When I first found out about the diagnosis of IPF and what it meant, I was in total denial… apart from being breathless I was fine, looked fine and felt fine…so I presumed they had got it all wrong.

However, the truth eventually dawned on me and now I have come to accept it as just a diversion down lifes path, which will bring me to where we are all headed anyway?

After a third meeting with my consultant, I really appreciated her down to earth approach and the fact that she pulled no punches and laid out the bare facts, which are needed at times like these as plans have to be made and people informed…

Hi Romfty,

I’m really sorry to hear about your diagnosis - what a shock when you felt so well.

You sound as though you have got your head around the news now - I’m glad that you’ve managed to find some degree of acceptance. Having a consultant you feel happy with is also a big bonus.

How are you coping day to day? Are you still feeling well overall?

Hi Ms P…feeling okay, in fact I think it is the family who need more support than the actual patient, because we soon come to terms with what is happening and have folk to turn to for medication and advice, whereas the family are out on a limb.?

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Hi Romfty,

Good, good, glad that you are feeling ok. (And I see that I’ve gained a new nickname?!)

You’re quite right that it can be really hard on families, too - do you think that yours aren’t getting the support they need?

Hi Priscilla, not not at all, in fact I have my first meeting with a Sue Ryder nurse on Tuesday and hopefully will be able to arrange a meeting for my family as well, as sometimes they have to manage and carry the hardest burden of all.

It’s good to hear that you have the support of a Sue Ryder nurse. Yes, Sue Ryder does also have family support teams, so do ask your nurse about this when you meet him/her.

Dear Romfty

I just wanted to say hello and hope your meeting with your Sue Ryder nurse went well and with the family too. I have terminal cancer and have my own palliative care Sue Ryder and she has been my life saver in so many ways. I hope you have a good Xmas and safe New Year. Cookie17

I am guite confused I have been told that if there is anything I wanted to do, do it know as After this treatment I have no further treatment to offer you that was 9 months ago
However I get check ups every 4 weeks due to my medication and they seam yo infer there might be further treatment available ad it changes all the time ?

Confused or shay ?

Hi Alex,

Sorry to hear you are confused about what treatment is available, it sounds as though that has left you with quite a bit of uncertainty.

Have you asked your health professional to clarify at all? It might be a good idea to do this at your next check-up, as they know your individual medical situation the best.

It might also be helpful to give the Prostate Cancer UK nurses a ring on their helpline: 0800 074 8383 - they can give you lots of expert information about treatments.

I’m glad that you’ve found our site, as many people find it helpful to have a place to talk about their experiences. Hopefully some of our members will get back to you soon. Although Romfty and Cookie who have posted in this conversation don’t have the same condition as you, they do understand what it is like to live with a serious illness.

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