Dear Jules,

Glad to see you're up and running again. I must confess I did get a little worried as to where you were, but you're back now and I'm pleased. Thank you as ever for your words and support and kindness.  We are beginning to realise that it is the heart failure that is giving the most trouble now. All the time we thought the dizziness was due to the brain tumour, I think it is his cardiomyopathy. His heart can't do its job and pump enough blood.  The weakness too, the shortness of breath. Some caused by the tumour but also his heart.  He also gets chest pain too.  And as you say, watching this once strong man struggle is agony.  The physio suggested one of the frames and he refused, he's very similar to your husband I feel.  I don't think now it would help him though. Day by day that's how to go.  My friend gave me a good quote, if you are a "Finding Nemo" fan, lovely film, She said in the words of Dory, "Just keep swimming", and so we shall.

On a positive note, I have much to tell you and I think you'll be proud of me. I sent out a group text to my good solid friends telling them I am not coping though it may seem I am, and to come see me as its more hard to get out, and to text and call to make me feel I'm not alone, and I am seeing 4 of them over the next 4 weeks, and they text me lots. I need to find time to call them and I will one of them today.  And I needed childcare for the next 2 Friday's, I'll tell you why in a min, and at first I just accepted I couldn't do what I had planned, so then I sent out a text to 3 of Will's friends mums asking for help, as inset day and half term, and both days are now covered.  The reason is, we are doing a 6 week course at the local hospice, which introduces us to various people like OTs, physios, financial, all sorts, and other people like us. They  provide a lovely lunch and the people who run it are so amazing. Have relaxation therapies apparently. I came away from there a different person in some ways. We missed the first week, so we now have 4 more left, so I didn't want us to miss 2 more.  But we are going to be able to go now, and Will is happy to go to his friends. He has been so insecure lately and follows me everywhere when we are out.  He worries so much that he will loose me too. Did I tell you the Carers Association give you a £25 credit card to spend on treat for yourself, it will be declined in certain places, so I have booked a hair cut for Wednesday.  I have psychologist coming to see me tomorrow as well as taking Will to a greet and meet meeting for Young carers as he is a carer too. He can go to a Saturday morning club for young carers if he wishes and just have fun.  I realised I had to handle things differently and I am beginning to take some steps towards that. Can hear chris moving so I'd better go help. Take care Jules, have a good day, much hugs, Mandy xxx

Hi Mandy,

What a great post to read when I switched my computer on. Am so very very proud of all that you have achieved since we last talked (and I was worried when I could not get on the net too as it has become something of a lifeline for me!!).  Wish I could give you a great big hug in person but a virtual one will have to do. 

As you have found out, there comes a time when that 'cry for help' needs to be done and what wonderful results you have had from your good friends and the 'school mums'.  My daughter has a good network through the school and by sharing those feelings you now find you are not as alone as you had assumed.

The course at the hospice will be a great help I am sure and the carers' days both for you and Will should  help give you some necessary support and fun too.  We all need to see the lighter side of life  even in stressful times.  It also sounds as though there is more understanding relating to Chris's health issues so hope there is more help there too.

I took the absence of technology as a way forward too!!  I have spent the last few days sorting and de-cluttering. I am having work done on the ground floor (had to begin somewhere ha ha) and had electricians in re-wiring for two days. As  I am open plan downstairs am getting in decorators (not sure when start date will be but within a month or so) and so this has spurred me on to get rid of lots of 'stuff' that has been sitting idle/unused or just plain tat.  Yesterday my son-in-law managed three dump runs and a series of trips to local charity outlets/reclycling and am now on a roll!! Treated us all to a Chinese 'eat as much as you like' last night as a thank you.  My son then picked up on the 'clear out' and came over today to finally sort his old room out (he only moved out 8yrs ago!!!) and so another four hours of sorting and boxing up and he has left with his little Ford Focus filled to the brim with first stop......the dump.  I have three bags of recycling which will be collected tomorrow and a lot more space - woo hoo.

Cannot tell you how therapeutic it has been and the charity shops that took in my goodies were very appreciative.  Now when the warmer weather comes I will not feel guilty sitting in the garden as I will have achieved some much indoors.

'Finding Nemo' a favourite of my grandsons and the quote is actually very apt.  I only 'managed' hubby's illness by taking the day by day way of coping and actually am living my life very much that way now.  Way to go!

Enjoy your well deserved trip to the hairdresser (I always find that so relaxing) and take care.  Hugs  Jules x

Hi Jules, my mum is coming over soon so I'll message you tonight. Have a good day, big hugs, Mandy xx

Hi Mandy

Enjoy the time with your Mum. I am catching up with mundane housework  - highly exciting!!  Take care. Jules x

Hi Jules,  

Thank you so much for the message you sent previously. To know you are so very very proud of me made me feel so good.  Been up and down since then but that's natural.  But I extended out for support and one friend in particular has messaged me every day.  I will be seeing her next week in half term which will be lovely.  And today is haircut day! And no rain is forecast which is an added bonus for the walk home from the hairdressers lol.  

Had a good day with my Mum, we went to try and find a coat for Chris as he needs a new one as his others are a bit tight due to fluid in his belly.  We failed on that but had a nice lunch out and then she came to puppy classes with me and Will and Milo. Felt a bit low towards the end of the day, as I think I was tired. Hadn't stopped all day really.  Pushing the wheelchair is not easy due to rubbish tyres but have a new one in in the pipeline so that'll help. Actually thinking about it the hospice said they'd lend us one, maybe I should give them a ring and enquirer further.  Got one coming via GP but not sure when and I struggle with this one.  And my brother is coming over this evening which will be nice.  Chris was going to go out for a meal with his mates Saturday but I felt that it was too much even in the wheelchair without me there to help him. So we are having about 6 of his friends over for a curry.......lol.  I'll hide in the lounge with Will but at least I am here to help him and if he gets tired he's already at home.  We'll have to take it easy Saturday and make sure he naps in the day to enable him to enjoy the evening.  

It's going to be a nice day today so I might push him round to the chemist to pick up my meds.  Sadly I am on antidepressants but if they help then that's good.  They've been increased so maybe they are,  I just feel so rubbish sometimes which I guess I will, it's so weird, sometimes I feel as if I can't possibly do anymore, can't cope, so overwhelmed and then I feel full of strength and motivation. Such a rollercoaster. 

Jules, I want to thank you from the bottom of my heart for the wonderful support and friendship you have given me.  I would love to meet you one day and hug you for real, but I know that is probably impossible.  We live so far apart.  But I want you to know how much you have helped me just by enabling me to talk about stuff, thank you. I tell everyone about you lol. You're a star xx  

Well I'd better go get organised so have a good day at work if you are working and catch up soon, love and hugs, Mandy xx

Hi Mandy,

Hope you had a relaxing visit to the hairdressers. I only go when it needs cutting but do enjoy it and as mine is now shorter than it's ever been really need to go every 6/7 weeks to stop it annoying me!

Really pleased that you have managed to reach out to others for support and am sure you will all benefit by it.  Your kind words regarding my responses were lovely but you know, I am only doing what others did for me.  In some ways I feel I am putting something back into the forum community who were so supportive during my up and down rollercoaster ride (nearly three years with hubby) and there are still times when I need help too (sometimes it is hard to believe he has been gone from our lives  over 13 months now.  There are no perfect solutions to such difficult times but virtual friendship helped me and so I am pleased you have found it useful too.  Would certainly give you a hug if ever in your neck of the woods but virtual ones will have to do for now.

Glad you had a good time out with your Mum and bet she enjoyed it all too.  Think feeling low by the end of it just reflects that you had enjoyed it so much and probably did not want some sort of normality to be over.  I used to feel that way if I did something enjoyable.  Shame you could not get the coat for Chris but think the lovely lunch and puppy classes with Will ad Milo were just as important.  My hubby would not entertain a wheelchair so I could not take him out (though he was able to drive up until about three weeks before he died this would only be to his medical appointments).

I am sure it will be lovely for Chris to have some mates round at the weekend - a lad's night in with a curry.  My man used to go out every friday evening to the local pub with a friend whilst I went out with his friend's wife.  We would drop them off and then pick them up on ouIr way back (well I was just a passenger!) and he only missed the last three Fridays. After that his mate would pop in and keep him company whilst I went out - good friends and I am still seeing them as often as I can even though they have moved a train ride away now.  In May I am going away with them for a long weekend so that will be lovely.

Hope you have some luck in getting a better wheelchair.  I could have hired one from the local Red Cross or social services would have loaned us one but hubby just would not entertain it.  I would imagine it can make your arms feel like lead after a while especially as the current one's tyres are poor. Has Chris got more treatment to have and do hope they can stabilise the heart problems for him.   It's so much to sort out.

So half term looms and I am still not sure if the decorator will be coming in during some of next week to  start work. He is popping round on Friday so may find out more then.  I have reduced my work days to just two now and feel much better for it.  I actually had booked next week off so will end up with almost a two week break once I finish tomorrow.  Hopefully will spend a bit of time with family and/or friends. It's my daughter's birthday on the 14th and son's on the 21st so we are getting together this weekend to celebrate with a buffet lunch at my sons place.  Lots to talk about with forthcoming arrival of my son and his fiancee's baby (end of May) and a holiday in August for a week (with new baby all being well) plus they have set date for the wedding next February. Hubby would have been delighted and so proud.

Well had best go and fix my evening meal and then get on with packing up glassware. Trying to get ahead of myself so that when kitchen gets ripped out there will be less to haul upstairs!

Take care of yourself and hope Will enjoys his half term break and that Chris enjoys his lad's night.

Hugs, Jules x

Hi Mandy,

I have been wondering how you have all been keeping - I hope that all is okay. Sending good thoughts and warm hugs your way. X

Hi Mandy

Just wanted to let  you know I am thinking of you and hope you have the support you need to help just now Sending hugs.  Jules x

hello mandy i just join an i do fully understand you . my husband has been fighting this horible illness now for two years , he has had op chemo an radio an it still all there i am so  cross nothing has worked i have had to work all through it to pay for morgage an bills . also i fine it a bit of rest bite for me bit of normal  an it help me keep strong , so keep that chin up there is hope . even my husband is now trying diffrent foods that he has heard about tumric carrot juice few things that has help others , so anger will pass an exspetents dose come an you learn to live with it sorry about spelling ....