Hi Jules

You might want to try hubby on Lucozade.  My sister suggested this to me (someone had suggested it to her when she was on chemo) and it does taste fine.  Apart from the original they now do orange, carribean crush, pink lemonade and melonade flavours.  Forget the melonade (it just tastes weird) but the others are fine.  Not sure if it is because they are fizzy but they do seem fine.  might also hlelp hubby with energy.

Glad to here he made it around the supermarket.  It is sad that it was his only exercise this week but it is better than nothing at all.

I really cannot understand the social workers wanting to put your Mum in a retirement facility rather than a care home.  Surely the latter has got to be better for her.  It is so sad for you that she says she wants to die.  Not sure how I would cope with being told that.

I terms of you job I would hang on to this as long as you can as it does give you a sense of normality and keeps you in touch with the real world.  Perhaps when the time comes for hubby you can arrange to take a leave of absence so you have this to go back to afterwards.  It will no doubt be very difficult but I am sure would help in the long run.

You are not moany at all.  If anyone is entitled to moan on the odd occassion it is you as you have so much to put up with and the majority of the time you are upbeat and offer so much advice and support to others.  Not sure what most of us would do without you.

Very best wishes with trimming the Ivy.

Gill

Bless you Gill for your kind words and support.  I am only doing what so many others here (including yourself) do where they can.  Its good to be part of a community that understands and writing things down sort of puts things into perspective from time to time. I grew up with Mum's bipolar illness (though it took a while for proper diagnosis) and sadly have witnessed three 'crys for help' all whilst Dad was still alive and without him she would not be here today.  Now its my turn to make sure she can do no harm.

Thanks for the hints on the drinks. Fizzy might be the way to go as he already tolerates cola drinks so will add suggestion to my shopping list. The lack of energy is part of the disease as fatigue is a major side affect of his type of cancer (given that I  have chosen to read the leaflets he was given at the outset which he threw to one side!!).  Of course, am also topping up sugar (suggested by his palliative team) wherever I can hence the chocolate and coated cereals (sometimes the temptation to join in the 'unhealthy' eating plan proves to  much and I give in but having managed to lose my excess weight in the past couple of years, need to be sensible now.

Well the rain left off late morning and I have weeded front garden and hacked the ivy down, resulting in aching arms and a lot of 'green recycling' for collection on Tuesday. Job done.

You are so right about work and I was offered six months unpaid leave of absense at the beginning of our journey but we discussed it and did not feel it would be necessary and so far so good.  If hubby wants me at home I would give up tomorrow butI have a feeling he will opt for the district nurses assistance (less emotion involved for him).  He is on their rota and they pop in from time to time to check up on him and it takes just a phone call to have his community nurse (attached to his consultant) to call in too so we have plenty of available back up as and when required.

Have been following your other posts and you have a great way of helping others too. Hubby is currently eating Easter Eggs (we made sure he got a few!!) and managed soup for lunch so quite a good day today.   Chat again soon.  Take care  Jules x

Hi Jules

I know what you mean about "crys for help".  Had a few with my mother over the years.  She was addicted to painkillers  for years which did not help.  thankfully after the last one she actually got to see a psychiatrist for a few months and that was over 12 years ago now and apart from a heart condition she is doing ok.

Glad hubby got a few easter eggs and is working his way through them.  I can understand that he gets so tired  because I know a little about how the disease works.  That coupled with the drugs and the lack of interest in a lot of things probably means the time passes more quickly if he sleeps.  i am glad he has the support he needs and you are probably right about the nurses and the lack of emotion.

As to work if you do need to take the time at least you have got the option which is great. 

Big hugs to you.

Gill

Hello Jules I notice in your note to Gill Hubby suffers from fatigue which is a side effect of his type of cancer ,My Tony was the same and coupled with stage 4 renal failurecaused by chemo he realy suffered from fatigue although I think maybe all cancers make fatigue a symptom but its go with how he feels rest as needed ..I can rember the diatition recomended eating a banana a day because Tonys potasium levels were low and what a daily struggle  it was I made smoothies  which he liked but eventualy he got sick of banana..Jules thankyou for kind wishes on our new arrival James,they came to dinner yesterday andI had lots of cuddles and showed them how to bath him as they only stayed in the maternity home for the day so had no idea how to do it so I had the honour oh he is so gorgeous Then Bryony fed him and he slept lovely ,the weather is still lovely but think rain is on the way so maybe just maybe you will have some lovely sunshine instead and are able to sit outside and RELAXand had have some me time hard I know but you certanly need it .....Hugs as usual Susananne x

Hi George

Glad to hear the good news.  Hopefully the result of the scan will be good to.  The waiting is the worst part so hpe it is not too long until this is in.

Best wishes.

Gill

Hi Jules, How are you doing?  I sensed you were a little down when reading one of your previous posts regarding your Mum.  It must be so difficult, especially to hear her say she wishes to die.  It is a sad fact that as our parents get old there is no easy way, whether they are ill and frail in their own homes or in care homes they are always a constant worry.  I have been thinking about that a lot lately and I have come to realise that as terrible as things were for me last year at least my parents remained fairly independent in their home together until the end. Even though the end for them was so close together maybe it is better that they weren't apart for long. Listen to me being all philosophical, perhaps that is a sign that I'm moving forwards now!  Anyway has hubby finished those Easter eggs yet?  They wouldn't last that long in my house LOL!  Take care and lets hope the sun continues to shine (has been quite nice here today).  Hope x

Morning Susananne

Thanks so much for your words of encouragement/support and advice  The eating side of things does vary daily almost and he did tell his consultant that he eats because he has to, not because he wants to! She is very much of the opinion that because he has lost the love of his life (Work) he has no motivation to do anything and we are all pretty sad that whilst he has a quality of life he cannot enjoy that time (no one really knows how long that will be).  He takes any recommendations with grace (including counselling (gave up after one session - not for him) support group  (throws letters away) and is on anti depressents ( I have seen  no improvement but they are keeping him on them)).  Sadly it would appear that his new normal is spending every day watching constant repeats on tv - even his birthday presents of dvds and jigsaws go unused. The only time I see his spirit lift is if his old boss rings (for advice) and of course, in front of our children and grandchildren (we are so lucky they live close by).

I am so lucky to have work support and good mates as well as our children to keep me sane (along with all my virtual mates) otherwise I may need some of his 'pills'  but its not always easy to accept that I cannot control his life for  him, just be here when he decides to 'let me in' so to speak.

So pleased you are enjoying baby James (I do remember just how 'slippery' I found bathing my eldest (now 32) the first time) and its great that you can help the new parents gain confidence.  Hope you are keeping well yourself.  Sounds like your weather has been so much nicer than here inMiddlesex.  Very dreary and damp and apparently getting colder for the bank holiday. I think I will be 'clearing out cupboards' for fun.  Look after yourself.  Grateful hugs Jules x

Morning George

Pleased to read your update and that blood test were good news.  Hope you will  not have too much longer to wait for the scan results.  Wishing you and the family a good week and hope you still managing to enjoy the garden (weather here pretty drab but put on the coat at the weekend and cut back (tamed) our ivy which was in danger of blocking our back alley access!!).. Hugs   Jules x

Hi Hope

Lovely to hear from you.  I do really try not to post 'downers' as they really do no one much good (especially me)  but think my own frustration with this illness sometimes gets the  better of me.  I do not enjoy being unable to control situations and both hubby and mum are dealing with things in the only way they know how so am feeling a bit of an 'outsider' to everything at present.  That being said I know I have no choice but to go with the flow (my frustrations are not their fault just a side effect!!).  Hubby has got up earlier today (the distrtict nurse came yesterday and left a note as they could not get a reply (he was still in bed!!).  I am on my day off and will be trotting (well strolling) down to see Mum later.  Was watching the morning news but hubby now has remote(back to repeats !!) and once I have finished on the laptop will go an do housework upstairs before going visiting.

Pleased to read that you are finding life a little easier  - its all about different levels of acceptance I think - everyday is a new learning curve.  Expect you are back at work now that the Easter break is over though a long weekend looms for May bank holiday (so far have not been asked to work this one).  Hope you and all the family are keeping well. Grateful hugs.Jules x