Hello everyone,
I'm posting this as a request for guidance and support for myself and my wife and son as we deal with our daughter's condition.
We received her diagnosis back at the beginning of November. She has Stage IV Ewing Sarcoma (bone cancer), which by the time it was detected had already spread a lot. As things currently stand, she is undergoing chemotherapy (she's on round 4 of 17 I think), and is in pretty decent shape. The chemo knocks her out a bit, but we're finding after a day or so at home she is up and about, driving, socialising and not in pain, which is great.
However, the reality of our situation is that her cancer is not curable. This was brought home during a recent meeting she had with her consultant. Radiotherapy is off the table (too many tumours, too dispersed), as is surgery (would involve removal of bones). At this point, the situation is such that as long as her body can withstand the chemo, and indeed it's doing it's thing, then all good. There will come a time when that situation will change of course.
What we don't know is when that's likely to happen (nobody does), or what the way ahead will be at that stage. What we have to face however is the reality that her lifespan is most likely to be considerably shorter than it should have been, and that time could be anything from a couple of years to a decade or more.
We as a family are a close team. We don't dwell on the negatives, but neither do we harbour false hopes. We - especially our two wonderful children - have turned this nightmare into something positive through fundraising and awareness campaigns.
My wife and I particularly though feel a little adrift about how we go about the day to day now. Given our beautiful daughter is - visibly at least - in pretty good shape, we feel partly that we should be using this time to cram in all her 'bucket list' wishes, whilst on the other hand we (our daughter especially) feels that doing so will actually have a detrimental effect on her mental health, as it draws attention to her condition acutely.
Also, there will be a point where we have to make practical plans and arrangements for her... do we do that now, despite her seemingly in good health, or wait until the inevitable is tangibly closer?
There aren't many parents who ever have to go through this. It isn't in the manual. Any advice / personal experiences etc would be most welcome.
Thankyou very much
Hello Matt
I remember your family from when you posted and I had wondered how things were going for your daughter and family.
I am sorry that your daughter is now undergoing chemotherapy and hope that she is not having too many side effects. I had chemo myself and found the first few days of each cycle were the hardest and then things improved. If she does have side effects make sure she speaks up as there is often things that they can do to help.
It must have been incredibly hard for you as a family to hear that the cancer is incurable but I hope that the chemo will help keep things at bay for as long as possible.
There is so much uncertainty in a cancer journey and it is hard to know what to do and when. It can feel a bit like a balancing act I suppose, I know myself I felt like going with the flow was the best option during treatment whilst also thinking about the what ifs. All I can suggest is that as a close family you keep talking to each other, nothing is set in stone and feelings can change from day to day. I personally found during the shock of diagnosis and during the different treatments, I could not really focus on a lot else. On bad days I had to accept it was a rubbish day, rest and recuperate and on good days I wanted to make up for the bad days. It was hard to think of longer term and the bigger picture. I didn't actually feel I was able to process much until my active treatment ended. I completely get that you are thinking of bucket lists etc but I can also see your daughters point of view that it may have a detrimental effect on her mental health. It's almost as if by doing so, she needs to think about the future and what it could bring. Maybe there is some sort of half way point where you plan things as a family, much in the way you would normally do- such as a holiday here, a day out there but just being more mindful of including a few more special things in.
With the chemo, I found that for me the effects could accumulate and also the tiredness, so whilst she is having treatment, if she is anything like I was, it may be that some days she feels up to things and some days she doesn't so for me long term plans were hard to make but ones made the same day or a couple of days in advance were better. Also to have days in between where I could just recover.
It speaks volumes that as a family you are trying to raise awareness and to fundraise and this is something practical that I believe will help.
You speak about practical plans and arrangements and this is something to be aware of but without any certainty it is very difficult to do. Again it's sort of going with the flow and trusting that the doctors will keep you all informed of how the treatment is going, how her health is and about what you can expect. With each chemo and with each scan/blood test etc they will have an idea of how things are going and will know when to suggest to you extra support. Keep having those open and honest discussions with her, her CNS and her oncologist. With my Mum, several years ago, when she did go into decline and her chemo was not working, it was not a sudden thing- it was a gradual thing and at each stage more support was put in place. This included practical plans and arrangements.
I agree it is not something that many parents have to do and it feels against the natural order. As a parent, I expect to go before my child, not the other way round. It isn't in a manual, there isn't one.
I wonder if some of these may be of help.............
Parents of children with cancer forum | Macmillan Online Community This one is for parents of children of any age going through cancer. Perhaps it would help to share and read of the experiences of other parents.
Supporting someone with incurable cancer forum | Macmillan Online Community This forum may hope as it is a place to share the difficult journey with incurable cancer with others.
What we do - Young Lives vs Cancer I think I may have shared this one with you before, but there are many links on here that are worth looking at. It maybe that some could be a starting point for family discussions as sometimes it can be difficult to bring up some of the hard questions.
The Charity Fighting Childhood Cancer | Children with Cancer UK Although your daughter is a little older, there is still some useful info here.
Home | Sarcoma UK This website has an area specifically for Ewings sarcoma and there is support here for both your daughter and you as a family
Anticipatory grief | Grieving Before Someone Dies (cruse.org.uk) I used Cruse myself after my Mum's cancer journey. Although your daughter is coping well and responding to the treatment it may be at somepoint when you are ready, valuable to have a look at the pages on anticipatory grief. It helped me.
Maggie's | Everyone's home of cancer care (maggies.org) These are really good for offering support to the whole family and there may well be one near you or one close enough to travel to that could offer practical and emotional support and would be able to guide you further.
I hope that this helps a bit and please remember that there is the Support Line from 8am - 8pm each day and you can ring that if you think talking things through would help and also to ask if there is anything else in your local area that would help.
If there is anything else you need, please do ask but I wish your daughter the best for her treatment.
Jane
