Appointment cancelled

[Kaz1959]

Hi I just received a letter cancelling my appointment for next month and just to wait for another ..I feel devastated I was diagnosed a few months ago and I am still no nearer to having anything answered I don't know what type I have what my options are ,I am having lots of problems with my digestive system and my legs swelling which is making walking painful ..I am working full time and I am so tired all the time ..I just don't know where to turn I feel so low today ..I know the NHS is under pressure and there is a flu epidemic but thats not helping today ..I am trying to be positive and taking care of myself with food choices and the like but I am so worried that this virus is raging inside me and all the time passing is wasted ..I tried to go private but was advised not to as I may not be able to go back to NHS afterwards ..this virus killed my husband or heavily contributed to his death he had to have a transplant I do not want to leave my family or have history repeat itself ..sorry for this negativity but I cannot see a way forward right now ......

[navigatinglife]

Hi, I felt the same last year. Once you have been to hospital things progress pretty quickly. I understand the frustration, think I've had it maybe 30 yrs. This forum helped me so much by connecting with others in the same boat and for the much needed support. Call the hospital and say you are prepared to take any cancellation. I too work so I do know what it feels like. Really feel for you, get on that phone and keep up the good work with the diet etc 😍😍

[Kaz1959 in reply to navigatinglife]

Thanks I hpjust want to get on with it im just feeling crushed today x

[Mizzkent]

Morning Kaz I’m so sorry to hear you are being kept waiting! Please try not to give up hope! I have lived with knowing I have had this for almost 16 years and that’s been so very hard always there hanging over me spoiling any little bit of happiness I found.For me getting the diagnosis was like a death sentence.I felt like all them years I was just waiting to get sick and I never looked after myself pushed everything to the limit drinking partying eating a bad diet etc.I was offered the old treatment back in 2005 and refused it no one understood why but I know I did the right thing because it probably would not of worked for my type.

Don’t apologise for being negative that’s what this site is for we all have our dark moments this is not easy to live with we have the physical and mental symptoms. They go hand in hand your doing the right thing eating well. I also understand how hard it can be working full time too I worked 2 managers jobs in hospitality before I had my daughter often 16 plus hours a day on my feet. Looking back I honestly don’t know how I did it for so many years.

You should be very proud of yourself for holding a job down!

I understand your fears with what your partner went through but please try to remember each of us are different! And it will effect us each in different ways! So that does not mean your going to be the same. All that drinking I did over the years and I have no scaring on my liver I don’t know how I managed that.

Just because treatment is on hold for Right now doesn’t mean your not gonna get it so try your best not to stress about it to much.Back in the day when I was offered treatment you had to go on a waiting list for 6plus Months.Treatment time has rapidly speeded up if you have had your tests already then once they start up with treatment again you’ll already be good to go. Take good care of yourself until then I wish you the very best and I’ll be keeping everything crossed for you! Xxx

[Kaz1959 in reply to Mizzkent]

Thanks for your reply , I am better today thanks I will phone hospital tomorrow to see where I can go from here .. when my husband was diagnosed there was hardly any treatment available and he took part in trials .it didn't really help and we just got to see him get worse and worse and he had no real quality of life ..then he had a transplant and for 4 glorious years we were like we used to be but of course the virus was still present and he ended up getting post transplant lymphoma he was dead in 6 weeks ...I feel like every day I don't get to see someone is a day wasted ..my job is dealing with terminally ill and people with mental health problems it is very very challenging but its actually the walk to.my office from the station that is causing the problems because my legs are so swollen ,I just felt defeated yesterday ..today I am up dressed I have done a shift in my local night shelter serving breakfast and I am off out for lunch ..I accept I cant change what I have but I am not going to let this bloody thing define me ..I have here to come when I feel low and know I will not judged so thanks to you and everyone else her ...peace love and light to you all xxxx

[jeanjames]

You are allowed to be upset. The cancellations and waiting is awful - but hang on. Things can only get better. Sending you healing thoughts xxx