Hi all,
mum has got secondary BC and was admitted to hospital last week extremely breathless. At first they assumed it was a chest infection but after a ct scan, they told us that they had found a suspicious mass on her thorax which is pressing on the nerve to her vocal chords and causing her breathing probs. it could be mets or it could be lung cancer but she’s too ill for them to perform a biopsy to find out. They have said that there’s nothing more they can do for her.
mum is being incredibly brave but we are devastated.
a while back I posted something asking how I explained BC to my then four year old boy. I got lots of good suggestions and breast cancer care sent me “mummy’s lump” which I got ideas from. Now that mum is reaching the end of life though, I find myself struggling to find a way of explaining it to him. I’ve always been honest with him and want to be straight with him. He’s asked me “what happened to Nanna” and I’ve said she’s very poorly and that I don’t think she’s going to get better. My mum suggested telling him she was going to have a long sleep but I’ve read that this is not a good idea as it can make children frightened of going to sleep. I’m not sure that even the word “death” would sink in as he loves Harry Potter and of course Harry Potter dies and then comes alive again.
any tips would be appreciated. Mum has asked me to get him to release a balloon after she’s gonEthan’s send it up to her which I’m going to do with him. Any ideas about how I prepare him would be appreciated. Mum is on constant oxygen now- do I take him to see her or let him remember her as she was before?
going to sign off now- it’s so hard to think about all this
Mals x
Hi Mals
Could I suggest you give the helpline team here a ring and have a chat with them, they’re here to support you. Lines open at 9am today until 5pm (weekdays) and 10-2 Saturdays. 0808 800 6000.
Take care,
Jo, Facilitator
Mals, I am so sorry you are all going through this. I think your Mum is very luck to have such a supportive and loving daughter, and as for your son-he is also lucky that he has such a lovely, caring Mum.
It is a very difficult one I do admit. Birth and death are the natural order of life and like you don’t want to shy away from life. Telling him that Granny is poorly and probably won’t get better is a very kind and gentle way to introduce him to her illness. After all he is only 6, he doesn’t need much more info.
As for visiting your Mum with your son, well, I think it’s up to you. I know my Dad didn’t want to children to visit him when he was ill, but when the girls turned up in nurses uniforms he was delighted!
When your Mum passes I think being honest saying that her body is in the ground but her soul and heart is in heaven ( if you are a christian) may try to help. Revcat who often comes online may help you, she is very wise with words of comfort and advice.
My heart goes out to you, your Mum and your son at this very traumatic time…hugs to you all…xxxx
Hi Mals
I suggest you look at the Winston’s Wish website which has lots of resources and a helpline.
Take care
Moya xx
Thanks all,
I will make use of the resources you have all suggested. At the moment I’m in what can only be described as “robot mode”, attempting to sort out my mothers will and other wishes she has that she’s asking me to make a note of. I don’t think the news has caught up with me yet as I’m busying myself with practical stuff and trying to do the best I can to ease any worries my mum has.
this is such a heartless illness, watching someone who is strong and vibrant fighting and being overcome by the inevitable. I don’t think I will ever get over what I have witnessed or am about to witness as my mum goes through this journey. I’ve seen Rev cats posts and agree that her words are very comforting (as are all yours). I am a Christian but at the moment I’m struggling with my faith perhaps unsurprisingly. I too watched my nan die of cancer and I do remember being with her when she died and just getting a strong feeling that after she passed away, her body was just a shell and she was in a better place. I’m clinging on to that thought right now for comfort and to give me courage to face the path ahead.
Mals x
Hi Mals,
I am so very sorry to read your post, and want to start by sneding you a huge cyber hug.
There is beautiful picture book called ‘Badger’s Parting Gifts’ which I think is helpful for adults and children. It tells the story of an eldelry badger who dies, and whose friends recall the priceless gifts he has given them , not materially but memories, emotionally and ‘spiritually’. Another little book called ‘Waterbugs and Dragonflies’ explores the idea of life beyond this life as the waterbug climbs the reed and emerges into the air as a dragonfly; ther eis no way back to tell his (sure it should be her but never mind) friends that life is happy, but he can still still glimpse them through the water’s surface. Either of these should be available at your local library or a good bookshop. I think you are right to avoid euphemisms like ‘a long sleep’ or ‘gone to visit Jesus’ as these are unhelpful. You will find your own form of words which capture the truth without scaring him.
Winston’s wish has a great website and is defintely worth a look http://www.winstonswish.org.uk/
I believe that most schools have a ‘bereavement box’ of resources that can be offered, so it is definitely worth telling the teacher so that s/he can offer support to your little boy at the right time.
At times like this it can be very hard to keep believing - and this is the time when others of faith must hold onto it for you. I hope that doesn’t sound glib or patronising. For me the Gethemsane story is one that has a sense of abandonment and fear that resonates with these intensely painful places; some of the Pslams show that the ancients did not mince their words in telling God how they felt! I firmly beliive that your Mum will not leave you until you are able to cope without her. it is very hard to decide whethe ror not to let your son see your Mum, but your heart will help you make the right choice.
Despite everyone’s kind words about me, I’m not sure this will have helped much, but feel free to PM me if you wish, and I can try to explore things with you that way.
Take care xx
I just wondered whether it would be a good thing to talk to his teacher or nursery staff too. just to let them know what is happening in your family, and perhaps they may have some advice, and they may look out for him if he has any upsets at school or nursery. Perhaps they cover some bereavement issues in the books that they read witH children - not sure at what age they start with this at primary school… Any teachers here who can comment?
big hug to you, tough times.
christine
Many thanks all and your words are comforting Rev cat. Christine- it’s ironic that you asked me this question as shortly after my last post, I got a call from the school to say that he had hiddein under some steps in the playground and was refusing to come out and would I go in straight away. Of course I knew why and I had mentioned it to his teachers but only in passing whilst dropping him off. This gave me the opportunity of talking some more with them. And of course I chatted to my son and asked him directly if he had done it because he was upset about nanna ( he hid there for nearly an hour). He said he wants to see her which is tricky because she’s in hospital and its no kids under 12. I showed him a picture of her- a very private one that I had taken with her a few days ago. He was very keen to look at it. Mum doesn’t want him to see her in hospital and is hoping to be discharged shortly (she’s going to my sisters) so I will wait until then. My “robot mode” dropped when the teacher suggested my mum talk to him on the phone as her voice is almost completely gone and is just a whisper- I just burst into tears.
Thanks all once again. It’s good to know there are people out there.
mals x
Double whammy today. Consultant found new mass and says mum has only a few weeks but could be imminent. We were devastated. then came home to find my sister had a letter calling her for a biopsy. She’s had primary BC and had an MRI two weeks ago to find out why what was thought was an oily cyst was growing. A nightmare is the only word. My mum and sister. Timing is unbelievable.
got the books- bought a tear to my eye. The dragonfly and waterbug analogy is beautiful.
thanks for all your cyber hugs.
Mals x
So very sorry, Mals, there are no words, all we can do is come alongside as best we can. I hope and pray that the palliative team will manage your Mum’s pain so that she is able comfortable and still able to share some precious moments with you all. I really do believe she will only leave you when you can cope - even if that seems impossible at the moment.
It must be terrifying for your sister just now, and as you say the timing could hardly be worse. I really hope they are just being very cautious and the results good news.
Glad the books are helpful.
My thoughts and prayers are with you all xx
Pease don’t lose faith Mals. OH and I recently read this in church grounds whilst on holiday.
"Why will ye call it death’s dark night?
Death is the passage into light:
Behind it’s gloomy purple gates:
The everlasting morning waits.
Also read from NT James 5 from verse 7. I was dx in March and currently undergoing chemo. I know i wouldn’t be able to cope without my Lord and faith and that I will meet with family again. My children also believe that’s where their nanny is which has helped them so much when she died.
My vicar said at a recent passing that our family was long large chain and as one chink leaves this life another chain is getting longer in heaven.
I wish you lots of faithful love and hugs at such a difficult time. Sandy xxx
Mals:
I am so sorry to hear of this trying time for your family. I am not sure how great it is for kids to see relatives with terminal cancer. My ED’s MIL had an op for lung CA last year and went into a crisis which eventually ended her life (NOT the cancer!). When she was moved to HDU she asked to see the grandchildren; The night before the visit, the 5 year old grandson developed croup (probably the first sign of what was later diagnosed as glandular fever) and had to go to the children’s ward (different hospital, different town) to be ventilated with tiny facemask etc. Having recovered beautifully off they all went to see Grannie, who was surrounded by people with face-masks (of course!) Little one was a bit subdued afterwards. Later he told his Sunday School teacher he thought he had cancer. (because of the face-mask!) Luckily she’s a lovely lady who knows him and the family really well and she was able to set him straight! I’m normally all for kids to be taken into the circle of confidences about a terminal diagnosis, but this was for him at that point maybe one step too far. Had he been completely well and not had that hospital experience (his very first and only) he would probably have reacted differently. I think in the end he would say it was a good thing to see Grannie although a bit scary. Thankfully, no lasting damage has happened and he and his siblings and cousins have been very positive about my dx (which was only 3 months on).
I do think your mother’s concerns about his seeing her can be taken seriously and if she can’t manage a phone call could she send him postcards? Children love postcards and they don’t have to be from holidays. Most of the shops round us sell animal postcards…I’m sure she and your family can think of a way to do this, and maybe can write the postcards to her dictation if she’s not up to writing. Perhaps these postcards can be treasured in a “Grannie box”, to be looked at later or again and again. If she decides to post them maybe she could choose special stamps to make them even more interesting? (I know postage is expensive these days but it might be fun for her too)
You and your family will have “remembering Grannie moments” when activities have to stop and a tear shed. Eventually (if our experience is anything to go by) these moments will seem more and more like sharing the happy experiences with the one who has left you. Good luck!
Sandy- that was amazing. You said a lot of what I am feeling about my Saviour!
Thanks all for your lovely thoughts and ideas. Mum came home today (well to my sisters) and she has a Marie curie nurse in tonight. I’m going to take my son at the weekend (I’m visiting every day). It really does teach you to live in the moment. Planning is so futile.
happy she’s in a home environment with family.
mals x
So glad to hear that your Mum is out of hospital - it will be more peaceful for her to be in a home environemnt and surrounded by the people she loves best. Marie Curie nurses are amazing and will help make her final weeks or days as good as possible for all of you. I htink it is good that your son will able to see her in a home setting, and remember her that way in years to come.
Do make sure you take good care of yourself at this time xx
Update: my boy saw his nanna this weekend. At first he avoided her but strangely enough when he saw her nebuliser he said “mummy I had one of those when I was little” (he did) and the ran in to say goodnight to her. Suppose it made him relate to her. He picked her some lovely flowers in the garden and I have a beautiful picture of her holding them next to her heart which I will always treasure. My sister has been told her MRI was “suspicious” so has had a biopsy today. I’ve been signed off work for 2 weeks as I can’t sleep and when I do I’ve been sleepwalking. No prizes for guessing why. Trying to make time for myself and maybe it will be easier with time off work. Mum getting more tired by the day. The Marie curie nurses have been fab and give lots of good advice. Helping us through this horrendous journey.
mals x
So glad your litlte boy was able to have that speical moment with his nanna, and that oyu have the photo to remind you all of it.
Your poor sister. I ohpe she doesn’t have to wait too long for results and knows what her next steps are.
Look after yourself, and don’t be afraid to ask for more time off work if you need it.
Will continue to keep you all in my thoughts as you walk this painful path together. Use this site when you need it, and lean on those Marie Curie nurses, that’s what they are there for. Gentle hugs xx
Mals- I was go glad to read your lad has been able to spend some time with his nanna - it’s such a hard time for your family but this must have been a moment you will always treasure. I just hope and pray you can get some rest now over these last few days of the school term! Take care…of yourself, your family and your Mum. xxP
Hi all,
mum still with us and spending precious time with her. She has a collection of fluid on her lungs but draining it would mean a visit to hospital and she doesn’t want to do that which I respect. Just want things to be as comfortable as possible And hoping her decision won’t make things too awful.
Mals x
Hi Mal having just read all of the posts just want to send Loving thoughts to you and all of your Family Meg x
Thanks meg x