General Chat

Hello, i felt very guilty leaving this thread i started, so i have rejoined , also ive decided to do my daughters tree on her dads side should be a challenge as i know very little about them.

Well thanks for the good luck wishes i am really scared ive got cysts all up my left arm now and there very painfull so im sure thats not cancer but worried about the hard lump in my boobie i go at 4.20

Daff i wish you so much luck and love .

Annie the same too, please keep us all updated.

Sdad is having a lot of trouble with his new tube to pass water, they think it has a kink in it !! more like something pressing on it, the tubes can't kink, things you learn eh, all off you take care will be back on later im only posting on here for now and mayby to ask for help with natalies tree till i build my confidence upp again lots of love puss xxxxx

Puss Morning Babes, glad you have rejoined us. Good Luck for 4.20.
All the Best
Julia in Derbyshire

Welcome back, puss. You were much missed by all at the Wales meet. Those of us who havent met you were disappointed not to do so.

hello im sorry too was really looking forward to it never mind there will be more, great news the lump is just noduals and i just have to keep an eye , the one lump that moved is also harmless so thats a weight lifted, just got to look after mother and S dad , thanks again and hope you all have a peacfull night sleep love from puss xxxxx

So glad to see you back puss. I feel relieved for you that the lumps are not too serious, fingers crossed they all go away soon. Hope your S dad will be ok too.

If I had lived in Wales I would loved to have come along and met everyone, you never know one day I may make it over there.

Emotionally I have hit a low this morning. Trying to get my super funds out of australia and they are giving me a lot of hassles. All our financial pressures are getting on top of me and I wanted the money so I could stop working for a while. Now it looks like they are not going to give me any. Eventually we will lose a lot. I suppose I should cheer up cos there are a lot of people worse off than me. But I can't help feeling like this. It is also becoming a problem for my partner and we keep arguing. He wants me to leave. Also work are putting a lot of pressure on me cos of the time I have had away due to illness. I have got a meeting with them next week, which I have got the union to attend with me but I am concerned about the outcome. They are also treating us all like kindergarteners and we are not allowed access to our building until just after 7am. I am usually about 15 minutes early and now can't get in. What the heck do they think we are going to do for 15 minutes, doesn't help that they have a spy that listens to everything we say then dobs us in to management.

I feel that I am at the end of the rope that I have been hanging on to and can't hang on to save myself anymore. I feel so low that I just want to give up. I don't know what to do any more.

Am feeling a little bit better than I did this morning. Although I am still feeling extremely stressed out and worried.

Too many things going wrong at once has taken its toll.

Annie, so sorry everything is difficult for you at the moment. Sounds as if you would be well rid of your partner if he cant be more supportive. You would be able to concentrate on yourself then. If you have Super due you, how can they not pay it? Do you have Citizens advice bureau over there where you could get help?

so really sorry to see how much ypour suffering annie is there anything we could do to help and find out for you Annie its really not fair that your having to cope with this aswell as being ill , do you have a PALS or something similar from your hospital or doctors, PATIENT LIASON SERVICE etc, they seem to help over hear, my Sdad is having the same problems, he has to travel 60 miles away for chemo etc its 30 pound for my mum to stay in the residents unit, she needs to be with him obviously , so they are trying to sort funding out, he feels bitter he has done hard labour work since the age of 14 now 67 just retired why is there no immediate help but hey ho , he goes to have his tube sorted tomorrow as he has no controll over it so he is unable to go out

Annie if you fancy a private


Daff i will offer my bonemarrow, i know its painfull but id love to help have a think im sure your nearest will offer but if there not suited i would offer xxxxx

Puss, that is very kind of you, but 1. my brother is an almost perfect match, and so I don't need to hang around lol... they cross matched me right from the start, and I also have two other good but unrelated matches if for some reason little bro can't give, so I am very lucky to have heir and spares, lol All three of my matches are male, funnily enough... and one is in America.

the second, is that it is highly unlikely that you would be able to donate with you own health problems, but again, thank you.


For those of you who think donating bone marrow is painful, it isn't.... it is not the marrow that is taken any more, it is the stem cells, and they can be taken via a process similar to dialysis... the only pain is from the cannula initially being put in, and then you may feel a bit light headed at times... but you are lying down, and monitored... and only minute amounts are taken, in comparison... the rest is shoved straight back into you. So much more user friendly. There is sometimes a drug given beforehand to increase the production of cells, and that can cause some minor bone aches, but it would seem that paracetamol sorts that out, lol

Annie, remember those links I gave you... they will have someone with the knowledge and expertise about financial issues that you clearly desperately need... you have to go to them and find out what financial support is out there, that will at least take some of your anxiety away... I don't know what to say about your financial situation, as I know nothing about the system over there... I don't know much about it over here, for that matter, but have been helped by friends here who have been through our system.... and also the UK Leukaemia society, I gave you the link to the NZ equivalent... they are the ones who will know EXACTLY what you can DO... all we can do is offer you a shoulder, and listen.

Have you got a letter from your Haemo to take to your meeting with you?

Good luck, and take care

Love

Daff xxxx

Hi

Its only cos I moved home to NZ that Aussie won't release the super funds. If I had moved to any other country in the world they would have handed it over. It is so cruel. That money in aussie would really help me. Have supplied them letters from my GP and specialist and now they have the nerve to ask me for letters stating I can't get treated through the public system and for the cost of treatment before they will even give me a cent. Makes me so angry.

Have a meeting with one of the union organisers today who is going to help me with my battle against management at work. That will be at 12.30 today I see him then he will come to the work meeting next wednesday.

Next week will be busy. Have a job interview on monday, work meeting on wednesday and back to the hospital to see the specialist on Thursday.

I tried to talk to partner last night and this morning but he barely says a word. If I try to get close to him, he just shoves me out of the way. Chucked his breakfast down the loo cos he left for work again without having it. Will serve him right if he is starving hungry today. I didn't put any extras in his lunch bag to teach him a lesson.

I have already decided that if we end up separating, as soon as I can get enough money together I am leaving NZ and going where he will never think to look for me. Have started getting a folder of bits and pieces ready (which I keep at work so he won't see), will have to order a few more certificates before I can apply for visa's etc. I will be moving to Wales if anything happens. Why would I want to go there I hear you ask? I just feel drawn to that country, I just feel that I need to be there and that I can the be at peace and relax. And as I bonus I would get to visit all of you lovely people : )

Feeling really tired today and got a bit of a headache. Probably from not enough sleep. Will go have something to eat and have some codeine and hopefully will be feeling better soon.

At least work will be fairly laid back today, our team leader is away for the day and not back till tuesday so we will be able to fluff around LOL

Daff, I wouldn't be able to donate bone marrow but I can donate a hug, how about that instead? You too puss. Big hugs to both of you. Big hugs to everyone on this thread for all caring about each other. Am here for anyone if needed


Annie
xxxxxx

Daff Really pleased you have it sorted and i guess health reasons would stop me donating though i will get it checked, lollolol the last time i heard of taking bone marrow was they went through the bone and took some marrow, pleased its moved on, i suppose my tablets too would stop me donating will find out tomorrow.

Annie , would marriage guidance help, or do you think its gone to far, would a break away help, Ive often gone and stayed with a friend and by the next morning i cant wait to get back home, me and specky have had a few lows and i know how hard it is , but i also know how it feels when your so alone in your relation ship and the love you once had is turning to hate and resentment, would sitting him down and stating that you have had enough and need to move on , its so hard to say those words because deep down your waiting for your partner too agree then the realization is so hard to bare , or another situation you really do want out but your partner doesn't, i really feel for you Annie and wish i could give you a hug, and yes it would be lovely to meet up , take care and remember I'm here if you want a private chat xxx

Lorraine, about your stepdad having to travel. Do they not operate assisted travel for patients in his area? When my sister needed radiotherapy she was collected and taken and brought home by ambulance (Hampshire). Our friend here who has to go to London for treatment for his lungs gets taken by ambulance. (Gloucestershire) But the hospital didn't offer he had to chase it up. Have you looked into transport for him?

Puss, we aren't married and I don't think that my partner would go to any kind of counselling. I refuse to leave while I am jointly responsible for the mortgage, while my name is on the house and mortgage I am not going anywhere cos what happens if I leave and he can't pay the mortgage? The bank chase me for it. Easier to wait and see what happens for now, even though it is very emotionally draining. He doesn't seem to see how his behaviour effects me. When he gets moody he says I use my condition to get sympathy, then I say back to him that I don't and that he just doesn't care. I can't help responding even though I should just ignore him.

Hi Ann yes we phoned up the patient car service and they said they didnt offer out of county , well my Sdad phoned i took his word we are off to birmingham todAY as he needs op on his tube so i will ask at reception, if you see this in time Ann is that the correct place to ask hope so , its the not knowing of things thats so hard thanks for advice xx

Annie so sorry to hear of your dilema i hope you will be ok and things turn around for you, im sorry he accuses you of you using your illness lets just say god forbid it ever happens to him, on a similar matter but no way as seriously ill, when i became ill with fibro then MS i found it hard to accept cause i had been a active jolly person with huge energy and loving life to the full i was suddenly confind to a wheel chair and scooter through pain i kina gave up for a while and me and specky fell apart he blamed it on my illness but didnt understand he couldnt possibly he had never kwnon pain like it ......untill his back gave way now he is on morphine till he goes in hospital he feels so guilty that he let me down when i needed him so much ... 2 yrs later we are likea a new married couple telling each other how much we love each other daily , hope you dont mind me telling you this youve probably seen earlier posts of mine on chat


i really hope things work out for you Annie i really do i know the situation is not the same but just wanted to point out untill your in as much pain and suffering its hard to make people understand, and hope he realises how your feeling xxxx

Found out that my Sdad has to get a unique number from his GP who told him he wouldnt be entitled to patient car service11 so best thing is on monday morning i will phone social services.

His tube couldnt be altered so he has to go in hospital one day next week and have it operated on and a valve put in.
feel absolutley worn out, im really worried about my mum, her dad who is 90 dont want to eat anymore he is my nans carer but thats another story.
think social services is a good idea hopefully they will be able to help support mum too .

HOPE EVERYONE IS OK, WONDERING HOW DAff is getting on too xx

hi puss, just come on here to catch up after being away with the family for 4 days. just went to skye and the highlands visiting rellies etc and of course a bit of shopping lol.

when ever i go with my daughter out to glasgow for her checkups, the patient travel service here pay and book the flights but also i get an expenses form. so when we use a taxi from airport to hospital, say cost £20.00, i pay it get a receipt and when we go back claim for it as well as my mileage to and from airport about 60 miles. when we use to have to stay overnight because there wasnt a late flight back, they allowed you £30.00 each. again you paid it and then claimed when you got back.

do thay not have this type of service where you live. in fact if i didnt have a car the health board paid and sent a taxi to collect us to go to and from local airport as we are so rurural and at 6am there is no public transport available?
maybe not all health boards offer this service, but worth finding out.

so glad the lumps turned out not to be anything sinister, that must of been a relief for you.

i hope s dad gets sorted out ok.

always thinking of you and your family puss and so glad you are back with us, you were really missed.

annie i have just read all your recent threads and my heart just goes out to you. if i could give you a big hug i would, you certainly need it right now. you also need some support which clearly you are not.getting do you have a good friend you could stay with just for a couple of days as i think you need to get some space away from your partner. as for his food, let him make his own lunch box and breakfast,in fact he should be doing it for you not the other way round.

anyway im sure you know best but you know we are here to listen and not to judge. sending you some positive thoughts and hope you feel better soon and get you work problems sorted as they are not helping you with stress. take care

daff hope you are feeling better now as i know recently you counts were down. are they up now. is it you platelets or neutrofils that were so low or you white cells? glad you are improved though. i would love to meeet up someday and probably i wouldnt be the same again, but im a bit of a mad and insane person sometimes,a disaster in the supermarket, always knocking things of shelves and always pick up the items that leak or have a hole in them.!! oh yes no one comes round with me not even my husband he says im unbelievable. even today my bottle of fanta fell out the trolley, thankfully it didnt burst, i got lucky. so do you know what you are letting yourselves infor, but i guarantee we would have a blooming good laugh as i have an insane sense of humour, thats whats kept me going all these years. yep laughter is the best medicine

love florence

nudge to keep it high up.

hello everyone , wondering how everyone is xxxx

have a few spare moments, the doctor wasnt able to stretch dad s tube so we are taking him in wed for day surgery. i start my medication for progressive MS tomorrow hope to start feeling a bit better than i do .love to everyone on this thread xxxx

~~~~waves to puss