I have often thought about starting a blog, but have never had the determination to do it until recently.
My journey started with a mundane ache in the shoulder blade on the right hand side of my body. I put this down to the amount of hours I was spending on a laptop at work and the associated stresses with work. Many a visit was made to the doctor who said that it was a common type of neck/shoulder strain associated with long hours on laptops. Gradually over a couple of years the pain would be in the shoulder and then spread to the neck. This often lead to a stiff neck and headache. However, over these years the pain gradually became worse and more debilitating. Despite more visits to the doctors and prescribed painkillers which were getting stronger, I still needed more of them.
Eventually I started where a neck and shoulder support which helped as the neck and arm were stationary when wearing it. The only pain I suffered from when wearing it was when sneezing which by this time actually was actually making me almost cry with pain. I was popping painkillers like sweets and they were just not touching the pain.
My wife, then made me undertake a private MRI scan to see what the issue was. Basically she was fed up with my moaning and pain and not being able to do things round the house. Bear in mind this probably was know entering the 3rd year of pain and discomfort. I had the scan and it showed an impingement on the right shoulder and the beginnings of osteoarthritis and associated damage. As I had this done privately, it allowed me to see a consultant specialising in this area of the body. I visited the consultant and he was all for giving me a steroid injection to try and relieve the pain. However, during the exercises he was asking me to perform, he noted that the pain and discomfort was far more significant than he would expect. With this in mind, he said that he wanted me to undertake another MRI scan on the shoulders, neck and upper spine.
While I was waiting for this test I went away on holiday and had a thoroughly miserable time as the pain just kept on increasing whatever I did to try and relieve it. By now, even moving the upper body was so painful. I returned early from holiday as I had notification of a scan date. The following day I had the scan and told that the results would be about a week and that the consultant would be in contact with me. Two days later I received a phone call from my doctor saying that he had seen the scan and it showed considerable damage to the neck area and that he would be coming to pick me up in the next 30 minutes to take me to hospital. That day was the Wednesday prior to the queens celebrations long weekend. My doctor duly turned up and took me to hospital where I was whisked straight through the A and E section and into majors.
following this, I underwent many CT and MRI scans and various blood tests and other cognitive tests. After about 3 hrs in the hospital I had my diagnosis of cancer. Although the were unsure of type, they felt it was bone cancer and possibly Myeloma. I was prescribed a combination of painkillers and steroids and moved to a ward. I stayed in this ward for 10 days whilst they tried to diagnose the type of cancer and how they were going to treat it. Due to the location of the tumour on the neck it was causing a compression on the spinal cord. As it was causing a compression I had to be transferred to a London hospital and the outlook was to have an operation to remove the tumour and release the pressure on the cord. However, until they could ascertain the type of cancer this was delayed and I had to undergo a biopsy of the neck so they could get part of the tumour. That biopsy was probably the most painful episode of my life, but would lead to a diagnosis of my cancer type.
Following many tests, I was diagnosed with a Plasmacytoma tumour on the neck. This belongs in the bone cancer family but is heavily linked to blood cancers as well as the blood is what forms the cancer which then attached itself to a weak spot on the bones in the neck. It was decided that no operation was to be performed and that treatment would be painkillers and steroids and then radiotherapy treatment. That summer I was given my radiotherapy every day for 7 weeks on the neck area. I had the face mask which covered the face and shoulders and upper chest. Treatment was arranged quickly and the staff who performed it were really helpful.
My treatment seemed to go on and on. The constant travelling to the hospital was energy sapping and seemed never ending. The weeks passed and gradually the light at the end of the tunnel was beaming. However, at the end of week 4, during radiation the side of my throat became burnt due to the radiation and location of the tumour. I have never known pain like and could not swallow or eat as it was like swallowing a bag of glass. Over the next 10 days a lost 15kg in weight and was prescribed many painkillers for the throat to help with eating. I had my radiotherapy on the Friday and the nurse was preparing a prescription for morphine to allow me to eat and drink. I did not want to take this as I had seen the effects on my mother when she cancer, so we agreed to delay the morphine till the following Monday if I did not eat over the weekend. During that weekend my throat improved slightly to allow me to eat and drink. My main food being super noodles. Strange food I know but the just slid down the throat and allowed me to at least eat something.
my treatments totally ruined my taste buds and some foods that I once liked, now became horribly. Garlic bread was a favourite prior to treatment, but now become inedible. This remains still today. Nearly two years after treatment. I am now all clear but some days are still a struggle. I don’t know why but some days I just feel like I have hit a wall and the energy levels are low, but I definitely have more better days than bad ones. Gradually my strength has returned and I am now able to do most normal things although if I have a busy day, I can often feel very tired the next day.
We got ourselves a boxer crossed with a doggie de Bordeaux and he has helped my recovery and pushed me on days where I did not feel 100%.
Overall I would say listen to your body and just do what you want to do and feel like. Only you know know how you feel and what you can do.
i hope this insight helps someone else in their journey.
Good luck to all !!
