The Diary Of Onebrokelady Aged 60 And A Half

Sunshine_girl2

Really sorry to read this, I hope you get an appt quickly . 

Cherryfudge

Hugs from me too. I hope that appointment comes through quickly and it makes sense not to speak to your daughters just yet, till you have a better understanding of what the readings show.

Deni_debt-free_dreamer

Really sorry to hear about your results and an awful way to find out too
Dx

dawnybabes

😭. Hugs from afar. 

What a horrible horrible way to find out 

Onebrokelady

Thankyou everyone for your supportive comments. I think I’m in shock at the moment with a hefty dose of denial. I can’t believe this is what is wrong with me, it’s so unexpected. I knew I had damaged lungs but not this seriously. The results seem to show that most of the damage is in my right lung at the moment but I’m not sure how  this thing works in the way it spreads. I was up until 4am reading about it and its a scarey diagnosis. 

Last night I went to bed feeling like the end was nigh but this morning I’ve woken up feeling a bit more like it’s something I can fight. I found a support website and read a lot of stories on there about people’s experiences with this disease and it varies a lot on how it progresses. If you look on the internet the prognosis for survival is only 3 to 5 years after diagnosis but that’s not the true picture apparently because those numbers were worked out before they had the drug treatments they have developed now. There’s no cure but there are drugs that can slow it down and from what I can see it’s important to keep as active as possible. I found stories from people who were diagnosed and are still alive 11,12,14,15 years later with good quality of life.

The worst aspect for me is going to be telling my DDs as they are both struggling with their mental health and this is just something else to deal with on top. I’m not going to tell my mum unless I absolutely have to because this will finish her off 

I am also lucky because I also found out that my hospital has the best centre for excellence in the treatment of this disease so that reassuring but I do t know how long the waiting list is. I read last night that some people are waiting a year to see someone before they can even begin treatment. If this is the case here I will enquire about seeing someone privately for the initial consultation so I’ve at least got an idea of what I’m dealing with. I think it might be possible to then switch to the NHS for the medication and follow up treatments. One of the treatments is steroids which I’m already taking so that’s probably helping. I’m going to phone my GP to see if I can get an appointment to talk about it with her but to be honest she is a bit flaky so I’m not holding out much hope for her to know much about it. I’m going to take a few days to process the initial info then I will contact them.

Im going back to work on Tuesday so will have to let them know and I need to think about what to do about working. I think carrying on working is probably a positive thing for mental health but my job is high risk for me catching infections that I now have to avoid so I need to think about it and decide if it’s worth carrying on. I kind of want to ask for early retirement through ill health because I don’t want to put myself at risk of coming into contact with viruses that could make this disease worse but I don’t want to end up stuck at home with no purpose. Lots of things to think about ……. Also I am very angry. I haven’t ever smoked and before I got fibromyalgia I was a gym fanatic who was super fit so getting this has really peed me off. 

This might seem strange but I also deal with bad news by joking about it so last night I had the thought that at least I don’t have to worry about getting dementia now 😬

I’m sorry I dumped my news on you all last night but I really needed to tell someone, I spent the day with DD2 yesterday and couldn’t say anything so by the time the evening came round I was desperate to say it to someone. I will post a separate post about life in general in a minute because we have an exciting day tomorrow. I don’t want my diary to turn into a woe is me diatribe so although I will post updates about my health I do plan to just carry on as normal, it’s only a part of my life at the moment and I’ve got a lot more things to be getting on with 
Thank you all so much for listening to me xxx

jwil

Glad you are feeling more positive.  Is there maybe something you could do at work which isn't public facing?  Similarly if you did decide to go for ill health retirement, you might be able to find something else or volunteering.

Hopefully it will be easier to tell the DDs once you've got a fuller picture rather than when it's all still very unknown.

Willowtree222

Thanks for this OBL. I have to say, I did also Google it and saw that prognosis and sat in shock too. I'm glad there is a support group and that actually, that's not the whole picture and you could have a good quality of life for a long period of time still with the right treatment and care.

I think you're right to seriously consider work. You have shown ready how vulnerable your immune system is. None of us can make your decisions, I think evaluating what is best for you long-term is the way to go. Personally, I'd be looking at retiring, but I know that's easier said than done without being in your exact situation. No matter what, you have your diary friends here to support.

Protecting your mum and daughters is very admirable but please also find support for yourself as well. It's you who has to come to terms with this so find someone that you can be honest with too. It might not be those closest to you, but I think you also need someone behind you to help you whilst your finding out what next. 

Loving the positive side and humour. We do this as a family too and at the hospice we did wonder what others thought of us when we were doing our jokes.

Take care of yourself. X

Onebrokelady

So normal life is carrying on and tomorrow I am going with DD2 to pick up her kitten, we are so excited 😀we went into town to buy supplies yesterday so she has everything she needs to  start her off. Dd wasn’t meant to be picking her up until Friday but she managed to get the week off work so moved it to Monday then she has the whole week to settle her in. DD2 is coming over here later because she wants to see her old man (cat ) so she’s going to stay overnight to spend some time with him. 

Im keeping busy today so basically cleaning everywhere. I’ve nearly finished downstairs then just have to clean the bathroom and remake DDs bed then I’m making a leek croustade for tea, I haven’t had it for ages so thought I would do one today. I’ve got a load of washing on as well so it’s all systems go.

Ive had to rearrange my day to visit my mum this week because I’m working on Tuesday so I’m going to see her on Wednesday instead, Thursday I’m meeting my friend as usual for coffee ( need to tell her my news as well but don’t want to 😟) then I’m working again on Friday, I’m in outpatients all week so at least I’m away from the ward. I don’t know what my off duty is for the following week because my boss still hasn’t contacted the IT DEPT to tell them I am who I say I am after they disabled all my logs ins when I was off sick 🙄 

badmemory

Please also remember that those google results are always worst case scenarios.  Not that me saying that is any help at all.

daisy_1571

Glad to hear things are looking much more positive   sensible to get private appointment to clarify quicker if you need that.

Re retirement- it certainly doesn't mean stuck inside all day if you don't want it to be.  First you'll have time to get house, systems, garden, finances etc in order and the way you want them.  You could look into part time work.  If you won't 'need wages theres all sorts of clubs and organisations.   Knit/natter type craft clubs, libraries often have events on, hobbycraft do in store and online classes, u3a is cheap and you will get a monthly meeting and access to all sorts of information and if you want to you can join any of the associated clubs for very reasonable costs (we are learning musical instruments, do kurling (its different to curling and good fun), an astronomy group, etc), you might have a local wi group, you might find a support group for the lungs (singing and wind instruments are likely to be good for this).  We made it a policy to try something, if we didn't like it that was fine but at least try it.  Obviously there's also many types of volunteering its not all serving in a shop which of course would bring you into more contact with the public - there's back room jobs, advice lines, administration, befriending over the phone or in person one on one with people.   You'll wonder how you ever had time to work  😃 

Daisy xx