Did you find your children struggled with your being unwell, even after treatment? Did you have some good advice for supporting your family during and then after treatment?
My children were 21 & 18 & unfortunately 10 years ago there wasn’t the support that’s available now. They were kind of left to get on with it & their lives. My 21yr old son was working & studying to become a Quantity Surveyor via distance learning. My 18 year old daughter was just about to start sitting her A levels! My husband was running the home, looking after them & with me for about 10 hours a day.
My daughter flew through her exams, despite someone writing her car off (she was shaken up but no real injuries) on route to a day of exams. She was offered a place a uni to study performing arts. She had to move into halls with the help of her dad whilst I sat at home recovering from my SCT. She managed the first year but after the months of holiday at home with me, she went back to the second year & only lasted about 4 weeks. She suffered from separation anxiety & dropped out. All went well for her & she found a job in a couple of weeks & she has blossomed & become a very capable PA & young woman. I knew she was all fixed when she went off to fulfil her dream of going to live in Australia for a year before she turned 26.
It wasn’t until about 6 years post Transplant that my son cried for the first time whilst I was telling his girlfriend all about it. He has since gone on to graduate from Reading Uni with a first & met a lovely girl & they have just produced my first grandchild, a bouncing 9lb 6oz boy.
My husband relaxed at 3yrs post SCT & had a breakdown after balancing everything & sorting everyone.
My parents aged dramatically. They were young 70 something & both just aged almost overnight.
However, it’s not just the affect on your children, it’s all the extended family & friends.
One of my girlfriends took early retirement as her partner was 17 years older than her & it made them think because she would have been working & they wouldn’t have had any time together to enjoy retirement. Strange but he died this year so they had 8 years that otherwise they wouldn’t have had.
Another friend was planning on fulfilling her dream of owning a horse after she retired & her husband encouraged her to take out a loan & buy her first horse 9 years ago & she regularly competes at dressage.
You never know what life has in line for you, so if you can, do it. Don’t wait!
My 30 yr old son who was not living at home, but locally, was supportive initially but then he seems to have gone into denial. I have always been the strong one and that suits him. I do not have any good advice apart from just keep the lines of communication open and keep talking.
@Erica That is very good advice! Keep talking, both for yourself and for them too - it’s a huge thing for anyone to adjust to.
@Corfu80 Thank you for sharing your story there Christine, it’s amazing to read the impact a diagnosis can have beyond your immediate family, as I don’t think many would expect that. It’s lovely to hear your children are doing well, and congratulations on your first grandchild!
My daughter was 8 when I was diagnosed in 2015 and sadly there still isn’t any help. I was unable to find any for her as she herself did not have cancer, it was me! I know of others in a similar position too. She was extremely traumatised because I was suddenly rushed into hospital one evening then barely came home for 6 months, I wasn’t a mother to her during treatment because I was so ill. We have to find our own way to deal with the fallout which is something I would love to do something about!
I wrote a blog post about how my daughter coped which may be helpful to some
My children were 16, 24, and 26 when I was diagnosed. My older two were living away from home, but nearby. My youngest was doing his exams, and struggled seeing me so ill. He was always the first to notice the scratching, which signalled the relapse. Years later he told me that he never brought friends home because of me constantly scratching in the months before diagnosis.
Apart from that all three were a tremendous support to each other and my husband and self. Thankfully we all have a sense of humour and dealt with problems with that humour. Some people did find it difficult that we could find humour in our situation.
My mother was emotional, my father always angry. I was outspoken and told them they had to deal with it, because we were having to.
The school that my son was attending were very good, and one teacher in particular looked out for him. We used to email to keep each other appraised of the latest situation. He also wrote to the University that our son was hoping to go to, as results were affected.
I tend to downplay any long term problems now, and only give information on a need to know basis.
Blood cancer can have a massive impact on family, the patient often spends months in hospital away from home and become seriously ill during. Sepsis is a common side effect so some spend time in intensive care and that is hard for family to witness. I spent a lot of time during my first cycle unconscious as the leukaemia was quite advanced and my family tell me how awful it was to witness and when I did come round I did and said some strange things which we do laugh about now… as Louise says a sense of humour is one of the things that has helped us through!
I feel it is important to talk about it afterwards as a family whenever you need to, a bit like a debrief. I know we do, whenever it crops up and there is no such thing as ‘don’t mention the C word’ as I am happy for them to share their feelings, its helped us all cope. I think making it a taboo subject would be mentally unhealthy. My mum even told me that I would sometimes be really grumpy with her when she turned up to see me at the hospital so I have apologised (I have no memory of this) and we’ve laughed about that, it has made her and me feel better about it. There are lots of it that I can’t remember and they have helped me put the pieces together. Definitely being a team works. They would also take it in turns to ‘babysit’ me because I was too ill to look after myself and my sister loves the fact that she had to spoon feed me!!
So there are many varied ways in which it effects the family during and after treatment … this is just a snapshot of my experience
Such great advice and insights @AnnaMam thank you for sharing, humour is often a really strong tool for distracting and finding the brief moments to smile and laugh! It sounds like your family were really supportive which is wonderful - has it been useful hearing about the parts you don’t remember because you were poorly?
Thank you Dawn, I am happy to expand on any of this if anyone wants me to.
Yes I did find it useful, I do have a very inquisitive mind so perhaps this may not be the same for everyone. I have spent hours and hours researching AML because it has really helped me to feel in control, to know everything means I am the one with the upper hand, if that makes sense. My diagnosis was very sudden, I had only been unwell for a couple of weeks so I think its my way of dealing with the shock and making sure it doesn’t catch me out again. The phrase knowledge is power really makes sense here. So when there were grey areas during my treatment because I was so unwell I needed to fill them in, no matter how hard they were to hear. I found my mind going over and over some particular moment that was hazy until my family filled me in. I know this isn’t how everyone reacts but it felt right for me.
You hit on a point here that has really rung true with me and my family watching my eldest go through treatmentfor Leukaemia and then a stem cell transplant. Jamie was on the edge of life at various times and watching him go through a transplant was really distressing( we were told that he really wasn’t typical and had things quite bad). When he recovered from his transplant, my husband and I and his siblings were all really she’ll shocked and distressed at what we had witnessed. A lot of it he isn’t still aware of. For him though, he doesn’t want to talk about it and wants to move forward and I understand that!
@hlb Yes it must have been very distressing for you to watch, I know my parents and sister found it hard and talking about it since has helped. Though this doesn’t seem like an option for you with your son do you and your other family members talk about your feelings, or discuss how certain moments made you feel? This can be really helpful when dealing with your emotions.
You can always post anything here as I am sure one of us will be able to understand and help.
Hi, I think it can the loneliest place in the world being a family member of someone going through treatment, often you are absolutely exhausted and do not get the support you need to deal with what you have seen, your thoughts and feelings and you might want to talk about them and then Jamie doesn’t want to talk about it and to move forward, which as you say you can understand. I hope you find this community supportive and helpful, I am so sure your post will help others. Please do keep posting and take lots of care of yourself.
Sorry for the delay in replying.
I volunteer for Macmillan & I seem to remember they can help with assisting your daughter to understand what she’s going through & help her understand. Try giving them a call on their 24/7 helpline.
Many thanks for replying and suggesting this but we did explore all avenues, Macmillan being one of them…the basic advice doesn’t go far enough and my daughter needs counselling which was not available.
this is another area where blood cancer is not covered because of the intensity of treatment & the fact that the patient spends months in hospital some of that in intensive care. I went to my GP, he was very supportive but basically said there were funding issues and my Macmillan nurse who is wonderful had no resources either. I have not been able to access any therapy, psychiatrist etc either… thank god for the internet & my Bloodwise friends
Thanks for getting in touch.
It must have been very tough for your family during this difficult time. I cannot imagine how distressed all of you must have been feeling. How old was your son when he was diagnosed?
He was 17 when diagnosed, he was right at the end of his A levels and we thought his symptoms were stress related! He turned 18 whilst he was an inpatient at The Christie in Manchester!
He had a stem cell transplant in December, but has managed to get off to uni , a year later than planned, but still a massive milestone for us. He’s just had a recent bone marrow test result, which has come back as inconclusive… it’s a real worry!
Hi, how are you coping and please let us know his re-test results?
Ah thanks for asking. I’m really anxious at the moment, with him being away from home and he also picked up ‘freshers flu’ so any bug worry’s me with his developing immune system, and he can’t be re vaccinated until Christmas. Hospital protocol said he can’t have his bone marrow test again until 6 weeks after the last one, which is in a couple of weeks, then we have to wait 4 weeks after for the results… I always thought we would reach a point where we could sit back and relax a bit, but it feels like we are always waiting! Then I feel guilty, because we watched so many young adults not make it this far! I’m trying to stay positive!
If you have access to a Maggies Centre then please go and talk to them. They are a fantastic resource which offers emotional and practical support to cancer patients, their friends and families. I’m not sure exactly if this includes counselling but it’s worth exploring and asking that question. Fingers crossed for you x