I came home yesterday afternoon, after waiting 6 hours from being told I was being discharged, to receiving my drugs from the pharmacy. They also had to fix up the district nurse to come in each day to give me my daily Fragmin injections which have to continue for 28 days post surgery.
First of all, I want to say the hugest THANK YOU to dear Lucy for co-authoring my blog for the duration. It has been wonderful to know that all you my lovely friends out there have been kept up to date with news. Lucy has been co-authoring my blog during my absence, and getting updates from my hubby.
I also want to say another huge THANK YOU to everybody who has sent such fabulous comments, emails, cards and gifts. I have been overwhelmed by your love and kindness, and know for a fact how much you have all helped me gain a good outcome for my surgery by your tremendous generosity. I am going to try and reply to every comment and thank each person for their beautiful hand-made gifts and cards but I’m afraid this is going to take me a long time…
It is really lovely to be home. I had hoped that after 4 or 5 days I’d be up to having the laptop in hospital but I’m afraid that was not to be – I have found it very hard to focus on anything at all, and even now after 24 hours at home, am finding it a struggle to type – it is going to take time, but there’s no rush.
I am coping very well with my recovery. Shortly after my hubby brought me home yesterday, he went out to Newton Abbot station to pick up my lovely friend Alison – we first became friends at school 50 years ago! (Goodness that makes me feel old!) She and her sister take turn and turn about, looking after their elderly parents, so she works very hard, but she volunteered to take time out to come down and stay and look after us both! Not only is she seemingly a bundle of energy (she even found time to bake scones this afternoon!) and very practical and helpful, but she is a retired nurse (not many people end up with their own private nurse when they come out of hospital do they lol!!) and just having her around is a tremendous tonic – we have been chatting and laughing and remembering lots of fun things. Even if we don’t see each other for several years, we always just pick up where we left off and the years fall away. I am so, so thrilled to have her with us – more than words can say!
While I was in hospital, to start with the nurses simply emptied and changed my stoma bag for me, but after a few days, the stoma nurse came daily and showed me how to do it for myself. From the beginning my hubby was fully involved, and after a couple of days we were doing it together – he laying everything out, and helping with each stage, and one day doing the whole thing himself – learning how to do it for those bad M.E. days when I may not feel up to it. He has been soooo supportive and wonderful over it all.
I am surprised how un-freaked-out I feel about the whole thing – it is far less arduous than I ever expected. Now it is settling down and easier to handle in many ways. I shall be writing more fully about this in the coming days on my new blog, The Gutless Bag Lady.
They wouldn’t let me home until the nurses, OT, physio, stoma nurse and doctors were fully satisfied that my blood pressure was sufficiently raised (it had been very low), my mobility was improved, and my independence up to scratch, and that I could manage the bag myself. I was ready to go on Sunday, but because of the bank holiday weekend, there was nobody around until Tuesday to say that I was fit to go. The next hurdle is to wait for the next MDT meeting (which unfortunately couldn’t take place on Good Friday but will be this coming Friday) when the histology results will be discussed and decisions will be made about whether I have to have chemo. More of the waiting game…
I never thought that being in hospital could be FUN! The first half definitely wasn’t fun, but as I started to get better, things definitely improved in that direction! I am too tired now to say more, but in a subsequent post I’ll fill you in and share some of the laughs we had, and also some of the wonderful experiences I had and the lovely people I encountered.
Thank you again, everybody, for all your tremendous support and encouragement throughout my journey this year. Your love and care have meant far more than inadequate words could ever express. God bless you all.
So great to hear from you, Shoshi! Prayers continue for you. Enjoy your private nurse/friend! :)
ReplyDeleteSSSSSOOOO very pleased to read you are home Shoshi and with a smile...well done. (I've been away over the Easter break too and catching up with blogging now) Wonderful that Lucy was able to keep everyone up to date on your progress and now to have a dear friend staying to help as your life settles back to 'normal'. Sending you a big hug and well wishes Happy WOYWW RobynO#25
ReplyDeleteGlad to hear your voice again. Your blog is helping me to understand what is involved with living with health issues. And LIVE you will!
ReplyDeleteGreat to see you home and in good spirits! I'm sure you'll recover more now that you are home with your lovely hubby and private nurse! God is good!
ReplyDeleteI'm so relieved that you're home again, safe and sound. You seem to be coping remarkably well. and your DH sounds like a treasure. (Mine is too. I have MS and he looks after me so well) I hope you continue in good health and that your results are just what you're hoping for. luv and Blessings from cold and cloudy Norfolk
ReplyDeleteThank you Lesley. I hope you hop back here to read this as I can't access your blog to comment... So sorry you have MS and I hope you are not too incapacitated by it. Our hubbies are wonderful, aren't they. I had my histology results on Monday and the cancer was very aggressive and had spread to one lymph node, so I shall be needing some chemo. Oncology appointment in early May. Not the result I was hoping for, but a small price to pay for staying alive!!! I have got my new blog, "The Gutless Bag Lady" up and running now.
DeleteShoshi
Hello Shoshi just a quick post to say I am so glad that you are home. How wonderful your friend is - I am sure that her presence will make such a difference to your recovery. Hope your dear husband is recovered from his fall. You sound very positive . I'm sure there will be good/bad days but am sure you will come through it all. I would have loved to send a card but am afraid I don't have you address - but please know you have been in my thoughts and prayers. Hugs Anne x
ReplyDeleteLovely to have you back in charge again Shoshi xxx
ReplyDeleteWhat a tough journey you have been on. Must be so good to be home and feeling like things are on the way to being normal again. Give your dear heart a hug for being such a kind man and here's hoping his bruises heal soon.What a shock it must have been to see him come in all battered and bruised from his fall. Oh dear...I hope you can escape to your Craft Room soon and do something pleasurable- just for you, and just for fun!
ReplyDeleteJudy xx
Hi Shoshi glad to hear you are getting on ok I have been a little poorly too ...... Nothing like you though. I had an allergic reaction to some medication I was taking. On the road to recovery now though thanks to my fabulous husband who has helped me through. It left me unable to walk properly or basically do any thing for myself .... Very scary. Anyway take it easy and allow yourself time to heal.
ReplyDeleteJanet
Welcome Home Shoshi! :-) xx
ReplyDeleteThank you Chris. It's good to be home!
DeleteShoshi
Dear Shoshi, so glad to see that you are doing well. I hope for your continued progress; thank you for the lovely blog comment. {{{hugs}}}
ReplyDeleteThank you for taking the time to visit my blog and for your kind words, Shoshi! :) So happy for you that you are home, that you have the love and support of your hubby and good friend . Positive thoughts, prayers and hugs.
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So good to know you're back home again Shoshi! And thanks again to Lucy for keeping us updated.
ReplyDeleteMay each day bring you more strength and happiness.
Hugs
Di xx
Good morning. I left a message a couple of days ago, but it hasn't appeared here yet...still floating peacefully in the ether somewhere I suppose. I just wanted to say I'm so happy to see you are home safe and sound. Your DH sounds like a treasure. Mine is too. I have MS and he has looked after me with love and humour for many years. It looks like we've both been blessed. I'm in the middle of stitching a CQ heart for a swap in the US, and I'm hoping to complete it today (although, with the Grand Prix and Motor Cycling racing on TV there's probably not much chance of that. Ah well, I'm comfortable and cozy on my daybed, and at last the sun is shining. It's still very cold though, and my new plants are struggling. Maybe Spring will come to Norfolk soon. Take care of yourself. Blessings
ReplyDeleteSorry to be so long moderating and publishing comments, Lesley - it's taking me a long time, in between visitors and resting etc. to catch up with everybody and reply to all the wonderful messages I have received. It's all going to take time and I am determined not to pressure myself as I need to rest and recuperate.
DeleteNorfolk is a cold place! Hope you are managing to keep warm. Take care of yourself!
Shoshi
Hi Shoshi, just popped by to check for any updates, and am so pleased to see you back at home. So good to hear how happy you sound and that you are coping as well as I was sure you would. Still trying to kill off this blasted chest infection, not being helped by Hay Fever- I get it this time of year to the fruit blossoms on trees- but the anti biotics I'm on now do seem to be doing the trick. Keeping my fingers crossed for a good outcome at the MDT meeting. Should be having my fourth and final IV this Friday, and I already have the appointment for my MRI, on the 23rd. Huge hugs and lots of love to you both, xxxx
ReplyDeleteHey Shoshi, thank you so much for writing me a message. I can't believe your're able to type as much as you are already! Reading about your husband's dedvotion and care for you puts a very warm feeling in my chest. Sending big get well hugs your way :)
ReplyDeleteAh Shoshi, good to read your words, especially that you are home. And yes, waiting is the name of the game now, for dispensary, for meetings and appointments...but that's the point...you've got time and the longer it takes them to decide about chemo, the stronger you'll be if they decide its a yes.
ReplyDeleteHow absolutely lovely of. Alison, and Liy to have and be holding the fort....friends like this a gal needs!!
It is wonderful to hear that you are home. I think that we all heal better in our own home and our own bed.
ReplyDeleteYou are in my prayers.
God bless you.
Connie :)
I hope things are still going well for you and you are travelling the road to recovery at a good speed! I appreciated your lovely comments on my blog and have to apologize for taking so long to reply - life has got in the way of blogging as can often happen, and I'm also trying to deal with a post op infection and absess - ouch!!
ReplyDeleteGod bless you Shoshi,
Diana xx
That's a tremendous post and what an achievement to do it Shoshi. Pat yourself on the back for that. So glad you are home and have a wonderful friend to look after you, as you say, not everyone has a private nurse. I am sure though that were the roles reversed you would be helping her in any way you could.
ReplyDeleteTake care and do as you are told so that you can return to full health asap.
Hugs, Neet xx
sounds like you are definitely on the mend even though the news of having to take chemo wasn't good for you. I think a positive attitude is half the battle and a support family and friends lessens the load a lot...least wise it did with me when I had my pelvic mass and then the face cancer. Have a great week. Vickie
ReplyDeleteOh Shoshi, so sorry to hear the news wasn't as good as you were hoping. How lucky they found it when they did and here's hoping the chemo course is short and quick with few ill effects - I've got everything crossed for you! Loads of love and good luck wishes,
ReplyDeleteDiana x
Hi Shosi,
ReplyDeleteWelcome home! How nice to have a husband that can help without being squeemish. Some men are the biggest babies! Yours is wonderful!!!!! And to have your own friend/nurse come and stay - that's a blessing. So glad to hear your positive attitude and know that will definitely go a long way in your recovery and chemotherapy. You're a strong person have so many people all over the world praying for you.
Hugs,
Kay
Dear Shoshi, so glad to see you posting! And so happy to see you home and in good spirits with a good nurse to cheer you. You are in my thoughts, may you continue to bask in His glory!
ReplyDeleteHope your recovery is going well. Thinking of you. Valda
ReplyDeleteThank you, Valda. Yes, everything going fine except from some problems with stoma management - see my Gutless Bag Lady blog for details. This journey seems to be tears and smiles alternating all the way!
DeleteShoshi
Hi Shoshi, sounds like things are progressing okay.
ReplyDeleteSending big hugs, Angela x
So good to hear that you're slowly but surely recovering, Shoshi! I know I haven't been around much lately, but I do think of you from time to time and will be popping in for updates! Take care xx
ReplyDeleteDear Shoshi, something made me come by your blog today and I wanted to let you know I am thinking of you and hope that all is well. You have been through so much ... you are an inspiration. May I add my healing thoughts and get well wishes to all the others that you receive from your kind friends. Sending you much love, Carolyn x
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