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 JulesI have been thinking about you and hubby and hope things go well for hubby on Tuesday and hope you are coping with all this illness brings with it ,I notice hubby is getting pain  and just a thought Tony was put on a pain relief patch called Fentinyl that worked well because of nauseahe couldnt keep pills down so the patches took all pain away thankfully ,he was eventualy put on a syringe driver at the end , hope this helps ,it will be a year since Tony passed away on the 5th Feb and its so hard as I miss him so much the hurt dosnt seem to ease ,our children have bought a lilac  bush to plant in the garden for their dad so it will attract butterflieshe took lovely photos of butterflies .I hope you havnt had any fludding in this awful weather when is it goig to end Rusty dosnt mind the rain but im fed up getting wet day after day I see you have a lovely new grandchild the little ones always make us smile dont thet bless them .Its my youngest son Dylans birthday tomorrow so the whole family are going out for lunch  so that will be nice  no cooking ha ha ,Hope to chat soon keep smiling Jules     Susananne xx

Hi Susananne

It was so kind of  you respond on my thread for I know how hard it must be for you to be following a journey you know too much about and which has left you so bereft. The coping mechanism is mainly still in place and we have been blessed with no other symptoms other than the breakthrough pain so far which I feel is a blessing as we near the two year anniversary of diagnosis.  Hubby has been on 3 monthly check ups all this year and no extra visits required other than to sort medication through GP.  His general health has remained good (a couple of colds) but his main struggle is with the enforced retirement (though he is still helping out as consultant on phone from time to time and thats when I see my man smile) and he is genuinely happy to be popping back to the workplace tomorrow to give some training.  Other than that life plods on much the same but with an extra grandson to cuddle.  We were visited yesterday by the family and spent the afternoon and early evening 'playing' in my case, watching and having cuddles where hubby was concerned.  The eldest grandson is now reading some of his books with me and we enjoyed drawing, jigsaws and talking(he definitely takes after my side of the family)!!

The forum continues to be my  escape route to support and I am so grateful to all who take the time to chat.  Hubby often asks who I am talking to and seems happy enough that I have an outlet (he still finds is difficult to talk openly and its only when my frustration boils over (which it does due to lack of knowledge) that I tentatively ask questions (usually the week leading up to his appointment, like now, so that I do not have nasty shocks in the consultant's room).

I read on Beryl's thread that you still have 'trusty Rusty' to help with exercise routines and so hope the weather will improve soon (rotten here again today) so you can enjoy it more (not much fun getting wet day in day out).  Also that you have been getting some help with how you are feeling and Beryl will so understand how you are feeling awash with grief for your lost Tony.  I too think of you and hope you can find an inner peace one day and hope you will feel able to pop into the forum.  Thank you so much for the information about the patches and have stored that knowledge for future discussions with hubby's team who are so supportive and always give me the opportunity to talk to them.  One thing we cannot fault is the NHS and hubby's 'support crew' - 2 lovely girls who are always available through their contact numbers during daytime and then 24hr answerphone service and then of course he has access to MacMillan Nurse if needs be (so far this was only required when he had chemo - can you  believe that was over a year ago now!!).

Well thats enough of a ramble for now.  Hope you enjoy your time with the family and again thanks for caring enough to contact me.  Virtual hugs and kind thoughts sent your way.  Jules xx

Good morning Jules,

I am so sorry I didn't get back to you yesterday. I was persuaded (or rather bullied to be honest) by my wife to tidy up my things in the spare bedroom, mainly paperwork I had been putting off for a while. This took much longer than I expected as we ended up changing the room around as well.

I am so sorry to hear new meds not working and that your husband has had to revert to previous regime. Although I can understand you feeling apprehensive about the appointment on Tuesday, I bet in other ways it cant come soon enough. It must be hard for you knowing he is in pain but not being able to talk to him easily about it. We men don't like to show pain  ( it's a macho thing ) and it's a natural reaction to try and protect our loved ones from it but I have learnt that you ladies have an instinctive feel for things like this, for you know your men too well for us to be able to hide much from you.

I can understand you are concerned about him going into work especially with the hours drive each way but it may take his mind off the pain for a few hours. I can believe it for he seems so devoted to his work. To me, although I enjoyed my work, I prefer to be retired as I can do what I like for the first time in my life, plus I can help Mrs B and make sure she doesn't overdo things. I hope your consultant is able to sort out the pain problem quickly and easily especially so you can get away next weekend.

I have written an open letter which I am sending to the rest of the committee who I met with last Saturday about the cost of travelling to hospital. I am asking them if they think anything that should be added/changed, and afterwards I intend to send it to my M.P. As you can gather, I do feel very strongly about this.

I do hope things get better for you both, please take care and I am sending best wishes to you both for Tuesday. Hugs from Brian.

Thanks Brian. Will be keeping everything crossed for Tuesday and will be back to share any news. Take care.Jules xx

Good morning Jules,

Apologies for 'Long time, no chat!' (Still doing more observing than posting!)

Just wanted to wish you and hubby love and luck for Tuesday's appointment. I do hope your hubby's team can sort his meds.

Lovely to read of your husband's enthusiasm about going back into work to help his colleagues out! Hope this, coupled with new meds, will give him a lift and enable you both to have a really fantastic break away next weekend! You deserve some quality 'Jules' time and hope there's lots of good food, good company and lots of relaxation on the menu!

Belated thank you for your birthday wishes (on Max's thread) For some reason I didn't receive a notification of its arrival!

Looking back, I can't believe how fast January has whizzed by! This was really brought home last night as we had a Burn's Night supper (partner half Scottish!) No doubt, being a chef, he'll embrace the Chinese New Year with an appropriate menu too!

I know how lucky I am to have a 'man who cooks' and I'm sure his kitchen capers have helped me on the road to recovery!

Well, enough of my Sunday morning rambling (probably the only sort of rambling that will be done today as the weather here is grey and wet!)

Enjoy the rest of your weekend,

Love and hugs to you, Jo xxxxx

p.s. Hi Annabel, thanks for your post too, on Max's thread (Max56 are you online?) as I said to Jules, for some reason I didn't receive a notification on its arrival! Will post you a message there asap!   xx

Hi Jo

Thanks so much for your good wishes.  This forum continues to give so much support,its heartwarming;which is more than can be said for the weather.I am sitting watching rain once again stream down our windows and very thankful to be indoors despite preferring to get out for a walk - not today!!!

Have just enjoyed the Australian Mens Final Tennis and grateful that hubby feeling a bit better this morning having taken the decision to return to his old medication regime until his hospital appointment. Its helped give him a good nights sleep and he has kicked the GP's suggestion of a changeover into touch!!!!  The trial change suggested left him unhappy and in more pain so after 5 days is back where he was just over a week ago but still the battler I know and love (it so hurts when he hurts).  We are still very hopeful that the weekend away will go ahead (we did not manage the get-together last year as the chemo just knocked him for six) and he wants to be there so we will do all we can to make it happen (our friends will take over the driving if he feels its too much but he is driving himself to work tomorrow (this could prove the 'dummy run' to see how he manages a drive of more than an hour)).

I have a few busy days ahead with a stock audit at work, visiting Mum, longers hours, the hospital appointment (emotional rollercoaster does not do it justice just now) and if Friday a.m. arrives and we are both up for it (holding my  breath just now) I will get my  hair cut, nails painted (whats left of them) and join my very brave man in our quest for a great weekend. My 'healthy' eating will take a back seat as I enjoy cooked breakfast for two days and 4star cooking for the weekend.  To think you live with a chef = yummy.

Take care of yourself Jo and thanks for being on the forum, along with so many others too numerous to mention, but worth your weight in gold. Have a peaceful day - am off to wipe my eyes and make a coffee - what a journey.  Jules xxx

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

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

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

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.

Hi Jules,

So glad your hubby's consultation went well and the doctor was very thorough! Good news about getting the go ahead for your well deserved weekend away too!

You mentioned about the doctor prescribing steroids to enhance your hubby's appetite. I was prescribed them for the 3 days following chemo infusions (to help with nausea and appetite) and they really did help. They also improved my energy levels too! I used to take one with breakfast and one at 2 o'clock. I was advised not to take them after this time as they could impact on my night's sleep. I did feel a bit like the Duracell Bunny sometimes!

Great to read that the sun shone on you today! We popped over the Pennines to look at a business for sale (not quite what we wanted) and the sun was shining in Lancashire! Sadly, it didn't follow us back to Yorkshire! And the forecast for the rest of the week looks positively chilly! Brrr! Good excuse to cosy up on the sofa!

Hope the rest of your week goes well and you get yours and your hubby's glad rags packed!

Enjoy a fabulous weekend and do let us know all about it when you get back!

Love and hugs, Jo xx

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 Brian

Thanks for your kind response, yes a certain amount of relief thats for sure.

Glad MrsB warfarin check went well (Mum also on this drug so know how important it is to keep levels right).  How is your brother in law at the moment and also your Dad?

Also seee you are being kept busy making things and writing.  You certainly make the most of your time or is it the wife's way of keeping you busy so as to ward off Brianitus!!

Am working longer hours today so wont be home till evening so that should keep me out of mischief.   Have a peaceful day.  Jules xx

Hi Jo

Thanks for your kind response and the useful info regarding your use of steroids.  We are awaiting call from GP as hospital sent 'urgent' fax to try and get new meds in place  before we go away (I am a little doubtful here as they are not known for moving fast!!).  Its only the new drugs he needs at the moment as everything else is on repeats through our chemist so he only has to phone to arrange those when we return.  Of course, it remains tobe seen as to whether he will follow consultant's advice re the steroids (he is I imagine pondering on this!!).

Looking for a new business sounds exciting and hope you find what you are looking for (dont you overdo it now!!) - what are you hoping for?

Certainly chilly here this morning so can imagine you may be ever colder further north.  Lets hope some sun can be seen just to make us smile.  Mind you I am working longer day today so wont get to see any of it (work upstairs - no windows!!!) hey ho.  Only two days to work then a 5 day break (away for 3) - it feels like a real holiday and will treat it as such!!

Have a peaceful day and take care of  yourelf.  Jules xx