This book offers practical advice for medics working with young adults being treated for cancer-from a mum’s perspective.

Names have been changed and places are not identifiable.

There is no such thing as objective truth when it comes to matters of a (broken) heart. Probably, every member of my family, including my son James, and every professional involved, would see things differently and from their own angle. All I am trying to do here is to reflect back to people who may work with families of young adults treated unsuccessfully for cancer, what the experience was like for me, as a mum. In doing so, I hope to do something useful, which might help people who will encounter families such as mine and want to do the best they can to help in this most delicate situation where heartbreak and patient confidentiality collide. I know that the team of people supporting my son were highly professional. He could not have had better care and I am deeply grateful for everything that was done for him.

Everyone did everything in their power to save my son who died two days before his twenty sixth birthday. He was a slim athletic, vegetarian and appeared well until he experienced severe stomach pains and was immediately referred to hospital by his GP. The only clue was that, a week before, James told me that his identical twin was a stone heavier than him. I didn’t think too much about this as I thought his twin had gained muscle weight and James had lost a bit through not eating enough while he was studying hard.

James’s cancer was advanced when found and complicated by TB. He had the best treatment which included avoiding unnecessary surgery. We have nothing but admiration for the NHS and every single person with whom James had contact.

What follows  are some practical recommendations based on my experience as James’s mum.  He died eight years ago and I still have intermittent  bereavement counselling, which is something I highly recommend. We are coping as a family. Personally I  felt very emotionally flat and traumatised by what happened and this feeling lasted for many years.  I think this is inevitable. These days I experience joy, albeit in muted colours.

There are a few things that might have made what happened a little bit easier which I have written here in the hope that my suggestions might be helpful. These points are fleshed out in the book . My dearest wish is that it should be on reading lists for medics, allied professionals and others who might be in a position to help people in this sort of awful situation.

Every single person we met in the hospice and the hospital was kind to all of us. Everywhere was clean and pleasant. There was art on the walls. The environment and the staff inspired confidence. James was treated with dignity.

I know the NHS is overstretched so it would be really helpful for a range of leaflets to be available to families or those closest to young adults being treated with cancer. Their purpose would be to signpost available support. NHS staff of course have to focus on the patient and respect confidentiality, but those closest to the patient need information. Many people go back to the family home which may not be where they are being treated, so need to know how to access services in other districts. There was a Macmillan Centre for example in our local hospital but I only found out when I saw a poster in A&E, otherwise I would have contacted them sooner.

There were no delays in James’s diagnosis from his first symptoms. Having been sent to A&E by his GP, my  24 year old son was on his own when he was told he had stage 4 cancer. He had no credit on his phone. He was told to go home and come back the next day. He waited in the waiting room all night alone. James was very polite so didn’t make a fuss about being by himself although he badly needed his family.  Someone should have been responsible for making sure he  was not alone at this stage, should have asked who they could call and should have made that call.

James felt supported by the specialist nurse assigned to him throughout. She was very important contact for him. It is vital to maintain and develop the specialist nurse service. He was probably one of hundreds of people on her case load but he always felt like an individual. She focussed on him, quite rightly, but, as a family, we may well have found it helpful to have a few leaflets she could have given to us to signpost us to sources of support which we could have followed up. We are realistic about the demands on her time and the production of factual information leaflets might be something that could be done by a volunteer or maybe even as a student project.

I think it’s important for the patient to be asked to identify close supportive people, who may or may not be their birth family. While I appreciate confidentiality, I do feel that it would be helpful for medics to know with whom to interact, and how the patient wants this to happen.  James was persuaded by me to go to appointments with his dad. His dad kept me informed but, because denial is so powerful, I didn’t believe him. I needed someone medical to spend a few minutes with me, as did James’s siblings. It still feels wrong to me that only James’s dad would recognise any of his medical team in the street, and that he always had to convey the bad news without any backup.

It is necessary to empathise with the patient and the family. From my perspective I wanted people to be thinking ‘if this was a child of mine’. James was not a child of course but understand that while children become adults, parents are still parents. I spend a year of my life in abject terror and felt totally invisible.

I spoke to the specialist nurse once (for about  five minutes) when James was diagnosed. She told me the cancer would shorten his life, could not be eradicated from his liver and that there was a new drug called Cetuximab, which he probably couldn’t have, but they were trying. She also said ‘call me any time’. I called her once, when James  was found to have TB, and she phoned him back rather than me, which made him cross. There was no further contact. I was totally isolated in my terror. It was not her fault that I had no one to turn to and neither did James’s brother and sister.  For the whole time James was ill, with the exception of his time in the hospice, I felt  like a ‘non person’. I knew I just had to deal with my feelings myself in order to be able to function to support my family. It was dehumanising.  I still sometimes feel like I don’t really exist. Again, I know the NHS can’t look after the family but I suspect other statutory and voluntary services could and  therefore some signposting  to sources of support might help.

James had intestinal and liver cancer. When he was in hospital and all his university friends were around him he was embarrassed by terms like ‘colo-rectal’,  on the nurses badge, and on the name of the ward.  Please think about the way things are described through an empathic focus on patient dignity (and confidentiality-James  did not want anyone to associate his illness with ‘an embarrassing bum cancer’). How about the term ‘lower GI’? Never lose sight of the fact that the patient may be embarrassed even though the clinician is not. While the professional has been through similar scenarios hundreds of times, for the patient, the situation is new and frightening and they will feel powerless.

My son was an athletic vegetarian with a healthy lifestyle. He was bombarded in the hospital and the media by messages about his cancer being associated with poor diet and a sedentary lifestyle. This really irritated him. He was rather amused that the’ beat bowel cancer’ poster outside the hospital canteen featured lots of leafy vegetables and the canteen itself featured mainly chips and white bread. The food on the ward was, however, very healthy, with a good choice for vegetarians.

It would be helpful to develop some information leaflets aimed at young people and don’t adopt a heteronormative perspective. My son was gay. Men also have concerns about hair loss, acne and other side effects which could also be acknowledged.

Understand that denial is a very powerful emotion and terrified families are often very psychologically defended and can’t take on board what is happening, especially without any help. When James had Cetuximab his primary tumour disappeared and terms like ‘curative’ crept in. I clung to this and redefined the word ‘palliative’ with no one at all to contradict me. Denial can be fed by comments like ‘spectacular response to chemotherapy’. I also clung to the idea that the Professor of Oncology from the university where my son was a student was in charge of his treatment therefore could not possibly let his ‘poster boy’ die. I know it’s ridiculous but it’s over ambitious to assume that a mum can grasp that their child has been handed a death sentence. I hardly grasp it even now.

Provide an opportunity for those closest to the patient to interact, however briefly, with the medical team in order to help them to understand the situation. Siblings will have questions as well as parents. James  has an identical twin who wanted to talk about what he could do . He described himself as being ‘full of spare parts’,. Ongoing support for family members obviously can’t be provided by the NHS but intelligent signposting to voluntary and charity sector might help both in the short term and later when all sorts of things are still unresolved.

When we were staying in the hospital we could have done with a leaflet which  signposted us to the relatives room, the shower etc.  We didn’t find  out for over a week that there was somewhere where we could get a piece of toast. Often we were cold and hungry. Thoughtful people who organised things like parking permits for us were greatly appreciated.

It is more important that James’s dignity was never compromised even when he needed to be washed by the nurses. People spoke to him with kindness, sensitivity and interest in him as a person, not just a patient. A bit of discomfort for family members is neither here nor there in comparison but some simple changes would have made things easier.

I don’t know whether there is any room for manoeuvre in relation to meeting with the family briefly  during treatment or after a patient has died but I do think it’s worth considering. Again, even some sort of literature aimed at the family would be better than nothing at all. (I suspect there is such a thing but I failed to find it). I’m sure I’m not the only one who travelled the denial road without anyone to contradict me. After the patient has died, written information about support networks and how to access them is essential.

We all had genetic tests and this was particularly important for James’s identical twin. We heard nothing until James had been dead for over a year. It is deeply unethical to leave a family in a state of perpetual terror for so long. Geneticists need some training to enable them to empathise with people in this situation.  When we eventually met with the geneticist he was very thorough but did spend twenty minutes talking to  James’s twin about some very horrible diseases before telling us that it was unlikely that he would develop them. Ethical protocols around communication with families need to be developed to ensure that this never happens again.

Developing  existing systems of communication between hospital departments and services outside, such as the GP would be helpful. It would have been useful for hospital staff to know about the limitations of the district nurse service, for example, as sometimes we would have had unnecessary trips back to  hospital, 70 miles away, if our GP had not helped out with things which were outside the boundaries of district nursing (such as changing a pic line).

While treatment is ongoing, written information about support networks and how to access them is essential.  There must be organisations to help families who are going through what we went through when James  was ill. I think groups specifically for young people are important too. Although I found ‘Shine’ for James, I didn’t find anything for his siblings or friends. I think a group for students with cancer is necessary and that is something I’m trying to set up. If treatment and home are in two different areas it would be a good idea to develop a local contact, eg via the GP.

A leaflet including websites for Macmillan and similar would help, or even better, informing the patient specifically about Macmillan, and other services close by, would be a useful minimum. This is especially important if services are outside the hospital and in another area. An initial contact by phone would be even better.

It would be useful to teach hospital doctors about the impossibility of obtaining hospital prescriptions in community pharmacies if they are not aware of this problem. Better still, sent the patient home with the drugs they need not a prescription which cannot be filled without a trip to A and E.

Counselling is necessary for the patient and the family. I set up opportunities for James to go to a Maggie Centre in home city but he was too ill to travel. It didn’t cross my mind that someone could have come to him and nobody told me. I don’t think James knew either.

When James was having his operation he came to the hospital with both parents. Only one of us was allowed in  the waiting area and James went in with his dad, which I encouraged as I knew he trusted his dad to be calmer than I could. James was worried in case this upset me and I did not want this for him. I was cut adrift with no support to face the most terrifying few hours of my life alone, wandering around the hospital, contemplating jumping off the roof but knowing that my family need me so this was not an option. Either make absolutely sure in advance that the patient is aware that they can be accompanied by one person on the day of their operation or be flexible if two people come with them. I could have gone to The Maggie Centre in the hospital but I was afraid of what the people there might say to me and not prepared to hear anything that might dent my denial of the gravity of the situation.

Maintain the practice of avoiding pointless surgery but understand that people will construct a story about what is happening based on what they are told by medical people. If the information is not forthcoming or inaccurate this is incredibly damaging. Perhaps doctors need more training in giving bad news, and more support in dealing with it psychologically themselves.

Saying to a patient ‘you know what’s in the discharge note don’t you?’ is not the same as going through it with them. The doctor who came to see James after his operation  said to him ‘we have found a few spots on your diaphragm which we need to check out. They might be related to your TB’. The discharge note included more worrying details. Sending a patient home with a discharge note which contains devastating news is potentially catastrophic, especially as this could then be read in a context in which no support was available. The note should have been explained fully at the time and the doctor should have been equipped with the skills to do so. James never saw that letter because we didn’t show it to him.

When James came back to the ward after not having his operation no one told us for six hours what had happened. We assumed he was just responding very well and it had gone brilliantly. We called family and friends and told them all it was done and he looked really great. As a result his sister went ahead and got on a plane. Later we had to call everyone again and tell them about the few spots of TB. The reality was much worse and no one checked our understanding of the situation.

We took James on holiday and I phoned the Maggie Centre at the hospital, even though I was frightened of what they might say. Someone there told me ‘the cancer may have seeded’. As this person had never had anything to do with James’s treatment I was just very angry and felt she was making assumptions. This anger came from my state of terror. I was on my own miles away from anywhere when this phone call happened.

James felt rather abandoned after he didn’t have his operation as several people who were not his usual medical team got involved. I’m sure this goes with the territory in an overstretched NHS.  My denial had not abated and I still said ridiculous things like ‘palliative just means it’s a setback. You will need more chemo before they will operate’.

James was in hospital for a couple of weeks before he went to the hospice. He was looked after well and his pain was managed. People spoke to him about things other than cancer and that helped him to feel like he still mattered as a person. His pain was controlled and he never had to wait for the attention of the nurses. Everything was calm, clean and not rushed. I kept hearing ‘our aim is to get you back onto chemotherapy’ which I heard as ‘you can still get better’. Again James’s dad had to tell me when eventually the consultant came round and said that there was nothing else that could be done.  I wish we had been told together. I was only half an hour away.We went to the hospice the next day. It is important to help young doctors to give the DNR message. The term ‘you would be a vegetable’ is never ever ok to use with anyone under any circumstances.

The hospice was amazing. For the first time I felt like people were relating to me as James’s mum and that I might even be a real person in a real catastrophic situation, rather than hovering around the edge of something big and scary that nobody seemed to think had anything to do with me.

We all stayed in the hospice from Saturday to Wednesday in a purpose built family room. We were supported and nurtured as a family. Even after  James had died no one rushed us. It was as good as it could have been. There was even a drinks trolley for patients and the opportunity to bring pets in and to engage in various creative activities. People had time for all of us. James’s room looked onto a lovely garden. More important than anything else, his pain was managed.

James’s twin had worked in elder care and he told us what the approach of death would look like. For this reason I was able to wake all my family up in time and we were all with James when he died. It would have been good if someone could have talked to us about the signs that death is near. I would not have forgiven myself if I hadn’t woken everyone up.

We wrote to everyone after James died to thank them for his excellent care. We said that we knew if he could have been saved they would have saved him. No one wrote back and that was very hard. We were not naive enough to expect an ongoing relationship with the medical team or a presence at the funeral but a few words would have been nice.

I’m a bad sleeper and eventually went to the GP. (We had a new GP as we had moved). I told her my son had died and she wrote me up for a very heavy duty anti-depressant. She sent me out of the room with a questionnaire designed to test how suicidal I might be. There was no room on the form to say why I might feel sad. I didn’t take the pills, and I wrote a critique of the form on the back. She said she would be calling me in two weeks. It didn’t happen. I know my GP is also overworked. She would have benefitted from having a few leaflets to give me, eg for Compassionate Friends or bereavement counselling at the hospice.

After James died the hospice did write to us about bereavement counselling at the hospital. Its seventy miles from home but the letter prompted me to contact our local hospice. I rely heavily on bereavement counselling still and it is the only thing that helps me.

When people talk about complicated grief in relation to the death of a young person before their parents I find it surprising. I am very sad and I experience symptoms of PTSD in the form of flashbacks and sleeplessness. I don’t think there is anything complicated about it. I lost my son. My heart is broken. I am functioning.

James did have the best care possible and his death was not preventable. The NHS is overstretched so there isn’t really any scope to look after the family. Organisations like Compassionate Friends and The Hospice Movement can provide ongoing support. Telling people that these things are available is very important.

I am interested in the claim, attributed to Socrates, that the ‘unexamined life is not worth living’. James was certainly leading an examined life. As a family we all do. I’ve thought long and hard about  how to live my life with a heart that is broken and will not mend. I am still a mum, and my other two admirable adult children cannot have tragic lives. I love all my children in the present tense and I love their dad, who has a broken heart too and needs to be treated with kindness. I don’t want to oppress people with my grief, but self care is a political act and I try to keep mentally well.  I am careful not to be over anxious about my other children. We have all been checked out and do not have cancer (although I did have one of those curable cancers which is now fixed). I  believe  that my adult children have a right to an inner life. I don’t go through James’s  possessions. He was a great writer but  personal things that he didn’t write for me I don’t feel I should read. Friends and family support us but some people keep their distance and we have to accept that. James’s death was and is terrible for many people.

 I am an academic and I can help by talking on excellent courses about end of life and developing and participating in insider perspective research. I have always been a great collaborator. Mainly at the moment I am an actor. Everything I do is performative and I find that I can function, even though I feel fairly emotionally flat much of the time. I’m very reflective and I prefer to live inside my head than to fully engage with the social world. The pandemic was pretty easy on me actually. My sense of self is very shaken and I do not know how other people perceive me, although I can’t say that I’m particularly concerned. I’ve got a strong moral compass and I don’t crave external validation. I believe that it is important to live life with dignity and compassion. My main focus is on being supportive to my family, but I also want to tread lightly on the earth and be a decent person. James wanted people to give blood in his memory and to stop eating meat and turning the corners down on books. You didn’t know him but he was kind, funny and very decent.  He is loved and he is missed. Love in the present tense, always.

I’m sorry if this story is difficult for you to hear and I appreciate your  courage and urge you to go into the workplace and flex your empathy muscles. Your work is very important and makes a real difference.

Wordsworth deserves the last word.

‘’I loved the Boy with the utmost love of which my soul is capable, and he is taken from me – yet in the agony of my spirit in surrendering such a treasure I feel a thousand times richer than if I had never possessed it’’.

Wordsworth.

From a mum.

Nina Praske is author of Love in the Present Tense: A bereaved mum’s story

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