My dad…. Our hero…..

a fit, healthy young man.

He had no illnesses, no health scares or any health problems throughout his life. He was a painter by trade, and worked hard his whole life. He had lots of hobbies and he was a keen biker- he loved his motorbike.

He was a devoted family man, and as a family we did everything together. We all lived at home so there was mum, dad, me(21 at the time) and my 2 sisters (19 & 17), and we were a very close family.

 

How his illness started….

The first sign we noticed (not knowing it was a sign at the time) was when dad was asleep he would hold his breath for a few minutes, and then all of a sudden he would let out a huge gasp. He was unaware of this as he was obviously sleeping but we told him, and started to notice that the length of time he was holding his breath for was increasing, and becoming a bit worrying. Mum and dad explained this to the GP and he referred dad to the sleep clinic in Morriston hospital. He spent a night at the hospital so they could monitor his sleeping, and to see what they could come up with. This was very strange for us as as a family- as nobody had ever been to hospital so leaving dad was a very strange feeling. It might sound odd as it wasn’t  a long stay, but it was just the thought of it being a hospital and staying there on his own. Anyway, the results from the tests highlighted a mild dose of Sleep Apnoea caused by slight weight gain around dads chin. There was no need for medication as it was only a mild case, they just suggested that he tried to lose a bit of weight in this area. So this is what he did.

The next things that followed was one day when dad was painting the skirting’s in our house, he was painting on his knees and when he stood up he immediately felt dizzy- the feeling when you get up too quick. Normally that feeling passes after a couple of seconds, but it didn’t. He told mum how he felt, so she told him to stop painting and have a sit down and a rest.

This went on for a few days so dad made an appointment with the GP, who diagnosed him with Vertigo once the dizziness was described. He was given tablets, and dad carried on as normal, still went to work.

The next symptom was that dad started to fall asleep quite a lot. He was becoming quite tired and would quite often have a short nap at any time of the day. He was working as a painter and at the beginning it didn’t affect his work, but whenever he sat down to have his lunch on his breaks he would have a little snooze- very unusual for my dad as he was always doing something and always so active. When he came home from work he would have 2 or 3 naps before he went to bed. We didn’t think much of it at the time, because he was very busy at work and was getting up very early in the morning and coming home late.

As he continued to see the GP from the vertigo diagnoses over a couple of months, we were regularly updating the GP with changes in the symptoms but he would just say it was the vertigo taking it out of him.

Then as time went on it was obvious that it wasn’t just vertigo, and over time there was a huge change in symptoms- his eyesight became blurry, he couldn’t focus properly, he started to feel wobbly when he walked. The GP had diagnosed dad with MS, Sarcoid, TB and even that he had had a series of mini strokes and sent him for MRI scans.

As the symptoms were becoming worse, mum and dad discussed with the GP whether or not this could be a brain tumour, as dad had lost his sister to a brain tumour 5 years before and some symptoms were very similar. The GP said that it was highly unlikely and he was sure the MRI would show that it wasn’t.

His eyesight was becoming quite bad, and eventually his eyeballs started to shake which was very noticeable. Dad started to see the optician quite regularly because of this and said he had never seen anything like this before. Even though his actual eyesight was ok- not brilliant but ok which was normal for a middle aged man, his eyes couldn’t focus properly and that was the main problem. The optician made him specific glasses which he said would solve the problems but after a couple of weeks it was clear the glasses weren’t making any difference. The optician would adapt them, change the lenses, change the thickness, change the type of glasses- nothing seemed to make a difference but as the optician was the only one who seemed to be helping dad at the time, dad was adamant that he wanted to carry on with the new glasses and working with the optician to try and solve it.

Dad was referred to Morriston hospital to have more MRI scans and tests to identify if he had had a stroke. We had to wait a about 8 weeks to be booked in for an appointment for the actual scan, and several more weeks for the actual results- little did we know but this was vital time.

When we eventually had the results, the scan showed a shadow on the top of dads brain which highlighted pressure or something similar. It was at this point we were told that the scan didn’t show a mass in his brain and it was not a Brain Tumour. As you can imagine this was like lifting a million ton truck off your shoulders that we’d been carrying for a long time. But then it caused a feeling of anxiety for all of us as we needed to know what was causing all of this if it wasn’t a tumour.

By this time dads walking was very difficult for him and he was regularly falling over. At first they were slight falls where he would stumble but manage to regain his balance, but these falls started to become worse. He would often fall to the floor when he was walking and often would hurt himself. This was very worrying for us as it was something he couldn’t control, and we couldn’t always help him and he was very frustrated as he couldn’t do anything to prevent it. We never left him alone anymore, and would always carry things for him to try and take away any obvious danger- like a cup of tea or kettle. 

Over the next few months dad carried on having  MRI scans every 6 weeks- 2months to see if anything was changing. Often, we would have to wait up to 2-3 months just for the results, which was valuable time for something like this. Each MRI scan was showing no change, the shadow was still there, it wasn’t growing, moving or changing shade it was just there in the same place every time.

He spent another spell in Morriston hospital on 2 occasions for a month to 6 weeks at a time, under the senior neurologist so that they could monitor his symptoms and carry out a number of tests including lumber punctures, blood tests, ct scans, balance tests, co-ordination tests and more MRI scans.

The MRI’s continued to show the same results and all other tests were completely clear and as far as the doctors were concerned they couldn’t see what was causing all of this. They did suggest mini strokes once again, or early signs of dementia or a degenerative wasting disease but each time we would go home and look up these illnesses and we didn’t accept any of them as we felt we were just being told anything.

His walking became a lot worse at this point and he was no longer able to walk unaided. He had a frame to help him walk, but eventually he started to fall over the frame as he didn’t have the co-ordination to use it properly. He would hallucinate and often think he was somewhere else.

Just to give you an idea of how quick the symptoms were developing….

The first time he had a spell in Morriston hospital for tests he walked into the hospital linking arms with my mum, the second time he was walking with a stick, the 3 time he came out in a wheelchair.

After all these tests, the senior neurologist at the hospital called us in and basically told us that the tests weren’t showing up anything and he didn’t feel there was anymore he could do and that we would just have to see what happens.

We’d tried numerous times to seek private medical services but each doctor at the private surgeries were the same doctors we’d already seen- which was very frustrating.

Obviously we were disgusted with the doctors response, and refused to accept that nothing was going to be done with dad changing so rapidly and no diagnosis that made sense after all this time. Mum and I basically begged for the neurologist to refer us onto another doctor, and told him that we weren’t accepting what he was saying as nothing was conclusive.

After several discussions and again several weeks late he finally said he would refer us onto the National Neurology and Neurosurgery hospital in London, as he trained there and still had contacts there. We were very grateful, and thought we were getting somewhere- however it was another 10 weeks until dad actually got admitted up there and he had been like this now for the best part of 18 months.

By now his condition was very difficult. He couldn’t walk, he was sleeping for almost 20 hours a day, sometimes he wouldn’t know where he was and would hallucinate very often.

When we eventually got to London, dad was under a professor of neurology and he spent 3-4 weeks up there.

We met the professor on the 2 day of being up there and he did a few simple tests on dad- co ordination tests, speech tests, walking tests (he couldn’t walk by himself at this point) and he also looked inside his mouth. Within 2 minutes he identified that there was a tumour somewhere in dad’s body that was causing all of these symptoms. He identified this from dads mouth- he had a visible pulse in the roof of his mouth which suggested a blockage somewhere, he wasn’t sure where but promised he would find it.

Within a week we were all called in and it was then that million ton truck came crashing down on us all. They’d found a Brain Tumour, and that was what was causing the shadow. The tumour was buried in his brain and was attached to the brain stem. It wasn’t growing in mass but growing along the stems. If you can imagine a sprouting potato, each sprout was attaching itself onto a stem and slowly shutting down messages to the rest of dad’s body. This explained the sight loss, the sleeping, the falling, suddenly it all made sense but was heartbreaking- the diagnosis we thought it was certainly not going to be.

They informed us that they needed to identify what sort of Brain tumour they were looking at, whether it was malignant or benine, and if so what kind and also whether it was causing any extra pressure inside the brain. The only way they could find this out was by doing a biopsy. This was the hardest decision ever as to whether dad should have the operation or not, as the complexity of entering that part of the brain was life threatening and very difficult. We felt that we couldn’t make the decision so we had to wait for dad to be in a state where he was aware enough of what we were asking of him- this was very difficult as the symptoms had taken their toll by this point , and he was often in a deep sleep or woke up thinking he was back in his youth living with isparents, or would often wake up in a panic as he was in hospital and wanted to go home.

Dad decided that it was the only option and he needed to know for himself if there’s anything the doctors could do for him.

The biopsy took 6 hours, as it was so complex. Dad had a seven inch scar at the bottom of his head and the top of his neck where they had entered. He had over 100 stitches inside and around 20 staples on the outside. He came out of the operation and went straight into HDU, he then became ill and went in to intensive care and then the following day back into HDU. That truck became heavier and heavier.

After a long 36 hours he started to come around. He panicked because of all the tubes, and tried to pull them out several times.

The biopsy showed that the tumour wasn’t cancerous, there were slight cancerous cells which may have developed over time but it wasn’t graded. Dad was diagnosed with a Glioblastoma brain tumour. There was no option of any chemo/radio and no medication would be able to shrink it or stop it at this stage as it was too advanced. There was no additional pressure in the brain so any symptoms caused had come from the tumour itself and the way it was growing and attaching itself onto the stems.

Following this spell in London, Dad was brought back to Singleton hospital where he was to be cared for. We met him there, and immediately wanted to get him home where he belonged. They informed us that he would remain in hospital but there was no chance we were going to let this happen as we wanted him home with us and he hated hospitals anyway- who could blame him, he’d had more than his fair share.

We didn’t feel as if the care was constant enough either as he was often left alone. He was very vulnerable- getting out of bed and falling, forgetting where he was and panicking.

It is then that Paul Sartori stepped in. Without them we were not going to be able to bring dad home. We were so grateful to see them and were so thankful that they were going to help us bring dad home as soon as possible. They arranged for a hospital bed to be set up at home and any other aids that would help dad when he was at home. Dad was home within 2 and a half days. Paul Sartori were excellent and so professional.

They explained everything and offered us a 24 hour support service where if we had any worries or problems to give them a call. We were so grateful, they almost made things bearable. Each night a Paul Sartori nurse would sit with dad throughout the night so we could all get a good night’s sleep so we could care for him throughout the day. They helped to put dad at ease and he no longer panicked as he was in his bed in his own home with is own family, and he saw the nurses as his friends. They were a brilliant support for us all and we are so very thankful that they came to our aid when they did- we have so much to thank them for.

On the 1 July 2011, dad died peacefully in his own bed in his own house with his family around him- what he wanted, thanks to Paul Sartori.