My Wife’s GMB4 Journey

I have posted my story elsewhere in the forums but thought I’d share it here too so people can see what my experience was on this horrendous journey than none of us want to go on. If it helps in any way then at least my sharing is worth it:

My wife, best friend and soul mate of 22 years passed on the morning of Saturday 3^rd December at just 46 years old. I am shattered, broken and don’t know how I’ll ever function properly again. The last 4 1/2 months of our lives together have been a complete whirlwind since she first went into hospital on 20th July. She had been suffering terrible migraines for a while and went to the opticians to see if it was something to do with her prescription causing the migraines but after failing tests was referred to an eye specialist at the district hospital. More failed tests there and she was taken to A&E under suspicion that she may be having a stroke, but after CT and MRI scans we were told that there was a “mass” on her brain and we would need to await neurology appointment to confirm. She was kept in a ward in hospital for 5 days on high steroid dosage under supervision before being discharged home to await an appointment. We had been together for 22 years - since I was 19 years old - but we were getting married this year so just 3 days after being discharged - and 8 days after being told this terrible news - we had our wedding day. We got through the day and managed to enjoy it as much as we could and she was happy for those few hours knowing that getting married was what she had wanted for so long. 5 days later and we had our appointment at the neurological specialist in Hull where our world was changed forever. We were given the news that her tumour was aggressive grade 4 glioblastoma. Even at this point Claire was bring her pragmatic and positive self, and just asked “okay what do we do next”. After going through the options with the neurologist she decided she wanted to get straight to the de-bulking surgery so off we went back home - that hour long drive seemed the longest of my life. We had a week at home with her continuing on the steroid medication before our appointment for surgery came through. Off we went back to Hull on 11th August to be admitted to neurology. That night was just awful - Claire slept in a bed whilst I sat on the chair next to her sick with worry for hours. The one saving grace is that they came for her early the next morning to go down for the surgery so at least we didn’t have to wait all day. I kissed her and told her I loved her and as they took her away she was still being her positive self … “let’s just get it done” was her last comment before going! I went back to the car to drive back home and just sat in there crying my eyes out - I don’t even know how I managed to drive home that morning. 

The surgery went well – in so much as they managed to remove most of the tumour – however due its location in her brain and the amount of tissue that had to be removed, the surgery caused Claire to have a stroke. She had been paralysed on the right side of her body and couldn’t communicate very well. Seeing her that next day was heartbreaking but was nothing compared to what was to come. The next 11 days were spent in Hull recovering from surgery together with physiotherapy and speech therapy to try and regain some of her movement and communication skills. I travelled backwards and forwards from York each day and that journey just seems to be a blur. On 23^rd August – our eldest sons birthday - Claire was discharged from Hull back to York hospital to continue recovery there so she could be closer to home. Over the next few weeks Claire did improve in her movement of the right leg such that she was able to walk with the aid of a quad stick and with support of somebody else by her side, but she never regained any movement in her right arm. Her communication did also improve a bit so we could manage to have some form of conversations, though it was very frustrating for her at times because the words she wanted to say often came out as something completely different. Her steroid medication was also slowly weened down to a lower dosage. On 15^th September we had an appointment at a different hospital in Hull with the oncologist to discuss next steps – i.e chemo. Claire was transferred across via ambulance whilst I drove and met her there. Due to the stroke and her weakness as a result however, we were sent away with the advice that she was not yet strong enough to start any chemotherapy treatment and so were told to go back in 2 weeks to see how she had progressed. The oncologist also put her steroid dosage back up to try and get the swelling down in her brain. After another 8 days back in york hospital recovering, Claire was ready to be discharged home and on the 23^rdSeptember she was so happy and positive about coming home and we thought being back in her own bed and with family around her would speed up her recovery so we would be able to get cracking on with the chemotherapy and kill off the remaining tumour that was left behind. We had the community nurses coming once a day to help with her care – showering, changing and help doing her physiotherapy exercises – and for the first few days back home, things were really positive. She was happy and her communication continued to improve. However, as the week went on Claire started to deteriorate and became more sleepy and less communicative, and became very irritable with the nurses coming such that I had to ring them on several days to tell them not to come. Her oncology appointment on 29^th September - Claire’s 46^th birthday - had to be cancelled. By the morning of 1^st October she had become so unresponsive and sleepy that I was so worried and called an ambulance to re-admit her to hospital. It was heartbreaking seeing all the progress she had made and now she had to go back in to hospital. Claire had several MRI scans over the following days and this is when our world was destroyed forever – we were told that the tumour had spread to another, deeper part of her brain and it would be inoperable and terminal. I don’t even know how much of this information Claire was able to take in because she could not communicate her thoughts and feelings and this just made it completely unbearable. The worst news you could ever receive and I couldn’t even speak with her about it in any meaningful way. So now we’re told that there’s nothing more medically that can be done and she would be discharged home for palliative care which happened several days later on 7^th October.

The period at home with Claire over the proceeding weeks was so painful to witness. We had the hospice at home service coming for the first couple of weeks until a care package was put in place, but as previously happened with the community nurses she didn’t want them coming so it ended up with me doing everything - which I was more than happy to do but was emotionally and physically exhausting. Claire had decided she wanted to give chemotherapy a go despite us knowing it was only palliative and so we had another trip across to Hull on 13^th October to see the oncologist again. We had managed to get to a point that we were able to get her down the stairs with lots of effort between us, so she decided she wanted to go across in our own car this time. It was agreed for her to start the treatment in a further 2 weeks (more time to gain strength back) so back again to Hull on 27^th October but this time she had to go across in an ambulance as getting down the stairs had become too much for her by that point so we needed the help to get her down (and back up again when coming home). We were expecting to come home with the treatment that day but were told we’d have to go back again to have the consultation about taking the chemo drugs! So yet another trip from York to Hull was needed 8 days later (again having to get an ambulance to transport us across and back again!) for us to be able to get the course of chemo tablets. All this back and forth to Hull in Claire’s ill state was really taking it out of her and it had now been 11 weeks since her surgery. However at least now we could actually start, and on 5^th November she had her first dose of treatment. The first 3-4 days on the treatment Claire was just completely wiped out and just slept most of the day other than to eat or go to the toilet but at least there was no sickness. Then strangely from the 4^th day onwards she became completely the opposite – very awake all day and wanting me to be with her every minute, wanting to make lists of random words, wanting to take multiple photographs of the most random things (like her food and things that came up on television adverts). I knew this was all because of where the tumour had spread affecting her brain but it was just so hard to witness this behaviour. And so the next three weeks continued on like this and Claire’s condition gradually worsened – communication became more difficult, she became incontinent and caring for her at home became so physically and mentally exhausting. On 23^rd November I made the horrible and most difficult decision of my life to refer Claire to go into hospice for care – the Macmillan nurse that was visiting us every other week was shocked that I had managed for as long as I had looking after her on my own and made the referral straight away, and luckily there was a bed available for her and on 25^th November she was transported to the hospice in York. I knew in my heart it was likely that Claire would not be coming home again given her condition so this was the most heartbreaking thing I’ve ever had to do.

Claire was in the hospice for just 8 days – her condition continued to deteriorate through that time and she was gradually given increasing doses of the “just in case” meds. I said goodbye to her on Friday 2^nd December as I left to go home for the evening, telling her I loved her and that I’d see her together with our two boys the next day. But as I called the hospice on the morning of Saturday 3^rd December to see how she had been over night I was given the devastating news that she had passed away just minutes before my call. My world completely imploded at that moment. I knew her prognosis wasn’t good and that this awful disease would take her away from me eventually, but for it to happen as quickly as it did just tore me apart. I was hoping we’d have one last Christmas together at the very least. We will be saying our last goodbye to Claire on 9th January.

Everyone’s journey will be different I’m sure encountering this dreadful disease - I just hope by sharing ours it gives some people the comfort that they are not alone and there are others on here that are / have gone through the same.