Robs Chemo Fund

23/04/2023

Happy cancerversary day to me!!

I've been alive 2 years since they told me I had leukaemia and was weeks away from dying.

2 years doesn't sound a lot, but I've been through hell and back and nearly died a couple of times along the way.

4 months in hospital, infections that had me being fed through a tube into my veins for 6 weeks. Encephalitis which gave me brain damage and left the bottom half of my body on the edge of being useless. Neuropathy in my hands and feet. GVHD in my mouth and eyes.

And when I got to go home, another 6 months of weekly blood transfusions. Handfuls of pills. Eyes that are hyper-sensitive to light. But I was in remission so I didn't care. Small price to pay to still be alive and cancer free.

Or so I thought... Christmas came and with it came 2 swollen and painful testicles along with the news my cancer was back and no longer treatable. It was Terminal. (Thanks Santa) and I was told I had weeks to months left to live.

With that news, both testicles and got the chop but that wasn't the only place the cancer was manifesting. I had an egg growing on my cheek by my eye that got bigger every week.

I had a funeral. I wrote a will. I picked a burial plot. My puppy got hit by a car and died in front of me. I got a new puppy. I met with St. Peters Hospice. I discussed end of life care. I signed a DNR form. (Who the f**k expects to do this at 33?!)

I had a month of chemo that didn't work, the lump did shrink but at the cost of making my hands numb and tingly. Then I found out my next chemo wouldn't be funded by the NHS and that I desperately needed it to live long enough for an American one to be approved and delivered so I turned to social media and pretty much raised 90% of what I needed for my first round in just 4 days. I was not expecting such a powerful response in such a short time!

And then I reached April and my 2 year anniversary of my diagnosis. I had wanted to reach April to see my neices birthday and I made it. I get to give her the presents I've been stockpiling for her... she's my god daughter and its the last birthday ill ever see so I guess I went a little over the top 🤷‍♂️

I've also written out cards for my parents to give her until she is 18 - and popped a few Polaroids in them for her so she can remember Mr.

I should have died in May 2021, I didn't. I'm not mad that I'm dying now, I got 2 extra years of life (and then some) who else gets that kind of opportunity... to cheat death for 2 years!! Its given me time to make memories and create the narrative I want to be remembered for.

It's given me two years to help people from around the world navigate leukaemia, help answer questions about treatments and give advice on how to cope or how to help family members and friends going through treatment. And that's what I want to be remembered for, trying to turn a negative experience in to something positive. For helping others and trying to make the journeys through leukaemia slightly less daunting. I want to be remembered as a good, caring person who didn't let cancer beat him and who fought it with everything at his disposal.

I KNOW for a fact that I've made a difference to a lot of people and I know I have given reassurance and hope to many more. I've made some wonderful friends (some I've been lucky to meet in person and others ill sadly never get to meet) who have helped me on my journey during what I think back on as my darkest moments.

And I've reconnected with other old friends that I never expected would step up for me in the way they did. The support I've received really has been heartwarming and I will always cherish my rekindled friendship with them.

Most people who follow me will know who they are but I just wanted to share them a below because they are worth mentioning

Rachel Suddick Lisa Aimy Riley Zoë Challinor Hayley Clifford Emma Beresford Ross Happell Jonathan Crowther Kris Spooner Craig Jarvis

There are obviously more, but this lot are the cream of the crop. Thankyou

My new goal is to reach September to meet my new nephew when he arrives - which should give me time to see some more castles and make some more memories. Hopefully it's a realistic target 🤞thank you to everyone else who has followed my journey, sent me messages of support, donated to my gofundme pages and been there for me! I appreciate every little thing!!

And Thank-you for helping me continue this fight by enabling me to pay for my current treatment!

Hi, my name is Rob. You may have been following me since my first diagnosis of AML or more recently… Robert Hale needs your support for Robs Chemo Fundraiser

18/04/2023

Day +121

Just a small insight into the true cost of this treatment and a reminder to all of how valuable our NHS service is.

£15,590 for 1 week of chemo, how many of us could afford to pay that if it wasn't usually free?

I see a lot of Americans and other foreigners who have gone through cancer and even with health insurance they are left out of pocket. Without health insurance they are left to die, or they are sent to prison for failure to pay.

In the UK we often take health care for granted, and although my situation is complicated and unusual, everyone else would normally be given this free of charge regardless of whether they are employed or not.

I know my initial treatment would have run in to the millions had I lived elsewhere!

Again, thank you for donating - although we didn't hit enough to pay the first round in full, it gave us enough of a start to be able pay immediately without hesitation. Without you guys it simply wouldn't have been feasible.

I start chemo tomorrow so expect lots of photos and updates - can't wait to see some familiar faces from my last treatment. They always stop by and say hello when I come in as an outpatient

**kcancer

17/04/2023

Hi, my name is Rob. You may have been following me since my first diagnosis of AML or more recently… Robert Hale needs your support for Robs Chemo Fundraiser

17/04/2023

https://www.gofundme.com/f/Robs-chemo-fundraiser

Hi, my name is Rob. You may have been following me since my first diagnosis of AML or more recently… Robert Hale needs your support for Robs Chemo Fundraiser

17/04/2023

Today I met with my consultant to discuss the details around the Nelarabine chemo and to find out more about the true cost.

Each cycle of Nelarabine is carried out over 21 days. The first 5 days are spent as an inpatient where I would receive IV chemo on days 1, 3 and 5 and the following 2 weeks are spent having checkups on my blood counts as an outpatient.

The cost of the actual Chemotherapy along with the 5 day stay as a patient currently sits at around £10,000 and they have said ideally they would give me between 3 and 6 cycles.

They have applied for the other option, the American made chemo, on compassionate grounds but it cam take upwards of 4 to 6 weeks to arrive and the consultant fears that at the rate I am declining, it may arrive too late.

The first course of Nelarabine will hopefully slow down the disease long enough for the other chemo to arrive - and once I finish this other chemo they hope to use the nelarabine to slow it down further.

I have told them to go ahead and get this set up, and could be starting as early as the end of this week!

I will push on as far as my funds will take me but there will come a point where the cost far exceeds the benefits and I do not wish to bleed my parents dry in the hopes of a few more days on earth. When I make that decision, I hope you all do not see it as giving up. I never gave up.