Bereavement and stem cell transplant

Losing a loved one after a stem cell transplant

When you lose someone you love after a stem cell transplant, it might be a shock. It might have happened quickly. Or it might have been expected. Each death and experience of bereavement is very personal.

You might have lots of questions after the death of your loved one. This is normal, but can feel overwhelming, and we’ll do our best to support you. Below we’ve offered answers to some common questions, and further on we also provide resources where you can seek further information and support.

Why might someone die after a stem cell transplant?

A stem cell transplant can offer hope of a cure for many illnesses, like blood cancers and blood disorders. It can be a long and tough treatment but can come with positivity, like finding a stem cell donor. So it can feel shattering when a loved one dies, whether the transplant worked or not.

Here are some common reasons why someone might die after having a stem cell transplant:

Graft failure

Graft failure is when the stem cell transplant hasn’t worked and the new immune system hasn’t formed properly. Either:
• your loved one’s immune cells attacked the donor’s cells as they saw them as different
• the donor’s cells didn’t ‘engraft’ properly to form your loved one’s new immune system.

If there are signs of graft failure after a stem cell transplant, there are treatments available, like a donor lymphocyte infusion (DLI), but they don’t always work.

Relapse

Your loved one’s condition might return (known as 'relapse’) even if the stem cell transplant worked. Relapse is more likely in the first two years after transplant, but is possible even after five years.

GvHD

Graft versus host disease (GvHD) is when the donor’s cells are seen as ‘different’ by the body and are attacked. GvHD is a common side effect if you had an unrelated donor, but sometimes it can be fatal.

Infection

Your immune system is vulnerable to infection after a stem cell transplant. If your loved one picked up an infection, it will have been much harder for their immune system to fight it.

People who have had a stem cell transplant can get stuck in a cycle of infections and hospital admissions. This can prevent their immune system from fully recovering.

There is only so much you can do to not pick up an infection. It can happen even if you are following all the correct advice.

To die from post-transplant complications is often complex and not due to just one side effect or infection. Everyone’s experience is different.

Was having a stem cell transplant the right decision?

Stem cell transplant is never considered by a medical team unless it is the best option for long-term remission. They will have discussed lots of options and factors as part of a multi-disciplinary team (MDT).

For some people, having a stem cell transplant is the only option of a cure. It might have felt easy to make the decision and take the risks, especially if the transplant had to happen quickly. But that doesn’t make their death any easier.

For other people, having a stem cell transplant is a choice. You can only make the best decisions with the information you have at the time. We will never be able to predict what the outcome of a stem cell transplant will be. It is OK to have felt positive and hopeful.

What about the stem cell donor?

Being a stem cell donor is an incredible thing. You’re giving someone another chance to live and bringing hope to families. It can feel devastating to know the person you donated to died. You might be feeling lots of complex feelings.

I donated to a family member

If you donated your stem cells to your sibling, or parent or child, the feelings you might experience if they die can be overwhelming. There are extra, deeper levels of responsibility, awareness and attachment.

It is not your fault. It is understandable if you feel guilty or responsible, but this simply isn’t the case. You would have been the best stem cell donor for your loved one, and you would have brought hope.

You’re in a unique situation. Your experience of grief may be different to those around you. But please don’t let that put you off sharing how you’re feeling and seeking support. You’re allowed to feel however you’re feeling, and to put yourself first. Find a trusted family member or friend, or trained professional to support you.

I was an unrelated donor

It can be hard to find out the recipient of your stem cells has died. You might not have known them well, or at all, but you were an important part of their treatment journey. You gave hope to them and their family.

Your feelings are valid. You’re allowed to feel sad even if you didn’t know them. You’re also allowed to not feel much at all. It’s a unique experience.

Give yourself time to process any feelings you’re having. Speak to trusted family, friends, or a trained professional. You can also speak to our Donor Follow Up team, especially if you have any questions: donor@anthonynolan.org

You did an incredible thing by donating your stem cells — never doubt that.

Can I get in touch with my loved one's donor?

Yes. If you would like to contact your loved one’s donor, this might be an option for you. There is no expectation for you to, however. It is completely up to you.

Anthony Nolan’s Donor Follow Up team can help you with making this decision. They can help to put you in contact, too.

Here are a few things to consider:
• Like with everything, we would advise you to give yourself time before deciding to make contact. Emotions are high and feelings can change, so it’s good to be sure this is definitely what you’d like to do.
• Your contact might be the first time the donor learns of the death so it could be a shock to them. They too might feel a sadness and a loss.
• Some donors choose to not know what happens after they have made the donation, and this is their choice. There is no guarantee they will accept your contact or respond.
• Once contact has been made, the donor might hope to stay in touch. Think about your expectations and what your boundaries are.
• For some international donors, there might be some restrictions on contact. Our Donor Follow Up team will be able to advise on this.

Coping with grief

Grief is a very personal experience. There is no right or wrong way to grieve, and how you feel will change over time. Grief might feel overwhelming and intense at times, and calm at others.

Below are common feelings you might have. You might feel some of these all at once, at different times, or none at all. However you’re feeling, be kind to yourself and take any support you need.

I feel so sad

Having a stem cell transplant can bring hope, and it can be devastating when that hope is lost. The experience from diagnosis, to transplant, to now can leave you feeling drained and exhausted.

Sadness can feel overwhelming, and it might seem hard to get through each day. Over time, you’ll hopefully be able to manage the sad days.

Life had been dominated by his treatment and months of being his carer 24 hours a day, and now there was a void in my life. The days and nights seemed incredibly long.

Helen, whose husband died after a stem cell transplant

I feel angry

You might feel angry or frustrated if you don’t understand why your loved one died. Recovery might have been going well, or they might have died suddenly. You might have lots of questions. It can also be normal to want to find something or someone to blame. It is your brain’s way of trying to make sense of the death.

These feelings can be uncomfortable, but they are normal. The immediate period after the death can be stressful. It’s very important to share the feelings you’re having in a safe way with trusted people.

I realise that my rage, which wells up unexpectedly and engulfs me, is a reaction to the unfairness of what has happened. I try not to express it. Sometimes, it slips out and then I forgive myself, because I think people understand

Ann, whose daughter, Zoe, died after a stem cell transplant

I feel guilty

People often tell us they feel guilty after their loved one has died. We try our best to keep our loved ones safe and healthy, so we might worry we did something wrong. If we want to find something or someone to blame, sometimes it’s easier to blame ourselves.

There are lots of people involved in the care of someone having a stem cell transplant. Lots of decisions are made together with the best information and expertise available. No one knows what will happen, and no one is to blame.

You might also feel guilty if you were the stem cell donor. Perhaps you’re a sibling donor, or a parent. We talk more about this above in What about the stem donor?

I feel relieved

Watching someone you love in distress is tough. Recovery after a stem cell transplant can be long and hard, so to feel relief they’re no longer in pain is normal. It is nothing to feel bad or guilty about.

The pressure on patients, families and relationships is hard, and quality of life for everyone involved can be affected. It is OK to have a sense of relief it is now over.

I initially felt an overwhelming sense of relief that he no longer had to suffer the transplant complications, and that myself and family and friends didn't have to go through the upset and anguish watching him suffering.

Helen, whose husband died after a stem cell transplant

I feel lost

Feeling lost and unsure what to do next after a bereavement is normal. This is especially common after the funeral when people go back to their normal lives. You can be left with a ‘new normal’ and lots of big feelings still.

We talk more about life after bereavement below.

Physical effects of grief

Grief can affect you physically as well as emotionally. You might:
• feel exhausted
• feel unmotivated
• feel nauseous
• struggle to eat properly
• struggle to sleep
• feel unwell
• be more likely to catch an infection if you are feeling run down.

As hard as it might seem, you now need to focus on keeping yourself well. Just managing a normal routine of getting up every day, eating well and a bit of physical activity can really help.

Don’t be hard on yourself. Getting out of bed every day is an achievement.

Donna, whose daughter, Emily, died after a stem cell transplant

Getting support after bereavement

It’s important to share how you’re feeling after losing your loved one. Bereavement is a shared experience, and it can help you to connect with others, as well as help you to process what has happened. We’ve shared some options below.

Counselling

Bereavement counselling can be offered through your GP, local hospice, charities or private practices. Your loved one’s medical team might also be able to refer you.

It can help to talk to someone who does not know you, but understands the process of grief. You might feel you can speak more freely and honestly.

Support groups

Speaking to people who have been through similar situations can be so helpful. You have a shared experience and might not need to give as much context. Your loved one’s medical team, or local hospice, might be able to suggest some local or online support groups.

You can also join Anthony Nolan’s Patients and Families Forum.

Speaking to the medical team

It might feel like all contact with your loved one’s medical team stops after they die. This can feel really tough, especially if you have questions or you built a relationship with them. You might have known them for years.

If you do have questions or would like some support, do get in touch with the medical team. Perhaps you can write down any questions or thoughts you have beforehand. Hopefully they can help to give some answers and support.

Practical help

It can be a stressful time after someone dies. There can be lots to sort out, and you might feel mentally and physically exhausted. Remember to ask for help. Ask family and friends to:
• help with funeral arrangements
• help cancel any bills, etc
• help tidy and clean your home
• cook you some meals
• take you for a walk or on a day out for a distraction.

Family and friends often want to help during a time like this but don’t know how to, so this could be a good way for them to give you some support.

Marie Curie offers great information and support on practical tasks you need to do when someone dies.

Tell Us Once is a GOV.UK service which lets you report a death to most government organisations at one time.

Financial help

You can get government help with funeral expenses. You might also be entitled to benefits such as a Bereavement Support Payment. More information can be found in Where can I find more support? below.

Supporting children through grief and bereavement

Children grieve in different ways, just like adults. There is no right or wrong way to go through this process. Grief will be affected by the child’s age, their understanding of what has happened and why.

It's hard, I'm grieving too

It’s tough to support a child through bereavement when you are also grieving. Be kind and patient with yourself.

It’s important children see you are grieving too. Don’t be afraid to show them you are upset but do explain why, so they know your distress wasn’t caused by them. Understanding it’s OK to show emotion will encourage them to do the same.

There's so much for them to process

During recovery after transplant, children might have spent long periods away from the person they loved and home life might have changed. Grandparents might have been more involved, for example, or they could have spent more time with extended family or close friends.

This can mean relationships within the family or with friends can change, and children may need time to adapt. They also might have seen physical changes, such as weight loss or skin GvHD, which may have been hard for a child to process and understand. Talking about these things can make sure difficult feelings aren’t bottled up.

What support is available for children?

Like adults, a child’s reaction to death can include sadness, anger and feeling lost, but they might not know the words to express how they feel. It may be helpful for you and your children to read books together which explore grief, such as 'Sad Book' by Michael Rosen or 'The Heart and the Bottle' by Oliver Jeffers. You can find lists of recommended reads on the Child Bereavement UK website.

There are some good helplines and websites which can help you decide whether a child will need extra support and who to contact. We’ve listed these under Where can I find more support? below. Your hospital, GP and local hospice are also good places to ask for help.

Schools can offer extra support at this time. It’s helpful for them to know what has happened so they can help children who need it and take account of the death if academic tests are coming up. Schools may also have staff who can give your child time to express their grief using talking, drawing or play.

Life after bereavement

You might have felt like your life was on pause during your loved one’s treatment. Now, you’ll be creating a ‘new normal’. This can feel odd and hard. You might be grieving the life you once had as well as grieving your loved one. Or you might be craving some normality again, or a huge change.

Try to not make any big decisions immediately after your loved one has died. Give yourself time to grieve, adjust, and figure out your next steps.

Anniversaries

Birthdays, holidays, and the anniversary of your loved one’s death can be tough, especially in the first year. You might not know how you will feel or how you want to spend these days, and that’s OK. Everyone is different.

You might want to spend an anniversary differently to other family members or friends, and that’s OK too. Be sure to communicate how you’re feeling and listen to the needs of others. Some might want to celebrate your loved one’s life together, and some might want to spend some time away. Be kind to yourself and each other.

Living a 'new normal'

It can be hard to know how to live your life again after losing your loved one. It’s time to look after yourself and start building a ‘new normal’. Here are some ideas:
• Try to build some gentle new habits and routines, including exercise.
• Plan times to socialise with friends.
• If you’ve had some time away from work, consider going back with a phased return, if possible.
• Volunteer locally or with organisations that have a connection to your loved one.
• Reconnect with old hobbies, or find new ones.
• If you’re able to, go on a nice holiday to have some time away from home.
• Give yourself some small goals or challenges to give you a focus.
• Allow yourself to have some fun and laughter.

Relationships with family and friends

You might find relationships with family and friends have changed. Your loved one’s treatment journey and death might have affected dynamics, and that’s normal.

It’s important to acknowledge this and give everyone the time and space they need to grieve and process. Look after yourself and each other as you adapt to your lives after bereavement.
You might like to go to support groups or counselling together, if you think that would be helpful.

Going back to work or education

You might have had some time away from work or education throughout your loved one’s treatment and after their death. It might feel overwhelming thinking about returning, or you might be keen to get back to some normality.

Be honest with yourself and your colleagues or teachers before you go back. Maybe you can have a phased return, where you just go in a couple of days a week, or just in the mornings.
It’s normal to feel anxious about going back. Make sure you communicate how you’re feeling with colleagues or teachers. They can let others know how you’re doing, and let them know your boundaries. Maybe you want people to know you’d like to talk about what happened, or not at all. It’s up to you and you’re allowed to set the pace.

Tribute funds

Tribute funds are a way of remembering and celebrating your loved one’s life. You might want to commemorate them, and create a legacy. An Anthony Nolan Tribute offers an online space where you can share memories, upload photos, and raise money to leave an incredible legacy.

Where can I find more support?