A difficult week and a visit home

Rog and Sam

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!

Mami 2 Five
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  • Reply
    May 1, 2015 at 11:22 am

    Have a wonderful family weekend together, Julia. I’ll be thinking of you.

    Lots of love,
    Em xx

  • Reply
    Mackenzie Glanville
    May 1, 2015 at 11:23 am

    I 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
    Mackenzie Glanville recently posted…More hours in my day would be nice. #Friday ReflectionsMy Profile

  • Reply
    sarah christie
    May 1, 2015 at 11:49 am

    Julia 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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  • Reply
    Caro | The Twinkles Mama
    May 1, 2015 at 11:57 am

    Aaah 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 |
    Caro | The Twinkles Mama recently posted…111 weeks and 1 day | Me and Mine {April}My Profile

  • Reply
    Everything Mummy
    May 1, 2015 at 11:57 am

    I hope you have an amazing weekend together Julia, Thinking of you all xx
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  • Reply
    Hayley Smith @hayleyfromhome
    May 1, 2015 at 12:18 pm

    Julia 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
    Hayley Smith @hayleyfromhome recently posted…Me & Mine {April}My Profile

  • Reply
    Kat | Beau Twins
    May 1, 2015 at 12:24 pm

    Ah 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

  • Reply
    Katie Haydock
    May 1, 2015 at 12:28 pm

    Wonderful 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
    Katie Haydock recently posted…From Whence I Came.. #MyCapturedMomentMy Profile

  • Reply
    katy (what katy said)
    May 1, 2015 at 12:30 pm

    I 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
    katy (what katy said) recently posted…My weekly list #10My Profile

  • Reply
    Cathy Lavictoire
    May 1, 2015 at 12:32 pm

    Julia you are amazing and so strong enjoy your weekend together. x x

  • Reply
    Michael Gould
    May 1, 2015 at 12:40 pm

    Have a wonderful weekend at home ………Corinna and I think, and talk of you often …

    Much love

    Michael Gould

  • Reply
    Beth Twinderelmo
    May 1, 2015 at 12:42 pm

    Star 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
    Beth Twinderelmo recently posted…Too Much Pressure?My Profile

  • Reply
    May 1, 2015 at 12:57 pm

    I 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

  • Reply
    Georgina @ Kohl Mama
    May 1, 2015 at 1:00 pm

    I 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
    Georgina @ Kohl Mama recently posted…‘How To’ – Overcome Second Child Guilt!My Profile

  • Reply
    May 1, 2015 at 1:19 pm

    How 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

  • Reply
    May 1, 2015 at 2:21 pm

    Heart 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 monthsMy Profile

    • Reply
      May 4, 2015 at 9:56 pm

      Thank you xx

  • Reply
    May 1, 2015 at 2:38 pm

    So happy for you while sitting in a puddle of tears, have a lovely weekend.

    • Reply
      May 4, 2015 at 9:56 pm

      Thanks Paola, it was really lovely xxx

  • Reply
    May 1, 2015 at 2:48 pm

    Tears again. I hope that your family have a bloody AMAZING bank holiday weekend, I really do.

  • Reply
    Kim Carberry
    May 1, 2015 at 2:48 pm

    I hope you have a lovely weekend!!!

  • Reply
    May 1, 2015 at 3:05 pm

    Wishing you and your family a beautiful weekend full of love and laughter xx

  • Reply
    May 1, 2015 at 5:18 pm

    Just wanted to wish you a happy weekend creating more wonderful memories.
    Tara recently posted…My five day denim free challenge: The results.My Profile

    • Reply
      May 4, 2015 at 9:56 pm

      Thank you x

  • Reply
    Rachel @ The Ordinary Lovely
    May 1, 2015 at 7:26 pm

    I 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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    • Reply
      May 4, 2015 at 9:56 pm

      Thanks Rachel x

  • Reply
    Rachel - Tenminutesspare
    May 1, 2015 at 7:36 pm

    I’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

  • Reply
    Chris Lees
    May 1, 2015 at 8:30 pm

    Lyndsey spoke of you and we were so moved about your situation. My thoughts and love are with you. Enjoy your weekend. Special times.

    • Reply
      May 4, 2015 at 9:55 pm

      Thank you x

  • Reply
    May 1, 2015 at 10:41 pm

    I 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
    Lisa@intotheglade recently posted…Five on Friday!My Profile

  • Reply
    Joanna Parry
    May 2, 2015 at 2:59 am

    Hi 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

    • Reply
      May 4, 2015 at 9:55 pm

      Hi 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

  • Reply
    Maria Noell
    May 2, 2015 at 7:48 am

    You are so strong and inspiring! Have a wonderful weekend together Lovely xxxx
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  • Reply
    May 2, 2015 at 12:46 pm

    Have 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
    mummyofboygirltwins recently posted…Don’t we all love a Bank holiday weekend?My Profile

  • Reply
    May 2, 2015 at 3:47 pm

    have 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
    Ali recently posted…I’m still wearing the smile you gave me!My Profile

  • Reply
    May 2, 2015 at 7:59 pm

    So 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
    Jenna recently posted…HappyDays #27My Profile

  • Reply
    May 2, 2015 at 8:25 pm

    Gorgeous 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
    Fiveadventurers recently posted…Italy with young childrenMy Profile

  • Reply
    Mrs H
    May 2, 2015 at 8:50 pm

    Julia, 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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  • Reply
    You Baby Me Mummy
    May 3, 2015 at 7:58 am

    You 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
    You Baby Me Mummy recently posted…My Sunday Photo 3rd MayMy Profile

  • Reply
    May 3, 2015 at 12:46 pm

    Wishing you all a fantastic weekend together as a family. I hope you all make some wonderful happy memories together xx
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  • Reply
    Sarah Howe
    May 3, 2015 at 1:39 pm

    I 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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  • Reply
    Heledd - Running in Lavender
    May 3, 2015 at 11:56 pm

    I’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!
    Heledd – Running in Lavender recently posted…Yummy Carrot CakeMy Profile

  • Reply
    Mini Travellers
    May 4, 2015 at 1:58 pm

    I hope the weekend has been absolutely wonderful lovely. Here’s to more of those xxx
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  • Reply
    May 5, 2015 at 12:25 pm

    Julia 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
    mamasvib recently posted…V. I. BABY: 10 Perfect pink pieces for the new PrincessMy Profile

  • Reply
    Sarah Doyle - let them be small
    May 5, 2015 at 8:05 pm

    I 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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  • Reply
    Mummy Tries
    May 10, 2015 at 7:54 am

    Such beautiful writing, you’re an absolute legend coping with all that! I hope you all had a great weekend. Hugs xx
    Mummy Tries recently posted…Sharing the Blog Love #2My Profile

    • Reply
      May 10, 2015 at 8:41 am

      Thank you so much, it was lovely thanks, very special xxx

  • Reply
    Katie/ Pouting In Heels
    May 10, 2015 at 5:46 pm

    Gosh, 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

    Katie/ Pouting In Heels recently posted…WIN a gorgeous set of colouring books – for adults!My Profile

    • Reply
      May 10, 2015 at 8:29 pm

      Thank 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

  • Reply
    Katie @mummydaddyme
    May 13, 2015 at 8:16 pm

    Hi 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
    Katie @mummydaddyme recently posted…My Little Bits Of Life- The Holiday EditionMy Profile

    • Reply
      May 13, 2015 at 8:24 pm

      Thanks 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

  • Reply
    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 […]

  • Reply
    Setting our butterflies free - Rainbeaubelle
    May 29, 2015 at 12:33 pm

    […] it was time to set them free it was a weekend but unfortunately my husband Roger was at the hospice rather than at home. So he could be a part of it, we decided to take our butterflies to him and let […]

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