Supporting my adult child with terminal cancer

Hi Sunflowerz and welcome to the Macmillan Community but so sorry to hear about your adult child’s diagnosis.

A cancer diagnosis like this in the family can be such a challenging and stressful time but getting support from others who are dealing with the ‘exact same' support challenges can help a lot.

The New to Community is like our reception desk where we look to direct you to the best part of the Community for you to get support. The Community is divided into dedicated Support Groups (Discussion Rooms) and when it comes to the practical and emotional challenges of supporting your child and indeed yourself you may benefit from joining and posting in our…..

Carers only (if you are their caregiver)

Supporting someone with incurable cancer

……. support groups where you will connect with others navigating the exact same support challenges.

To connect with a group click on the “Bold Italic Links” I have created above then once the group page opens click on “Click to Join” when the black banner appears or “Join” under “Group Tools” (this all depends on the device you are using)

You can then put up your own post when you’re ready by clicking “+new” or “+” in the top right next to the group title. You can copy and paste the text from this post into your new post.

It is an emotional time supporting family so you might find this Macmillan information your feelings when someone has cancer helpful as well as this link getting help with your emotions.

You may find it helpful to call the Macmillan Support Line open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.

We also have our Ask an Expert section but do allow 3 working days for a reply.

Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing and support all the family.

Please do get back to me if you need further help navigating the community ((hugs))

My son was diagnosed with terminal cancer and given 2 to 5 months to live. He survived for 3. It was during the pandemic. He was only 40. He lived with his girlfriend who was very good to him. I didn't know what was the best way to help him, or comfort him. In the end I decided that the best was to talk to him about the everyday things that were happening at home as I would have done if he had not been ill. At first I thought that might seem too trivial to him, given that he was facing something so terrible. I didn't talk much about the cancer except to say that he had done nothing to cause it. People with cancer often say they want to be treated as normal, but some people avoid them because they don't know what to say. I encouraged my son's young friends to visit him which he enjoyed. After all he would not have been happy at home alone and being ignored by everyone he knew. His siblings visited a lot and they tried to laugh and have fun to help him enjoy the little time he had left. I shall never know if we did and said the right things. It must have been a million times more devastating news for him than it was for us. I tried not to  burden him with my immense grief as he had his own sorrow to cope with, and illness as well. I remember I was desperate for the kind of advice you are asking for, as like you I didn't know what was the best thing to do or say. Tannith

Thank you for your communication. I will definitely be returning to the links you have provided. I was very fortunate today to speak with not only a nurse while at the hospital but also the macmillan support as well as our lovely macmillan nurse, Everyone at the hospital has so much time for us. I end up saying oh no I’m taking up too much of your time… I’m feeling so much better today for speaking (& crying) face to face without my sons knowledge while he was having his chemo. 
thank you all for such tremendous support

Thank you and I’m sad reading this. I guess there is no wrong or right thing to do or say. It sounds like he had a great girlfriend supporting too. It’s difficult isn’t it not to step on her toes, so many things to consider. You bought him into the world, tragic having to see him go so soon… How are you getting on now?

Good morning Sunflowerz I am pleased that you were able to talk with a few people at the hospital. Talking can be a good tool to be able to control the noise that us raging between the ears.

Do connect in with the groups I have highlighted as there us support available on this Community at any time ((hugs))

Hi Sunflower

He died 3 years ago last Saturday. Anniversaries are hard, but I think of him hundreds of  times a day every day, anniversaries or not especially for hours at night when I am trying to get to sleep. I cried every single day for 2 1/2 years, and more or less 24/7 for the first few months. Now it's a bit less often. You never get over it but with time you do get used to it. I lost my baby daughter to cot death 45 years ago, so sadly I already had some experience of losing a child.

How old is your son? What kind of cancer has he got? You say he is having chemo. My son was offered it but declined as he wanted to make the most of what little time he had left. They also said it would prevent him from having a palliative operation (stent to drain stomach) if he needed it later because chemo increases infection risk. It turned out that he did need that op, which gave him an extra month.

Our palliative care nurses were lovely too.

I am so sorry for you and your son, I know what you are both going through and I wouldn't wish it on my worst enemy. Sending hugs. Tannith

One thing I forgot to mention before. Not quite relevant to your question but something you might like to do. We forgot to record my son's voice. I so wish we had thought to do that. It would have helped after he died to have that. Tannith

Hello again Tannith B

I just re read your first email. To be given such a short notice of time is horrendous! What type was it. My son is 36, married with 3 little children. Doctors don’t know where the cancer is coming from. They’re fire fighting at the moment. So far the chemotherapy seems to be ok for him. He sleeps a lot but he is also able to potter around at home. I think too far ahead and need to take each day as it comes like he does. I’m told I’m preparing myself for the inevitable. I’m now trying to be thankful for every day and save the tears for later. Somewhat impossible of course. 

What with loosing your baby daughter too, you’ve definitely been through some terrible times. I feel for you so much. 

It takes a piece of you doesn’t it, that’s how I feel, as if something inside is being torn away. I agree you can’t possibly ever get over it. And what a challenge having to learn to live with it.

I have lots of voice messages from him. Thank you for suggesting that, I will make sure not to delete them. 

Take care of yourself. Your message has been so helpful to me. Thank you for taking your time to write.

Sunflowerz

You poor things - he is so, so young. My son was 40 in May 2020, diagnosed end Nov 2020, died 9th March 21. He had diffuse stomach cancer which is the sort that occupies the entire stomach wall rather than being a distinct lump. I am so sorry for your son's family and little children as well. I think it is harder for a parent to cope with the news that they are terminal when they have also to cope with not seeing their children grow up. Though I hope having his children there will be a comfort to you later on.

Perhaps try to think of all the senses, sight ,sound, touch, smell etc and try to include nice things in his environment. And nice food while he can manage it. My son asked for his bed to be by the window where he could see the sky and watch the world go by. And I gave him a hyacinth in a pot as they smell so good. He was, like your son, tired all the time, and slept more and more, and became very weak and thin.

It's such a hideous disease isn't it. No one should have to bear such news less than half way through their life. It is so unfair and wrong. My heart goes out to you, I have been there. Rebecca (aka Tannith)

I forgot to say. You might like to ask for some fast acting painkillers to keep at home. My son was OK all day and then in the evening he died, had painful spasms. Girlfriend called the nurse to bring morphine and though she was excellent and came remarkably quickly, it would have been good if GF had had some strong fast acting painkillers ready at home to give him in the meantime.

As to your situation, regrettably I can offer no comfort. I don't think there is any that works. Losing her child at any age must be the worst thing that can happen to any mother. Hugs. Rebecca