Hi there. I was recommended to join this group by MacMillan (who have been fantastic supporting me). My ex partner, we share a beautiful 8 year old daughter) was diagnosed, by accident, as these cancers usually are, back in October last year. He was originally being treated at his local hospital but once they found the tumour (which is in his chest cavity and pretty big at 9cm) they transferred his care to The Royal Free in London. They then did a number of scans as they said the large tumour he had was the secondary tumour. They did explain at this point the primary tumour may be very very tiny and they may not be able to find it. The following Oncologist appointment, which we attended together and were told that the primary tumour was most likely in the lung, although they didn't find it, but that my ex had inflammatory lung disease. It had also spread to the lymph nodes under his right arm. The Oncologist started him on a course of chemotherapy tablets (one type for 10 days then a second type for the last 4 days) and he would have to do this two weeks on the tablets then two weeks break. The hope was that this would shrink the large tumour and prevent any further spread of the cancer. He was told he would be scanned regularly to check on the progress. My ex is a man and being a man can be stubborn and he doesn't understand medical things like I do...as I had Thyroid Cancer 12 years ago which I survived and my younger sister is a GP. In January my daughter and I took my ex out for his birthday and he was very frail and in a lot of pain with his hips and back. Skip forward to two weeks ago. I work in Russia as a rota governess so I am away 2 weeks then home 2 weeks so we share residency of our daughter. I flew in from Moscow on the 11th of March and immediately noticed he had deteriorated...he was very forgetful such as calling me 10 times in one hour to say the same thing. And he would get aggressive too, which is not like him at all. He would shout at our daughter, who knows he has cancer and she is scared of him now....she is with me full time now as Russia has closed their borders and my ex is deteriorating faster than any of us anticipated. While he was at the hospital the other day I went to his house with my ket and cleaned for him as he can't do anything. I am a clean freak so it took me 3 and a half hours just to do his bedroom, our daughters bedroom and the bathroom and change all the bedding. He came home as we were leaving and there was an envelope pushed through his door. He opened it but couldn't find his glasses so he asked me to read it. I said the Cancer has spread to the top of the lungs, to above the collarbone, to the main airway and to his bones. I spoke to my sister as I don't really understand the medical terms and she said usually when it spreads to the bones its the big ones like the hips and spine, and he had been complaining of pain in his hips and back for months! On the form where it said is there anything else that can be done that would significantly alter the progression of the condition the doctor had written 'no'. My sister explained this is a form called a DS1500 meaning the patient most likely has less than 6 months to live and he had the scan about a month ago, which they probably told him these results but he went alone so probably didn't understand what they were saying. They're talking about stopping the chemo as its not working and cancer is spreading rapidly! And they've ordered another full body scan and a brain scan due to his significant change in personality. Im so devastated and I'm so scared about what I tell my daughter. She knows he has cancer and he obviously wants to spend time with her once we have all completed two weeks quarantine and I will have to go to his house and stay there when she visits him as the head teacher from school has been calling him daily (despite them being closed) and she said she believes that he can't look after her alone anymore, so I have to be there of course and I want to be to help out....but how do I explain the personality changes, sets scared of him now but she needs to spend tike with him before its too late....and this coronavirus crap is making everything so much harder!! Any support would be appreciated, as everyone seems to be leaning on me and Im feeling the pressure so much. Thanks in advance
Hi and welcome to the online community
I'm very sorry to hear that you've recently discovered that your ex-partner's cancer is spreading and it's natural to want to know what to say to your daughter.
Could I recommend that you join the supporting someone with incurable cancer group where you can discuss your worries as well as practical matters.
I don't know if you are your ex-partner's carer but, if so, you might find this information on practical support when you look after someone useful along with this on emotional support for carers.
You may also want to take a look at this information on talking to children about cancer that Macmillan have produced.
Sending you a supportive (((hug))) ......from a safe distance
Thank you for your advice. He is in the process of making me his carer, but we only just got the DS1500 so he has to send that off to Universal Credit but they told him it could take 11 weeks! Unfortunately he won't let me push it for him. I have called a few charities for counselling for our daughter but no one os able to do face to face due to the virus, so its pretty limited...I do what I can to answer her questions and my younger sister is a GP, so she is available for any medical questions my daughter may have.
He didn't want to tell her originally but she's a very smart 8 year old and knew something was wrong and it affected her sleeping and she was making up tummy aches etc....due to my job I have A Levels in Psychology and I work with children so I knew she was worried so I sat her down and very gently told her and after I did that I asked her how she felt, and she said she felt better just knowing about it.
Anyway thanks for your reply, I will look into all of this now, many thanks Jo
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