Sunday, 31 July 2016

Ethnic Minority Cancer Awareness Month (JULY 2016)

 You might not of heard about Ethnic Minority Cancer Awareness Month but it desperately needs by all of us to raise awareness about it more often, whenever we can.

 I've been following Cancer Equality on twitter now for a couple of years and I'm very interested in the work they do within the cancer community to improve the health of people within Britain who are Black and Minority Ethnic (BAME).

 Cancer Equality says that sometimes people in the BAME community can "experience higher incidence of certain cancers and poorer outcomes."  

Statistics above from Cancer Equality's 2012 Press Release.


 When we can it should be the responsibility of all, to help improve the survival rates for people in the BAME community and all cancers. I know how hard it can be with a rare cancer when raising awareness. Rarer cancers get lost as not many people will know someone with a rare cancer compared to common ones where they'll have bigger numbers of people supporting them and helping to raise awareness of that cancer. It's exactly the same for those in the BAME community, we should be trying to help others regardless if they have a different cancer etc. I can't expect people to raise awareness of the cancer I had if I don't help raise awareness of their cancers.

  A good example of a charity who support and also try to save the lives of people who are (BAME) is the African Caribbean Leukaemia Trust also known as (ACLT).  I had the honour of volunteering for them a couple of years ago and they recently celebrated their 20th Birthday. 
The charity was set up when Co Founder Beverley De-Gale's son,  Daniel  desperately needed to receive healthy donated stem cells from a donor because his cancer had sadly relapsed. Daniel had been diagnosed with Acute Lymphoblastic Leukaemia (ALL) when he was just 6 years of age. 

"ACLT is a 30+ times award winning leading British blood cancer charity and was founded in 1996."

 I remember when ACLT first appeared on London Tonight to raise awareness for Daniel and that's the first time that I had heard about the charity and being inspired by Co-Founders Beverley De-Gale and her partner Orin Lewis. Their continuous determination to raise awareness of why they needed more people in the BAME community to donate stem cells.

 Unlike blood where you can match to most people, stem cells are much harder because it relates to your ethnicity in finding the best match. They gave people hope when they never thought they had a chance of ever finding a match. 

 ACLT says: " Daniel’s younger sister Dominique was tested as a possible match, brothers and sisters of the same parents have a 1 in 4 chance of being a perfect match, but sadly Dominique was not a match for her brother. Family members were also tested but again no match was found.
It was at this point that Doctors at Great Ormond Street Hospital informed the family that they would search the World bone marrow (stem cell) register of unrelated donors for Daniel, but in the same breath they said the chances of finding a matched donor for Daniel would be extremely remote simply because of a lack of  Black and Mixed Race  people signing up to the stem cell  registers. Professor Paul Veys said that Daniel had a 1 in 250,000 chance of finding a donor because of his ethnicity.  If  he  was White  British his chances of finding a donor would have been at best 1 in 4  or 5, simply because hundreds of thousands of  White Northern Europeans  had signed up over the years. This devastating news was the tipping point for Daniel’s parents. They decided very quickly that Daniel’s future was going to be decided by the black and mixed race communities registering in their tens of thousands. A couple of months later the ACLT charity was founded and an International media campaign was commenced.
Daniel suffered 2 relapses before, in 1999, a born again Christian from Detroit, Michigan was found to be Daniel’s lifesaving donor. Doreene Carney listened to a presentation at her place of work, the US Postal Service and immediately decided to join the US register, BINGO! On the 16th June 1999 Daniel received 45 year old Doreene’s donated stem cells and became the first black individual in the UK to receive a lifesaving stem cell transplant from an unrelated donor.
Sadly on October 8th 2008, Daniel sadly passed away from multiple organ failure due to complications with his health."

 When volunteering  for ACLT  I saw  their drive,  passion,  determination and selflessness  to give  someone else the  chance  of finding a donor.  I 've read about the lives they have saved because of their hard work in the BAME Community to get  people to sign up to the (bone marrow), blood and organ donor  registers.

My Black Skin

Source: ACLT Charity

The Human Story by George The Poet

"Visit the NHS Blood & Transplant website for further details of our joint campaigns - Please CLICK HERE
We believe there should be an unrelated donor waiting for everyone who is in desperate need of a lifesaving transplant – if we all play our part, together we can help put an end to the many lives being needlessly lost as a result of a matched donor not being found at the time someone needs help."

Beverley and I.

To learn more about ACLT please visit:

Above: takes your saliva to test and see if you're a match to be a donor or could be in the future.

Source: Anthony Nolan

To find out more about the great work that Cancer Equality does, please visit:



Sunday, 10 July 2016

Rare Laid Bare (Surviving and Striving)

      (Sarcoma Survival Story)  

🏥 Art from Cancer Hospital 🏥

SARCOMA AWARENESS WEEK is from the 4th-10th July 2016 and I wanted to take part by showing a diary extract below I found and wrote at the time when first getting a benign tumour at 18 and also a timeline to show how many health professionals I had to see before being diagnosed with a type of Sarcoma when I was only 21.

My Sarcoma journey is slightly different because not only was my cancer Osteosarcoma it turned into a Primary Bone Cancer which means the cancer started in the bones first.  It was also rare because it grew from a benign tumour and it was in my spine (Up to L4) and in my sacrum until it transformed into cancer after just three years. My Orthopaedic Consultant said he had only seen one other patient in his working career where a benign tumour had turned cancerous. 

"Pain pain pain. why me, doesn't enter my head but why now? I just want to reschedule the pain to a time that's convenient to me. If only life was that simple. You see I don't hate my pain and I'm not in love with it either but we have a special bond. The pain is constant, twenty-four-seven, seven days a week, no let up even my sleep is scared of my pain.

 My story of how I met my pain had started many years ago. We were introduced by my leg who on the night of the 4th April 2005 had begun to hurt and I begun to limp. By the end of the week it was still there and unknown to me I had a drop foot but I soldiered on. Every tick of the clock the ache got stronger and stronger. It was draining my energy this thing that was inside of me and taking my essence, my life. I knew something was wrong but not that. The pain at night became unbearable, it was torture, like a dripping tap hitting a sink.that needed to be fixed but instead it was me that needed to be fixed. So I took my pain to find help and support but in reality what I found was a bit different.

 The college nurse said that if my pain persisted to go to my GP as she did not see anything to be concerned about. As the words left her lips I knew that this pain was not going to get better. This is just the second week and I find myself in pain limping into the local walk-in-clinic to see another nurse. In the waiting room I was nervous that they might say that something is wrong, it felt like hours before I was called. I wondered what the other people were here for or whether they were in as much pain as I was. If only we could tell just by looking at someone if their health is in danger and warn them. Pain is also a helper and it's telling you there is something wrong, so go and get checked out! I'm still in the waiting room and more new patients come through the doors.

My name is called and I am now having difficulties getting up from a chair!  I limp slowly after the nurse to her room. She asked me a series of questions and then she examined me. The examination consisted of me kneeling on a chair, (really I was) The nurse checked the back of my legs and reassured me that I do not have a DVT, that's' a relief.....NOT!   I know my own body. This brings me onto Pain's sibling called "Referred Pain" which means that the pain you feel in your leg comes from somewhere else! (Is this for real?) The nurse gave me some tablets for the pain and sent me on my limping way but unfortunately for me the tablets did not do a thing and this intense pain was very scary. Walking with a limp is exhausting, pain is exhausting and telling a professional is exhausting. The tiredness is so overwhelming you can not sleep, you have to wake up earlier to go to college because you are so slow because of the limping. I couldn't run anymore and I began to get cramp in my legs a lot so I bought banana's (thinking I was low in potassium) but they did not work, nor did the heat rub I bought and it stank.

 Being young in the cancer world is sometimes fraught with danger with a delayed diagnoses and unfortunately it was the same for me! Crossing the road was so dangerous for me and when a friend thought I had broken my foot it was indeed time to go back to the professionals. The same nurse I saw last week.

Now into my third week and on my return to the Walk-in-clinic yet again. I was no longer concentrating at college and the nurse advised to go else where ...the GP.  The GP said to come back in two weeks if it is persisting. The same day I ended up in our local A & E and the reason was I had sneezed and my back jared and I was now dragging my leg and that is why I ended up in A & E.
They gave me tablets and sent me home. The next day I begun to get pins and needles in my legs and things did not feel the same so we called an ambulance. They were not going to take me because in their opinion I was not letting the tablets from yesterday's A & E trip work. My Mum insisted. I forgot to mention I could hardly walk now. This A & E trip was no better, no tests of any kind was performed and the doctor was rude when he grabbed my stomach and said you need to tighten this up and do some swimming.  My brother's carried me up the stairs and I stayed on the floor until I saw a physio who we had to pay for. She knew as soon as she saw me that something was seriously wrong and I was sent to my GP that day as she had called ahead.

At this point being misdiagnosed with M.S. was a relief as it meant I was to be rushed into the hospital that day. I was found to have a mass in my sacrum and spinal column (Cauda equina syndrome) and could have been paralysed.

"Cauda equina syndrome requires emergency hospital admission and emergency surgery, because the longer it goes untreated, the greater the chance it will lead to permanent paralysis and incontinence." - NHS Choices

For me it was life changing, mentally and physically."

This then leads us onto the actual timeline below showing what had lead up to my benign tumour and then my bone cancer in my sacrum.


12/04/05 - Saw College Nurse.

13/04/05 - Saw Nurse in Minor Injuries Centre.

21/04/05 - Saw Nurse again at Minor Injuries Centre.

25/04/05 - Saw my local GP for the first time.

25/05/05 - Went to A+E just before 9pm, I fell on to concrete and I heard a snapping sound.

26/05/05 - Called Ambulance and went to A+E.

31/05/05 - Saw physio (I had to pay for) who then emailed/rang my GP straight away about she discovered.

01/06/05 - Saw another GP at my local Doctors and got a second opinion - Referred to a specialist Neurologist.

08/06/05 - Received appointment letter from local Hospital which was too late, as it arrived on the day of the actual appointment and was sent by 2nd class. 

15/06/05 - Saw Consultant Neurologist in Clinic at 9:30am 
- About an hour later got phone call from registrar from another Hospital to come into the Neurology Ward
 - By the evening had a MRI, Cat Scan, Chest scan etc.

17/06/05 - In the morning, I was told results and that I had a tumour in my spine
- I had an angiogram later that day.

(Ultrasound machine - having an ultrasound in the past) 

20/06/05 - Had Ultrasound - found out I had Cyst on my right ovary too.

21/06/05 - Registrar told me about Operation.

22/06/05 - Day I had Surgery
- Partial removal of tumour 
- Biopsy taken
- Bone Graft (taken from my hip)
- Aspiration of Right Ovarian Cyst.

07/07/2005 - I was in hospital when the 7/7 bombing occurred.

11/07/05 - Discharged from Hospital.

27/07/05 - Letter about Ankle Foot Support 
- Appointment 11th August 2005 - When I went to Physio, I had realised they ordered the same plastic brace I already had and didn't need.

29/07/05 - Appointment with GP for more medication.

02/08/05 - Physio.

04/08/05 - Physio.

08/08/05 - Physio. 

10/08/05 - Physio.

12/08/05 - Physio.

11/08/05 - Ankle Support Appointment.

07/09/05 - Gave Thank you card to Neurologist who discovered tumour. 

20/09/05 - Follow-up appointment with Hospital  Neurology Consultant.  All fine. 

28/09/05 - Went to A+E because my pain was extreme and it was affecting the way I walked. (The Benign Tumour had grown back but it had doubled). 

14/10/05 - Neurology Consultant rang and said I needed surgery in another Hospital, because he did not have the expertise.   

21/10/05 - Ended up in A+E with pain and stayed in hospital until 4 November.

04/11/05 - Went to a new Hospital.

07/11/05 - Had MRI.

15/11/05 - Had CT in yet another new Hospital not far from one I was staying in.

18/11/05 - Had Embolisation 9:30am - 3pm.  (This cuts the blood supply to tumour)

21/11/05 - Had Major Operation today 
- Full resection (all the tumour was hopefully out).

11/01/06 - Hospital Appointment to see Consultant.

08/02/06 - Saw Registrar and Had X-ray.

March 2007 - Appointment with Hospital Doctor 
- My increased pain was noted.

23/08/07 - Appointment with Consultant
- Told him my back was hurting and tender to touch 
- He said he would do something BUT DIDN'T 
- Was meant to show me x-rays but didn't 
- I told him about my increased tiredness and weight loss.

20/09/07 - Doctor said I should have a scan in 6 months time (aprox Feb 2008).

- Weight loss, had told everyone who would listen and the only one who thought it didn't sound good was the Pain Management Nurse.

03/01/08 - Appointment (Told no progression of tumour).

19/01/08 - Letter from my Consultant to another Doctor said "She certainly does not have any progression of disease from a Tumour point of view."

07/02/08 - Appointment (Had CT Scan).

12/02/08 - Report from scan from 07/02/08 showed that there was deterioration in the Sacrum and Radiologist said in my notes that the metal artefacts were obscuring vision.
(I had metal holding up my spine at time that my Doctors put in when I had surgery in 2005.)

THIS WAS A RED LIGHT PRIORITY REPORT (12/02/08) - Don't know why there wasn't any blood tests taken or scans??

05/03/08 - Saw Consultant and he said "I looked fantastic and x-rays were satisfactory and we know that there is no significant Recurrence of her disease and he is happy for me to go on crutches at the time. " 
16/04/08 - Appointment with Consultant, he weighed up whether I should have biopsy or not. 

06/05/08 - Biopsy 1 - not enough sample taken. So had to have it done again.

14/05/08 - Biopsy results had not come back. They did not tell us, so a wasted trip to hospital and I was so exhausted at the time.

23/05/08 - Biopsy 2 - Three containers this time.

30/05/08 - MDT Meeting with my Orthopaedic Consultant and Oncologists from another hospital.

11/06/08 - They called to say that the biopsy had not come back yet, so had to cancel appointment.

17/06/08 - My notes said my biopsy had been seen by 3 Professors and a Doctor.
- Came back as 'Telangiectatic Osteosarcoma' and also written down was 'Giant Cell Rich High Grade Osteosarcoma' on my notes at the time.

19/06/08 - Appointment letter arrived today, just 2 minutes after the hospital transport arrived but I did not know so I could not go.  

20/06/08 - Told by Consultant I had 'Osteosarcoma' in my Sacrum.  In December 2008 I was also told that I had it in my spine as well!


On the Cancer Ward in 2008 while wearing my wig below when we had look-a-likes visit the ward for the day. 

Waiting for Radiotherapy in 2009 below:

You know your own body. Be persistent and stick with your gut feeling if something doesn't feel right. 





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