It’s been three weeks now since my husband Roger moved to our local hospice, and two weeks since I had my first overnight stay there.
I still haven’t got round to writing about how that went so I’ll tell you now – it was fab! So special to be able to spend some time together, just hanging out and chatting, having a drink (wine for me, tea for him) and watching a film. The staff at Wirral Hospice St John’s are amazing, so kind, ready to listen when we need to talk and happy to leave us together when we need time alone. Nothing’s too much trouble for them and in this awful situation it really does help.
We’ve had a difficult week, after Rog developed an infection and became quite poorly, I really thought his chances of making it home where dwindling and found that very hard to take in. To see someone you love in so much pain is heartbreaking, and although he’s still the same strong person he’s always been, to see what effect cancer can have on the body is horrific. One of the hardest things I’ve found to think about is the uncertainty of not knowing what’s coming next, how long we’ve got, or what to expect. When I spoke to his doctors about this they just advised to make the most of every day, as no one can predict what will happen in the future or how quickly he might deteriorate.
With this in mind, we’ve spent more time at the hospice together as a family, and I’ve been talking to our eldest about how poorly his dad is and how we all need to show him how much we love him. I’ve started a separate post about my experience of talking to him about what will eventually happen, but let’s just say when I collected him from the childminders’ yesterday he told me: “Mum, I told the teacher that daddy’s going to die.”
Ok. Deep breaths. Followed by: “She said I could choose a special book to take home and look at with daddy,” and a small smile and a hug which told me that made it a teensy bit better for him. These conversations are unthinkable to most people, and I can tell you they are still unthinkable for us even though we know we’re having to go through them.
It’s hard enough (impossible) for Rog and I to get our heads round, so God only knows how a six-year-old can be expected to process it. Plus, the unpredictability of Roger’s illness has meant his body has shaken off the infection and he feels better than he has in months. A few days ago, we walked together up the corridor of the hospice to the cafe, and sat and had a drink together, something that we haven’t done since Christmas. Yesterday, he tried walking up and down their stairs and managed it with limited problems. Today, he is coming home for the weekend.
Yes, the whole weekend, if he can manage it, will be spent in his own home enjoying a bit of normal family life. I’m so excited, I feel like I’ve been preparing for a five-star holiday! I’ve cleaned the house, stocked the fridge and bought treats for the kids to keep them entertained. Sam and Florence are looking forward to it too, with Sam having lined up an itinerary of activities for his dad to do (or watch, depending on how things go). These include playing with his Star Wars toys, reading his Oceans book, and recreating some Disney Collector videos in the kitchen (more on this later too, if you’re not familiar with it, it’s basically adult Americans playing with toys and putting it on YouTube).
There’ve been fresh questions like “so is daddy not going to die?” and “why can’t we just keep him here forever?” which take a bit more explaining, but for now, I’d better set off for the hospice, as our VIP needs a lift home.
Happy Bank Holiday everyone,
X Julia
PS The photo shows Sam playing with his homemade bouncy eyeball!
53 Comments
Emma
May 1, 2015 at 11:22 amHave a wonderful family weekend together, Julia. I’ll be thinking of you.
Lots of love,
Em xx
Mackenzie Glanville
May 1, 2015 at 11:23 amI just love that photo, what a beautiful child you have. My heart goes out to you and my prayers too, may you have a lovely weekend xx
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sarah christie
May 1, 2015 at 11:49 amJulia this is the most beautiful but heart wrenching post I have ever read, you are so inspirational, yes I know you will say you have no choice but the way you are leading and supporting your family through this is incredible, have a beautiful family weekend, I will be thinking of you all xx
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Caro | The Twinkles Mama
May 1, 2015 at 11:57 amAaah darling — you’re so amazing. I think you’re coping with everything really bravely. And documenting it in your blog is so inspirational. I’m sure that other families, who are going through similar ordeals, will take comfort from it.
So happy that Rog is coming home this weekend — even thought it will be tough — I’m sure having him home will be a tonic for you all. Lots of love — thinking of you xx
Caro | http://www.thetwinklediaries.co.uk
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Everything Mummy
May 1, 2015 at 11:57 amI hope you have an amazing weekend together Julia, Thinking of you all xx
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Hayley Smith @hayleyfromhome
May 1, 2015 at 12:18 pmJulia the whole thing just breaks my heart. I think you are an exceptional lady, I hope that writing it all down is helping you and I’m sure other people going through a similar thing would take comfort from it. Sending so much love to you and your beautiful family, I hope you have a lovely weekend together xxx
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Kat | Beau Twins
May 1, 2015 at 12:24 pmAh darling I had to catch my breath then. I do hope he can stay all weekend but something is better than nothing. Thinking of you all. Enjoy my gorgeous. Laugh much, love more. Big hugs. Xxxx
Katie Haydock
May 1, 2015 at 12:28 pmWonderful WONDERFUL news! I’m so excited for you have your whole family at home.
Whatever the uncertainty Julia, you are doing amazingly. You gorgeous, brave, inspirational lady
xxxxxx
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katy (what katy said)
May 1, 2015 at 12:30 pmI hope this weekend brings sunshine and laughter for you all. Precious precious moments. I don’t know what else to say besides I think you are amazing the way you are coping with it all. Lots of love to you all. xxxxx
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Cathy Lavictoire
May 1, 2015 at 12:32 pmJulia you are amazing and so strong enjoy your weekend together. x x
Michael Gould
May 1, 2015 at 12:40 pmHave a wonderful weekend at home ………Corinna and I think, and talk of you often …
Much love
Michael Gould
xx
Beth Twinderelmo
May 1, 2015 at 12:42 pmStar Wars? That’s what charlie would choose to watch with his Dad too!
I never imagined having to have conversations with a 6yo about people dying but it’s quite unbelievable how resilient they are. I’m glad he is able to talk to his teachers about it all. It feels like an alien world doesn’t it when grand holidays abroad are the most important thing but you certainly appreciate the finer things in life. Sitting with my Mom doing a crossword felt like the most amazing thing ever. I’ll leave you to tidying for your VIP and have an absolutely wonderful weekend at home together. Love you lots xxxxxx
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Jenny
May 1, 2015 at 12:57 pmI hope you have the best weekend you’ve had for a very long time. Enjoy every minute of it Julia, you very much deserve it!
You and your lovely family are never far from my thoughts. Jenny xx
Georgina @ Kohl Mama
May 1, 2015 at 1:00 pmI have been following your posts about your darling husband , what an amazingly strong woman you are. I hope you have a wonderful weekend with Roger and your children! Sending love and positive thoughts xx
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Vicki
May 1, 2015 at 1:19 pmHow wonderful that Roger is able to come home for the long weekend. It will give him such a boost being in his own space. I hope you all have a wonderful time xxxxx
TiddlerTales
May 1, 2015 at 2:21 pmHeart wrenching to read this but so happy you can bring Rog home for a bit. So hope it’s for the whole weekend. have a wonderful time together 🙂 lots of love xx
TiddlerTales recently posted…Leaving Home aged 19 months
Rainbeaubelle
May 4, 2015 at 9:56 pmThank you xx
Paola
May 1, 2015 at 2:38 pmSo happy for you while sitting in a puddle of tears, have a lovely weekend.
Rainbeaubelle
May 4, 2015 at 9:56 pmThanks Paola, it was really lovely xxx
Amber
May 1, 2015 at 2:48 pmTears again. I hope that your family have a bloody AMAZING bank holiday weekend, I really do.
Kim Carberry
May 1, 2015 at 2:48 pmI hope you have a lovely weekend!!!
Anne
May 1, 2015 at 3:05 pmWishing you and your family a beautiful weekend full of love and laughter xx
Tara
May 1, 2015 at 5:18 pmJust wanted to wish you a happy weekend creating more wonderful memories.
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Rainbeaubelle
May 4, 2015 at 9:56 pmThank you x
Rachel @ The Ordinary Lovely
May 1, 2015 at 7:26 pmI hope you have a wonderful weekend. I’ve just seen your glass of wine on Instagram so trust that it’s off to a good start xx
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Rainbeaubelle
May 4, 2015 at 9:56 pmThanks Rachel x
Rachel - Tenminutesspare
May 1, 2015 at 7:36 pmI’m so very glad your husband is coming home for the weekend and i hope you have a really wonderful family time together. Like so many of your previous commenters whist delighted to hear this happy news I too am sitting in a puddle of tears. As ever your writing is beautiful and so very brave to use some of those scary words around what you and your family having to deal with at the moment. I am certain there will be others reading your blog facing difficult times of their own taking enormous inspiration from your blog. Once again hope you have a fabulous weekend. Rachel xx
Chris Lees
May 1, 2015 at 8:30 pmLyndsey spoke of you and we were so moved about your situation. My thoughts and love are with you. Enjoy your weekend. Special times.
Rainbeaubelle
May 4, 2015 at 9:55 pmThank you x
Lisa@intotheglade
May 1, 2015 at 10:41 pmI hope you all have a wonderful weekend Julia lovely. Sam is a sweetheart, bless him! Thinking of you all, if you run out of anything or need anything picking up, let me know! Take care lovely xxxx
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Joanna Parry
May 2, 2015 at 2:59 amHi Julia
My girls are 8 and 13, I had cancer 5 years ago and now have it again. children have lots of questions, and seemingly at not always the right times !- its ok. I continue to be amazed by how much children can just be ok with what is. I have always felt so guilty and sad for my children having to be in “cancer world” … But they are ok.
Don’t worry …. That sounds stupid!
I mean it’s ok, we are now 6 years into cancer world and my girls are doing fine.
Happy Friday, have a brilliant weekend 🙂 Sending you a big hug and keeping you in kindest thoughts and prayers
Jo x
Rainbeaubelle
May 4, 2015 at 9:55 pmHi Jo, thanks so much for your comment but I’m sorry to hear you are in cancer world too. It’s reassuring to hear from someone else who has experience of talking to children about this. We’ve had a lovely weekend, thank you xx
Maria Noell
May 2, 2015 at 7:48 amYou are so strong and inspiring! Have a wonderful weekend together Lovely xxxx
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mummyofboygirltwins
May 2, 2015 at 12:46 pmHave a wonderful weekend at home together and enjoy all those little things that you’ve been missing so much of lately. Thinking of you so much and big hugs, as always. Jess xxxx
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Ali
May 2, 2015 at 3:47 pmhave a fabulous weekend. you’re such a brave lady, I can’t imagine the questions will get any easier so I hope you’re getting lots of support for you while you carry the rest of your troop. X
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Jenna
May 2, 2015 at 7:59 pmSo beautifully written, Julia. I’ve read the post three times and every time I get a lump in my throat. It totally moves me.
I hope you all have a wonderful weekend together. You deserve it.
Jenna at Tinyfootsteps xx
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Fiveadventurers
May 2, 2015 at 8:25 pmGorgeous post, it’s so heart wrenching to hear your story but you write it so beautifully! You are amazing and do so well to keep it together under these circumstances. Hope you have that magical weekend that you all deserve xx
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Mrs H
May 2, 2015 at 8:50 pmJulia, I hope that you and Rog have a lovely weekend with the kids. I am glad that he is feeling better after his infection. I can’t imagine what it is like to have those conversations with Sam. You are honestly the bravest, most amazing and most inspiring person I know. But I know that is not what you wanted. And I am sure you would rather be writing about renovating your caravan. Lovely Julia, I think about your family every day. Lots of love and big hugs Lucy xxxx
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You Baby Me Mummy
May 3, 2015 at 7:58 amYou are such an inspiration. I am so glad that Rog is coming home and I hope the weekend brings you that special family magic that memories are made of. You beautiful, brave lady, what an amazing example you are to your children. All my love xxxx
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rachel
May 3, 2015 at 12:46 pmWishing you all a fantastic weekend together as a family. I hope you all make some wonderful happy memories together xx
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Sarah Howe
May 3, 2015 at 1:39 pmI hope you have a fabulous week together and can just be in the moment. I have read parts of your journey and your strength is just inspiring. Lots love xx
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Heledd - Running in Lavender
May 3, 2015 at 11:56 pmI’m so glad that Rog was able to shake off that infection in time for his big visit home. Julia, you write so beautifully about these difficult, heart-breaking subjects. Your strength and elegance pours out in your writing. I hope you’re having a wonderful, happy weekend full of ordinary (special) moments. All my love xx
P.S. We know all about DCTC in this house, my two are obsessed!
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Mini Travellers
May 4, 2015 at 1:58 pmI hope the weekend has been absolutely wonderful lovely. Here’s to more of those xxx
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mamasvib
May 5, 2015 at 12:25 pmJulia am finding your posts hard to read – but at the same time I can’t stop. You write so beautifully and I hope sharing is helping you somewhat. I do hope you had a lovely family weekend and cherish every moment x big hugs x
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Sarah Doyle - let them be small
May 5, 2015 at 8:05 pmI am in awe of the strength you are showing. I don’t know how you can cope with the unimaginable that you are going through. I do hope that you all had a wonderful weekend together x
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Mummy Tries
May 10, 2015 at 7:54 amSuch beautiful writing, you’re an absolute legend coping with all that! I hope you all had a great weekend. Hugs xx
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Rainbeaubelle
May 10, 2015 at 8:41 amThank you so much, it was lovely thanks, very special xxx
Katie/ Pouting In Heels
May 10, 2015 at 5:46 pmGosh, I had absolutely no idea about what you, your husband and family are going through 🙁
And I cannot commend your honesty and bravery enough, to share such intimate and no doubt difficult details with us all. I think you are truly remarkable, in in more ways than one.
I know I’m late to the party on this one but I trust (And hope) that it was a special weekend for you all. Stay strong, MUCH love
xxx
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Rainbeaubelle
May 10, 2015 at 8:29 pmThank you so much Katie, it’s a very difficult time but I think writing and sharing is helping to some extent. Plus, if it helps at least one other person then that would be amazing wouldn’t it?! Thanks again for your lovely comment xx
Katie @mummydaddyme
May 13, 2015 at 8:16 pmHi Julia, I have just found your blog via Heledd from Running in Lavender who mentioned you on her latest blog post. I have sat here in tears reading this and imagining what you must be going through and even though you don’t know me and I haven’t commented before, I just couldn’t not leave you one to say that I am sat here tonight thinking about you and your family. xx
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Rainbeaubelle
May 13, 2015 at 8:24 pmThanks Katie, that is a lovely comment even though obviously it’s such a sad situation for us, it does help to write it down and the support I’ve had from my blogging friends is absolutely amazing xx
Sharing our story, love and support - Rainbeaubelle
May 15, 2015 at 1:32 pm[…] be able to spend a bit more time at home this weekend, and even though he may be more tired than last time (I’m writing this as he sleeps), we’re all looking forward to having him close […]
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