I did not think this would be the outcome. Although being told on several occasions that there are limited treatment options, I just cant get my head around this.
At the end of November I took my brother Chris to A&E due to him having double vision and off balance, unable to walk without holding onto things. He had a fall and banged his head the week or two before and didnt get checked over so we thought it was a symptom of this. After a full day at the hospital and my brother getting inpatient and just wanting to go home as he hates hospitals, the consultant came to tell us they found what looks like multiple tumours in his brain. I asked then if there's a possibility this could be cancer and he told me they know that they are cancerous tumours they just cant confirm without a biopsy.
This was going to be the next step so Chris then had a CT of his Chest, Abdomen and Pelvis, and an MRI of the brain. We then met with a specialist and he let us know that due to the location of the tumours a biopsy may not be possible. He referred Chris to a cancer specialist and oncologist who gave him a full physical examination looking for skin conditions and lumps etc but nothing was discovered. They told us that treatment was limited if they cant find the primary source, as they suspected this was brain mets from cancer that had spread to the brain from somewhere else but the CT had shown no signs of cancer in the body. his Bloods did not show anything either. Treatment would include Steroid therapy. Chris was given the options if he wanted to continue to investigate and try to find where this has started or to manage symptoms and pain and basically start Palliative care to make him as comfortable as possible. Chris choose to continue to investigate if it meant a possible treatment that could work.
He was booked in to have a Lumbar Puncture on 24th January. He had a wobble and said he would not be staying in hospital but this was due to the confusion of the brain tumours he had forgotten what he was to go in for and why he was to stay. Myself and his oncologist managed to persuade him that it was for the best. Later that night I left upset before he began to forget who I was and became quite aggressive but again I thought this was due to the tumours growing which was not a good sign. He did not end up getting the Lumbar Puncture as there was an abnormality on his CT scan they had done that day and they were giving him medication for this overnight as it looked like brain fog (fluid on the brain) and they were planning to do another CT in the morning then perform Lumbar Puncture. The following morning I received a call from the hospital to tell me Chris had become unresponsive and they were concerned it was the fluid that had built up further over night. The done an emergency CT to confirm this and decided he needed to be transported to Edinburgh (we are in FIfe) and they would have to Intubate him. He was blue lighted through and had emergency surgery to put an EVD drain in his brain to drain the excess fluid. He was kept in ICU for a few days and then moved to the Neurological Ward. He was doing really well after coming off the ventilator and things were looking good, he did have some delirium and agitation but they were trying to manage this the best they could. A week later Chris deteriorated and became very flat and showed signs of an infection. After a xray of his chest they realised he had contracted Pneumonia and that he was struggling with his oxygen levels. They moved him back to ICU and he was placed back on the ventilator and given strong anti biotics. However while putting Chris back on the ventilator his lung collapsed and they had to give CPR for 4 minutes.
Chris was on the ventilator for a day until the anti biotics had time to kick in, once he was taken off the ventilator he done well for a day or two but then struggled and had to be placed back on it. This was then the 3rd time he was placed on a ventilator. They kept him sedated for a good amount of time during this as he was agitated trying to pull the ventilator tube out and IV lines etc. I was spoken to by the ICU consultant who told me that when Chris came off this ventilator there was a very high chance he would fail without the help of the machine but they would not be putting him back on as it would almost impossible to get him off it again. He told me it was looking more likely that Chris would pass in hospital.
The started to wean Chris from the final ventilator and he done so so well. I walked n with my cousin one day and Chris was sitting up in a recliner the first time in over a week and the smile on his face was amazing. He was unable to talk but over the past week he had became good with using his hands and had our own little way of communicating with each other. His emotions were up and down as was expected but he kept his sense of humour and had us laughing everyday.
eventually he was moved back to the Neurology ward last week and he was ok with this he seemed so much more settled with being in hospital for over 2 weeks by this time and being through so much. My daughter who is 9, came to see her Uncle Chris and she made him a sick bowl hat he was very impressed. The dote on each other and it brightens his day seeing her. After a few days Chris starts to have alot of seizures and his anti epilepsy medication is increased. He also begins to have trouble with his oxygen levels which keep fallen very low and he required alot of oxygen, Then a day later he would be on very low oxygen and doing great. It was crazy. On saturday the 17th I spend most of the day at the hospital with Chris and he seemed to be quite flat and having alot of seizure activity again. The nurses ensured that this was being looked at and that he was getting the ccare he needed which I do not doubt at all. We got home at 9.30pm, I received a call from the hospital at 10.30pm advising that Chris was not doing well with his breathing and his oxygen was dropping dangerously low and they were having difficultly increasing this despite there best efforts. They did manage with very high powered oxygen mask. The senior consultant came to chat with me and advised that this was not ideal to continue the suction of secretions in Chris' lungs as this was uncomfortable for him. At this point the decision was made to move Chris onto a different ward that had a private side room and to place Chris on palliative care and keep him out of pain as comfortable as possible.
As hard as this was to hear I was relieved for him not to be going through all the invasive procedures he was going through anymore as I know he would not want to keep going like that. So we had a peaceful Sunday and had a good giggle and we listened to music and just had some time together. There was a few times Chris got a bit agitated but medication really helped with this. His breathing changed slightly but he was alert and communicating in his own way telling me when he felt pain or when he wanted a drink on the little sponges or if the music I had on was rubbish and he wanted me to change it. Monday morning my cousin left to go home to look after her dogs and get a little sleep before coming back and she was going to pick me some clean clothes and things up too as I had been at the hospital from basically saturday morning given the hour I managed to get home. I opened the curtains to Chris' room and he was able to look out the window as he was not able to do thie in ICU or the previous ward. it was lovely to see how happy he was. We had a few teary moments and I chatted about my daughter and her silly ways sto make Chris smile.
At 1.45pm, Chris took his last breath. I thought he was choking, He was still awake and looked so scared. I help his hands and begged for him to keep breathing as I was not expecting this to happen this way/. when I was with my mum when she passed it was so peaceful, she slipped away in her sleep. I fear he knew what was happening and was scared.
It doesnt matter how many times you are told someone will more than likely pass in the coming days and that this horrendous disease will be the cause but it still completely shocks you and hits you like a brick in the chest.
I will take comfort that he is reunited with my mum and they are together now. But I will miss my big brother immensely.
Christopher - 21/11/1974 - 19/02/2024 Age 49 years old.
