Practice A Patient’s Journey

Living with a benign brain tumour

BMJ 2009; 339 doi: http://dx.doi.org/10.1136/bmj.b2886 (Published 28 July 2009) Cite this as: BMJ 2009;339:b2886
  1. Anne McDonald, retired GP 1
  1. 1Romford
  1. Correspondence to: Anne McDonald somerledmcd{at}btinternet.com
  • Accepted 9 January 2009

After surgical removal of a benign brain tumour, Dr Anne McDonald suffered residual neurological defects that led to her retirement. She has found the symptoms and their effects difficult to come to terms with

“You have a tumour in the fourth ventricle.” Shock. Sudden scrabbling in the memory for anything I learnt at medical school about neuroanatomy—that was over 30 years ago! I realised two things: first, the doctor was doing his utmost not to call it a brain tumour, and, second, he was watching me with trepidation to see if I would burst into tears. “I will refer you urgently to the neurosurgeons.”

From my symptoms I had already self diagnosed an acoustic neuroma, and had little idea about the implications of this new diagnosis, except that it was a brain tumour! My immediate thoughts were of the last patient I had looked after with a similar diagnosis. He was dead within six months; it had been like an immediate death sentence. So how long did I have? Would I see either of my sons graduate? What would my husband do? This crystallisation of priorities increased my determination to stay alive.

Unsurprisingly, nobody was prepared to give my husband and me any predictions for the future, and I was told exactly what I had been expecting—that it was impossible to make an accurate diagnosis without tissue samples. I was given the choice of urgent neurosurgery or waiting for six months to see if the tumour grew. Would I be alive in six months’ time to make a decision? I felt that I had no option but to go ahead with the surgery. The only potential complications I remember being discussed openly were dementia and incontinence. As the doctor saw the look of frozen horror on my face, our discussion ceased. Perhaps I should have asked more.

Two months later, in March 2005, the tumour was removed, and I was fortunate to have survived a difficult operation and its complications, thanks to the competence of the neurosurgeon and his team. It was a benign subependymoma, and I have residual neurological defects necessitating medical retirement. I have found both the symptoms and their effects very difficult to come to terms with, and retrospect always brings more questions.

The intensive care unit and the high dependency unit were both distressing and lonely places to be. I have memories of both, even though the medication I took means I’m not supposed to be able to. It was frustrating to be paralysed in the dark, but able to hear people around me discussing me in the third person rather than addressing me directly. My musical abilities had not gone, so I could identify the speaker by the “music” of their voice, which was very upsetting if they wanted to “write me off”! I would have valued anyone coming and talking to me as a normal human being, even if my body was apparently on its last legs.

Continuous positive airway pressure is extremely unpleasant and seemed, if anything, to make it more difficult to breathe. I was not compliant with it, and the disintegration of the apparatus was partly my fault—nobody suspected that I was “with it” enough to have figured out both how the apparatus worked and how to sabotage it! Perhaps the design could be modified?

At times I was very distressed because much of the experience felt so humiliating. I was actively discouraged from crying, although it might have proved helpful.

Even now, my memories of hospital are painful.

I didn’t see the consultant neurosurgeon who operated on me until after his return from holiday, by which time I had become an outpatient. During my hospital stay, junior members of staff had repeatedly mentioned the possibility of radiotherapy, which implied to me malignancy or, at the very least, secondary tumours. The internet was not helpful in clarifying my situation and prospects, and my husband banned me from looking up my diagnosis because he thought it would cause too much distress.

I spent the weeks before the appointment with my consultant in a haze of anxiety, sorting out finances, papers, and wills. However, on my outpatient visit, the consultant removed the threat of radiotherapy. The effect of being categorically told that no further treatment was needed was indescribable!

After my consultant emigrated, my care was transferred to his successor, who reviews me with magnetic resonance imaging.

Support

It would have been helpful to have been given details of a local support group. The only one I have been able to find is Headway (www.headway.org.uk). Unfortunately their regular meeting was on the only night of the week that my GP husband was guaranteed to be home from work, and we decided not to get involved. I now feel that this was a mistake, but we were both in shock and struggling to cope. A care package had not been organised, and we were very much on our own. I have trawled the internet for any other relevant organisation, but drawn a blank. Perhaps readers can help?

There has been no map for my journey, and I have had no companions. I was given little idea of what to expect, and am usually told, even at my specialist outpatient clinics, that “we don’t have many patients like you.” Perhaps I should have insisted on being referred to a major centre where I could have met patients with similar problems, whose experiences, I believe, might have offered a great deal. The internet has been helpful for looking up the neuroanatomy involved (for example at www.netterimages.com). No doctor has been able to explain to me my rather complicated neurology, perhaps because of lack of time. But I find the need to know why my physical state is as it is compelling nevertheless. With a little time, and three dimensional mental imaging, it has been possible for me to form an understanding of my condition—but what of the patients who are not able to do this because of lack of knowledge or ability?

Community physiotherapy was of paramount importance, although I had to be persistent to get it. It was very hard work, but it gave me direction, focus, and, vitally, hope. The positive attitude, knowledge, and encouragement of the physiotherapists were instrumental in my achieving major improvements in the first year after surgery. I had to be motivated, however, or physiotherapy would have been a waste of resources.

There was an administrative mix up about community occupational therapy, which meant I was not seen at home for about nine months. I didn’t chase because I didn’t know I’d been referred! The aids, once obtained, were very useful, though.

I would not be where I am today without the major support of family and friends. They have, when necessary, also been critical of my lack of awareness of my physical state and needs, which has been hard to take at the time, but usually correct.

I also have a physiotherapist friend who is continuing to treat me, without whose experienced input I would not have the abilities I have today, and to whom I remain indebted.

My GP has been most helpful, mainly for providing prescriptions and filling in the innumerable paperwork necessitated by my changing roles and lifestyles. She and I have remained in contact throughout my treatment, and I have known that she is there if I ever need her.

I have seen a psychologist for debilitating flashbacks to my time in hospital, which are triggered by unexpected things—as, for example, when I was sitting in a totally different hospital’s cafe and became aware of the smell of the wards coming through the heating system. Getting into the system required dogged persistence on my part, but it was certainly worth it. I believe that patients who have brain surgery are now routinely seen by a psychologist during their hospital stay, and I hope this will make such problems less likely to arise.

Coping and what is needed along the way

My symptoms vary daily. Tiredness and poor sleep are definitely deleterious, as are stress and overstimulation. There is a “brick wall” point where I am forced to stop. It feels like a mental “traffic jam” where making decisions, thinking at all, and even talking may be impossible. I find that the only answer is rest, with me lying flat to stop as much excess sensory input to the brain as possible, especially from the head and neck muscles, for at least 30 minutes. I then become aware of the traffic jam clearing, which is a great relief.

My sympathetic nervous system has also been affected, so I now drink decaffeinated tea and coffee to reduce palpitations. Even a splash of wine is enough to cause effects, which my family find hilarious, but which I prefer to avoid. Central coldness (very different from just feeling cold) is unpleasant, but I can cope with it by having a hot drink and as hot a bath as I can tolerate, and by getting into bed with a thick dressing gown on under the duvet until it passes, again usually after 30 minutes or so. Flushes require the opposite. There can be a demarcation line across the body between the two, both occurring at the same time.

Progress has been painfully slow, but it has been made, and it is very easy to forget how far I have come. I found making very specific lists helpful. I list what I can do now and couldn’t do six months ago. It is depressing to list what I can’t do now, unless my physiotherapist and I are focusing on an achievable goal—how, for example, to get out of the back door to put something in the dustbin without falling over! Functional, small, achievable. I rapidly learnt that I couldn’t metaphorically jump straight to the top of the stairs, but had to take them one at a time.

Being a doctor, my life had been full of what I “ought” to be doing. I have had to change my thinking radically into “doing what I am able”, and just “being” rather than achieving. When depressed, I try to think of six things I am grateful for every day, which I find surprisingly easy.

Losing the path

One of the most stressful incidents was having my request for medical retirement turned down by the NHS Pensions Agency, which meant I then had to appeal. I felt I was being accused of lying about my medical state and found this very hurtful; I felt disbelieved and as if I were being called a fraud. The BMA’s pensions department was superbly helpful, though, as was the support of a local consultant. I have two lever arch files of official communications, and without my husband’s help (I have problems with my sight), and that of those above, I would have completely lost the plot. It was a very distressing time.

I understand now why those who have been very ill often become housebound, even if their physical state suggests they could do more. The familiar causes no anxiety, and it takes a definite act of will deliberately to put oneself into unknown situations. Fear is difficult to overcome. I found it easiest to try to do small things incrementally: to go to the front gate, then to the corner of the road, then to the post box and on to visit an understanding friend, all done regularly until they cause no further anxiety and they too become familiar.

Journey’s end

I have been told that the tumour was benign, but I have lost confidence in my body and am glad to have been offered follow-up magnetic resonance imaging scans. I live with the enduring fear that the tumour will return, whatever logic might suggest to the contrary. Whether my symptoms will improve, nobody will hazard a guess. For all of us the very end will be death, and I am aware I have already journeyed to its gates. Whether that means death will come to me sooner rather than later, I have no idea. But I regard this experience as a second chance, a challenge to live life now, and try to enjoy it as much as possible, for however long I have.

A doctor’s perspective

“Your friend and colleague has a tumour in the fourth ventricle.” Shock.

One’s immediate reaction to such information is not unlike that experienced by those directly affected, and Anne herself notes the behaviour of the doctor breaking her bad news. True, he may have wanted to avoid using the phrase “brain tumour” and might have been anxious in case Anne broke down, but he too would have been surprised, upset, and worried by the discovery. Paternalism also probably intervened, and he may have attempted to minimise the gravity of the diagnosis for her. He might have feared tears on her part, as these could have represented the breakdown of a partly professional relationship, something that at that point both Anne and her doctor perhaps perceived as enabling them both to cope with this difficult information.

Anne writes movingly of her concerns for her family first and foremost. One realises that doctor or not, her needs and wishes are identical to those of every other patient. The message is that colleagues encountered in this setting should be treated as patients and not professionals. The time to rebuild your professional relationship will come later, in times of good health. The attempt to preserve a professional association may also mean less open discussion, a failure to admit lack of knowledge or experience, and the absence of firm direction on treatment. You are simply too careful about what you say. I have often noted an “inverse care law”—where medical professionals and their relatives have suffered because of assumptions made about their level of knowledge or their capacity to secure services. Anne’s (eventually successful) search for therapy services in the community is a good illustration.

Some of Anne’s many clinical observations postoperatively are difficult to account for, for example, the persistent fatigue and sensory overload. They are nevertheless real and must be related to her tumour and the surgery she underwent. The ignorance and callousness of the pensions company is not unexpected (note the plaudits for the BMA!) but do we not dismiss the claims of other patients with identical symptoms in the absence of demonstrable pathology as being manufactured? Perhaps terms such as “non-organic” and “functional” should be stripped of their negative connotations, and interpreted as “we simply do not know”?

This insightful and thought provoking account is a salutary reminder that treating one’s colleagues is a privilege and an honour, and that their needs are surprisingly ordinary. If they seek you out, they probably do so because they consider you a good and kind doctor, and not because you are an opinion leader, a brilliant academic, or a management wizard.

Rajith de Silva, consultant neurologist, Desilva63@aol.com

Notes

Cite this as: BMJ 2009;339:b2886

Footnotes

  • This is one of a series of occasional articles by patients about their experiences that offer lessons to doctors. The BMJ welcomes contributions to the series. Please contact Peter Lapsley (plapsley{at}bmj.com) for guidance.

  • Competing interests: None declared.

  • Provenance and peer review: Not commissioned; not externally peer reviewed.

View Abstract