDay 🎗 In my opinion the word survivor does not just mean remission/NED anyone touched by cancer wether your still fighting/incurable or in remission your a survivor!! Sending love to all my fellow warriors on this day and everyday❤️

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carly leigh james 🦋

@carlyleighj

3 years

Pre op went great but boy does it feel real now 😬😬😬 in just a few weeks I am going to have a brand new hip and be pain free 🙌🙌🙌

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carly leigh james 🦋

@carlyleighj

3 years

Been so upset not being able to have a visitor. Today my door opens and it’s my cancer nurse specialist Cath come to see me with a get well soon card. Perked me right up 💕

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carly leigh james 🦋

@carlyleighj

2 years

My amazing team at the freeman brought me into the day unit and I went home with a bag of medication to help with the pain!! I also have my full body mri this Thursday 🙌🏼 not looking forward to it but can’t wait to get some answers

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carly leigh james 🦋

@carlyleighj

4 years

Having one of them days, feeling scared and unsure. Reached out to @MyelomaUK this morning and feel so much better and way more positive. Thank you for always being there 🧡 #myeloma #myelomauk #wrappingtherearmsaroundus

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carly leigh james 🦋

@carlyleighj

7 months

✨🩷🙏🏼

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carly leigh james 🦋

@carlyleighj

11 months

✂️🧑🏼‍🦲✂️🧑🏼‍🦲✂️🧑🏼‍🦲

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carly leigh james 🦋

@carlyleighj

3 years

My little angel is doing great 😌 you wouldn’t even think he had covid. Couldn’t be happier. Also the other 3 of us In the house are still negative 🙌🏼 praying it continues 🙏🏻 testing positive is my biggest fear.

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carly leigh james 🦋

@carlyleighj

3 years

RIP Sarah 💔 so heartbreaking to hear this sad news

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carly leigh james 🦋

@carlyleighj

4 years

Cancer sucks FACT!! But it’s brought the most amazing people into my life so for that I’m thankful 🧡 it’s also brought about some exciting opportunities....watch this space 😉😉😉

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