Saturday, 5 April 2008

I May Go Back...

Yes, I may have to go back to Hospice. I am sorry to say that the pain has escalated since I got home yesterday. I woke in the wee hours this morning to quite a nasty level of pain. The nurses and doctors always get me to rate my pain out of 10 so 0 being no pain, 1 being a little, 10 being horrific intolerable pain. This is quite a good way of measuring, still not perfect as pain is a difficult thing to measure exactly I think. Anyway it is a better system than not having one at all and it does give others a bit of an idea of where you are at. I say that last night when the pain woke me it would have been the level of about 6, so pretty nasty but tolerable. I took my break through meds that I am allowed and lay on the sofa reading for a while, eventually I fell asleep. I woke this morning not too sore but as the day wore on the pain got worse continuing on until this evening. I almost made the decision to go back to Hospice. I guess there are a couple of reasons I didn't go. I am so very torn between wanting to keep living as normally as possible, running my home, looking after my child and yes even my older son can still use some looking after. I try and tell myself that Jamie doesn't need looking after but the truth is he does. If I were well and feeling normal, I would be taking care of him. I would still make his lunches, make sure he had a good breakfast, take him shopping, organize his appointments for him and just be a Mum. I hate that I can't and therefore I tell myself that he doesn't need me, but it isn't quite true, I can't kid myself about it down deep inside. Deep inside I am so very disappointed that I can't be the kind of Mum I want to be. I have been so determined to try and push past this pain, I have tried to ignore it, tried to work with it, tried to put up with it, tried every way I know to keep functioning because I so don't want to give in to this horrid disease. The painful truth is, it is wearing me down. When I was forced to go into Hospice last Thursday it was the best thing that could have happened to me, although at the time I felt like Alice falling down the rabbit hole. I felt out of control and panicked that if I lost my grip on running things at home and with my kids that I wouldn't ever get it back again. That this disease was winning and I can't let it win, I can't give in, I can't let myself slide into a pit of not trying and giving up and giving in if you know what I mean. However, it was still the best thing that could have happened to me in the sense that I was so exhausted I didn't even realize how exhausted to be honest. I just slept and slept and slept and then rested and just took things so very slowly, I honestly could have stayed there for 2 weeks on my own. When I say that I mean I would want Jack to visit each day and sleep over a few times but really the rest of the time I needed to myself. I simply needed a break even from those I adore and love the most, IE Jack. I needed a break from worrying about clean clothes and ironing, food shopping and cooking, cleaning and organizing, all the little things that we need to do in order to keep life running relatively smoothly. I just needed to stop, sleep, rest, think, heal, read, eat, walk a little here and there, talk a little here and there, talk about God and afterlife and deep issues with beautiful people that are there for exactly that purpose. I needed to sit in the gardens and drink tea or coffee depending on my mood. I needed to get lost in a wonderful book and not worry about the time or anybody else. Honestly, it was such a wake up call to me about how much I needed a break from my life and my routine. The pain has been with me constantly now for almost 6 months and it has worn me out. I say 6 months and I mean this time around. I had a break before for a few months but before that I was in pain constantly for at least another 6 months, so all in all, I have been battling with pain for a very long time and it is debilitating.

Anyway, I spoke to my nurses from Hospice on the telephone today a few times and they told me that I could come back and probably should. They told me I could live in, with Jack, for at least 6 months. I am sorely tempted (pardon the pun). What do you think my friends? I would very much appreciate your opinions if you have any. This is how it could be - I could go back in tomorrow. I have a beautiful big room with two beds, one, which is mine, has a remote control and it can move up and down and over and any which way you like pretty much. I have a big screen TV with DVD player. I have a recliner chair, I have two other lounge chairs, I have a fridge hidden in a cupboard, I have my own private bathroom connected to my room via a door that locks of course, which is huge with all the mod cons, I have a door in my room leading out to beautiful gardens filled with roses and bird feeders and all sorts of lovely plants. There is a huge kitchen in the centre of the building where there is also a huge dining table area overlooking the gardens. The chefs do all the cooking but you can leave things in the big fridge as long as they are named and dated, so juices, soups, casseroles, anything you like and they will heat up whatever you fancy for you or you can eat what they cook which is always lovely and always healthy. You can have a hot lunch and a hot dinner each day if you liked too. They would even make Jack his lunches for school each day. We can take our meals in our room, or outside, or at the dining room table. There are gorgeous play areas outside in the grounds for Jack and for me to wander. There is a play room which has toys, another big TV, DVDs, videos, books, where Jack can go on his own and shut the door if he wants to.

My pain is taken care of as I can have break through shots of Ketamine which is what I need, fairly often, at least until my tumour shrinks. I am confident that the chemo will shrink the tumour and then it will stop pressing on the nerves in my spine and then I will be out of pain. So, it is not a permanent state of affairs, so long as the tumour does shrink with treatment. I could stay there, be completely looked after and Jack too, whilst having my chemo treatments which are going to make me exhausted and run down etc, and then when the tumour has shrunk, then think about going home. Sounds sensible doesn't it? I don't quite know why I am hesitating. I guess because it means giving up my autonomy to a degree. It means someone else cooking meals for Jack, someone else doing all the caring and me just being there. Maybe that's not such a bad thing, maybe my time is so much better spent just being there, reading to Jack, chatting to him, playing with him, doing homework with him in our room together after school. As I write this, I am finding more reason to go back and stay and less reason to worry about it so much. I guess I have felt kind of like I'm giving in by going there and being taken care of, I think that's what it is that's worrying me but is it giving in or is it just being sensible and taking a sabbatical, taking some time out to heal properly, time out to play a different role for a while. I will still have choices. I can leave whenever I need to. I will still be in charge of what Jack does and where he goes and who he associates with. I will still be caring for him but just in different ways. Then there is Jamie to consider, Jamie can stay with my Mum, that is absolutely not a problem and he can come and be with me anytime he likes. He can stay over any time he wants to or just sit and talk and visit, come for dinner, they are so accommodating at Hospice and so into family and friends being together which is one of the things that is so lovely about them. A lot of the nurses have come from working in busy, public Hospitals and they will tell you that they hated it. They didn't have any time, they just couldn't give quality care. They said to me that they would never ever go back after working somewhere like Hospice where they have time to care and nurture and to follow up with patients. They even have time to have a talk and a cup of tea. Not all the time, sometimes it is busier than others obviously, as staff get ill or have holidays etc but overall they are much more available and much more caring than any nurses I have ever come across in my experiences, which is saying something. They see their role as helping you to heal, helping you to do what you want to do, helping you fulfill your wishes and choices. It is a wonderful, wonderful place, I really can't speak highly enough of it. One woman came up to me on my first day at Hospice last Thursday, her name is Violet. She has worked at Hospice for six years and as some of you will know, I stayed at Hospice a couple of years ago when I was in trouble with cancer. Anyway, she saw me walking by and I heard one of the nurses with her tell her who I was, next minute she was rushing over to me, taking my arm in a hug and introducing herself and saying "I heard all about you and I never got to meet you last time and I was so sorry but I was away ill, I kept wanting to meet you as the other nurses would tell me about you and Jack. " She said "I am sorry that you have to be here but I am so very glad to meet you finally." How amazing is that. She remembered stories about me from a couple of years ago and wanted to meet me then and now she had. I was so touched by this, just beautiful how open she was. Anyway each day I loved hearing her cheerful voice call out Good morning, or Hi Jenni, sometimes we would stop and chat, it was just lovely. I guess the reason I am telling this little story is because it kind of sums up the whole feel of the place. They are just open and loving and caring. Amazing, giving, kind people and being surrounded by this each day is wonderful. The whole place has a feeling of such love and peace and contentment about it. I am truly so lucky that it exists, they do a wonderful job and I can say with all the confidence in the world that when it comes time for me to die from this, I will go there to do it if I need help with pain, which I think most people that die of cancer ultimately do.

Gosh I am glad I can come here and think out loud and know that I have a whole lot of gorgeous, sensible friends that will guide me in the best possible way with the best possible intentions. Even just being able to write things out to you - who loyally read my blog, and comment and pray, is such a relief, such a blessing. I think I have almost made my decision about whether to go back there as I have been writing. I think perhaps it is something I should do. The pain is just not controllable at home properly. I have had it explained to me that if I have my Ketamine put up any higher I will be in a very dangerous position. I could go unconscious in my sleep, I could start hallucinating and not even realize it. There are so many things that can go wrong if I am up on a higher dose so it is just too risky and my Pain Specialist won't allow me to even attempt it. I need to be in their care if I need any more. Even the amount I am on now is quite dangerous. Anyway, had I been at Hospice today, I would have had 3 to 4 break through medications of Ketamine (top ups) that I just can't have at home as I don't have someone watching me and checking on me and doing my obs every now and then. I am so very safe at Hospice and can get the pain relief I need until this damn tumour shrinks, which it damn well better as I have a lot of living left to do before I leave this planet. I have a lot I need to put into action, a lot I need to leave behind for my boys and I am going to struggle to do it all whilst trying to live with this horrid pain.

Anyway my dear friends, thank you for allowing me to ramble on and think aloud and madly type out what my thoughts are whilst trying to make sense out of them. The only thing I must do if I go into Hospice for a longer time is get a laptop! I couldn't bear being without a computer and without blogging, oh no, that would not be acceptable at all. Take care and please feel free to offer me your opinions and advice, I truly mean that and would appreciate and welcome it. Love to you all xxx.

32 comments:

  1. It seems that as you wrote you did reach a decision - or come closer to it, anyway. It sounds like a really peaceful, caring, supportive space, which you surely need right now. I will admit that, very selfishly, as i read, I had the thought "But, if there's no internet access, we'll lose touch with her if she does go back", so I'm glad there is the potential to work with a laptop - for your sake, too! Dear Jen, when it comes to pain, if you are having to battle it and battle it, it exhausts you, and to be where it can be best controlled might allow you to conserve and harness your energy for healing better. I'm no expert, have no experience of such choices, and I will be praying that the best course becomes clear to you.

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  2. Sounds like your heart's already moved in, and you're talking your head into it :)

    My thoughts? Do it. When you reach the end of your days (even if they number far into the thousands), I doubt you'll be grateful for all the time you got to spend doing laundry and cleaning the sinks. If another option presents itself... go for it!! :)

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  3. I so agree with what wilsonian (above post) said "sounds like your heart's already moved in"
    you need to do what brings you peace and recovery. This truly sounds like an answwer to prayer covering all your needs at this time, just dont' forget to give us a forward so perhaps we can send you cards and such :)
    We love you Jen, I pray that God will continue to reveal to you everything your heart is asking.
    with love,
    julia

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  4. I say do it. Sounds as though you so enjoyed your time there, and you feel guilty about relinquishing control. I think you'd be taking control more, if you allowed yourself the rest your body needs to fight. Jack will get more of your time because you won't have to spend it cleaning and worrying about how tired you are getting while cooking meals, etc.

    Just my thoughts. I am glad you had a restful time in hospice. You need it and you deserve it.

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  5. Oh, you! Go. Imagine the sweetening of the experience for Jack (and everyone else who loves you) if they knew that *you* were being taken care of. They wouldn't feel guilty for wanting to be with you, wanting to keep you from resting. I think the setting sounds divine and the peace of mind, spirit and body for all involved will be ever so restorative and soothing.

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  6. Oh Jenni-
    Get there immediately my friend. It sounds like a heavenly place to rest and will afford you more quality time to spend with Jack. Also my dear i think your body, soul and heart really need to be taken care of and you seem to give permission to just give in to the love in this wonderful place. So go and rest and be cradled.
    I love you
    xo

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  7. I have not commented on your blog before, although I have visited many many times.
    I agree with all the other comments, it sounds like a calm and caring place, and I think that you should go there.
    My thoughts and prayers are with you.
    Warmest wishes,
    Tabitha X

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  8. get the care you need without guilt or regret. sounds like this will bless everyone involved including the staff. of course, you have our support regardless of your decision, and only you know what is best for you and your family. take care dear.

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  9. I agree with everyone else, allow them to take care of you, and of Jack. Sink in, be taken care of. That's so hard to do, but it sounds like the perfect thing for you right now. So glad you have this option. Love, peace and prayers-

    Julie

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  10. I REALLY think you should go, Jen. It seems presumptuous to say - only knowing you through your blog - but I think you need to be looked after right now.

    I can totally understand your ambivalence - the feeling that you are giving up your autonomy, particularly in the mothering sense - but I reckon you'll be able to do all the more precious aspects of mothering (ie loving , hugging, talking, just being PRESENT emotionally) so much better if you don't have to worry about cooking and cleaning and laundry and all that crappy, tiresome stuff.

    Honestly, all that housework and running a home stuff can be exhausting at the best of times - without being seriously ill and in terrible pain - so please don't feel guilty about finding it all too hard.

    Hospice sounds like a wonderful place with some lovely, caring people. The perfect place to rest and concentrate on getting better!!!

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  11. I think that the 'stuff' of everyday life is sometimes too much when one is well - and way too much if you are feeling sick and dealing with pain. I hope that you do decide to move in, it sounds lovely and like a safe, sweet space.

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  12. Oh dear girl, it sounds like a wonderful place to go and heal. As you were writing, it seemed that you started to make your mind up. It is hard enough for us to be a "super Mom" when we are healthy. Going through that horrific pain on top of everything else sounds very difficult.

    By spending some time there, you can hopefully get over this tough time, and be back home before you know it.

    Sending love your way from Canada.

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  13. A link for you! :)

    http://www.crazysexycancer.com/

    xx

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  14. Dear Jen, I think it is so, so good to be cared for in our hour of need and to enjoy that care. I'm so happy that you can appreciate all the love and care that is there for you, how it will make you feel better, how you'll be able to simply enjoy your boys. It will make them happy to see you cared for, to see you getting the rest you need to heal your body. It will help you feel stronger day by day. And there is a garden outside your window. I hope you will have a laptop too, as one of the other writers said, so that people who are wishing you well, literally, from all over the world can send their wishes to you and you can lie back and smile to think how many people truly care for you.

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  15. Hello Jen, I support you in whatever you think is best for you, your pain, your family. If getting a laptop is not possible, perhaps you can teach your children to blog, or you can also have them start their own blog at caringbridge.org or .com

    That way we can keep track of you day to day. How nice it would be if you had a computer in your room.

    all my best
    Jeannie

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  16. Dear 'greenishlady' you are right, having to battle the pain constantly is exhausting. I totally agree that my energy would be better used to do some healing rather than trying to fight pain. At least I can have the 'top ups' that I obviously need there without fear of passing out or anything horrid like that, which is a very real fear by the way. Anyway thank you darling for answering my post and giving me your very valued opinion. Love and Hugs Jen xxx

    Wilsonian, you have it in one, no I am certainly not going to be grateful for all the cleaning and washing and ironing that I got to do. You crack me up though, you are so very practical my friend, thanks for taking the time though to share your opinion. I value all of them. Love, hugs, Jen xxx

    Julia you are so sweet, I will forward an address as receiving cards is lovely. What a kind thought, thank you so very much. Take care, love Jen xxx

    Thanks Mama db, that's a good way to look at it, I am actually taking more control by doing this, choosing to spend my time on more important matters and choosing to be taken care of. Thank you my friend, love Jen xxx

    Oh Amanda, that is such a kind way to look at it too, everyone else will breathe a sigh of relief to know that I am being taken good care of, they won't have to worry about me so much. Totally kind hearted thought thank you darling, love Jen xxx

    My dearest Meg, I love you and yes you are right, it will give me more quality time with Jack and that is enough of a reason to go in itself! Love and Hugs Jen xxx

    Thank you Tabitha for taking the time to comment and thank you for your thoughts and prayers. Lord knows I can use all I can get lately. Take good care, love Jen xxx

    Thank you too dear Terri, you are such a gorgeous soul and I am lucky to have your support throughout this journey. Love and hugs to you my friend, Jen xxx

    Oh Julie, why is it so hard to do. It's crazy of me really to even have to hesitate and think about it so carefully. I do believe everyone is correct and I will go back in. Thank you darling, love Jen xxx

    Thank you dear Rebecca, you are right of course, I don't need to waste energy on cleaning and cooking and ironing and washing. It's exhausting just typing it lol! I will have much more time to do quality things with my sons. Love and hugs to you Jen xxx

    Dear Ellie, it is a lovely and peaceful place and I am looking forward to getting back there. Love and hugs to you, thanks for commenting. Jen xxx

    Dear Momato2, you are spot on, I did start to make my decision as I wrote my blog post. It just helped to clarify things for me by writing (typing) it down. Thanks for your comment and support my dear, love and hugs Jen xxx.

    Rebecca, thanks for the link. I have been over there before, it is such a fantastic sight. Some awesome stuff there. Thanks for thinking of me, love Jen xxx

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  17. Jen my special friend

    I am about to email you... Please go to the hospice (I think your decision is made) Pain is such an exhausting dragging all consuming experience... please go be where everything is beautiful and you are cared for appropriately. Don't feel bad.
    It sounds like such a wonderful environment your hospice... I am so pleased you have found such a place. I wish I was closer.. so I could bring you treats flowers, a real coffee.
    Sending you much love and strength

    Carmel

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  18. Jen,
    Writing has a great way of helping you sort out your thoughts. It sounds as if you've decided that hospice is a perfect option and I have to agree with everyone else = it sounds wonderful for you and also Jack. I imagine Jack will feel a small weight lifted off his shoulders knowing that you are being cared for by such wonderful people. And that your pain is being managed. so...get thee to the hospice!!

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  19. Dear Jen, I think you know in your heart what you need to do. Take the opportunity to rest and rebuild with Jack nearby and not have to worry about the mundane tasks. Cooking and cleaning does not make you a better mother - talking and listening does. Jack and Jamie are going to remember those times rather than who made their sandwiches. Sometimes you have to let go of what is not important. You getting the care and attention you need is.
    Take care
    K xx

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  20. Dear Jen,
    I am tellin you, if I could find a place like that where I live, and I am well, I wouldn't hesitate one bit! Sounds like just what you need to nourish your soul, your body, your spirit. And it is not a "want", but a neccessity for you at this time. As you well know, the laundry and cooking and cleaning will all wait patiently till you return home; 6 year old little boys cannot wait very well, and during those times when you feel well, you certainly want to spend that time being the kind of "mum" that all kids want: one that will sit and just "be" with them. Allow others to do
    the "extras" for you and concentrate on shrinking that tumor and spending quality time with your precious boys.
    Ruthie

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  21. Hi Jen,

    It sounds like, just what you need, and how marvellous that Jack can be with you too. You will be able to have more quality time with Jack, if you are not in so much pain. Jamie I'm sure would much rather go and live with your mum for a while, if it means you are going to be looked after properly.

    cheers

    leeanne x

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  22. Hi Jen,

    I thought I'd stop by and check in on you today.

    I think your mind sounds made up already but you asked for our opinions so here is mine:

    I think you should go there, it sounds like an incredible place where you don't lose your identity. It sounds like it complements you and helps you rather than defines or restricts you. It will give you not only time with Jack & Jamie, but QUALITY time with them where you don't have cooking, cleaning or ironing to worry about. You're still able to be involved in their lives but get help for yourself at the same time. To me it looks like a win-win situation. I think you would not regret it at all!

    Keep us posted and YES if you can get a laptop then it will make your time in hospice all the better!!! xoxo

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  23. Just wanted to say everyone in our family is thinking about you and your family. Sending good vibes and all. It sounds like the hospice program there is amazing, and by the end of your post, it sounded like you had come to your own decision. What a great resource to have a program like, some place where you can be gentle and good to yourself and have support, not just for you, but for your kids, too. Sending lots of distance Reiki to you. Hoping that you do end up with a laptop, too, so that we can all keep connecting...

    Miracles,
    k-

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  24. Jen, It sounds like you have made your mind up as you were posting....I agree with all your other readers. Go To Hospice...where you are taken care of not only on a physical level, but also (and more importantly) on a spiritual level as well. If your physical needs are being met..(ie.keeping your pain level controlled) then just think about how will be able to focus on everything else...you, your sons, family, and friends. You can actually sit in the garden and sip a cup of tea..and not be in so much pain. You could soak in all that surrounds you on such a different level. You deserve to be taken care of, you're not "giving in"...in fact, you're doing the opposite, you're taking control and seeking care for yourself, and for precious little Jack. That is what a mommy's job is....and you're doing it :-) Pain is something none of us should have to experience, unfortunately that isn't a reality...so if you're having pain...I say go somewhere where it can at least be managed...safely..where you are under close observation. I know you already know this...but you'll still be able to have little Jack with you, to cuddle, to color with, to read to, to kiss and hug..AND that is what he wants...his Mommy..to be with him. It will make his little heart happy to see you comfortable and being cared for...so you CAN focus on what's most important...This Hospice House sounds lovely, sounds like they love Jack too. Living with or in pain is no way to live, so please go where you can and deserve to be taken care of. Oh, I could go on and on...but know you and your sons are in my prayers. Oh, one more thing...I was just thinking...you're very good friend, Lee(I think that's her name,right?) could always come and get Jack from you for a few hours...just so he could shake his wiggles out..and then bring him back. Just an idea. If you have the game Zingo (or could have a friend get it for you) I know for sure Jack and you would have a great time playing it. He could even hop up on your bed and you guys could play there...It's kind of like Bingo..but way more fun..for kids. Ok, that's all.

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  25. Dear Jen,
    I don't know what more to say, the others have given you such great support, wisdom and love and I want you to know that I also support and am sending you love. I know you will make the right choice and you will be okay. I continue to pray for you and think of you daily. I am so inspired by your strength and courage. I hope the pain goes away, you need to be comfortable. If hospice can handle that for you and then you can go home feeling better for your family and yourself, I say go with it. The people who work with hospice seem so caring and nice, so you know you will be looked after by good people who will also welcome your family there, which is so very important. God bless you Jen~Love, Rosemary~

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  26. You have deep gut-level wisdom. And I love how you lay out your thoughts and in the process come to some conclusions that make sense for you, for today. I applaud your courage, your honesty, and perhaps more than anything, your profound love for your sons. Blessings from Israel!

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  27. Yes, go to hospice for now. Getting the care and help we need is never an admission of defeat or a sign of giving up. It can be so hard for us to believe that, whether we are well or ill. But it's true. Love your sons by loving yourself, dear Jenni. Let others continue to love and help you, and the web grows bigger and stronger, with you at the center of it.

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  28. Just another voice in the chorus saying that it sounds like what what would be best for everyone is for you to go back to hospice where you can truly focus on your self-care and being as well as you can. It's lovely that you can still have your family around you and it sounds like such a deeply caring place, exactly what a soul needs when going through such traumatic things as you are. Take the gift that is being offered! You'll have more energy to focus on the important things, rather than worrying that things are falling through the cracks.

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  29. I am not usually one to spout things from the Bible, lol, BUT, as I was reading your post, all I kept thinking was - as it says in the Bible - there is a time for all things. My feeling is, this is your time to be taken care of - for a while at least - is it not better for you and those around you if you are not struggling and exhausted with such horrible pain? You can still take care of those you love in other ways than doing laundry or making lunches! And in the hospice, you are in a better position to enjoy laughter and hugs and time spent with your little one.

    Like someone else said, I do feel a bit presumptuous saying all this, and I'm not entirely sure that my words are coming out right - and I understand, completely understand, as a mother myself, why you are reluctant to go - but I really think this place is a blessing for you, and for Jack, and were it me, I would go.

    I wish you all the best in the world!

    Warm Wishes,
    Linda @ Barefoot in the Park

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  30. Yes! GO. Go and rest, that you may wake feeling refreshed and ready enjoy your dear boys and NOT your laundry.

    Blessings,
    Suzanne
    near Toronto, Canada

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  31. I think you made your decision while you were writing. It sounds like a lovely place. A place that will care for you and for Jack, that will free up time for you, so you can spend it with your sons. A place that can keep your pain under control. Pain grinds a person down without you even realizing it.

    Take care sweetie and I'm sending a hug and saying a prayer for you and your boys.

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  32. I think you should go to Hospice. You should not be living with such awful pain and and being so exhausted. The people there are trained to take care of you and your pain. They are loving, caring people who will make sure you and Jack will have special times together. Times that won't wear you out, times you can just enjoy being together.
    I will keep you and your family so close to my heart and in my prayers. You are so brave. Such a wonderful mother and person. Take care of yourself now.
    XOXOX

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