Hi there
about 6 weeks ago my husband was diagnosed with EHE cancer an ultra rare cancer. He’s currently at the Marsden in London and they were going to surgically remove the tumour but also with it his entire leg! They started the operation and had to stop - so he’s now got a huge scar but the tumour is inoperable. Our 3 children are understandably confused and upset about all that’s been going on but I’m struggling to find any pointers as to how best to help them. I’ve downloaded the advice on how to tell them about cancer but not the ongoing support and councilling they likely need. It’s all been pretty traumatic. My husband remains in hospital and I have been up and down to see him - we live in salisbury. I wonder if anyone has any experience of this and how I can better support both my husband who is distraught and my 3 children age 12,9,7 - I believe he won’t ever be cured now. And he’s pretty poorly atm. Thanks in advance- any books or suggestions greatly received. My bearers Maggie Centre is Southampton but I’m going to struggle to get there with 3 children!
Hi SnevitsLe and welcome to the Online Community but so sorry to hear about your husbands diagnosis.
A cancer diagnosis like this in the family can be such a challenging and stressful time but getting support from others who are dealing with the ‘exact same' cancer type and support challenges can help a lot.
I had a search of the community using the search tool 
at the top and got a few hits for EHE and Epithelioid hemangioendothelioma…… bout the words into the tool and select anywhere and have a look.
The Community is actually divided into dedicated Support Groups (Discussion Rooms) so can I recommend you consider joining and posting in our dedicated Soft tissue sarcomas support group. This is a safe place to talk to others, to ask questions and get support from family members who are navigating the same journey.
When it comes to the practical and emotional challenges of supporting family and friends you may also benefit from joining our Family and friends and Carers only support groups where you will connect with others navigating the same support challenges and a good place to ask questions about supporting your children.
To join a group first click on the “Bold Links” I have created above then once the group page opens click on “Click to Join” when the black banner appears or “Join” under “Group Tools” (this all depends on the device you are using)
You can then put up your own post when you’re ready by clicking “+new” or “+” in the top right next to the group title. You can copy and paste the text from this post into your new post. You can also scroll through other members posts and click “Reply” to get involved.
It’s a challenging time for you so you may want to use 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.
We also have our Ask an Expert section but do allow a few working days for a reply.
Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, As you have already highlighted Maggie's Centre are a great place to find support for children as these folks are amazing. Up in Inverness were I stay it’s not unusual for families to do a 3-4 hr round trip to go to our Maggie’s.
Do get back to me if you need further help navigating the community ((hugs))
Good Morning Snevitsle,
I am sorry to hear of your husbands diagnosis of EHE.
I see you have already have had some useful information from Thehighlander.
You have asked about your children and I have found some links on the Cancer research website that may be of some help. I will pop a link below. The other thing that sprung to mind was have you had any support from their schools? I realise that the holidays have just started but there is a thing called an EHA- an Early Help Assessment which I have previously been involved in and it may be something that may help. It looks at the circumstances around the children, assesses the needs as a family and puts in place support/referral to agencies that may help. It is worth considering as there may be able to be counselling/on going support that could be offered. There is also something called TAC- team around the child which is where the professionals can look at what the needs of the child. It may be worth speaking with the schools to see if this is something that could help.
Below is the link for the resources.
Resources to help you and your children when you have cancer | Cancer Research UK
Hope this helps a bit.
Jane
