The long-term consequences of chemotherapy

When I was a medical student doing my Oncology attachment I remember being obsessed learning about the staging systems used for the different types of cancer and the clinical management of the various oncological emergencies such as spinal cord compression and febrile neutropaenia. Why was this? Well it was because those were the topics that came up in the exams of course and as a student who was very good at passing exams my focus was obviously centred on these issues. Having lived through chemotherapy as a patient now though I think perhaps we should at least learn a little about the longer term consequences on the body as these are the things that a patient has to live with day in day out long after the treatment has finished.

When DtM consented me for chemotherapy back in August he wrote on the form in the frequently occurring or serious risks section “hair loss, vomiting, myelosuppression and infertility”. I was then given a leaflet explaining the risks of getting pregnant whilst having chemotherapy and the steps I should take regarding contraception. I was then about to embark on an intensive in-patient chemotherapy regimen including cyclophosphamide, which can cause haemorrhagic cystitis and significantly increases the risk of developing secondary cancers; doxorubicin, which can cause heart problems when used in high doses; vincristine, which can cause peripheral neuropathy; etoposide, which can cause acute myeloid leukaemia and liver problems; and ifosfamide, which can cause encephalopathy and have significant long lasting effects on cognition. I knew about all these risks already as I had worked for a year as a senior SHO in Haematology but they were not mentioned to me in the consent process.

I suffered my fair share of acute complications of the treatment including multiple episodes of febrile neutropaenia and haemorrhagic cystitis. However, I soon recovered from these and thought that my body would return to ‘normal’ once I discontinued my treatment in January. Unfortunately this is not the case and over a year on I have been left living with some consequences of treatment everyday serving as a little reminder of what I went through.

Perhaps the most disabling of these is the effect treatment has had on my hands. I developed a peripheral neuropathy from the vincristine early on which has gradually worsened over time. I can barely feel the tips of my fingers anymore making even simple tasks more difficult. I was such a dextrous person before with lots of hobbies, but I struggle to play my flute or do my embroidery like I used to. I frequently burn my hands when cooking now too. I also struggle with procedures at work, making me feel inadequate. I was always the Registrar who could get the impossible cannula before, but not anymore. It isn’t just the peripheral neuropathy that has affected my hands though; I have also developed an inflammatory type arthropathy. This is a well-recognised long term consequence of treatment with drugs such as cyclophosphamide. Unfortunately there is very little that can be done about it, but some mornings especially since the weather has got colder I can barely move my fingers. So the combination of stiff, sore and numb fingers has disabled me in a way that I would never have contemplated. Of course I had no choice about having chemotherapy at the time, it was that or die, but it might have been nice to have been warned about something that was going to affect my life in such a significant way.

Another consequence of chemotherapy that DtM did mention in passing one day at clinic is the effect on cognition. Now before illness I used to be a Medical Registrar working in a very busy district general hospital. Although some people might think this crazy I used to enjoy the challenges on-calls presented. I could juggle fifteen things at once with no problem and used to thrive on being busy. Whether this is a consequence of illness or a consequence of treatment those abilities have now deserted me. I haven’t carried the SpR bleep since I went back to work and doubt I could manage if I did. I struggle to keep up during the day on the ward when two patients are simultaneously unwell. The cognitive impairment is subtle and perhaps not recognised by those around me but is very noticeable and frustrating to me. I now have to tackle my work in different ways and concentrate on other aspects of the job I enjoy such as teaching. I would so love to run an acute ‘take’ again but the sad thing is I really don’t think I would be able to cope.

Over a year on I also remain lymphopaenic. The consequence of this is that I merely have to look at someone with a cold and I end up snotty for a week. The norovirus has also got me as have other various miscellaneous infections. I was a healthy girl before all this and was very rarely unwell with anything, sometimes I wonder if my immune system will ever recover from the battering it took last year.

So my body and mind are left with the invisible scars of treatment long after I discontinued chemotherapy. I have to live with these and like anyone living with any disability learn to work around them where I can and accept that there are just some things I cannot do anymore.

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Patient Choice – Is it what patients really want?

I’ve been intrigued for a while by the politicians voicing their opinions that we patients want choice from the NHS and that we are ‘consumers of healthcare’. Mr Hunt has been particularly vocal on the subject recently. Choice seems to be held up as a ‘Holy Grail’ by those designing healthcare policy.

I’m not sure that choice is what patients want at all. Obviously I write this from a personal perspective and cannot speak for all patients, but what I want when I am in patient role is a decent standard of healthcare delivered with compassion from somewhere fairly close to my home. I am extremely lucky to live only ten minutes drive from an Oncology centre. The Bexley Wing is a modern, well designed hospital environment which is probably about as comfortable as it gets in the NHS. I have sometimes thought to myself how much harder the past 18 months would have been on me and my family if we lived further away. Despite being a well informed patient I have never desired second opinions or treatment from other more specialist hospitals and have not exercised my right to choice personally.  

Healthcare cannot be compared to choosing the best deal on car insurance or scouring the shelves for bargains in the supermarket. Patients have a right to a good standard of care – which to me means safety combined with a good experience – wherever they are treated. Creating choice in some ways discriminates even more in my opinion. For example many of my patients are very frail and have cognitive impairment. Would these people choose to go to another hospital other than their local one because it may have a better reputation for treating their condition? ‘Choose and book’ is probably an alien concept to these patients, perhaps all they really want is their problems sorting out in a timely fashion without having to travel too far. I wonder how frequently people choose to be seen somewhere other than their local hospital and whether these people have any characteristics in common?

So instead of creating a consumer market would it not be better to invest in a patient safety culture and focus on patient experience to improve care for everyone everywhere? For Trusts that are succeeding to share their best practices with organisations that are struggling? This blog seems to ask a lot of questions, but I think this is because there are no easy answers to fix the NHS. However, I do think the politicians are so out of touch with what patients really want and how healthcare professionals really work that they do not really understand what they are trying to change.   

Emotional rollercoasters – the ups and downs of riding them

I’ve rode my fair share of emotional rollercoasters over the past 18 months or so since being diagnosed with terminal cancer. Before this I had led a fairly sheltered life other than the usual family arguments and someone close to me suffering with significant mental health problems. I used to see people who had self-harmed on the Medical Admissions Unit and wonder sometimes to myself what could be so bad that could lead to such self-destructive behaviour.

Since diagnosis though I’m pretty sure I have felt every emotion a human being is capable of from the lowest lows to the highest highs. I am prompted to write about this now as the past few weeks have been particularly tough. It all started after being coerced by my Oncologist to have a CT scan to investigate the worsening abdominal pain I had been suffering, in the full knowledge that given the fact I have had no treatment for an aggressive cancer for over 11 months that the likely outcome was going to be worsening disease. This would mean facing or refusing more chemotherapy.

I unusually took a friend with me to the appointment to get the results as I was so worked up about it all. They kept me stewing in the waiting room for ages just to heighten my emotional turmoil even further or so it felt and could be likened to the queuing process at a theme park. When I did eventually make it into the consultation room my Oncologist got straight to the point though. My cancer was stable on the scan. Psychologically this news felt like the drop on Oblivion at Alton Towers. A huge wave of relief was followed by an overwhelming sense of why? Why am I up every night pacing around in pain? Why despite hefty doses of opioids can I not get comfy? Why is it still stable? How I am supposed to know when it is getting worse then? When I am overwhelmed with thoughts I retreat into quiet contemplation. This vacuum was filled by DtM pontificating that my pain may be ‘medically unexplained’ and he started to give us a lecture on the concept of somatisation. I do not buy this. I fully accept this is a phenomenon which exists – the idea that psychological distress can manifest as physical symptoms – but my pain has caused my psychological distress, not the other way round.

That afternoon I was admitted semi-electively for a procedure to fix my ureteric stents. The operation is successful, uncomplicated and miraculously cures the pain I have been so distressed by over recent months. Perhaps instead of being ‘medically unexplained’ it had something to do with the two ruddy great pieces of metal that were sticking inside my ureters and now they had been removed my pain was gone. I leave hospital that night with the knowledge that my cancer is stable, that my symptoms are much better and that I can continue to live my life. Christmas, the imminent arrival of my new niece or nephew and my best friend’s wedding were not going to be marred by health stuff.

So you’d think I would have been over the moon. Not so. In fact I was on the verge of bursting into tears for a few days and remain a little on the emotionally labile side even now. I feel completely irrational about feeling this way. I should be happy. But in my mind everything was getting worse and there was a path to follow even though that path was not going to pleasant. Instead I am left hanging in limbo, a state I have existed in for months. It feels a little as though the rollercoaster has broken down with me left hanging upside down. How much longer is my reprieve going to be? I have well outlived the median survival time for my type of cancer now. This is brought home to me by three active members of the DSRCT forum dying in the past week, something I feel inexplicably guilty about.

My way to survive the rollercoaster of the past few weeks is to try and restore normality. Level headedness is usually such a prominent feature of my personality. Normality to me means returning to work after my surgery and spending time with the people I love. And try as hard as it is to think about the future. So I have set the wheels in motion with the Deanery to go back to work full-time and I have told my Oncologist I will not be coming for routine follow-up appointments anymore. I can do without spending my Monday mornings sat in a clinic waiting room for hours on end surrounded by other people with cancer. I have lots of plans for further fundraising and we of course have a ‘Bucket List’ to complete. Planning is already in progress for a ‘Staying Alive’ party in April….