David’s Story
Read about the memories of previous service users across the ages
These are David’s recollections of his wife passing away, and his admission to the Warneford Hospital which followed that. This was written less than 18 months after it happened, and therefore does not have the same perspective as the oral history interview David also gave the Warneford 200 project, which can be found here.
When I contemplated what it would be like in the days following the death of my lovely wife Anna, I could never have predicted the reality. Within 36 hours of her death I had been sectioned and spent the next seventeen days in The Warneford Hospital. This all happened in August 2014 and I have had more than a year to ponder why this happened and what the impact has been on me and my family.
With hindsight along with some counselling and searching self-analysis I am in a place where I want to write about this. Partly for my own benefit, partly for my friends and family who have supported me through this but also because it may help someone else who has a similar experience. I would like to explain from my own perspective what happened.
Anna’s first diagnosis
Anna was first diagnosed with breast cancer in 2003. We had been married for 9 years and together for 5 more before that. We had three boys aged 8, 6 and 1½ at the time. She underwent surgery, chemotherapy and radiotherapy in the following months. There were times during her chemotherapy where I was stretched to my limits, looking after her, the boys and working as much as I was able. I like to see myself as some kind of “new man” and had always striven to share as much childcare and household jobs as I could. As a result I was determined to cope and it was important to me that everyone thought I was coping.
Anna was by nature a great worrier and this made a diagnosis of cancer very hard for her. She constantly worried about her future and I tried to take the role of listener, reassuring as much as I could but endeavouring to take her concerns seriously too.
It was a long nine months before she finished all her treatment and she belatedly celebrated her fortieth birthday with a big party. Anna’s cancer was hormonal and so she was put on a course of tablets.
Over the next four years there were many scares as well as regular hospital check-ups which we always dreaded as they crept towards us, followed by massive relief when things were OK. It was not always an easy time but one of Anna’s strengths throughout her cancer journey was a determination for everything to be as normal as possible.
One of Anna’s strengths throughout her cancer journey was a determination for everything to be as normal as possible.
Years of treatment and uncertainty
After four cancer free years when we had begun to dare to hope everything would be fine, the cancer returned. Anna had secondary cancer on her liver and it had clearly grown more than the doctors had expected. Anna had to have another six months of chemotherapy – the anticipation of this was awful for her since the previous dose had made her so unwell at times. This time she lost her hair too, another blow to someone who would like life to be as normal as possible.
Fortunately the chemotherapy had the desired effect and six months later Anna made it to her younger brother’s wedding which had been a real target for her. She was put on a new hormone treatment but the consultant warned us, “The effects of the chemotherapy might last for 6-9 months or a bit longer if the hormone treatment is effective. So at this point we knew that Anna’s cancer would kill her and that she might not have a long time. At the time given Anna’s anxiety, this was more than she had expected.
In actual fact the hormone treatment kept the cancer largely at bay for another six years. There were once again scares and blips but we managed a relatively normal life. Anna got a part-time job and we went on family holidays abroad. I say relatively normal because throughout this period the hormone treatment made Anna fatigued and she often needed a sleep in the afternoons. She also went through periods of feeling quite low. She was helped by counselling and later anti-depressants.
Another symptom of Anna’s worries was that she was not a good sleeper. She had always been a person who struggled to sleep especially when she had things on her mind. Of course throughout her life with cancer there were times when she would be awake in the middle of the night when her worries were at their darkest. She would often need to chat things through over a hot milk in the early hours. I didn’t resent this, it was a tangible way I could help her, however it did mean that I also had periods of little sleep. This was particularly true in the last year of her life as she grew increasingly uncomfortable in the middle of the night and often benefitted from a massage.
I didn’t resent this, it was a tangible way I could help her.
The final months
By Easter 2013 it was clear that all was not well. Although both concerned about Anna having more chemotherapy I think we were both optimistic that it might have a significant impact, partly because the previous treatments Anna had undergone had exceeded expectations. However the next 12 months saw Anna have three different types of chemotherapy, none of which had the desired effect. Of course with each treatment came the appointments where this unwanted news was shared.
I want everyone to remember Anna as she is tonight at this party – it was a great success and she was radiant.
In January 2014 Anna celebrated her 50th birthday with a lively party for friends and family. At the time she was feeling quite optimistic but I found myself thinking – I want everyone to remember Anna as she is tonight at this party – it was a great success and she was radiant.
After the third unsuccessful treatment Anna was offered a final one which had only a slim chance of success. The doctors were not optimistic but told me that Anna’s body had surprised them before so it was definitely worth considering. We agonised as to whether it was worth trying and setting ourselves up for more hospital appointments and more bad news – but in the end Anna wanted to give it a go and I was clear that I would support her decision either way.
She started the treatment but other symptoms soon made it clear that Anna should stop. When the time came this was not a difficult decision. At this point I decided that I would like to know what Anna’s prognosis was. Partly because I needed to be realistic about my work and make them aware of when I might need some time off, partly because I wanted to give the boys a realistic idea of what was going to happen and partly because I was ready to know.
Up to this point I had always felt that there should be no secrets between us about Anna’s treatment and that I didn’t want to know stuff that Anna didn’t and vice versa. Indeed up to this point I had been to almost every appointment that Anna ever had and the vast majority of her chemotherapy appointments too. I worked out that I had been to The Churchill Hospital more than 100 times during Anna’s journey. Anna was always adamant that she did not want to know how long she might live. She was very scared of dying and anything that brought the reality of this home to her she found really difficult.
I worried in the latter stages that this might mean that she had not taken on board what was happening to her but I soon realised, after a session with a counsellor at our local Maggie’s Centre, that this was part of Anna’s way of coping. It wasn’t that she hadn’t accepted that she was going to die, but that her way of surviving the great fear of dying was not to dwell on the where and when etc. Anna was very supportive of my need to know more at this time and trusted me to use the information wisely.
Preparing for the Unthinkable
As a result an extra pressure on me at this time was to make sure I put as much in place for my students in September as I would certainly miss some of the autumn term. I am not usually well motivated or particularly well organised at this time of year but in 2014 I was determined that I should put as much planning in place as I possibly could. So this was fitted in around everything else.
We were also determined to have a family holiday if possible. We had considered doing this before the school holidays in case Anna had deteriorated by the end of July, however we decided that actually the boys might find this quite embarrassing and also did not fit in with Anna’s philosophy of always trying to keep life as normal as possible. An added complication at this point was that Anna had a regular build of a fluid called ascites. Eventually she had a drain fitted so that the fluid could be drained every couple of days. Whilst she was at home a district nurse would come in and do this but it would have been quite complicated to arrange on holiday so I offered to be taught how to do it. It was not an especially tricky procedure in itself but you have to work hard to make sure that everything is sterile which is quite challenging and time consuming.
We booked a holiday in a cottage near Wareham in Dorset. The weather was glorious – we could have been in Spain. It was lovely to get away but Anna was not well and struggling to keep any food down. In addition although the regular draining made her physically more comfortable it completely took it out of her in other ways. I’m so glad we all had a final week away, family holidays have always been an important part of our calendar, but for me it was really full on catering for the needs of Anna whilst looking out for the boys. Anna was also really struggling at night, so I did not come back feeling hugely relaxed.
Sobell House: The Last Weeks
We came home on Saturday, on the Monday Anna had her first appointment with a consultant at Sobell House, the local hospice. We had had few dealings with them in the past as Anna’s coping strategy meant she did not want to visit it unless she absolutely had to.
In my mind from this point on everything was full on, I took responsibility for cooking, cleaning, washing etc. Anna did not improve that week so on the Friday she was admitted to Sobell House to see if they could relieve her symptoms. At this time we believed this would take a few days and then she’d be home. The reality was that after a few days it became clear that this probably wouldn’t happen.
Sobell House is just over a mile from our house – five minutes in the car or on a bike, fifteen minutes walk. This proved to a blessing (especially when you see the distances some relatives are travelling) and a disadvantage. I put extra pressure on myself by trying most days to visit three times. Anna did not want lots of different visitors and I was confident that I was doing a great job of keeping her going and meeting her needs. I still think that in retrospect but it did add an extra intensity to my stress at the time.
At this time I was also trying to keep our wider families informed as to what was happening. I was keen that she should see her dad and her siblings at least one more time. I was also trying to keep the boys sensibly and realistically up to date. I began to put in place thoughts about the funeral and beyond that an event to remember Anna. I particularly wanted to make sure that Anna’s family were happy with my ideas. Anna asked me to set up an email list to keep other family and friends advised and I took over all the texts she received.
Sobell House was perfect in many ways for Anna and they were kind and sensitive to me. I was able to give Anna a bath every evening – the highlight of her day. This enabled us to have some relaxed and private moments together to chat, catch up and have a laugh. However this always came at the end of a long day for me and by now I was not sleeping at all well. There was always something to do, something to sort out and I was DETERMINED to cope.
I wasn’t completely unaware of what this was doing to me and tried to do some things to calm me down. I went for a couple of walks with a friend and we didn’t talk for the first half an hour – but my brain was in full gear and I needed to talk, sometimes about what was happening, sometimes about other stuff. I wrote a poem during this time which was read out at Anna’s funeral. I like creative writing but am usually disappointed with my efforts, however during this period of heightened awareness I was able to express my thoughts and feelings clearly.
I remember at this time asking a neighbour to take over the washing, saying, “I don’t need to prove to everyone that I can cope by doing absolutely everything – as I’ve already shown that I can.”
I’d been having long animated phone conversations with a friend of mine who wakes early for work every day at 6am. I decided these intense conversations were not a good start to my day and that we needed to stop. I started to leave my mobile phone downstairs as I had been responding to texts in the middle of the night.
I was, by necessity, very focussed. If I wanted to sort something out at the hospice for Anna, I’d go and speak with someone straight away. I had to focus hard on being calm and relaxed when visiting Anna, because that was what I sensed she needed. As I write all this down I can feel a twinge of the stress I was under. But underneath I was pleased with myself – I was coping.
It was clear in the second week that Anna was deteriorating, she spent more of her day asleep and could even drop off in the middle of a conversation. Her mobility was also reduced. Whilst having what turned out to be her last bath she was surprisingly calm and relaxed. She gently joked and teased me in a way that she had not done for a while. Perhaps she realised that the end was near and from my perspective all the things that needed to happen had happened and the people who most needed to see her for a last time had visited.
Anna’s death
The day of her death is clear in parts and rather blurred in other details. At this point I don’t want to share all the details of the day partly because I am not clear what I shared with others in the following days. I would like our close family to ask if there are things they want to know, but not to find out by reading this if actually they would rather not.
I was pumped up that day, full of what needed to be said and done and in my mind there was a clarity. However I believe I had started to share everything which was going on in my brain, unaware of what was appropriate, inappropriate or slightly delusional. My brain was constantly making connections, desperately trying to make good decisions, say the right things to the right people. I had tried so hard to be the right kind of support for Anna, the most supportive kind of dad and keep other people’s thoughts and feelings in mind and on top of all this I was chronically short of sleep.
I went to bed that night with a sense of relief, the horrible part for Anna was over. She’d managed to die with dignity and the thing she was most scared of was over and in a way she would have been proud of.
Although I’d slept alone for many nights, I decided that night I wanted company and allowed our two cats to sleep on the bed, something they are not really allowed to do. Despite taking a sleeping tablet, sleep would not come. I tried listening to a Buddhist meditation I had on my iPod however this seemed to heighten my senses. I know a little about Buddhism and convinced myself that whilst listening I had achieved “Inner Peace”. Of course it was not this but some kind of delusion I think. Unexpectedly it suddenly came to me that our two cats were reincarnations of two influential and charismatic women in my life. One was my Akela from my cub pack as a child and the other was one of my godmothers, a larger than life character. I can remember watching the cats, interpreting their every movement as signifying something. One of the cats walked out of the room and I followed her convincing myself that she was trying to show me something. Wherever she went I could find a plausible interpretation for what the cat was trying to tell me.
I was up early next day and already talking, talking, talking. Saying whatever came into my head without sifting out what was or wasn’t appropriate. There are several moments I can remember clearly that day including a visit to the undertaker where my mind kept wandering off and I would burst into hysterical laughter. Thankfully I can’t remember what I found so funny. However there were also moments of clarity so if a decision was being made about which I had a firm opinion (for example the type of coffin), I could be quite clear about what I wanted.
My mobile phone was a bit erratic that day and I tried to persuade one of my sons to go down town and buy me the latest most expensive iPhone. Fortunately my friends were in the background mopping up the results of my strange and erratic behaviour, although at the time I was unaware of this.
I had an appointment with a GP who prescribed me a stronger sleeping tablet as I was convinced my behaviour was symptomatic of a person who has chronic lack of sleep. Although I still believe this to be one of the causes, it was not until months later that I began to piece together all the other contributory factors.
My friends took me home and tried to get me to go to bed early that night after taking the sleeping tablets but by this stage my mind kept slipping into various delusions. The most powerful of these has remained with me – I’ll try and describe it even though it is more than a year since it occurred.
I believed my father, a clever man, had realised in the 1950’s that the world was becoming greedy and at some point in the future might need saving from itself. Together with a group of other intellectuals they decided that a child should be raised who would become a convincing saviour of the planet. This was not a religious movement but a clever plan to come up with a pragmatic solution if the world became unstable. They decided that when I was born I could be that person and they brought me up deliberately not allowing me to think I was not particularly clever to make me into a more engaging leader.
Much later it was decided that the best way to engage with everyone on the planet was to turn this into a massive reality TV show where I was the only one unaware that my life was consistently being filmed. (A bit like the film “The Truman Show”) They would set me all sorts of trials, the last of these was that my wife would die, or apparently die. I would be given the chance to try and save the planet or have her back. Every time I was given this choice I’d choose to save the planet. This was designed to make the most sceptic viewer convinced.
At times this got confused with religion, parts of “The Life of Brian” and a conviction that a close friend, a staunch atheist like me was really St Peter. At one point I opened the curtains of my bedroom expecting to see hundreds of people out there – of course when there was no-one there my overactive brain and imagination came up with an instant explanation which allowed the delusion to continue.
I believed I had to convince one person that I didn’t know to change their behaviour and become environmentally friendly and this might just convince the rest of the world who were watching the unfolding drama on television. This might be a million to one shot but it was worth a try. This delusion continued on and off all evening. I got the odd respite and was aware that I was out of control and needed help. When my friends consulted me I was able to rationalise this but the delusional thinking would soon return.
There was still this million to one chance that it was all real – and if there was that possibility, I couldn’t let the world down.
Arrival at the Warneford
I know that two very good friends of mine tried to protect the boys from the worst of my ramblings, luckily they had both been social workers and realised that I was not well. At some point that night I was taken to The Warneford Hospital voluntarily. Although initially calm and pleased to be there my delusions continued and I tried to persuade some of the other patients to change their ways and become a friend to the environment. At one point I ripped off my shirt and threw my slippers across the room – however in my head this was just acting for the hidden cameras which must be filming my every movement. I did have moments of thinking this was ridiculous, however there was still this million to one chance that it was all real and if there was that possibility, I couldn’t let the world down.
Eventually I was put in a room with a member of staff, during this time I had several powerful delusions. One of the nurses was a girl I’d met at college 35 years ago, even though she looked nothing like her. Another was a person who had written an article in The Guardian about grief a few weeks before.
Life on the Vaughan Thomas Ward
The first few days in The Warneford are a bit hazy. I did have a number of more minor delusions. I was convinced that one of the patients was an old school friend I had not seen for many years, although he did not resemble my friend, he did share a first name! The ward I was on is called The Vaughan Thomas Ward. I believed that this was a set up and that actually Vaughan Thomas was a pseudonym for me. I found a historical account of Clement Attlee, former prime minister and convinced myself that it had been left there on purpose so that I could find out about my ancestry which had been hidden from me for political reasons.
I had a number of visitors and I am aware now that my conversation moved as fast and manically as my mind was doing. Some colleagues from work visited me and said “it was like seeing David on speed” I began to build relationships with other patients and staff in this unusual but stimulating environment. I think this was hard for me because I had spent the previous two weeks regularly visiting the hospice and getting to know all the different staff who were looking after Anna. I’d had to be proactive to get what I wanted for Anna. Suddenly I was plunged into another new environment with a fresh set of people to interact with and get to know. However in this set up I was the patient and other people were deciding what was best for me.
I set myself the challenge seeing if I could get along with all the patients – quite a challenge in retrospect! The ward had a great mix of people and of course as a patient you have no idea what is wrong with any of them. Beyond this it is very hard to know what to take at face value, although this did not occur to me until much later. I can remember joking at the time that it might be better for me to have a luxury room to myself in a posh hotel with a psychiatric nurse on hand to keep an eye on me!
At the beginning I was constantly writing things down. Making notes of brilliant ideas I’d had. These might be about work, home life, Anna’s funeral – but it seemed vital to commit it all to paper. It was quite a significant moment when a couple of weeks later I binned it all.
I needed to calm down and get more sleep and I was put on a cocktail of drugs to help achieve this. I was aware that I’d been in quite a state and was determined to take whatever medication I was given so that I could get better and return home as soon as possible. This was my focus. I was not grieving for Anna – I believed that I had done all my grieving over the seven years I’d been aware she would die and I still felt hugely relieved that all her suffering was over. I was not especially worried about the boys, in fact they were being looked after admirably by friends and family, but I was unaware of this and unable to really think about the welfare of anyone on the outside.
During my stay I had lots of visitors which of course was lovely. I imagine now that this may have been difficult for some of the other patients who only received visitors occasionally if ever. On the outside my sister carefully timetabled my visitors so that I didn’t have more than three lots a day. However I felt the need to talk and put myself under pressure to show people that I was OK. In retrospect I imagine this may have had the opposite effect sometimes!
I had visits from the boys, at the time the younger two were under 18 and so had to have visits arranged in advance. One of the boys said later that I seemed rather arrogant on these visits. I still had quite a strong conviction that I could do little wrong. I trusted my own judgement to say and do the right thing, after all it had stood me in good stead over the last few difficult weeks. But I believe I was still struggling to sift out what things were appropriate to say and had no real filter to stop anything I was thinking coming out of my mouth. Perhaps some of my thoughts were wise and perceptive, I’ve no doubt that others were rash and ill considered.
Anna’s funeral was postponed for a few days to give me a chance of making it and indeed on the day I was allowed out. I was accompanied for the day by one of the nurses who did a brilliant job of blending into the background whilst no doubt keeping an eye on me. It was a small funeral for about 20 close family. I had given the funeral at the crematorium a lot of thought before Anna died. It was something I was dreading and something that I wanted to be as straightforward as possible for the boys. I polished the poem I had written in the days before Anna died and I was really pleased with it. My sister read it out at the funeral. Looking back it’s more about me than Anna, but in a way this reflects where I was at the time and I was able to express how I felt about Anna at the larger “Remembering Anna” event a few weeks later. Here is the poem:
Devenir Borgne*
Written in the spirit of a healing tale to help explain how it feels to be married to someone who lives with and dies from cancer.
The man had always had very good eyesight: no need to wear glasses; throughout his youth, blessed with 20/20 vision.
One day he noticed one of his eyes was not quite perfect. He ignored this for a while and his friends all said, “it’s probably nothing – just give it time to heal.”
But it did not heal and the weaker eye began to itch and become irritated. He more often observed a sad and solitary tear.
It soon became clear that there was something wrong with the weaker eye which was not functioning as well as it used to.
It was a shock in the beginning for him to realise he might lose the sight of one eye but gradually he got used to seeing things slightly differently.
A doctor tried several remedies to help the eye recover and when this failed, the doctor strove to keep it functional.
The man thinks that he will be able to cope with just one eye but he knows it will be difficult, particularly at the beginning.
He slowly gets used to the idea and so too, gradually, the weaker eye realises she will not be around for ever. This makes her sad and worried. How will her partner cope without her? They’ve always been so close.
The stronger eye has to work harder to concentrate and focus, making him tired. Both eyes care deeply for one another. The weaker eye is increasingly anxious that she’ll soon be unable to see.
The man feels he will adjust to having one eye and that he will still appreciate beauty but that it will somehow not quite be the same.
One day he realises the time is nearby for the weaker eye to go completely blind. Soon she sees mainly black with short flashes of light reminding the man of being able to see with clarity.
The flashes become less and less frequent and the colour is disappearing too.
The man still thinks he’ll cope with one eye. He’s got used to the idea anyway and he senses the weaker eye is not keen to hang around.
The man believes he will adjust and that things can still be beautiful.
The man realises that his one eye is now very precious and he must look after it really well because the rest of his body relies on it to get around.
*Becoming blind in one eye.
Dedicated to Churchill Hospital Breast Cancer Clinic, Sir Michael Sobell House in Oxford, Maggie’s Centre Oxford and Vaughan Thomas Ward at The Warneford Hospital.
The funeral seemed to go well, for me it avoided many the bits of some other crematorium funerals I had been to. I hope it was alright for everyone else too, I don’t really know as I was still very focussed on myself. However it felt right and appropriate. Afterwards we went back to the house where a great spread had been prepared and the family mingled. Both sides of our family are good on this sort of occasion, friendly, supportive and able to enjoy each other’s company even under difficult circumstances. During the afternoon I found I didn’t want to be with everyone and so spent time with one or two people at a time – it felt a bit like I was holding court! In hospital that morning I had written down three questions for each person who would be there. In return they could ask me one question. In the end I managed to speak to about half the group, but did manage to catch up with the people who I had not seen since Anna’s death.
I was pleased with how the day had gone but completely drained by the time I got back to hospital. I felt I would benefit from talking to one of the staff about my day. However it is not always possible in a busy ward and it was clear that evening that some of the other patients were a much greater priority than me. Things were kicking off and it was obvious that the wellbeing and safety of other patients had rightly taken priority over me. Eventually much later in the evening I found a compassionate ear from the cook, a lovely lady who took me to one side and asked me how the day had gone and allowed me to let some of it out.
The whole of that evening was very stressful as the staff were at full stretch. I was quite proud of myself when I finally climbed into bed for coping with everything that day.
Finding Rhythm on the Ward
I embraced life in hospital, my table tennis improved immeasurably, although rather than calming me down, the intense rivalries between patients and staff made me focus intently. I was good exercise though. There were opportunities for discussion, exercises, relaxation sessions, watching and discussing documentaries, listening to music and playing board games. There were several patients with whom I developed a real affinity. But at times it was not a relaxing place to be. The television was constantly on and there were few quiet places to escape.
It began to come clear to me that I was not in as bad a place as some of the other patients. It also gradually dawned on me that I had to try and calm down, listen more to other people and ration the number of activities that might get me over excited like table tennis and badminton. One of the frustrations of the ward was constantly wondering if my patience was being tested as part of the assessment of me by staff. Often trying to ask for something (many of my personal posessions had to be locked away – razor, mobile phone – I understood why this was) took ages because the staff were stretched. In addition they clearly had to use a number of agency nurses who understandably were not familiar with all the procedures. In retrospect I don’t think my patience was being assessed, but it was frustrating. Once I timed how long it took to have a shave, from requesting my stuff to returning it. It was nearly an hour. I do not recount this as a criticism of the staff, overall almost every member of staff from consultant to cleaner was friendly, respectful and professional. I had huge admiration in particular for the nursing staff who are really at the sharp end and managed to deal with it all with professionalism and good humour.
Almost every member of staff from consultant to cleaner was friendly, respectful and professional.
Towards the end of my stay I was beginning to get a bit bored of the place and struggle with the constant stimulation. On many days my iPod was my saviour as I was able to shut myself off with relaxing music. In my final consultation with the consultant I realised that the most convincing way to show that I was better was to wait and answer his questions rather than produce a huge list of reasons I was better as I had done the week before. Within two hours of this consultation I was out, after seventeen days. Looking back I feel this was quite an achievement when I consider how unwell and out of control I was when I first went in. I was still on medication to keep me calm and help me sleep.
Coming Home
However I thought by this stage I was pretty much back to normal. Looking back it is easy to see that I still had a long way to go. For the first couple of weeks I had relatives to stay and support us all. I found that I would still be very intense with visitors – full of ideas and conversation. To some extent I was once again desperate to prove I was OK, particularly when meeting people for the first time since Anna had died. I was still in denial about grief believing that I had somehow bypassed this process.
I was also registered with a day care centre at the Warneford for the first four weeks or so after my discharge. I readily agreed to go in two or three time a week and went to mindfulness sessions, pottery and art workshops and visits to the gym. The group at the time was quite quiet and it was hard not to dominate the conversation. As on the ward there were often frustrating delays in waiting for staff or activities and sometimes I still wondered if my patience was being tested, literally!
The day centre gave structure to my week but it soon became clear to me that I was less needy than some of the other patients, so it was no surprise that I was not there for many weeks. As with all the medical services I have encountered over thirteen years, it was fortunately on my doorstep. The Warneford is five minutes on a bike from our house so I was able to pick and choose the activities I was interested in but found I’d usually had enough by 2pm and could just go home. I was still capable of over the top behaviour. At one point I remember reading a small book I really like which helped you reflect. One night I went home and ordered ten copies on Amazon feeling that I must share this book with others. All ten are still in a drawer in my bedroom more than a year later!
I was also under the care of a community psychiatric nurse at this time who I met 3 or 4 times. She had herself had breast cancer and seemed to understand my need to deny that I was grieving. The consultant who had discharged me had also been very clear that I should have some bereavement counselling – I was not keen but we compromised in the end and I went back to the counsellor I had been seeing at The Maggie’s Centre.
The drugs I was on made me rather lethargic and tired at times and I often found myself having a rest in the afternoon. I found this a bit depressing.
Remembering Anna
In the early days after my discharge my focus was on organising a “Remembering Anna” event. In my manic few weeks before Anna had died I had given this much thought and even sorted out a venue and asked a friend to act as my atheist vicar. We chose a Saturday in late October. Unlike the funeral I was determined to speak. Unsurprisingly I had written something several months before when I couldn’t get it out of my head. However when I revisited this writing it was a bit self indulgent and over the top – two things Anna wasn’t! One day I came up with the idea of a powerpoint presentation, something I use at work on a daily basis at work using the slides to structure and illustrate what I am going to say.
I was keen to dispel some of the myths around living with cancer and try to give people a realistic insight into how she had coped, hoping to show that she found a way that worked for her which is what I think everyone needs to do. Of course I also wanted to share with everyone what a wonderful wife and mother Anna had been.
The Remembering Anna Event was very successful I think and allowed Anna’s friends and wider family and opportunity to share their grief and support one another. It was a comforting blend of tears and laughter.
The Remembering Anna Event was a comforting blend of tears and laughter.
The Slow Road Back
I was signed off from work all this time and strongly felt I would like to go back after Christmas. In fact I went to one or two meetings to see what else I might usefully do before then but found that my levels of concentration were very poor. How much of this was down to the drugs and how much to the trauma suffered by my brain I am not sure. I met regularly with my supportive GP, discussing going back to work and gradually reducing my drugs. On Christmas Eve 2014 I took my last dose of Olanzapine and the day after had my first glass of wine for four months.
Gradually during this period I began to take more and more responsibility at home. I found it hard to read books as my mind would constantly wander. One of the best therapies was playing chess with a friend. He very kindly pointed out my errors and gave me another chance to replay awful gaffes. The great thing about it was that it took all my concentration and after a game I felt strangely calm. Perhaps this was the effect of the mindfulness that chess appeared to bring on.
Looking back I find it hard to remember much in detail about this period. I was a bit down which I put down to the drugs and perhaps not having enough to do.
We went away for Christmas to stay with one of Anna’s brothers and his family. It was good to get away and I think we all appreciated doing something different from our normal routine.
BUT….it was very hard to come back to a cold and empty house. It didn’t feel right Anna not being there to help sort out the stuff when we got home and the house seemed eerily quiet somehow. The week after Christmas and then New Year felt flat and horrible. I felt drained of energy and enthusiasm, waking early in the morning but struggling to get out of bed until hours later.
It didn’t feel right Anna not being there – the house seemed eerily quiet somehow.
During this period it began to dawn on me that I had failed. My great hope towards the end of Anna’s life was that I would come out of the other side with people thinking how well I was coping but what had happened was that within 36 hours I had landed in The Warneford. I also felt that I was letting Anna down. She had coped with living with cancer and managed to maintain a relatively normal lifestyle – why couldn’t I do the same? This was the start of a period of feeling really depressed and an acute feeling that I was still not coping well.
This all coincided with my phased return to work, two days a week to start with. One of my first tasks was to do some marking of student assignments. The topic was one that I had marked many times before but I found it really difficult to concentrate or think of any constructive feedback. This undoubtedly added to my low mood.
I am aware that throughout my writing so far I have hardly mentioned the boys. On the whole they seemed to have coped so well. I’d ask them how they were now and then, but generally they appeared to be able to just get on with their lives. Sadly in some ways this made me feel a bit inadequate – they seemed to be coping so much better than me. But of course had they not been coping this would also have added to my woes. It’s so easy to find a negative perspective when you are depressed.
Grief Arrives
Realising that all was not well I talked to friends about how I was feeling and I caught almost a sense of relief – perhaps David is at last understanding the impact of grief. Certainly the drugs I had been taking can have a side effect of deadening your emotions. I found myself withdrawing to my bedroom and just spending time lying on my bed beating myself up for not being capable of functioning better.
I was also concerned that I needed to be aware of my own mental health and be honest about how I felt as just stoically continuing like this was doing me no favours. I talked to my GP who suggested anti-depressants – however she was cautious as they might trigger another psychotic episode so she referred me back to a consultant at The Warneford who talked it through with me and discovering that I had joined a choir and played chess and tennis regularly, gently persuaded me to try and avoid them for now.
At this time I also began to feel that the counselling I had received from Maggie’s was no longer quite right for me. It had been great helping me cope with Anna’s cancer but the style of it was very much helping me come up with my own solutions to the worries I was dealing with. The grief I was now suffering from was different and I didn’t know how to help myself.
I arranged to see a bereavement counsellor at Sobell House. Very quickly she helped me see that I needn’t beat myself up for ending up at The Warneford. I had been through such a lot and taken huge responsibility over a long period of time and as a result what had happened to me was hardly surprising. She also helped me to understand that it was still very early days, particularly since I had only just started the grieving process.
Gradually I began to feel better about myself and over the coming months I had some periods of feeling quite up and almost back to normal. But if I’ve learned one thing about grief, it is that it is unpredictable. When I first started writing this reflection I was keen to be writing from the perspective of someone who has come out the other side and is back to normal again. Perhaps this is once again indicative of my need to show everyone that I can cope. However life with bereavement is not like this and I have had a series of ups and downs. I have continued to see my bereavement counsellor when I need to. It was a huge relief to have got past the first anniversary of Anna’s death, but it was followed a few weeks later by another period of depression. I can see that the second year throws up other challenges – you spend your first year just trying to survive but in the second year you can feel a pressure to move on.
If I’ve learned one thing about grief, it is that it is unpredictable.
It is hard for me during a rough patch to know whether the mood swings I have had over the last year are due to depression linked to grief or a return to some instability but I rationally I believe they are due to the former.
There are of course lots of things I miss about Anna. One of the hardest things is not having someone to talk to every day, to share your worries, knowing that person will listen sympathetically because they understand you as a person so well. When I hit a low patch it is hard to talk to other people and as a result you let it go round and round in your brain. The start of moving on from each low patch seems to be talking to someone and admitting your own vulnerability. It is not an admission of failure and actually a stronger signal that you are coping than simply bottling it all up and putting a brave face on it. I am beginning to learn that lesson – I think!
Looking Forward
So what next? I feel an underlying sense of optimism about my life. Things will gradually get better and my ups will last longer than my downs. I am aware that this experience has undoubtedly changed me, in some ways definitely for the better. I wish I had not ended up in The Warneford and had a major psychotic episode. But I do understand why it happened. I’m still not sure how I could have prevented it and I would like my friends and family to know that I don’t think they could have helped prevent it either. However I think and hope that I’d recognise the warning signs if started to happen again. I am told there is a really good chance that this was a one off and that it is common in families where there is some predisposition.
But I am not ashamed of what happened and I wanted to tell my story partly because I sense people are reluctant to ask me and don’t realise that I am very happy to talk about my experience. It is fascinating to look back on, I remember some of it with such clarity whilst other parts have definitely faded and some things I am completely unaware of. In a way it’s a bit like having been very drunk and recalling the night before.
My time in The Warneford also gave me a real perspective on mental health issues. Many of the people I met will not make as good a recovery as me and may find themselves in and out of hospital for the rest of their lives. I have bumped into a few of the people I met along the way and most are still struggling in one way or another. I am lucky, I had a really happy marriage and I still have a wonderful family and such supportive friends to whom I will always be grateful and positive things have already come out of this difficult experience. I still feel a strong need to show that I am coping but am beginning to recognise that for me I have to do this in my own way very much as Anna learned to cope with cancer in her own way.
I am lucky, I had a really happy marriage and I still have a wonderful family and such supportive friends to whom I will always be grateful.
