Guest post: "My husband has incurable brain cancer - and I have to hold our family together"
Lucinda Melcher (aka lu9months) shares how she discovered her husband's brain tumour and how they are coping with his diagnosis
Posted on: Wed 01-Jul-15 09:47:08
(17 comments )
I think secretly, those of us who treat cancer think we may in some way be protected from sitting on the other side of the desk. As a fit and healthy 44-year old doctor with no family history, married to a non-smoking, fit(ish) 44 year old lawyer, I thought we would probably be okay into our old age.
It was May 15th last year when I finally took my husband to work with me and deposited him in A&E, fully expecting to send him happily on his way once he had had a CT scan to rule out anything nasty. After all, his headaches had only recently become bad, and he didn't have any other 'red flag' signs – there was no vomiting, no seizures. The idea of a brain tumour never once entered my mind, despite the fact that I am a cancer specialist.
So when Adam phoned me to say he'd had his scan but no one had told him the results, I checked my computer so I could reassure him and he could get back to work. What I saw was an image of my husband's brain, where the entire right temporal lobe was replaced by an aggressive-looking tumour. There was a lot of swelling, to the point where it was shifting some of the normal structures from their usual positions. It was unbelievable. How could this be happening? How could I not have seen this coming? I broke down.
Just over one year later and Adam has been through surgery to remove his right temporal lobe, chemo and radiotherapy for six weeks, and another six months of chemotherapy. The prognosis we were given for his incurable brain tumour? A median survival of 15 months. It is hard to believe, at least while he remains relatively 'okay'. He has written a successful book about his experiences, Pear Shaped, which has had amazing feedback. He is working full time as a corporate lawyer and we are bringing up our three children who are now 13, 10 and five.
I am emotionally tired. In some ways I am a better doctor for being a patient's wife, but I am not sure I am a better mum.
From the outside things look pretty good. We are coping, and I am very grateful for the time we have, which others with the same diagnosis don't: 50% of those diagnosed at the same time as Adam was would not have made it this far. We are luckier than many - we can manage financially and we have wonderful support from friends and family, which lifts me up whenever I am down. We aren't religious but belong to a religious community which is sustaining and supportive. The children’s schools have been wonderful and the teachers go way beyond what I ever expected from them. And, crucially, we live in a country with access to excellent, free at the point of delivery cancer treatment. I have been in touch with many patients in other countries, including America, where people who don't have the necessary insurance struggle to meet the cost of treatment. I'm so grateful that no one ever asks me to get a cheque book or credit card out when we have hospital appointments.
However, the world is a very different place from the one I inhabited pre-May 2014. This has come with some positives: I don't have time to worry about petty things, and Adam and I are closer than ever. But it is also a struggle to cope with the kids when I am emotionally tired, to support Adam, and to be there for my patients. I think in some ways I am a better doctor for being a patient's wife, but I am not sure I am a better mum. The kids have their own worries and anxieties and I need to understand and manage these while trying to manage my own. I feel like I am the glue holding the family together, and we may come unstuck if I don't do my job well enough.
On we go, though, one foot in front of another. We remember to treasure each moment, we make sure we tell each other how much we love each other, and we live each day as best we can. There is the usual amount of arguing at home, but also a lot of fun and laughter. Adam teaches the kids to spar and gives them endless quizzes based on his amazing knowledge of useless facts ("what's the only substance other than ice you can skate on?" Antimony. Who knew?). We are living with a ticking time bomb, but we have to live our lives in the best way we can, while we can. I know I can only do my best.
Adam Blain's book Pear Shaped: The Funniest Book So Far This Year About Brain Cancer, is available to download here.
By Lucinda Melcher
What a shock for you all! I do hope Adam continues to beat the odds. Haven't seen his book but will be sure to have a look and get hold of it somehow, thank you.
Love and strength to your whole family.
Thank you for a beautiful post Lucinda and for making me count my blessings. All the best to you and your family.
I too cared for my husband through terminal cancer and it truly is hard to know what to do and how to behave. He was given 6 months but he carried on bravely and we had 17 months of his time.
Just breaking the news to, not just our children..but all family and friends was difficult, and they all re-acted differently.
My biggest 'teacher' throughout his illness was our daughter. When she phoned or visited and asked how her Dad was..we always said 'he's fine'.Very quickly she sat us both down and said she felt insulted and like she was being pushed out. She could see that her Dad was coping physically most days..but was interested in our emotions. Then she felt able to share her feelings with us about the inevitability that she would lose her Dad. She asked us to keep her FULLY informed, which we did and it seemed to make things a bit easier and more open.We could answer a lot of her questions and felt happy to ask her for her help on occasions when things were tough. She shared the caring for her dad with me..including 'sitting in' when the doctors and nurses visited us..and the times when we tried to get morphine intake under control.Sometimes now, we laugh about the hallucinations he would get and how funny his behaviour was...never forgetting the seriousness of what was happening. Fortunately (I suppose) he didnt suffer too much and although the end came very quickly she was able to be by his side both throughout his illness and at the end.
I would say..dont underestimate your children..they are more savvy than we think. Their is no way to protect your children through such a journey and the best thing I did was invite my children in...trust them..listen to them...wipe away their tears at times...and show them how upset I was too by crying in their arms and being hugged by them
I wish you and your family many happy times in the future you have left....and yes.....doesn't it make you closer and remind you how powerful true love is..
Hi Lucinda, we are going through the same, DH was diagnosed at 33, DS was 4 and DD wasn't even 2 yet. DS started school the day after DH had a 13 hour operation.
We are now nearly 2 years' post diagnosis and currently you wouldn't know there was anything wrong with DH. We are both working too.
All the very best to you and your family. I haven't and won't read the book because it's too close to home (I also lost my brother to the same disease as a preschooler) but I hope it does exceedingly well
Sorry you're going through this. My father was diagnosed with incurable brain cancer earlier this year and is following a similar treatment plan to your husband. I'm finding it hard, with two young children, work etc and can't imagine how difficult it must be for you. Good luck.
Another one here sorry to hear what you're going through. My DF was diagnosed with a GMB4 in January and given six months to live. He is still hanging in there but sadly there was no treatment as the risks were too great. to everyone on this thread.
My brother has GBM4 also, and is following a similar treatment plan. He is 18 months in and coping incredibly well all things considered. We are all very different people now to before he was diagnosed, as you say this is a double edged sword. We try to remember how lucky we are to be able to tell him and show him that we love him, so many people don’t get that opportunity.
Sorry very sorry to hear what your family is going through.
Being a medic is a double edged sword I guess in your shoes.
Take whatever support is on offer, you are probably getting through the days on adrenaline, it's a surreal position to be in.
My DH had a GBM4, I received a lot of support on both mumsnet and the Macmillan brain tumour forum.
Macmillan nurse was amazing and helped me to explain things to our children, and dealt with anything she possibly could.
Please keep posting if you find it helps
You can skate on antimony?!
Thank you for posting, my husband is also called Adam and also regales our kids with useless facts. We're incredibly lucky that his BT is benign. His tumour insists on hanging around but hasn't caused any real trouble for the last few years.
Awareness of BTs has increased so much since my dh's diagnosis 11 years ago and that's down to people like you writing posts like this - as well as the great work people like the Brain Tumour Charity do (I saw you on their fb page!) As we all know, raising awareness helps to raise funds which in turn furthers research. Thanks once again from BT sufferers and their families everywhere.
All the best to you and yours.
Lighting candles in my mind for you.
As someone who lost her DF when your oldest's age, the wound goes deep and I strongly recommend family and individual counselling, and also seeing if the children can ask questions of his consultant and or a specialist counsellor. Preferably by themselves or on email. They will be desperate not to upset you and won't want to ask you things or in front of you for fear of distressing you further. The questions may be like is it catching or will you die now, or what shall I wear at his funeral or will he get better or how long or can we go in holiday, ie deep or banal. Important they see and talk to his doctor, not just you.
I'm sure you know this, but they need that space to ask without guilt.
And when Ds was desperately ill himself, we made it an intellectual exercise. Much more bearable that way. Sounds as though your DH is doing the same, well done. Antimony also known as monk's bane ( anti monk...antimoine). So no monks allowed around him...
Have BT myself but benign. But thinking of of you all.
Lovely post. I lost my mum to GBM4. The work you and Adrian are doing to raise awareness of this disease is wonderful.
I'm so sorry, Adam auto corrected to Adrian.
My heart goes out to you and you are being so brave - and so is he.
I lost my darling brother to an aggressive brain tumour. We were 'Irish twins' born within a year and as close as could be.
We were living in Spain when it happened and after three mis-diagnoses and a fight with the Spanish NHS to get him treated he had surgery, radio and chemo - he lived for 18 months.
But count the small blessing that you are in England. In Spain I was expected to sleep at the end of his bed after surgery so I could look after him, there were no cancer nurses, no support for any of us (I was a working single mum looking after my own mother who'd had a stroke and my two year old daughter). The nearest radiotherapy was available an hour and a half away so he was picked up by a mini bus and driven there with ten others in the heat every day for six weeks.
Anyway you don't need to hear all that, I only tell it because with financial comfort, Macmillan nurses and the NHS you have a fighting chance of keeping some semblance of normality for the kids.
I think the hardest bit is dealing with your own tiredness and grief when you are supporting someone else. In my case it was my mum, but for you it will be the children. I do hope you are given the courage and strength to keep your wonderful spirit.
I bought his book when you first mentioned it on MN and was incredibly moved by it. I've always wondered how he was getting on and am so glad he's had this bit of extra time; I hope he has a lot more.
to you all.
Lu. My heart simultaneously hurts and jumps for joy for you.
I wish you time, peace and grabbing the happiness wherever and whenever you can find it.
Good wishes and thank you for your post x
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