The content of this section is very straightforward and may upset some readers. Please proceed with caution
4th November 2014
Appointment with the consultant Radiologist at 12 in CUH. Meeting went well he explained in detail what would happen over the next couple of months. Firstly I would be fitted with a mask with a number of x-rays to insure all is good. I am referred to a dental professor in the hospital as the Radiotherapy can damage the mouth. Then I would have 3 to 4 weeks of targeted Radiotherapy to the neck. All sounds easy enough…. the Radiologist commented on how well I looked following ABVD & said I should have no trouble with Radiotherapy.
I have pointed out from time to time in my blogs that each person reacts differently to therapy and that is also the case with Radiotherapy. I had a few issues during ABVD most were under control and I could see why the team felt that Radiotherapy would be easy but it was not.
Home to consult with Dr Google & what I could find about Radiotherapy wasn’t great. Lot of mixed comments but yet again attempting to find a Stage 4 HLD 53 year old who had gone through ABVD and Radiotherapy was impossible to find. Nothing even close. The Macmillan and Cancer Research UK sites gave a realistic outlook but still they held back on the possible issues
I was then given a date 12th of Nov for fitting for a therapy mask. Each radiation mask is moulded to fit a patient’s face precisely. Plastic screws around the edges fasten to a table, immobilizing the head and neck for targeted radiation therapy. For the first time I am using the word “radiation” because that is exactly what is used. The mask is moulded to each individuals face, the procedure is quiet quick as the moulded only takes minutes to dry.
(I am using the Cancer Research UK photo for this as its the exact copy of what was made for me)
From moulding to X Rays and special making were placed on the mask. I was then sent to the dental section where they provided special toothpaste, mouth washes and toothbrushes. Then finally I was given the commencement date as 17th Nov 2014.
Radiotherapy unlike chemotherapy is fast. There are no drugs involved in the procedure. Exposure is for less than 2 minutes and the total time involved is less than 15 minutes. I get the okay to work for the duration of the 3 to 4 weeks but with restricted meetings as I will be slightly radioactive.
Make no mistake you are been exposed to radiation- side effects include radiation poisoning, skin burning around the treatment area, blisters to the mouth & throat, feeling nausea and sever nausea, pain to the area treated, fatigue and stiffness to neck. etc etc. The team tackle each area fast but they are dealing with radiation and the slightest mistake could be terminal.
17th Nov to 12th Dec 2014
Monday to Friday every week for 4 weeks with Saturday & Sunday classed as recovery days.
On 17th Nov a Monday I arrive into CUH at 14:15 I was given a small diary which had a barcode on it, basically no reporting to reception or waiting about, you go to a barcode scanning unit place your diary under it and it tells you where to report to.
I am greeted by a lovely oncology nurse who asks if I would volunteer to allow student nurses & doctors to be present during procedure. This is a University hospital and therefore a training place for doctors & nurses. These young students are the future of medicine & we should never hesitate to help them. So instantly signed the agreement forms. But there were no students today, today was a serious day for the team, they had to introduce me to radiation and how the procedure worked.
I taken into a reasonable large room, entering the room I noticed how thick the door was, it was about 18 inches and solid. I passed a remark about it to the nurse who informed me that the door was indeed solid lead and worked on hydraulics, she also pointed out that the room itself had walls that were lined with the same lead. In the centre of the room was the radiotherapy unit and it looked frightening
The nurse then takes the mask that was moulded for me and asks me to get on the bed a lay flat as could be. Before placing the mask on me she explains that they will be carefully monitoring me during the procedure and will have visible through multi CCTV units both on the machine and in the room, if for any reason I felt distressed all I had to do was raise my right hand, but under no condition should I try to move as the mask would be anchored to the bed and I could damage my spine if I moved. My thoughts at the time and I think I actually said it to the nurse, I won’t be calling or signaling for help, it simple wouldn’t happen. The nurse explains that they need to calibrate the unit specifically to what was required for my treatment and this would take 5 to 10 minutes. The science behind this form of treatment is substantial, they measure everything, weight, height, blood pressure, heart, lungs and from that they find the exact field of exposure. The neck is an area that must be precise, too much could damage the spine or the brain.
The nurse then secures the mask, she asks if I’m okay and I lied by saying yes. I felt confined or trapped a situation I have never been in before but I cover it well. She then tells me that the are leaving the room and will be back in a few moments, and again tells me that all I need to do is raise my hand. She leaves and the door closes, literately I could bother hear and feel the air leaving the room. I felt a sudden rush of fear, it only lasted a few seconds but I had to use every fibre in my body not to raise my hand. Lucky for me I got over this fast, it was seconds but it was the first time I really felt scared in my life. The machine above me started moving so I closed my eyes, took a deep breath and told myself to snap out of it. A few minutes later the nurse returned with a doctor, they said my vitals had spiked but appeared to stabilise fast – I assured them that I was fine and just needed a moment to compose myself. The doctor done a quick check and said she was happy to proceed. They left the room again and the whoosh souls of air followed with the door closing. The machine again whizzed up and took position to the lower right side of my neck, slowly moving back towards the centre of my neck. And just like that if stopped. The nurse came in removed the mask and said that was it… done… and asked how I felt. I said I felt fine and explained that I could feel heat to my neck, she assured me that the feeling was not a concern and that I had done extremely well. My diary was then handed to me with the time for the next day already entered. And that was it. I didn’t feel sick or soar, I didn’t feel poisoned or burnt, nothing. Before I left the nurse asked if I was going home and I said no I was going to work. She pointed out that I needed to avoid human contact for at least 3 hours, I told her I didn’t actually work with many humans.
I had been told to apply a cream called E45 every night but not in the morning. I was also told that following Radiotherapy I could use the cream as often as needed
So day one over. Every Thursday I was scheduled to meet a doctor from the team and the dentist.
I won’t be going through every day as the basics were the same, the only exception was that it was faster. The system was programmed with my details and the calibration from the first day automatically loaded. On the Thursday I meet with the doctor, this was not the consultant but a member of his team. The doctor was a Saudi Arabian lady doctor in her interim year. An absolutely beautiful lady both inside and out, I formed a great relationship with her from day one.
Week two commencing 25th. My skin on my neck felt soar on the Monday prior to treatment but I didn’t mention it to the staff, my appetite had dropped and I did mention that so I was given an appointment to see a dietitian after the doctor on Thursday. So the treatment only lasted minutes but each time my neck felt warmer. Meet the doctor Thursday and she was happy with how things were going. She pointed out that as the machine passed over the area it was digitally recorded and the progress looked excellent. Meet the dietitian after and she felt that my food was well balanced but added a supplement to replace missing vitamin’s.
Week three 1st December 2014 and the problems commenced on the Wednesday my neck was now a solid red in colour, it was soar to touch and I had a shake in my right hand. Senior consultants were called but they felt it was okay to proceed. On Thursday my lovely Saudi doctor got more concerned, she added further creams and distilled water to my daily treatment. She also sent me to the dentist who changed my toothpaste & toothbrush, I also needed more mouthwashes.
Week 4 8th December 2014. My neck was now severely burnt, the hair behind my ear had turned for my natural light red colour to black. My craniovertebral joint is exactly what it sounds like: a joint that permits movement between the vertebral column and the skull hurt and I had serious tingling in both hands and feet. The tingling is due to nerve damage. In reality I had nearly 30 gml grey of radiation to date. If I had been instantly exposed to that level of radiation in a single day I would be dead. All visible signs were pointed at radiation poisoning but I actually didn’t feel that bad, yes neck hurt like hell but I had expected this. So they called a senior Radiologist in who seemed iffy but went ahead. Everyday it was the same, I was checked by doctors first and they nearly stopped treatment by Thursday but as I pointed out there were only two days left. I met the doctor after treatment and even though she was very concerned she was happy with my overall attitude. So the final day Friday 12th 40 grey gml maximum exposure for height weight and age, as the doctor said that day it was borderline on lethal. I also had an issue with balance. But got through it. The head consultant wanted to see me on Monday and the appointment was made.
Monday 15th of December 2014 Met the consultant who did not look impressed. He pointed out that they had done all they could, that the real effect of the treatment would kick in within a few weeks. I asked what to expect over the coming weeks and his answer was “enjoy your Christmas dinner because you’ll be in here for New year” I was taken back by this and quizzed him further. His answer was “There’s nothing more we can do for you, you have about six weeks and we will help as much as possible” and with that he got up and left the room. His registrar was still in the room, I was slightly in shock but asked her when would the consultant be seen me again and the answer was “when your admitted in a few weeks”
We left the hospital and on the way out the door I looked at Anita and said you know what they just told us, she said yes. I clearly remember saying “well he is wrong” – My appetite sank swiftly and I didn’t enjoy my Christmas dinner, actually I hardly eat any of it. I survived more on basic food and supplements over the follow weeks but by New Year’s Day I was managing small meals. I am actually writing this blog on the 2nd of December 2017, 3 years later and I’m still alive. I have not seen nor heard from that consultant since the 15th Dec 2014 and I seriously don’t want to meet him again. I regained strength slowly over January 2015 but my appetite never really recovered. The burns to my neck went by late Jan 2015, but the hairline remained growing black for nearly 8 months. I was back in full time work 70 hours a week by the end of January. So I was recovering fast. But I would have to wait till March for the next PET scan as the field of radiation would still be present till mid March. More to follow
Summary of issues:
1. Diagnosed 14.Feb.2014 as Stage 4 Hodgkins Lymphoma
2. Type 2 diabetics Chemotherapy Steroid induced
3. Damaged to right lung cause as part of spread of cancer and Bleomycin
4. Nerve damage due to Radiotherapy resulting in constant tingling in fingers
5. Poor appetite
You should never underestimate the power of the mind and a person with the attitude to go with it. I have survived a lot worse.
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(Update: unfortunately the Go Fund Me account will only accept a min donation of €5).
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