My Relapse Story: ICE Cycle 2 Ian Doherty
Just a little recap on the story to date
Diagnosed Hodgkins Lymphoma Stage 4B 14th Feb 2014
ABVD Chemotherapy March 2014 to August 2014
Radiotherapy 40Gml over 4 weeks November 2014 to December 2014
Long gaps between test but generally non conclusive including 3 biopsies to throat and neck.
Remission Dec 2016
Relapse April 2017
R-ICE chemotherapy 3 cycles Commenced: 10th April 2017 followed by a Stem Cell harvest, followed by BEAM Chemotherapy followed by Stem Cell Transplant.
Ice Chemo is designed to kill all cancer cells in the blood, plus white cells, stem cells and production of stem cells. I will go under 3 cycles, each cycle takes 3 days in hospital followed by 18 days of no Chemo then cycle 2 18 days of no Chemo then cycle 3
Cycle 2 2nd May 2017
Admitted to hospital the day before chemo 1st May 2017 for blood test urine test etc.
Day 1. Got good to commence Monday 2nd May 2017. Had a PICC line surgically placed into my left arm (this is basically a long tube inserted into a vein that ends up close to your heart.) a discomforting procedure that takes about 40 minutes from start to finish.
Then back to the room to commence. Firstly I got an anti nausea injection to cover 3 days. Then two small bags of steroids followed by a 3 hour infusion of Etoposide (the E in ICE) and that was it for day one. All was good, drank about 3 ltrs of water and slept well that night. I was aware what day 2 would bring. But the doctor was concerned about temperament issues and called in a psychologist lovely lady but I have always seemed too strong for psychologist. There is a footnote about temper.. However after an open chat she felt I may have a form of PTSD triggered off by the issues with been backstabbed with my business, she recommended confronting this which I have done, when I explained the situation and their version of events she basically said continue with your plans now but people like that do not deserve to be anywhere near an honest hard worker like you, I was taken back by this as I hardly knew this person. Anyway no negative during Chemo. She has prescribed drugs to take the edge off and assist is sleep issues.
Day 2 & Day 3 3rd € 4th May 17 Commenced with a 2 hour infusion of Etoposide (the E in ICE) followed by 1 hour of Carboplatin (the C in Ice).Due to the sever level of Chemo the medical team had to tackle protecting my kidneys and my bladder (known side effect is sever bladder damage) So I had 2 hours of Mensa followed by 24 hours of Ifosfamide (the I in Ice) and 24 hours of Mensa at the same time. To say I did not sleep that night means I stayed awake. So the 24 hours commenced at about 3pm Tuesday and ended at 3:30pm Wed – followed immediately by 2 hours of Etoposide. I then has infusions every 3 hours for 20 minutes a total of 9 hours.
So Friday 5th May my doctors came to see me. I’m allowed home which is a great sign to commence with. All is going well, I am exceeding expectations and doctors are happy. I have am upcoming PET Scan thats going to decide a lot in 10 days. This scan will confirm the remaining treatment and I should get the results fast. My blood sugar levels have been iffy with the steroids used here but they are also manageable
PICC Line was removed as risk of infection too high. Lots of warning about blood sugar
Appointment for PET Scan set 18th May 2017. Followed by meeting on 23rd May in St James team in Dublin (lead team for Stem Cell)
Appointment set for final ICE Cycle 3 to commence 24th May.
Appointment set for Stem Cell harvest 6th of June 2017
ALL Dates subject to change with PET scan
Medical Staff: I have said very little to date about the staff that care for me in the Bon’s. It is difficult to describe how wonderful these woman & men are. The senior doctors, the student doctors, nurses, student nurses from UCC, the careers, the cleaners… everyone of them still manage to smile, be friendly, boast your moral but always there for you always professional. They are indeed gods Angels on this earth. I know each of us have jobs to do but these medical staff face living nightmares everyday and manage to do their jobs fantastically.
A lot of this sounds like and basically is identical to the first cycle, the medical staff are precise to the point of perfection, they have to be not only for my safety but for their own. The drugs are hazardous and the risks are high but the well disciplined team handle this well.
I think throughout this blog so far I have not really explained how I feel about everything both from a mental & physical point of view.
Mentally & physically
How do I feel from a mental point of view ? From day one when I was diagnosed in Feb 2014 I set myself to beat the hell out of this cancer. I am by nature a mentally strong willed person, some say stubborn some say arrogant some say aggressive but to me it’s determination I set the goals & targets and achieve my objectives. Business, personal life & health are all in the same category. I care about those who care about me. I recall that after been diagnosed my oncologist came back into the room to basically see how I was handling the “You have a form of blood cancer called Hodgkins Lymphoma” he seemed a little taken back by the fact that I was smiling at him. So he asked straight out what I was thinking, my answer was “Doctor you have said that you need to stage this cancer, but you suspect it to be late stage judging by initial findings. So I’m going to take Mr Hodgkins back to the hell it came from and as I close the gates of hell behind me I will face Death and Death will feel fear, Death will see the scars on my body and what I intend to tell Death is never ever fuck with me again ” My oncologist smiled and said I do believe you will do that. Unfortunately Death did not listen so I have to take this one to the limits one more time but this time there will be no talking just pure violence.
So yes mentally I am strong I have beaten the odds, I have stood tall when even the medical staff believed I would stumble and I fully intend to continue in that determined manner. I will leave the real answer to you the people reading this.
Possible the most difficult mental issue I face is temperament. The drugs basically remove or attempt to remove the safe guards I have in place. From an early age I had a foul temper, I stood up to teachers, police, bullies and a violent father. At thirteen I joined martial arts to attempt to control this temper, I believe to this day that if I had not done this I would be either in jail or dead. I learnt to control the raging monster that resides inside me. The good part is that I would never ever physically hurt those I love. But Chemo takes or tries to take this control away. Again I have been able to suppress it but the least thing could trigger it. This part is basically a stop and count. Anita has the good sense to back off when she sees it coming, she maintains that my eyes turn from blue to ice blue, and all she can say is that she can see how very dangerous the monster could be. The medical team have a sedative in place now for me which I intend to take if the need arises going forward.
How do I feel physically? Now there is a difficult question. My mental capabilities have been pushed beyond even my expectations but physically you body has its limits. I have maintained my weight for the past two years at a steady 85kgs I am just short of 5’11 in height and biggish build, by this I mean I can turn muscles if I need to. But this particular type of Chemotherapy comes with a substantial amount of fatigue , the kind of fatigue only a Chemo victim can experience. But I manage it well, for example on Monday 1st of May before I was admitted I cut the grass in our back garden, cleaned the kitchen and spare bedroom, changed the bedding and washed all my clothing. I felt the fatigue coming and rested for an hour, then made lunch. Sounds semi normal! But it’s the mentality pushing the body to its limits. Anita’s view is to let me do it because she knows me better than any living person, she knows I am a driving force, she knows that if I say I don’t feel good then it’s bad, she knows that I will push every bone to its limits and the great part for me is I know she is there for me if I ever stumble. But yes out of the 18 “recovery” days there are a lot of difficult physical days properly about 16 days. Keep in mind that the first 8 days I have to self inject Neupogen GSF – these injections stimulate new stem cell production at an accelerated rate, these are bone crunchers, it feels like a truck hitting you, sever bone pain like sever arthritis but worse. I face a sever level of insomnia even with medication this has both physical & mental challenges. And my immune system is shot to hell, this type of Chemotherapy kills cancer cells, white blood cells and stem cells leaving me with no actual immune system, I’m not aloud to basically go next to near groups of people, someone with a cold could basically kill me. So a lot of caution, no eating out due to risk of infection, not going to pubs due to crowds and sterile glasses, no visitations with people who ave had a cold or been away on flights. Absolute 100% observation and personal care.
Leaving one main downside. My Mum is 85 and currently in the care of a retirement home, she has advanced vascular dementia. This form of dementia effects hearing, visibility, memory and speech. Prior to my relapse I would drive up to see her weekly, I live in Cork but the retirement home is in Dublin (167 miles away) doing this drive weekly had its difficulties since she was diagnosed in June 2016, it’s a long boring drive, sometimes I would drive up & back in one day. But since my relapse I have been told by my medical team not to visit the home as the risks to me are beyond dangerous , this has been supported by my Mums medical team. As her room is on the ground floor I have visited her once last week but stayed outside the garden window with Anita inside the room basically to let her believe that I am fine. I drove up and Anita shared the drive back all in one day, I have to say that 334 miles in one day with my current level of stamina is challenging. We may try it once more next weekend but that would be it as medical intervention from Cycle 3 onwards will be full quarantine particularly after the stem cell harvest.
So yes this treatment is both mentally & physically challenging. As I had shut my business it is also financially challenging but we are dealing with that via donations & fundraising, this is another long story which I will outline at a later date. I would like to thank the people who have donated and the people organising events, I am humbled by your generosity.
As a final note I have been asked not to show photos of myself in hospital . To those that know me you will all agree that I hate my photo been taken, to take a selfie would be unheard of for me. But in this case I believe it is necessary to show visually how I am doing, so my view on people who do not wish to see my photo should either not follow this blog and not comment on the images, I make no apologies for this attitude, it is not easy to write a detailed blog like this and it is even more difficult to post these photos. In my view I remain ruggedly handsome, windswept & wonderfully not forgetting cool & calm.
UPDATE: Apart from the fact that I hate these photos. i am now a week over ICE Chemo cycle 2. U have to say the first week after Cycle 1 was a lot worse. My body may actually be adjusting to the chemicals.
Here is a look at the week so far:
Friday 5th discharged with multiple medical prescriptions – a quiet days rest at home. And an early nut sleepless night
Saturday 6th Was a good day with some shopping a light walk but had to commence days I have to self inject Neupogen GSF – these injections stimulate new stem cell production at an accelerated rate, these are bone crunchers, it feels like a truck hitting you, sever bone pain like sever arthritis but worse.
Sunday 7th Should have been a good day but for some reason the temperament flared and it didn’t ease back. I mean this one lasted nearly all fucking day. At 6pm properly 12 hours into killing everyone on the planet it just vanished. I took the inject Neupogen GSF. My form started to return to something normal. A really close friend of mine had organise a “One Night Only” show in the local community hall. My friend Mr Donal O’Leary of Cork Express Pallets had spent a week preparing this, he is part of a local drama group called Shanowen Players. The presented a play called The Kings of Kilburn High Road Written by Jimmy Murphy and Directed by Valerie O’Leary. Donal had spent the day collecting raffle prizes a total of 24 prizes all donated. I only went to see ½ hour of this show as I am strictly forbidden to enter groups, No immune system equals extreme crowd dangers. The hall was packed. The generousity of so many people both known and unknown to me is unbelievable, they collected over €2,500 in a matter of hours. This money was urgently needed and had already began filtering back to medical bills by the Monday morning.
But to the Shanowen Players, the O’Leary clan and all the people who supported this “thank you”
Mon 8th Decided to go on a short walk with our dog
Ben is a 4 year old Pomeranian who is a very sweet natured pet. That’s his summer coat as we had him trimmed early this year due to my medical issues. Took it easy all day I took the inject Neupogen GSF and rested
Tues 9th More dog walking and decided to look at the website for improvements. Ended up writing the first blog from Feb 2014 but this is going to take time I took the inject Neupogen GSF and watched football
Wed 10th Temper Flare came from nowhere so I washed my car and cleared up part of the house but it took 4 hours to ease back. I am controlling these a lot better now but the least thing can provoke a nasty verbal response . I took the inject Neupogen GSF and this one hurt,
Thurs 11th First drive into City today. No issues done some shopping collected some new PJ’s and home, Quick walk for our every smiley dog Benji and then the self injected Neupogen GSF for some reason responded at a faster pace. Every bone in my body went into pain levels I have never experienced before. It’s a hard on to describe – maybe if you suffer from advanced arthritics then double the worst pain you every had and place that throughout your body. I started to rebuild the http://www.hlai.ie website and I have been working on the blog from the beginning 14th Feb 2014. Anyway Ian’s answer – washed the car again.
Fri 12th Really bad nights sleep, two sleeping tablets and about an hours sleep. So the plan is to walk the dog after breakfast … In reality I am just out of hospital a week and very much managing everything. Second last day of injections today. and the 5 day countdown to the P.E.T Scan.
Walking the dog never happened. Looks like fatigue caught up so knocked off feet all day. CUH confirmed P.E.T scan for next Thursday 18th May
Mon 15th Weekend was okay got out walking Sat & Sun. Weather today is back to Irish Summer so stayed in and wrote Mental & Physical approach to regimes Feb 2014 decided I needed the distraction
I have a Go Fund Me donation site available. If at all possible could you please leave a small donation. If every person that has read my blog left just €3 as a donation it would clear all medical bills to date Over 6,000 people have viewed the site to date.
(Update: unfortunately the Go Fund Me account will only accept a min donation of €5).