My Sarcoma

By Alfie Keogh

Donate to Alfie

My Sarcoma

By Alfie Keogh

Alfie & Olivia-Rose

Me and my daughter, Olivia-Rose

My name is Alfie and I am 19 years old. I live in Blackpool with my mother, Estelle and I am the youngest of four.

In August 2019 I was diagnosed with Spindle Cell Synovial Sarcoma Cancer located in my right calf muscle.

My cancer is an incredibly rare form of bone and tissue cancer and has now spread throughout my body. The doctors have told me that I have less than three months to live.

I have a baby daughter, Olivia-Rose, she was born on 17th  December 2019.

This is my cancer journey….

Estelle & Alfie

” We’ll always be in each others arms for all eternity…”

Summer 2011

During the summer of 2011, when I was 10 years old, I went camping with my family. It was during this holiday that I started to feel a really bad pain in my right calf muscle.

The Funeral of Alfie Keogh – 21st August 2020

Tuesday – 23 August 2011

My mum took me to the doctors. The doctor told me it was growing pains at first and then even said it was an early varicose vein forming.

I was screaming in pain every night and struggled going to school.

My mum insisted on a referral to our local hospital where I did not get seen until Wednesday 4th April 2012.

They scanned me and told us that there was a tiny lump and referred me to Alder Hey Children’s Hospital so that they could rule out any sinister pathology.

August 2012

Eventually was seen at Alder Hey in August 2012. They told us that they had found a lesion which was the size of a pin prick, they called it a calcification.  They told me that it did not describe the level of pain I was in.  They tried a nerve block to exclude a lesion pressing on the nerve which did not help.

We tried all kinds of pain relief including oramorph, lidocaine patches, tramadol, amitriptyline etc, but nothing helped.

Sometimes I could not walk or go up and down the stairs which happened all throughout my childhood. School attendance went down to under 50% and I could not play football or carry on with my golf career of which I excelled in.

At no time did any doctor mention to me or have me checked for cancer.  Not even a blood test.

February 2014

Finally in February 2014 they offered me surgery to remove the tiny lump but told me it could make it worse and that they could not guarantee I would be able to walk without being aided, so we decided to leave it and see if it fades.

We later got a second opinion but they told us the same as Alder Hey.

Thursday 20th August 2015 

I began taking gabapentin which started to help a little.

Carried on with my life the best I could.

Friday 7th October 2016

Doctors told me it could be arteriovenous malformation.

By now my leg had developed slowly into a large lump.

Monday 15th July 2019

I woke up and the lump on my leg was enormous.

I got an urgent GP appointment, with a lump now measuring 12 x 7 cm.

The doctor sent for an urgent referral to my local hospital.

“May the tears you cried in 2019 water the seeds in 2020…”

My story in the newspapers

Saturday 20th July 2019

Seen by doctors at Blackpool Victoria Hospital who sent me for an urgent MRI scan.

Friday 16th August 2019

Went into Blackpool Victoria Hospital with severe back pain, chest infection and weight loss.

My MRI scan showed suspected sarcoma, deep within subcutaneous tissue, located extra muscularly with minor displacement of adjacent gastrocnemius and soleus muscle.

Urgently admitted into award.

Saturday 17th August 2019

CT abdomen, thorax and pelvis – bilateral pulmonary nodes concerning for metastases.

So, I have lung and spine cancer all from this little lump in my leg which I have struggled with for 9 years.

Why was this not spotted before?

Monday 19th August 2019

Went to see Nina Deacon a sarcoma specialist at Chorley Hospital and given 3 months to live.

Metastatic spine disease in spinous process of T12.

Scans and core biopsy revealed high-grade spindle cell carcinoma pulmonary metastases and metastatic disease in spinous process of T12.

Well, that’s it, I am terminal and have 3 months to live.

“I want to stay here for as long as I can to look after you mum…”

Saturday 24th August 2019

Came home from hospital. Hallelujah!

Friday 6th September 2019

Seen at The Christies, Manchester.

Planning on a 12-month course of treatments of chemo (ifosfamide & doxorubicin).

Wednesday 2nd October 2019

A Hickman line was put in for my treatment.

Wow they put the wrong one in and it was very painful.

They put a single lumen in when it should have been a double.

1st set of chemo started 10pm with doxorubicin and ifosfamide – pure hell.

It was like living in hell on earth, I was so weak I couldn’t get up, I was constantly sick and coudn’t sleep.

Pain relief driver in. Still in agony.

They tried all anti-sickness drugs but nothing working.  Tried for the trials but did not have the correct blood groups for any of them.

All my hair fell out straight away after my 1st set of chemo.

Monday 7th September 2019

Started to feel better.  No sickness, was sent home. 

Went through the same procedure 2 more times.  Did not get any easier.

I’m  still positive and determined. 

My fourth set was deferred due to me having to go into the BVH with neutropenic sepsis and bilateral pneumothorax and positive A with Influenza.

Friday 22nd November 2019

Went to The Christies for update and they told me that the main sarcoma in my right calf had shrank.

OMG amazing news, so, so happy.

January 2020

I was told that my cancer had spread to both my shoulders and all in my pelvis.

Devasted. 

Dozorubicin & ifosomide now stopped as the cancer is too aggresive. 

Friday 24th January 2020

New chemo tried (Trabectadin), done through the day unit and sent home.

Lasted for 24 hours and nurses come to take it out.  Very sick and weak.

I had 2 sets of this but didn’t help.  Various sets of Radio have been given throughout all this which really helps with the pain.

The cancer is still spreading.

Friday 20th March 2020

I have been told that I was going to die within a few months as they had to stop chemo as my cancer is too aggressive and because of the coronavirus.

They tell me if they give me chemo again, I will definitely contract the coronavirus.

I am now made comfortable at home as much as possible with morphine drugs etc.  Some days and nights I am in horrific agonising pain and some days I am good.

I’m still positive and staying as strong as I can.  I am not giving up on this.  I am now under the Hospice/Trinity at home care.

Since the beginning of my diagnosis I have been taking CBD oils and THC oil which I firmly believe have kept me going and make me eat a lot.

I also believe that this is why my sarcoma in my leg had shrank.

I do not believe it has been the chemo, in fact I believe the chemo has made my cancer spread.

The doctors are amazed at me lasting as long as I have.  I have not told the doctors I have been on the oil.