Morning Jules,

Was just wondering how you got on when you visited your Mum this week, and also how your daughter got on at hospital?  I do hope things are not too stressful for you and that you can try and have a relaxing weekend.

I'm waiting for my eldest to come home, he has spent somewhat of Freshers sleeping on fellow pupils floors after social events - latest was a toga party last night!  I'm off to my counsellor this morning, had originally been thinking I wouldn't need to see her for too much longer but have been so emotional this week so will talk things over with her.

The weather is forecast to be nice this weekend but is looking a bit gloomy at present.  Here's hoping it brightens up and the sun shines on us all.  Take care  Hope x

Hi Hope

Hope you visit to the counsellor was helpful and its good for you to be able to talk things through and this should last as long as you need it.

I have just returned from visiting Mum and she was ok though I am sure a little concerned at how long she will be able to stay where she.  She has amazed the staff at how forthright she was when social worker 'interviewed' her and they are left in no doubt as to what she wants. All the care staff came to see me whilst I was visiting to make sure I was okay too - very sweet.  I stayed until she was due to go into lunch and we even managed a bit of a laugh when I showed her latest photos of her great grandson.  He has really enjoyed his first week in Reception and keeps telling his mum that his teacher is the most beautiful one in the school!!

Hubby and I picked him up from school on Friday as my daughter had to return to hospital for a second day of tests and monitoring.  Specialist blood tests with regard to her liver function have been sent off and unless she hears otherwise she returns to clinic next Friday.  The last set of bloods were borderline but all readings for the baby were good.  If the new blood tests show certain 'rises' she may have to be taken in and possibly induced (she is now 37 weeks and would probably welcome is being over and done with!!).  Anyway so far so good.  I have an overnight bag ready and waiting and she has several friends on standby to get her to the hospital if her hubby is at work.  Mind you she is still driving herself at present!!

When we met our grandson at school (its only 10mins to his home) he told Grandad that he could meet us there as it was healthier to walk!!!  My hubby's face was a picture as he drove off and I walked the little tyke home!!

Life's stresses seem to come and go but having the forum to offload certainly helped me to see things in perspective this week though I think my mood swings are more due to hormones than current circumstances.

Sounds like your eldest having a great time during Freshers but will no doubt be looking forward to some home cooking.  Have a great weekend with the family and will catch up again soon.  All the best and look after yourself. Jules xx

Hello Jules ,thankyou for your reply and support ,I do think of you often because as you know Tony had the same type of rare cancer ie mesethelioma ,that hubby has so know how things pan out and I realy wish you all the very best with coping along the way so if you need to talk about anything just message me and I will help as much as I can, just have the best time you can whilst you are together and live every moment,good luck on Tuesdayto you both ,hugs to you Susananne x

Hi Jules

Just read your post and I am sorry to see that your hubby is in pain I do hope when you go on Tuesday they can sort it out for you both.  Thinking of you.

Love always

Beryl xxx

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

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

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

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

Hi Jules,

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

Big virtual hug

Ian x

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

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  

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

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

Morning Hope

Well no celebrations just quiet acceptance from hubby and a concern that he would become addicted to drugs!!! (consultant explained that with a specific job to do for the medication, addiction was not an issue as it was being 'controlled/monitored').  Just goes to show what you learn in the consultancy meeting (never would have had a clue about these thoughts). He does seem to be more relaxed about going away now that the appointment is behind him.  The main reason for Bournemouth is thats where the social event is taking place.  The friends live round the corner to us but we will travel separately and meet there sometime after lunch Friday.  (Need to go and get my hair cut early in the morning Friday before setting off and that will give hubby a chance to have his normal lie in before we travel)

Enjoy your day off today.  I am working longer hours today (following main book audit yesterday which I missed!!) to help get department back to some kind of normal and playing catch up on other jobs that had to go on hold.(some of our staff will have worked 12 hrs yesterday so will start later today.  Also I need to book my last 2 days holiday which have to be taken by end of March.  Hoping to get a Thursday and Monday which will give me 6 day break!! (taking in account  my normal non work days and the weekend - crafty).  Take care,chat soon.Jules xx

Hi Jules,

Glad to hear your good / positive news from husbands consultation.

Hope you have a really good time in Bournemouth with your friends etc.

And your extra time off work.

You deserve it.

Hugs

Annabel. xx

Hi Annabel

Thanks for your kind message and I am counting down the hours till tomorrow I can tell  you.  Just need to get through work today (more book moving about to make sure we get our returns done on time).  My manager actually wanted me to get in early today and possibly stay on again but I have politely refused as I would like to enjoy my short break, not spend it recovering!!!

Hope you are keeping okay and that your son is enjoying his new job and Ava is giving you some lovely smiles 'over the web'.  How long before the family visits again?  My daughter was happy earlier in the week as Zack slept through the night two nights running (she hope it carries on this time - that last time he did this it did not last long!!!).  They are enjoying baby massage classes locally for four weeks and then she will re-join mum and baby group (has a couple to go to) much the same as she used to with her eldest.  Time is passing all too quickly but they bring a lot of joy.

Have a peaceful weekend, speak when I return.  Jules xx 

Hi Jules,

Hope you didn't work too hard yesterday and that you and hubby have a relaxing time in Bournemouth tomorrow.  Fingers crossed the weather is better for you.  I am a little nervous today as I have a meeting at the hospital with the consultant who was in charge of my Mum.  Won't go into detail but there were some issues when both my Mum and Dad were diagnosed and I wrote a letter a short while ago.  A&E have already replied regarding my Dad admitting that I was correct and that errors were made, which I still fail to understand; but my Mum's consultant wants to meet with me.  People have told me I will make myself feel worse by going over things again, but I just want to highlight things so that hopefully nobody else has to go through what I did.  Anyway wishing you a peaceful weekend.  Hope x

Hi Jules,

Hope today flies by at work and all that book shifting doesn't leave you sore!

Enjoy your pre-weekend pamper tomorrow (hair appt and manicure,)  have a safe trip to Bournemouth and enjoy a fabulous weekend!

Look forward to hearing about it when you return!

Love and hugs to you and hubby, Jo xxx

P.S. Annabel, have PM'd you xx

Hi Hope,

Just read your post to Jules. I think you are doing the right thing by making the hospitals aware of the errors. Too many people seem to be prepared to accept bad treatment which in my humble opinion only makes things worse in the long term. I admire you for for taking action for as you say it may stop it happening again. Yes there is the possibility it may brings things back that you would perhaps sooner like to try and forget but if what you are doing changes the system, it may even make you feel better. For if you had done nothing and had just accepted what had happenned, that in itself could have played on your mind and end up being something you had regrets about in time to come. So well done Hope and as always, if today's meeting does cause you upset, your forum friends are here ready and willing to try and help you, you have only to let us know.

Best wishes, Brian.

Hi Hope

I haven't spoke to you in ages now.  Just saw your reply to Jules and noticed you have a meeting at the hospital today with your mum's consultant.

Sending you thoughts of staying strong throughout the meeting.

Take care and chat soon

Mickied

Hi Brian & Mickied,

Thank you both so much for thinking of me today.  The meeting went well, and went on for an hour.  The consultant was nice and agreed that the complaints I had made were very valid and that practice needs to change.  He made suggestions for change and asked me what I thought; now he wants me to write a letter to him to clarify what we discussed so he can take it higher.  So I am very glad that I followed my gut feeling and went ahead with the complaint; although I felt a little emotional after I also feel quite proud and that I have done right by my Mum and Dad.  Brian, hope all is good with you ad Mrs B and that your brother-in-law gets on OK with his new consultant.  Mickied, hope all is good with you and that you haven't had too much rain. 

Jules - sorry for hijacking your thread, hope you have had a good day too.  Hope xx

Hi Jules and Hope,

Thank you both for your kind messages. What a change in the weather at the moment, not a cloud to be seen.

Brother-in-law saw the specialist yesterday and didnt seem happy with their local doctor. In fact he told them he was going to phone him personally. They were told he is to have the hormone injection on Monday (nearly three weeks after he should have had it) So all in all they were quite pleased to get things rolling.

Hope you both have a great weekend and look forward to talking to you both again soon. Best wishes, Brian

Hi Annabel, Hope and Brian

Well,the galavanting duo got back p.m. yesterday.  Managed to get away just after 12.30 Friday having had visit from community nurses in the morning (just to get hubby registered in the system now that he has extra 'as and when required' drug to take.  Despite teeming rain half way through journey 2hrs later hubby drove into hotel car park. Right on the seafront with one hell of a gale blowing we fought (literally with the elements) to get inside. This left hubby gasping for air and unable to speak at the reception so I did the necessary whilst he caught his breath.  The staff were great and came and helped me unload the car then took everything to room. From then on it was a very good weekend. Beautiful food, great service, good company. Lovely meal Friday evening followed by disco till midnight.  Hubby drove (5mins) into Bournemouth town centre on Saturdayafter leisurely breakfast and we strolled through the gardens, watching a few 'maniacs'kayaking and surfing' the waves, dodged a couple of heavy downpours (pub for cofee and cake) enjoying company of friends.  Returned to hotel mid afternoon and the 'boys' went for a nap whilst the 'girls' had tea and a chat before changing for main evevent banquet and then live music till  1 a.m. (hubby coped fairly well but told my friend he was frustrated at not being able to do things - she told him she was just glad he was there!!)  (He rarely danced when he was well and that just meant us women carried on as normal - no handbags to dance around though) (I was not at the table when this took place but she told me later - she has a very good insight into things as her son in law has battled bone cancer twice as a 19 yr old and then some 9 years ago when their grand-daughter was just a year old - he lost the full use of one arm but does an amazing job has house husband and his remission continues at present).

On Sunday it was a beautiful morning and we had a good run home (but its very obvious today that he is drained). Great that we managed the time away (and have the photos to prove it!!).  I am pleased I booked today as holiday and have caught up with the housework/washing and so normality (whatever that is) is restored.  Next week his doc will go through things with him as to how he coped with new medication (well he is taking the steroids for 1 week and so far has taken  a couple of the extra pain relief pills (whilst we were away) but he did enjoy wine with meals and several shorts each evening (without appearing to suffer adverse affects). Today he has managed breakfast but has been asleep most of the morning and suspect a lot of this is due to the effort he put into the weekend (and now he is in the comfort of his own home again).

Hope you all  had good weekends too and have not formed webbed feet with the rain.  Will be back to chat again.  Jules xxx