Teenager ALL

Are you a parent or a carer?

My husband and I are parents to 1 child. She was diagnosed with ALL last July and has just finished her intensive treatment and is moving into a 2 year maintenance period next week. 

Hi Sibby 

Sorry I cannot really share on the idea of a teenager with cancer, though I have a wife with cancer and a son with autism and my emotions though being on here have been pretty trashed.

Then, finally, I reached out for help for me. I first walked in to the Maggies at my local hospital - cried my eyes out for over an hour. Later I did a living with less stress course. It helped me learn to look at small steps - today, this week rather than living in a dark future I had no control over and might never see. I also learnt the trick of conscious breathing that is great for relaxing but also when life decides it is time for another curve ball.

If we look at our emotions when someone has cancer  it can help us understand how we feel and using that it can help us understand our emotions without them overcoming us.

<<hugs>>

Steve

Hi Sibby, my daughter was diagnosed with synovial sarcoma in 2019 when she was 17. We found that it was very important to listen to what she wanted in terms of her treatment, for example when she had radiotherapy she wanted early appointments even though she missed some school so that she could still do her normal activities & see friends later.  It helped that her school were very supportive.  I would recommend that she gets involved with the Teenage Cancer Trust if she has not already done so, they are also very supportive and my daughter has found it helpful talking to others her own age with similar experiences.  She has been to a few events and met others in person too.  I found it took the pressure off me a bit too as I knew there was another source of support for her especially during Covid as she turned 18 & I was not allowed to appointments with her.  We are lucky as despite all that she has gone through, she is managing to stay positive and keep up a busy life at university so can focus on things apart from this hideous disease. Always here if you want a chat. 

That’s the exact timeframe of my daughters treatment- diagnosed on 28th July and just starting maintenance next week. Gosh it’s such intensive treatment! We find the big changes in contact with the hospital very anxiety provoking e.g. moving from inpatient to outpatient; moving from weekly appointments to the maintenance period. Every block of the UKALL has a different impact. Has your daughter had many hospitalisations through the treatment e.g due a temperature spike?

Hi, thanks for the reply. Gosh I can’t imagine what it must have been like being treated during the pandemic! I would have really struggled with the restrictions on hospital visiting. My daughter is being treated through a TCT ward and we have found that has made a huge difference as it feels like she is connected to a community. Unfortunately the intensity of her treatment meant that she couldn’t keep going to college. The college were not consistent in recording missed lessons at first but she then became too tired to study. She is now going to have to go through yr 13 with strangers which makes it extra tough in her. I’m glad your daughter is enjoying uni. It’s such a devastation to the whole family!

Hi, unfortunately my daughter has had many hospital stays, 5 ops on her arm, must be coming up for 10 ops/procedures on lungs plus chemo & hospital stays between chemo because of temp spikes/ neutropenia. Sorry to hear that your daughter suffers so much with the tiredness, my daughter is very much like my husband in that she can nap whenever she has the opportunity. If she has too much down time she worries about her illness which makes her feel worse. I guess they all cope in different ways.  How do you manage to deal with everything? I have made use of Maggies on occasion which has been nice but i do find it hard to deal with.

Hi, It sounds like you have done a lot of work on yourself. I’ve cried soooo much. I’ve had a couple of counselling sessions but I may try Maggie’s if there is one in my home area. Thanks for the tips and for sharing your experiences. I think another big issue for us in the next stretch will be dealing with other people. Some people can be very sympathetic but others in shops etc aren’t very understanding when you need help. Sx