Rare Radicals (2026)

28/02/2021

Thinking of all us rarities today!

28/01/2021

Posted • .georgina.morgan GOODBYE NIC: Today your beautiful family will say goodbye and remember you ⁣
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All over the world your friends are doing the same
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We met through Instagram and our shared experiences as rare cancer patients. Ours paths so similar yet different. The same hopes, needs, wants and fears. ⁣
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I’m still reaching for my phone to tell you something, share a new bit of info and just to say hello. I miss your positivity and encouragement. ⁣
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You didn’t loose your fight, you succeeded every step of the way. Now you’re free from pain and at peace. ⁣
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Thank you for being my cancer bestie, simply the best friendship to arise from such a rubbish situation and our diagnoses. ⁣We set up recognising how lonely it is to have a rare cancer.
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Reserve me that sunbed next to yours and have me a G&T waiting for when I see you again and we will have that massive hug and cwtch my lovely. ⁣
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Fly high amongst the stars Nic.

10/12/2020

MISTLETOE DAY 7/8: All in all the second fever session wasn’t as bad as the first but I headed into the 3rd and final session rather reluctantly. I told them I was up for doing it again but fortunately my previous 2 good responses were enough as we decided on a milder 3rd treatment. ⁣
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I had the highest dose infusion yet, 160mg IV and a much lower subcut dose to minimise the response. ⁣
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I haven’t had a fever this time which is a relief. All the injection sites have reacted and flared up being itchy and red. This led to a disturbed night sleep so I feel a tad groggy today. ⁣
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I’ve been taught how to manage the next stage of mistletoe treatment. I go home with a starter kit and will inject subcut, using diabetic needles, twice weekly gradually building up the dose to maintain an immune response.⁣
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I’ll need top ups of IV infusions either monthly or over a week every few months. Need to try and work out the practicalities of doing this. ⁣
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Today I’m quite emotional and feeling really homesick. I want to get home to my family and kids for a big cuddle. I want to get all Christmassy and dress the house, get the tree up and enjoy prepping over the next few weeks. ⁣

I will commence subcut mistletoe injections at home in about a weeks time with ongoing follow up from Dr Geider in Aberdeen.
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Let the packing for home commence and bring on Christmas, I’ve got the mistletoe in the fridge!!

08/12/2020

MISTLETOE DAY 5/6: we had a lovely weekend off recovering from treatment and even managed a late lunch out on Sunday - Aberdeen isn’t in lockdown! ⁣
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Yesterday we were back at it for intensive fever treatment number 2. The IV dose went up to 120mg and another 2mg subcut dose, to be cautious. I couldn’t face anything stronger than the 1st treatment dose.⁣
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My previous IV injection site has reacted and initially we thought it was irritation from the venflon, but turns out the IV mistletoe probably leaked a little and last time I most likely got a double subcut dose! Hence such a profound reaction.⁣
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Yesterday I felt good, I walked the furthest along the Deeside way since we arrived. All day we waited for the fever and then 12hrs after the infusion it kicked in. I had a disturbed night, just couldn’t get comfy. The bone, muscle pains and headache are horrible, thank goodness for morphine! ⁣
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I’ve got Belladona to try for the fever symptoms, so going to give that a whirl today. ⁣
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I’ve slept most of today so far and woken up to lots of kind messages so thought I’d do a little update. Thank you for your love and care. ⁣
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So I’ve had another good response, slightly more tolerable than last time and it will be over soon around 10pm tonight. There’s less fear the 2nd time which always helps. ⁣
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Come on Immune System, do your stuff!! Aren’t our bodies amazing.

05/12/2020

MISTLETOE DAY 3/4: well that was an intense 36hrs. I opted for the intensive treatment option and they weren’t joking! ⁣
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I had infusion and subcut injection at midday, the fever started at tea time and hit 38.5 around midnight. My temp stayed above 38 for the next 24hrs. I had all the symptoms bone/muscle pain, rigours, fever, headache and stayed in bed for 36hrs. It was really challenging and blooming awful if I’m honest. ⁣
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The subcut injection has created a large local reaction which is firm, red and tender about the size of an apricot (why do us medics measure everything as fruit!?)⁣
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I find it really difficult to stay positive when I feel so ill. I go to some dark places psychologically when I have fever and pain. ⁣
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My doctor is pleased with my response to treatment. This definitely isn’t a placebo treatment and clearly provokes the immune system. Struggling to think about repeating it another 2 times next week.....⁣
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Today is all about rest and recovery. This mornings shower was amazing and now it’s Netflix and the sofa!⁣

04/12/2020

MISTLETOE DAY 3/4: well that was an intense 36hrs. I opted for the intensive treatment option and they weren’t joking! ⁣
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I had infusion and subcut injection at midday, the fever started at tea time and hit 38.5 around midnight. My temp stayed above 38 for the next 24hrs. I had all the symptoms bone/muscle pain, rigours, fever, headache and stayed in bed for 36hrs. It was really challenging and blooming awful if I’m honest. ⁣
⁣
The subcut injection has created a large local reaction which is firm, red and tender about the size of an apricot (why do us medics measure everything as fruit!?)⁣
⁣
I find it really difficult to stay positive when I feel so ill. I go to some dark places psychologically when I have fever and pain. ⁣
⁣
My doctor is pleased with my response to treatment. This definitely isn’t a placebo treatment and clearly provokes the immune system. Struggling to think about repeating it another 2 times next week.....⁣
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Today is all about rest and recovery. This mornings shower was amazing and now it’s Netflix and the sofa!⁣

04/12/2020

MISTLETOE DAY2: Happy to report that I had no side effects from yesterday’s infusion. ⁣
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We had a lovely walk along the river this morning and infusion 2 with double yesterday’s dose is flowing in as I type. ⁣
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There is no expectation of any reaction or side effects today. Tomorrow is the main event. Another dose doubling and the addition of subcut mistletoe to trigger my immune system. This should then produce a fever reaction for 24hrs. ⁣
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Wearing my Rare hoodie today to celebrate my cancer besties return home after 4 weeks in hospital. ⁣
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Thank you again to everyone who donated and made this possible.

18/11/2020

MEET A : This is Joanna who has a very rare form of lung cancer. November is lung cancer awareness month.⁣
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Since being diagnosed with stage 4 ALK positive Lung Cancer in July 2019, I've been passionate about raising awareness and ending the stigma surrounding lung cancer, as well as highlighting these rare genetic mutations that are on the rise in young women.⁣
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ALK positive accounts for 7% of worldwide Lung Cancer cases and alongside 28% of all LC diagnosis, is not smoking related.⁣
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Having a rare cancer is challenging. Not only when explaining to cancer novices, but also medical professionals. There are only 2 ALK experts in the UK and we're far behind our American counterparts in terms of research and knowledge.⁣
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I'm hoping by raising awareness and fundraising on behalf of Lung Cancer charities, we can get Lung Cancer talked about with the respect it deserves and ultimately, help save lives 🤍

10/11/2020

NHS HELP US HELP YOU CAMPAIGN ⁣
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Take home message: Any abdominal symptom that persists for more than 3 weeks needs investigating. ⁣
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Listen to your body, observe any changes, take notice. Connect with yourself, care about you. It’s not selfish. Don’t be too busy, don’t dismiss that niggling ache, loose stool, blood, bloating, backache, indigestion, belching etc.⁣
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Cancer is sneaky, cancer hides, rare cancers don’t follow the text books! ⁣
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I didn’t listen when my body tried to tell me something was wrong. I was too busy. I have stage 4 cancer which is life limiting - Dr G. ⁣
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Don’t have regrets, listen to your gut! ⁣
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09/11/2020

LUNG CANCER AWARENESS MONTH - lung cancer as a whole is unfortunately common with 46k people a year being diagnosed. However, this common cancer has some very rare subtypes which are often overlooked. ⁣
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There are 2 main types of lung cancer:⁣
1. 85% Non small cell lung cancers (NSCLC)⁣
2. 15% Small cell lung cancers (SCLC)⁣
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1. Within the NSCLC there are rare specific cell mutations such as:⁣
-EGFR producing too much EGFR protein, common in adenocarcinomas, non smokers and people of Asian origin. ⁣
-ALK positive involving tyrosine kinase receptors, this tends to occur in younger, non smokers⁣
-ROS1-positive effecting the ROS1 gene and involve tyrosine kinase proteins. Again often in non smokers. ⁣
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In addition to NSCLC and SCLC cancers, other rare cancers can also develop in the lung. Such as mesothelioma associated with asbestos exposure, sarcoma, carcinoid tumours, neuroendocrine cancers and Pancoast tumours. ⁣
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Having a rare form of a common cancer can be just as isolating as having a rare primary cancer. We need to move away from thinking about cancer as a disease of the lungs, bowel, breast etc and start thinking about it at a cell mutation level and treat it with precision and a personalised approach. By attacking the genetic mutation, rather than the bit of the body it effects. ⁣
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I (Dr G) have appendix cancer but my mutation is commonly found in NSCLC of the adenocarcinoma type! Mind blowing, however I can’t access the drugs as they’re only licensed for lung cancer! Precision oncology is coming, but feels a long way off for stage 4 people at present. ⁣
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I’ve had the pleasure of connecting with the fabulous Joanna who has stage 4 ALK+ lung cancer and is such an inspiration. Joanna is striving to raise awareness of all lung cancers and to destigmatise its association with smoking. As Joanne says it’s irrelevant whether people smoke or not, no one should be blamed or stigmatised for developing cancer.

29/10/2020

BEING THE FRIEND OR RELATIVE: Lovely Nic cofounder of is day 3 post op in ITU, in London having undergone major, life saving surgery. She’s doing ok but has a long recovery ahead of her. ⁣
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For the 1st time I find myself as the friend and not the patient in the bed. It’s been really difficult being on the other side. Waiting for news is excruciating, the worry and fear you feel for someone you love and care about is horrendous. ⁣
I’m just Nic’s friend, I can’t imagine how it must be for her husband, boys and family. ⁣
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I’ve put my friends and family through this 3 times. I realise worrying about Nic, is how all my family and friends have felt each time I ended up on the operating table as the patient. Such feelings of helplessness, wanting to make it all better and take away the pain and distress for the person going through the ordeal. ⁣
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Nic like so many other people is having to contend with new Covid rules, preventing and restricting visitors. I would really struggle without visitors, my husband spent all day with me most days after my operations. Nic is coping admirably but ultimately she has no other choice. Thank goodness for FaceTime! Her family are staying close by in a hotel, so near but so far! ⁣
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Cancer creates ripples around each person, the diagnosis and living with cancer effects all those who love and care for that individual. Worrying about Nic this week has made me realise cancer is a team sport and how grateful I am for the massive teams supporting me and Nic. ⁣
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Lots of love G ❤️x⁣

Rare Radicals

28/02/2021

28/01/2021

10/12/2020

08/12/2020

05/12/2020

04/12/2020

04/12/2020

18/11/2020

10/11/2020

09/11/2020

29/10/2020

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