Please keep in mind when reading this that Chemotherapy & Stem Cell Transplants effect everyone in a different way, this blog tells you how I was effected by the treatment.
Plus day 4 Monday 17th July 2017
This is a different hell than I entered before, the screams are worse now the heat is melting skin. I knew it was going to be tough but not at this level. The damage to my body is sustainable but Hodgkins is been destroyed.
So I open my eyes to find I am still in isolation room but my throat is on fire so I drink some water, 30 seconds later I am retching, I look into the tray and it’s full of blood. This only makes things worse so I hit the alarm call for a nurse, my reputation of never calling them pays off as a nurse is with me by the time I dropped the call button, more retching, more even darker blood. Im sitting on the side of the bed as the nurse calls for help, a second nurses arrives. My main nurse leaves the room to get anti retching & nausea injections. As they arrive so do the medical team. I am placed on a morphine pump to settle me and this will also prevent some degree of retching. All normally dispensed tablets are changed to IV. It is after all only 7am…
Turns out my blood counts are rock bottom so I need two units of blood and a unit of plasma – Retching returned that night but not as bad. I can’t even consume liquids as my Esophagus is closing off. This is what they meant by not regenerating everything on the digestive trace is red raw and on fire. I’m taking five different mouth washes every two hours, two more to swallow. These are the only thing capable of repairing the damage
But I make it through the day only to discover day 5 to 8 are going to be worse
One area that I have not spoken too much about is the morphine . Automatically when completed a Stem Cell Transplant victims are placed on a morphine pump. Victims become quiet ill to a life treating level. The days following the transplant are very dangerous as the immune system is destroyed, everything entering or leaving the rooms are completely sterilized . Indirectly the treatment is palliative care “Palliative care is an approach to care focusing on promoting comfort through relieving pain and other symptoms. The aim of palliative care is to enhance the quality of life of those living with life limiting progressive conditions and their families. Palliative care uses a team approach to address the needs of patients and their families. The team is comprised of doctors, nurses and other specialists who work with persons’ primary doctor(s) to provide an extra layer of support.”
The levels of morphine used will relate to the victim’s needs and medical assessment. The morphine pump starts low and is gradually increased to help the victim.
I started morphine on Day plus 2 and it was increased on day plus 4.
Day 5 to 8 Tues to Fri 18th to 21st
Everyday starts with blood pressure test at 2am then a multi blood test at 6am. Day 4 had to be classed as a really difficult day for me. Today Tuesday the 18th is a touch and go, basically at 6am I was told that the next 6 hours would tell us if it was a make or break. to be fair my mouth, throat and Esophagus went to hell, extreme blistering ulcers lots of blood etc. My morphine drip was increased so I was basically knackered all the time. And just to top things off I’m back on Neupogen GSF (remember that particular nasty self injections I had to do for 8 days following ICE – yes the bone cruncher ) I’ll be on these for the foreseeable future. This is the day that I needed a number of blood transfusions. A very worrying morning but I have been updating the blog site so time flew and its now 3pm and I am still alive…a good sign to say the least. Getting told that you basically have 6 hours to make whatever calls you need is a serious game changer, the nurse had told me that the team were planning to increase palliative care levels, current levels have me drifting in and out of consciousness – increases would mean a none returnable state of unconsciousness, so I would drift into the next life within days. This decision was to be made at 12 and I got past it as it’s now 3. Team were satisfied to retain currently levels but I had to give the okay that they could increase it if my condition got worse.
The reality is that I had just been basically told I had 6 hours of conscious life left, that is beyond any personal terminal diagnosis ever. I wanted to make two calls only, my Mum and Anita. I knew not to call my sister as that would have destroyed her. My Mum was in 24/7 advanced care for Vascular Dementia and if she had a window of clarity the news would have dire effects. So I waited till 9:30am and made my only call. Anita. She was shocked and asked what I thought, the answer was typically me “I’m gonna beat this honey” and that was it.
But I can still get out of bed to go to the toilet or shower, once they disconnect the IV’s. The cold shower at 8am snapped me into reality. Time to kill Hodgkins for good
My daily blood test for these four days return nothing that resembles good news actually on Friday it looked so bad they were considering more blood transfusions.
Day 9 and 10 – Sat and Sun 22nd and 23rd
So Saturday starts with normal blood pressure at 2am but something in my mouth felt different so I went to rinse my mouth and no blood, first time this week to rinse and not see blood. So before the blood test at 6am I try again and no blood. The nurse came into the room, done blood test and went to examine my mouth. As a person suffering with long term hearing loss I have learnt to read body language. The nurse was definitely shocked to see a clearish mouth, she asked me when I spotted it and I said about 4 hours ago. And it gets better, 4 hours later we get the results of blood test & all but my Neutrophils are starting to show up, i.e. My white blood cells are at 0.6
Here’s a real scary part. Each time I went to close my eyes to sleep it felt like floating images drawing curtains but not in an horrific way. But that night I saw nearly every dead person I know, they were not acknowledging me but every one of them were smiling – some were fishing some playing golf others outside coffee shops more just casually walking past and yes I know a lot of dead people maybe too many I have more friends & family dead than I have living. Did it put fear in me, no because there was no intimidation like what I experienced before, was it the morphine ? Well I will let you the reader decide on that. But I can tell you this, I am going to play golf again and I am going to do some offshore fishing again. Both of these I gave up for a job that resulted in nothing.
Day 10 Sunday 23rd. Normal start to day except I have a small breakfast. Blood results were incredible my white cell count was now at 2.8 but the Neutrophils have finally show up at .6 but this is the first sign that my bone marrow is mending
Doctors are really happy and have instructed that I am to come off morphine over the next 48 hours. Neupogen GSF stopped from today.
Now I’m in for the rebuilding part, after no food for over a week this is going to take time. Im not out of hell yet but I can see the valley of the shadow of death. I’m winning again
Day 11 Mon 24th July On the way to recovery now. Normal start to morning 2am blood pressure 6am blood test. Medical team in at 11am. They are stopping morphine today. But they want to give me another Neupogen GSF and who am I not to permit them target practice And all tables now back to solid form. Bloods are all good so for day 11 not bad. 5pm and morphine line removed out for my second walk today at 6pm. I can feel the amount of energy that the past week had drained, way past my reserve but I’m up and walking with a fresh outlook on who I really want to kill next….Beyond that a relaxing day
Day 12 Tues 25th July here We are again, black of test at 6am (so was able to sleep without blood pressure test 2) Doctors in discussing the possibility of me going home in the next few days. The blood test from today will answer that & if they resolve the diarrhoea which is now a pain in the arse. But the mere mention of home is incredibly as it best case would be day plus 16
Tomorrow is day plus 13 and marks 3 weeks in hospital, for me it feels a long time , a lot of pain fear and anger has been vented in this tiny room. The type of fear & anger that Conor McGregor would feel if the bad mouth little fucker ever had to face a real man like me
Types of Blood Cells
For those who wish to know
White Blood Cells (WBCs) — White blood cells fight infection. They include neutrophils and lymphocytes, among others.
Neutrophils, also known as polys or granulocytes, account for the majority of circulating WBCs. They are responsible for fighting primarily bacterial and fungal infections. Bone marrow growth factors like G-CSF (also called neupogen) make neutrophil counts rise. The neutrophil count should be at least 500 (usually reported on the lab test results as 0.5) by 30 days after transplantation.Neutrophils are not usually transfused except in special circumstances. The use of antibiotics to fight infection and growth factors to help the bone marrow grow are usually adequate until the neutrophil count is up.
Lymphocytes are the backbone of the immune system. These cells are responsible for fighting viruses and for forming antibodies that will attack infectious organisms. Lymphocyte function is generally abnormal for as long as three months after transplantation. This means you may develop severe infections even when the white blood cell count is normal.
Red Blood Cells (RBCs) — RBCs carry oxygen throughout the body. The hematocrit means the percentage of blood that contains red cells. The hemoglobin is the part of the red blood cell that carries oxygen. The hemoglobin is proportional to the hematocrit. Anemia occurs when there are not enough red blood cells in the body. Symptoms include shortness of breath, weakness, fatigue, dizziness, headache and irritability. A red cell transfusion is given through your catheter over an average of two to three hours. Additional transfusions may be needed as an outpatient, or you may be given erythropoietin (Epo), a red blood cell growth factor.
Post Day plus 13 Wed 26th July 2017
From the beginning of treatment I was told that the absolute minimum time spent in hospital recovering would be Plus 16 Days yet here I am in a taxi heading to my Mum’s house to meet Anita, we’re staying in Dublin tonight and heading home to Cork tomorrow.
How fucking good is that, I beat the earliest released HLD NHL record by 3 days. It’s not about beating records as there is no way on this earth would the medical team allow me home unless 1000% happy with me.
So basically the early 6am bloods were done, they came back good. Physical test were excellent. Ability to eat was poor but they agreed home cooking by me works fine. Mentally strong. Obviously my body has taken a pounding & I have lost about 10kgs so extra care is needed. I have a massive list of what not to do. So extreme care for the next month is a plan.
Blood test for next 3 weeks in Bon Secours
100 days from Transplant I will have a PET Scan which I reckon will be 21st October
I know I keep saying this but the Professor Doctors, Nurses, help staff & canteen staff are unbelievable awesome. So initially we had expected to be in hospital for 4 weeks and packed as well as possible under instinctions that only a small suitcase would be allowed. Managed to pack enough to cover me for just over 3 weeks (assume I would be allowed ware the same PJs twice) but with dailies changes during week 2 we were heading for trouble. As Anita has a stress fracture to her right foot it was impossible for her to drive up and back. But my 80 year old neighbor rang me on Monday and offered to drive over collect my cloths wash then dry them and have them back that evening. How wonderful is that. Also a young lady who I have not meet in 25 years but has been in contact constantly since I was re-diagnosed offered the same thing last week so thank you Rachael. But no need thank god but the offers where gratefully received
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