Finding my new normal: Life after my child's cancer treatment has finished

3. How parents/carers feel at the end of their child’s cancer treatment?

Parents and carers of children who are at the end of treatment can experience many different emotions. A mixture of positive and negative emotions can be felt at different times, or all at the same time.

This is how some other parents and carers have described how they feel. Select each of the following video clips to explore how other parents/carers felt when their child ended treatment.

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Margaret:

Think back to when your child was approaching the end of treatment how were you feeling as the time got nearer?

Maria:

I was feeling incredibly anxious about that time, it felt like a massive milestone was coming, I knew that he was going to finish his chemotherapy but he still had lots of other hurdles so I knew it wasn't the end of the line in terms of going to hospitals. I don't think I quite grasped the magnitude of appointments that you still have following the end of chemotherapy or the end of your surgeries. I felt anxious about it coming back and probably isolated because my husband felt quite differently.

Margaret:

Okay. On the day you actually told that this is your treatment finish date, yeah, what were your thoughts and emotions then, anything different to what you just said?

Maria:

oh yeah I did it I was quite excited, my brother had a baby that day so every time I think of her it's two things class really something awful was happening and finishing but my niece was born but I remember we tried to enjoy the last one, the last one, but in the back of my mind I was just thinking is it going to be the last one and I don't think I did think it would be.

Margaret:

So if you roll forward a few weeks or a few months how would you describe that time and did the whole family feel the same and did any of your thoughts and feelings come as a surprise to you?

Maria:

Yes, when we went home, after a couple of weeks after his last chemotherapy, because he spent most of his time in hospital, I had a complete meltdown because everybody wanted to celebrate and everybody wanted to be joyous about the fact that he was cured and he wasn't sick anymore and it was a normal boy and life just picks up where it was left off and I wanted him to have chemotherapy every day for the rest of his life I didn't want him to be off treatment, I did want him to be going it alone and I was incredibly anxious and was, I felt paralysed for many months.

Margaret:

You said your husband felt differently?

Maria:

Yeah, I think my husband was probably more joyous than I, I think he felt it was over and it was time to move, move, on and I didn't and my family wanted to celebrate the end of treatment and the end of an awful time but I just couldn't see through the awfulness of what was what I thought would be in the future what was going to come.

Margaret:

Is there anything else about that time that you want to tell us about?

Maria:

Just that it was I felt really alone even though I was very surrounded by people and they were all trying to do the right thing and try and they weren't being mean but I felt isolated, yeah, I felt, I felt miserable and I hated being grim and, and, gloomy about it but I think because I was on the ward for as long as I was with him the reality was that it does come back and he come, come, back quickly and then it's not so treatable and you know it yeah it was just I wasn't prepared for the immenseness of the panic the overwhelming feeling at the end of treatment I thought it was something I would be really, really, happy about but actually I wasn't that was probably my worst time was when it's finished.

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Margaret:

Okay I want you to think back to when your child was approaching the end of treatment how are you feeling as the time got nearer?

Simon:

Well, I think because Dan had had A.L.L and we'd been on treatment for over three years we'd had a long time to look forwards to that end date, we've been planning for that end date for best part of three years and certainly the six or nine months before we'd got as far as having a spreadsheet with all his doses and everything planned and we've been ticking off the days for that three years to end. So, to a certain extent I don't think we'd planned anything everything was just frozen everything was just looking forwards to that end date there was no time to think of anything apart from that end date.

Margaret:

And you were given the date, as you say, about six to nine months...

Simon:

Yes

Margaret:

Prior. And what were your thoughts and emotions then?

Simon:

When we've been given the date? Great there's light at the end of the tunnel I think for three years you know going through your first Christmases oh my god we've got two more of these, after your second Christmas we've still got one more of these, so the getting around to sort of November the Christmas six to nine months before we finish it was at last there is a light at the end of the tunnel there's something to work towards and that was it just working towards that day everything aimed at that date.

Margaret:

So, roll forward a few weeks are a few months now and how would you describe that time did the whole family feel the same do you think and did any of your thoughts and feelings come as a surprise at that point?

Simon:

Looking back now it was a difficult, difficult, time and it's difficult to say why it was a difficult time. I think because you put everything off for three years all of a sudden there's a real mix of elation, great I've come to the end of three years, but then there's also this fear of oh no now I've got to face all the things I've been putting off for three years, things to do with me with my life with my relationship with my son with his education with the rest of our family everything now there's no excuse not to go and deal with all the things you've been putting off for three years.

So, it's a very weird mix of as I say elation because you're at the end of it or you start to see the end of it but also now I've got to face everything that I've been putting off for three years.

Margaret:

Is there anything else about that time you'd want to tell us about?

Simon:

Be prepared, I think, be prepared for the unknown. Whilst you're going through treatment there's a whole degree of sort of known knowns, you know where you are, you know where the ward is, you know what happens when he spikes a temperature, you know that things may happen that you don't know that were gonna happen and then at the end of it there's a load of unknowns that, what do I do if he spikes temperature, what do I do now, how often am I going to go to hospital and whilst after three years you build up your relationships in hospital, all of a sudden they're sort of coming to an end and you're having to move on to the next phase and it's sort of a, it's a very transitional period, so it's a, I look back now I think, you know what, I've Struggled, I personally struggled through that two or three months afterwards of all of a sudden I've got to deal with a load of things, I don't quite know where I am, the whole situation is fluid and moving. So, whilst you think you're looking forward to this wonderful period on a certain day all of a sudden that's the start of the next phase which is much less known and much less secure than you were in the previous three years.

3. How parents/carers feel at the end of their child’s cancer treatment?

Maria describes how she felt when her child’s treatment ended

Simon describes how he felt when his child’s treatment ended