Seems I only thought January 2017 was a poor month........... January 2018 makes last year look like a doddle!
A huge amount has happened and I’ve been unsure what to write or how much to say, but I think the time has come to try and summarise, with apologies for any duplication of information already in previous posts. Truthfully, I’m also a little embarrassed by the pure melodrama of the whole thing. We all love the odd bit of dramatic writing and hearing a big story, but this one makes me feel embarrassed. A part of me is cringing, but it’s a story that needs told too......
As you know, in January 2017 I was unexpectedly diagnosed with an incurable brain tumour. Barely having time to accept the information, I was then quickly thrown into a treatment cycle. In Feb/March in underwent two brain surgeries at RVH (the second an ‘awake surgery’ and left behind a bit more mental trauma). On 22 February I took a seizure in RVH and was put onto an additional anticonvulsant medication called phenytoin.
In March I was sent to an oncologist who I instantly disliked and found to be arrogant and unprofessional. I spent a long time berating myself over my feelings for her, and eventually persuaded myself she wasn’t so bad and that we didn’t need to be friends anyway. I doggedly opted to do what she told me to do and trust her as the expert. Despite sometimes feeling unsure, I gritted my teeth and committed to doing everything I was told. I completed 30 radiotherapy treatments, carried out every day for 5 days a week, for 6 weeks. I felt side effects, but generally ok and was doing well. During radiotherapy I met with my oncologist once. After I became upset she questioned my emotional ability to cope and took me round to see the “girl who does the touchy/feely stuff”.
In April I had a brief meeting with a neurologist. Unfortunately it seems he was also very busy, so my appt was mostly spent with a young registrar who spent much of it looking at WhatsApp messages that kept pinging up on her phone. I asked about the phenytoin and also the other anti seizure medication I was on (keppra), expressing my concern about long term usage and side effects. Attempts were made to get rid of the keppra, but I found the side effects intolerable and refused to change.
In order to reduce constant trips to Belfast it was agreed I would transfer to a local neurologist, who I met with in July. There was a discussion about medication and some dosage changes made. I was told I’d get a further appt out to review. This appt never came.
Then I committed to 6 chemotherapy cycles, to be carried out every 6 weeks starting on 4th July. The first one went ok. Cycle 2 however just kept getting delayed. My blood results weren’t good enough for it to be started, so I had weeks of travelling up for treatment then not to take place. My sister faithfully travelled over from Manchester every week to take me up and inevitably bring me back home without having being treated. During this time I rarely saw my oncologist, and when I did it was abundantly clear she had no time or interest in anything I had to say. Eventually I reached an agreement that my bloods could be taken locally the day before proposed treatment, to save my sister’s constant travelling back and forth. Chemo cycle 2 finally began in September.
Attempts to have cycle 3 went the same as cycle 2, with constant blood taking and being told the results weren’t good enough. Finally one Monday in November I got the news that my bloods were up and we were ‘good to go’. My sister duly travelled over and the next day we went up to start cycle 3. Bloods were taken again and then we were brought in to be told by a young registrar that things had changed and my chemo was being permanently stopped. I was totally caught by surprise and was annoyed the news had been delivered by someone other than my own oncologist. I had seen my oncologist around the clinic, along with my allocated clinical oncology nurse (another woman I had barely seen or spoken to) and questioned why they weren’t talking to me themselves. The poor registrar spent much of the meeting running in and out of the room, getting answers to be delivered back to me.
We were told the next step was another scan and pushed hard to get this done as a matter of urgency. It was carried out on 22 Nov and I was told I could make an appt with my oncologist if I wished to go through the results!! I made the appt but it was for 18 January 2018 so there was quite a wait. Just prior to Christmas I received a phone call from the oncologists secretary to pass on the news the scan results “looked good” and that I should relax and enjoy my Christmas. In the end up I didn’t get to this appt anyway. By that time I had been admitted to Causeway. Transport was arranged to take me to the appt but ice caused a delay. The hospital phone to let oncology know I’d be late. We were told not to bother coming as we wouldn’t be seen if we were late!
As time had been going on, and particularly in the run up to Christmas, I had found myself developing various issues. These were reported to a number of people including GP and oncology Helpline. Each was dismissed, often as emotional or anxiety based issues. I was told I no longer had access to the oncology Helpline as I wasn’t getting chemo anymore.
I fought hard to stay physically and mentally well, often forcing myself to go for quick walks despite being very unsteady on my feet. By Christmas I’d begun to veer off to one side at random. I meditated and had aromatherapy and reflexology regularly to prevent panic attacks.
On 6th Jan my left leg simply wouldn’t carry me. I was tired and confused. My sister and husband took me to A&E who checked me over and sent me home.
On 8th Jan I could barely stand up. My eyes were rolling in my head, I was dizzy and sick. My husband and son again brought me to A&E. A local consultant discovered levels of phenytoin in my system of 68 (over 50 usually result in coma and I was told they’d never seen anyone with levels so high that wasnt on a ventilator). I was admitted and work began to get the phenytoin out of my system and control the symptoms. A scan was authorised by the local consultant after my oncologist refused to get one done. Thankfully this scan showed no progression of the tumour, indicating my condition was due to the phenytoin levels. Macmillan became involved and local consultants have worked tirelessly alongside them. At one stage my family were told I was dying due to the poisoning, and I can honestly say that I felt the same way. I tried to stay strong and keep laughing, as the whole thing seemed so unbelievable anyway. Sometimes I knew I was dying, sometimes I trusted the local team wouldn’t let that happen. The latter was correct.
What a drama, huh?! So where are we now? I’ve been in hospital for 3 weeks. I’m very hopeful to hear today that phenytoin have significantly reduced, if my symptoms are to be gone by. I have had friends, family, colleagues and nurses in tears at the trauma of seeing me near death. It has been horrific. I am relieved and a bit overwhelmed by what’s happened. I am furious that such mistakes could have been made and that I was essentially poisoned by the ‘team’ supposed to be looking after me. I feel aggrieved by the lack of compassion and time. I feel sad for those who’ve been traumatised by what has happened, in particular my husband, son and sister. I feel alarmed that this level of mistake could be made and know I have a duty to progress some form of action to ensure it never happens again.
I think that about covers things. There is recovering to be done, both mentally and physically. There is information to be gathered and a report to be drawn up. There is a course of action to be decided upon.
Who needs soaps when real life is so dramatic? Sometimes I feel like I’m about to have a Bobby Ewing moment, but unfortunately that’s not the case.
So that’s basically the story. Priorities now are recovery and action, whilst maintaining calm and relaxation.
Xxx
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