The Diary Of Onebrokelady Aged 60 And A Half

Onebrokelady

dawnybabes said:

Could you do something like 111 call handler ? PIP advisor (do you currently claim PIP ? You could look at this if not) 

I’d use the breathing space before you tell people to get your own head around it.  When my DH got diagnosed we kept it a secret for 8 weeks as DS was doing his GCSE’s.  It actually made it easier when we sat him down as we could answer his questions which we couldn’t have done at the start. 

I’m not qualified enough to be a 111 call handler and would probably find it quite stressful, I’m not great with computers either. I’ve learned how to use the basic system we use in outpatients because it’s really simple but the system on the ward is more complicated and I have terrible trouble remembering how to use it. I don’t claim PIP at the moment because I’ve never needed it but it’s something to look into in the future.

I was thinking today that I might not tell people yet apart from my boss,I need to tell her so she moves me off the ward but that would be confidential information so no one else should be told. I think waiting is a good idea 🙂

Onebrokelady

DawnW said:

I would honestly wait till you have all the information before you make any big decisions OBL. I had a situation some years ago when my GP rang me at home unexpectedly and told me I have leukaemia and that he was referring me urgently to the haematology department at the hospital. This was after a routine blood test for something else, and was a huge shock, the way he just came out with it on the phone, as both my Dad and a cousin had died of leukaemia during the previous few years. And yes, I googled the exact condition the GP guessed was most likely, and it wasn't reassuring, even the most reliable sources.

Anyway, I was duly referred, and I do indeed have some kind of chronic blood malignancy. I have no definitive diagnosis as the consultant didn't feel it necessary at that stage to conduct the painful and invasive bone marrow tests to get a definite diagnosis. She decided that watching and waiting would be best. About 8 years on, I obviously still have it. I have regular blood counts, and it is progressing slowly, but not to the point so far where I have needed any treatment. I get a bit tired sometimes and sometimes have days when I feel unwell - but not often, and these episodes might be due to something else entirely.

Initial test results without any / much context can seem a bit crude, and it is a huge shock to find out or be told in this way. Further investigation, and a proper conversation with a consultant may well prove much more nuanced and help you to make informed decisions for your future.

Thanks for this 🙂I sort of came to the same conclusion today. I’m definitely not going to rush into any decisions at the moment. I think was panicking but now I’ve had a bit of time to calm down I’m feeling like I can take my time and maybe wait a bit. Like you say context is everything so I need to know all the information before I say or do anything. I hope you remain well xx

Onebrokelady

satchmo1 said:

First: hugs, first and foremost!

Second: take time to let the prognosis sink in, and research what you can do to maintain maximum health. I took maybe 8 weeks before I told my adult sons about my blood condition. Then DS1 asked later if he could ask more questions, we had a few tears but he felt reassured somewhat.

Third: my DH has bronchiectasis, diagnosed in early 20s by a heartless consultant who told him he'd likely not see 50! DH is 70 and hasn't been hospitalised since having pneumonia twice as a child. He exercises his lungs daily using a "breather" gadget which is quite cheap from eBey or the big river shop. He also does Pilates and weight lifts 3x a week.

Fourth: hugs

Thank you for the hugs and the info it’s very reassuring. The more research I do the better I feel. I have been looking at the devices online but not sure exactly what I need yet but I should be referred for pulmonary rehab so they will probably advise. I think I can also get advice about that from the respiratory nurses at my surgery. 

Honestly some of these consultants need lessons in how to talk to patients. One of the stories I read where some one was diagnosed with pulmonary fibrosis was awful, he saw the consultant who basically diagnosed him then said you have three to five year to live so I suggest you go home and get your affairs in order 😡😳  that couple went and saw another consultant for a second opinion and although the diagnosis was the same he was a lot more positive about the man’s chances and fourteen years later that man is still alive and not doing too badly at all. I have had conflicting info as well because the  GP I saw two weeks ago wrote that I have focal bronchiectasis but the radiologist who wrote the report on the CT scan says traction Bronchiectasis which is a completely different thing. 

I am planning on working on my fitness anyway this year because of the PMR so I just need to crack on with my plans now. I was walking a lot until I got the chest infection and haven’t been able to do that for the last two weeks but I feel like I can get back on that now the acute infection has gone and I actually feel human again. I’ve noticed things do make me out of breath but I’m a fast person so everything is done a warp speed so I’m thinking if I can maintain that I’m not doing too badly 😀

Onebrokelady

Hi everyone and can I just say how heartwarming it’s been reading all your replies and thank you so much for your support, it means so much more than you know ❤️ 

I’m feeling a lot calmer today and managed to sleep last night without lots of thoughts going round in my head. I woke up this morning feeling the most human I’ve felt for the last couple of weeks so I think my body has recovered from the infection now. I’m back at work tomorrow so that will hopefully go ok, it will be the first full shift I’ve done for six months so I expect I will be worn out but I have two days off after so can recover then.

Today I popped over to DD2s for kitten cuddles which was lovely. She is so tiny but very feisty 😀 and also very confident. We also went for a little walk to the coffee shop DD wanted to show me and it’s a lovely little place, I had my usual caramel latte with a slice of the most gorgeous chocolate cake 😍😍

I came home mid afternoon and did some housey bits and a load of washing then this evening I’ve just chilled out on the settee with the cat and my iPad 

The positives for the day are of course kitten cuddles and lovely  online friends xxx

enthusiasticsaver

Sorry about the diagnosis OBL and I cannot believe that you had to learn about it through the app without the doctor explaining it to you. You sound upbeat and good you have found a support group  and hopefully can get support IRL as well through family, friends and work. Early retirement may be a good idea if you are constantly exposed to viruses  in your work. 

Cherryfudge

Well done on all the positives. It goes to show that those nice things go on happening and you can influence that. Caramel latte, chocolate cake and a new kitten sound like a really good combination!

Willowtree222

Glad you got some rest. It's an amxious time and that will impact your health as well..hopefully you get some answers soon.

Applying for PIP isn't easy, but even the lower rate is £290 every four weeks, which will contribute to at least buying anything you could need to help you. 

Take care. 

peb

I know you have put off applying for PIP but I really do think it's time.  It'll really help on consideration for retirement and planning.

Hugs

Baldybear

Delurking to say hugs and hope you manage to see a specialist soon.

Following on from satchmo and exercising lungs my dd has to do this although different diagnosis, she was born with cdh and also has scoliosis, she has to exercise her lungs daily.  Easiest we were given is bubble pep which is basically getting a milk bottle and some tube and blowing bubbles into water, the difference in pressure of the water makes your lungs work harder, its so simple but seems effective x

foxgloves

Oh my goodness, @Onebrokelady - What a thing to have to get your head around. I think for now, the most important things are keeping yourself as well as possible, taking care of number one & doing everything in your power to see that specialist as soon as possible. 
Sending love & as many positive vibes as I can fit in this little message,
F xx