Hi,
This is my first time posting on here and I’m really hoping to get some advice as I’m feeling very overwhelmed.
My husband was diagnosed with Leiomyosarcoma on the outside of his bowel last week and we are awaiting an appointment to discuss his treatment plan. We have both been left absolutely reeling from this news.
We have two beautiful children (a boy and a girl, age 14 & 11) who are both diagnosed Autistic, ADHD wwith severe anxiety (our son is also diagnosed with PTSD). Both are very bright and intelligent and are at an independent specialist school. Both my husband and I are incredibly worried at the prospect of having to tell them of his diagnosis and have absolutely no idea of how to go about this without impacting on their already very fragile mental health. I am trying to process everything myself now in the hope that I will be better equipped when the time comes to tell them.
Over the past 2 years, not only have they both moved schools and struggled with the changes to their daily life brought about by covid but they have also lost their Grandad, Great Grandma and uncle in the space of 18 months. We are worried sick about the effect this most recent news will undoubtedly have on them as they have only just started to make some positive steps forward. We know this will set them right back.
I am looking for any advice, aimed specifically at supporting Autistic children through this awful process we are about to embark on as a family. Their school has been informed and are very supportive but I’m grasping at any information available.
Thanks so much. X
Hi and a warm welcome to the Online Community although I am so sorry to hear about your husband's diagnosis. A cancer diagnosis in the family like this can be such a stressful and challenging time but I do hope you find the community a safe place to get support and ask your questions.
As for specific help around your husbands diagnosis can I recommend that you consider joining our supportive Soft tissue sarcomas group. This will be a safe place to talk to others who may have a similar diagnosis, treatment experience, to ask questions and talk with others who are supporting family and friends on their journey.
If you'd like to connect in with a group click on the Green (Bold) link I have created above. Then once the group page opens click on the black banner that says [click to join] at the bottom, or the [Join] button under "Group tools."
You can then introduce yourself by putting up a ‘new post’ by clicking in the box near the top right with + New or + (Depending on the device you are using) and you are ready to go.
You could copy and paste the text from this post into your new post as there may well be someone in the group who have faced the same challenges and as always you can reply to existing ‘Discussions’ by click [reply].
When it comes to the practical and emotional challenges of supporting your husband and your family you may benefit from joining our general Family and friends and Carers only groups where you will connect with others supporting family and friends
The Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00 or via Webchat and Email too. This service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear and our Cancer Nurse Team in our Ask an Expert section helpful but do allow a few working days for a reply.
Talking to people face to face when on a cancer journey (patient or family) can be very helpful but during these strange times it’s not that available but do check to see if any Local Macmillan Support in your area has opened up.
Do also check out for a local Maggie's Centre in your area as these folks are amazing and provide support for all the family and especially the challenges surrounding your children.
Always around if you need further help in navigating the community.
All the very best.
