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Continuing the journey

jules54
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Hi All

Decided to drop the 'month' from the title of this thread as time moves so quickly and the date becomes irrevelant so quickly.

Hubby and I both feeling pretty drained today but not because of his illness. However it is something that has made both us further stressed and 'outside our control'.  Prepare yourselves for a rant or look away now.

Having put in a long work day yesterday (both of us). I switched on my mobile on leaving work to find a message from the social worker for Mum (regular readers of my thread will know what we have been going through recently).  The upshott of this message was that the Social Services panel have decided that they can offer Mum a place at a sheltered housing complex but not the most local one. The call was to advise me of the panel's decision and to tell me that a visit will be arranged this week, preferably by Wednesday, for Mum to be taken to visit the flat and be told about the package of care and how it will work. They require a decision from Mrs K (this is how my mother is addressed in the follow up e-mail!!) by Friday otherwise the placement will be offered to another service provider!  Unfortunately this means Mum has little choice but to move further away (closest sheltered housing has no vacancy and they are  not willing to help fund where she has spent the last 9 months 'settling in').  The guilt I feel at being unable to cope with this is overwhelming, my hubby is very supportive and angry in equal parts and I am dreading the days ahead.  I am unable to take leave and my negative feelings towards her social worker would not work in Mum's favour as she needs to go on the visit with an open mind and the care home staff state she is quite able to make her own mind up.  If she agrees I will be unable to visit as regularly (my problem not theirs of course) but apparently the social worker will accompany her and I have asked to be kept informed.

Even typing this is making me sad/angry/frustrated and emotionally/physically drained.  I was due to visit Mum today but this is on hold until I have spoken to the care home this morning. Hubby says I should leave it till later in the week when we know what is going on and I suspect he is right (bearing in mind my physical upset involves many 'loo' visits (enough said!!)).

Sorry for all the negativity but just needed to get it out and try and get  myself together before I start on the phone calls.

Hope everyone has a good day.  Regards Julesxx

  • Offline in reply to SUSANANNE

    Thanks Susananne, having the forum to turn to on this emotional rollercoaster has become a great source of comfort to me.  So far so good as far as symptoms (breakthrough pain only which his medical team have so far managed really well so hopefully can be sorted again on Tuesday).  With my hubby its not so much the physical symptoms more his devastation at not being able to continue working.  He always said he would never retire and I now understand why. His work was his life and nothing comes close to replacing it.  He tries to make an effort when we have visitors but mainly switches off by spending hours staring at the tv.  At diagnosis he said everything must remain normal and the family its doing its best.  He is fully able to do everything still for himself and his consultant says there is no reason why he cannot be out and about enjoying things but he is not interested and is actively encouraging me to do things alone (which is why I am so looking forward to the weekend away with our friends - hoping it will lift him too). I feel sad that he cannot enjoy life whilst he has the ability.  I have a friend whose father in law had mesothelioma (quite a few cases recently in this area) but who actually died with it rather than from it  and he did so much in the six months he knew about it.

    Rest assured I am very grateful for your offer of support though a little worried 'going there' will be a difficult reminder of your dear Tony.  Well off to work shortly and brrrrrrrrrrr its cold this morning.  Look after yourself and once again thank you for your kind words.  Jules xx

  • Offline in reply to BerylB

    Thanks for your kind words Beryl. Its lovely to have the support of my virtual friends as we take this journey.  ITs a case of hoping for the best though with much apprehension as you can imagine.  Off to work soon and have a lot on this week so hoping keeping busy will keep me on track and that if its meant to be we will have our weekend away.  Look after yourself and those cats.Jules xx

  • Offline in reply to jules54

    Morning Jules,

    I'm glad to read that the forum is helping you cope at the moment, I'm sure you are nervous about hubby's appointment tomorrow; I will be keeping everything crossed for you.  Speak soon.  Hope x

  • Offline

    Hi jules

    I just want to wish you good luck for your husbands

    Appointment tomorrow, and to let you know I will

    Be thinking of you both. Hugs hunxx

  • Offline in reply to jules54

    Hi Jules,

    Hope everything goes well for you and your husband tomorrow at the appointmtent.

    Will hope they get the pain relief right so that you can both enjoy the weekend with your good friends.

    Will be keeping fingers crossed.

    Hugs

    Annabel. xx

  • Offline in reply to jules54

    Hi Jules,

    ...........My thoughts are with you today ....I know xxx

    Big virtual hug

    Ian x

  • Offline in reply to jules54

    Hi Jules

    You probably heard my hours at work have now been changed so I don't get to check in on the forum as I used to.  I just noticed your hubby has an appointment today and I just want to wish you and him all the best.

    Hopefully you will get the go ahead for your proposed weekend away.  It will do the both of you the world of good.

    Take care and let me know how the appointment goes.  I will check in again on Thursday.

    Mickied

  • Offline in reply to mickied

    Hi all

    Firstly hope you dont mind a joint update - repeating myself over and over seems a bit silly!!

    Secondly thank you all so much for  your continued support - wow am overwhelmed at how my virtual buddies manage this day in day out despite their own ups and downs - its so much appreciated and I am sending one huge group hug to encompass you all.

    Lastly and by no means least we have returned from hubby's appointment with their blessing to go away which in itself gives us something to look forward to.  We were with the consultant nearly an hour and she was as usual very thorough and can now read hubby almost as well as I can!!!!!  With the right kind of questions she learnt that the breakthrough pain he has been experiencing is not in the region of his cancer as he told her this pain is still covered by his medication but in fact resembles backache .  She discussed his options and ideas and noted his disinterest in food (apparently not uncommon with his form of cancer).  He has to continue on his current meds but she has also arranged a 'standby liquid medication' that he can take a couple of hours before his other evening painkiller when he has the backache and they will keep an eye on how this works for him as there are plenty of other options medicationwise.  He has also been offered a week's course of steroids to see if that helps with appetite but left it up to him as to whether he takes them (she is getting crafty too).  Instead of a 3mthly check up he is to go back in 2 months though of course he can get in touch anytime should he need assistance/support.  General health still seems okay though she thought he looked pale and has had him have repeat blood tests today too which may result in one of his other drugs being stopped/replaced.  All in all not so bad and once again I have a clearer picture of what is happening.

    Following this appointment hubby dropped me off to visit Mum and I spent nearly an hour chatting (to myself  mostly) and now its back with the shopping and hubby is asleep (am sure .like me, he is happy the appointment is out of the way and we have been in touch with our friends to let them know all is okay for our Bournemouth trip - will get to wear my gladrags after all).

    Hope all you guys/girls are having a good day and taking care of yourselves - the sun is shining on us today.  Thanks for all being along for the ride. peaceful thoughts and Max if you get to read this ramble wishing you all the luck int he world with your op.    Jules xx  

  • Offline in reply to jules54

    Hi Jules,

    So glad to read hubby had a positive outcome from his appointment.  I'm sure you are both feeling very relieved; what about a celebration?  A big bar of chocolate could be good?  I'm sure you didn't even mind "talking to yourself" at your Mum's visit today!  Glad you will be able to go to see your friends in Bournemouth too. Lucky you with the sun shining, it's pretty dull and rainy here but hey my day off tomorrow so don't really care!   Take care.  Hope x

  • Offline in reply to jules54

    Oh Jules,

    Thanks for the update. I bet you are relieved with the result of your meeting with hubby's consultant. She does seem to be very thorough. Hope what she has proposed works well. Lets hope it reduces his back pain. At least for a while you know how hubby is feeling and it good you get to go back in a couple of months. So pleased to hear you should be able to get away at the weekend too and will be able to put your posh clothes.on. 

    Sorry to hear your mother was not that talkative today, it must be difficult having a conversation with yourself.  Mrs B latest Warfarin check was okay this morning and she doesn't have to go back for two weeks. Have spent this afternoon making a bigger table top for our new over-bed table so Mrs B can do her bigger jigsaw puzzles. Have made it so it can be fitted over the top of the existing one.

    Take care Jules, best wishes to you and your husband and family. Brian.


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