Hello @Dan,
Thank for you for the suggestions about telling children sooner then later. I am also sorry to hear about your wife’s experience. @Dan, if you need any support from us at Bloodwise or from the forum community, do not hesitate to speak to us. I hope you don’t mind me asking, did you keep your children informed about every hospital visit? Do they tag along with you on some occasions?
Yes, we did discuss it to decide how much to tell them. We decided to avoid certain words like cancer or leukaemia which might scare them and we never told them that I could die. We chose to leave that until it became a definite which fortunately it never did. We told them there was something wrong with my blood and that I needed to take strong medicine to fix it. The medicine would make me feel very sick and my hair might fall out but that it would fix my blood and I would get better eventually.
Once I had a Myeloma diagnosis it was easy to research exactly what it meant and a great deal of information was derived from the Myeloma U K website. It didn’t take long to realize that you only needed 1 or 2 trusted sources of information and mostly ignored the many other references to Myeloma. It helped too when a treatment strategy was presented by the hospital so you could start planning day to day routines.
Those sound like great suggestions when telling your kids about your experience. Were you worried about informing them?
Hi Dan, I have just realised who you are. Thank you so much for taking the time to post when you have so much going on. I hope you find this on line forum gives you as many responses and support as our Facebook Ambassadors site has, I am excited about how it will evolve. Take loads of care of yourselves and if you have time please let us know how you all are now.
@Erica I should of put a picture up like you so people can recognise me haha. Will post on ambassadors page with an update soon
@JoshuaBloodwise
Regarding my treatment and appointments the boys didn’t come to appointments but did pick me up each time from the chemo day unit and visited me in hospital when I was an inpatient receiving treatment.
Regarding my wife recently they have been to some appointments with us including Physio, Occupationl therapy etc as we think it will do us all good to know what’s going on and can work as a team to help my wife ( their mummy ). It’s not been easy and my youngest son needs some counselling to help with what has happened to my wife, if I had the chance to do it differently then I wouldn’t change a thing I did. I would definitely do the same again. Honestly is the best policy.
Hello @Dan,
It is really nice to hear your boys picked you up from your appointments and even attending some of your wife’s check ups. Have you started counseling for your son yet? Counselling has not come up in the forum and hearing about your experience will shed light on the topic.
@JoshuaBloodwise
No he hasn’t started his counselling yet had the form from the centre to make an appointment today so will be making an appointment ASAP.
Yes we had this which helped us understand what was going to happen in plain speak… best things for us parents in the beginning! Clara read and re read. We were also given a second copy for clara to take into school for teachers to understand what her sibling was going through.
Our son was 7 when his daddy went to work one day and then didn’t come home that night. Or the next. And so on for a little while. I think that parents and carers know their child and what info/support needs their child or children have. I just think in a crisis it can be hard to trust our own judgement as we try to keep it all together. Our situation was different to some others - my hubby wasn’t expected to come home again at all. It was anticipated that he would die within 4 weeks. I had no option but to be truthful with our son - there was no easy way to break it to him, he had to be aware how ill his daddy was and he had to be able to ask really difficult qts. When my hubby was diagnosed 10 days after hospital admission and told very clearly what a dire situation we were in, we chose to be as honest as we could be without being unkind. We didn’t say he was dying, we said that the drs thought daddy wouldn’t get better and that his cancer wasn’t ever going to go away. We told him that life was going to feel and seem really different but that done things wouldn’t change like how much we loved him, how much we’d do our best to help him, that he’d still have clean pants and vests and school packed lunches and that he’d always know who was picking him up or putting him to bed. This might not be right for some kids but our boy has always been an insightful, sensitive, clever and thoughtful boy and he needed to know we were telling him the truth. This doesn’t mean he found it easy or that we got it so right that he sailed through his experience- he, like me, has had to feel a sense of loss while his daddy is still here. And he grieved and hurt and needed more support at times than we were best placed to give. But I found where he could get that and they helped piece him back together. We vowed from the start to talk the truth and treat him the way we’d want to be treated and it has stood us in good stead - even if our words, as considered as they were, took his childhood away in an instant. Our son has asked many difficult, grown up qts and has expressed many emotions that are literally heartbreaking but for as long as he’ll share those feelings with me and look to me for some solace, I’ll feel I’m dojng an ok job. We are blessed by the boy we have - he has been a gift since he was born and his maturity, his kindness and his unconditional love for his daddy is more sustaining than he’ll ever know
Oh @judesadventures, you certainly handled the whole so sensitively, but honestly. I was brought up that children were seen and not heard and not told about what was going on (to protect them??). My son is 44 and I look back and I wonder how much I really talked to him, but I suppose I did the best I could with the tools I had. Thanks so much for your post it is so helpful.
I don’t think it matters how old your children are, it’s still one of the hardest things to deal with and to find the right words. My son was 18 when I was diagnosed and we spoke to him face to face and gave him all the details we had available at that time. He completely crumpled and just cried horribly - that was very very tough. It still upsets me to think of that moment 5 years down the line. I think you have to be honest and prepare your children as best you can -
I agree it is one of the hardest things I have ever done and my son said very little when I told him, he appears very happy go lucky, but is he really? 14 yrs later and he is now 44yrs old and bounced back to live with us and just seems to accept it. I talk about it openly, as you say we do the best we can.
Thank you Jane, I will take a look at these. Hope you are doing ok
I can imagine this was so hard, the last thing you want to do as a parent is be the cause of upset isn’t it. How has your son dealt with it since? Now that you are doing ok has he needed to talk about his side of things?
Warm regards
We were in a very similar position as you, I was rushed into hospital one night and never came home for the best part of 6 months. My daughter too is very sensitive, insightful and thinks very deeply so we were honest with her but chose our words carefully. She too has asked some very difficult questions, some have taken my breath away. She was 8 at the time and when I think back it tears me apart to think of how she must have felt to not have her mum when she needed her the most. My Leukaemia is part of our daily lives which I sometimes think is odd for a child but we’ve had no choice, she comes with me to my hospital appointments, has seen me broken and we have laughed again too. Like you I feel its good that she expresses her thoughts and feelings so that we can work through them together.
Take care
My son will talk about things openly whenever the subject arises…which is rare these days as I’m currently well. He does say it was particularly tough and he felt helpless at times though he was a fantastic support thru the gruelling inpatient chemo. He has also said that he appreciated the honest conversations we had even tho they weren’t always easy to hear and the whole experience definitely brought us closer together as a family. I know he did venture to our local Maggies Centre and his friends were also very supportive.
I lovely to hear that you are doing well and that your son has adjusted well though going through this with you must have had an effect on him, like it will have on you. It certainly changed us and like you brought us closer together. I feel that being open about it means that in the future my daughter will be comfortable talking about it and sharing any worries she has.
Hello @Nic62,
Do you have any tips for people in similar situations who have to speak to their family or children? Do you and your 18 year old son talk regularly about your health or even hospital visits?