Geoff Gardner, leader of the Windsor Pulmonary Fibrosis Support Group, has been documenting his life with IPF since 2018...
Well I am new to this disease
Looking ahead, trying to breathe
Going upstairs, tying my shoe laces
It is a chore, going places
This illness, is not giving us much time
My wife & I are doing just fine
Finding a cure is just hopeless
Its called Idiopathic pulmonary Fibrosis
All IPF sufferers let us just stay positive
Life is for living its our prerogative
I am still working as we must live
As the bloody insurance will not give
So no wagging tongues
I am now on oxygen to help my lungs
I must lose weight & a government grant
So I could get a lung transplant
Now that I have been given 12 months to live
I love my wife, I must stay brave
My kids are great and I am slowly getting worse
This disease is something of a curse
Nine tablets a day, is a constant battle
If I take anymore, I`ll sound like a rattle
Oxygen is being used more often
Again I am not going in that coffin
All of us with this disease, it is wrong!
For our families we all must stay strong
To Friends and Family don`t be so sad
This disease even took my Dad
They say it maybe hereditary
That is transmitted genetically
When we were told Angela was horrified
You know she read verse 2 and cried
We both went home from the Royal Brompton London
To get our heads around this conundrum
I have now decided to accept it is what it is
2 weeks my daughter is getting married, we`ll open the Fizz
Sunday 21st is the day she is going to be a bride
Angela & I will be bursting with so much pride
I have just put the final touches to my speech
To all in the room I`ll hope it will reach
For this weekend I will forget
The problems I have with this oxygen debt
Friends here and abroad especially in Germany
Send their good wishes which touch me personally
After the wedding I am off for a week
To enjoy my wife & family with this great lump of antique
Alot has happened since verse four
Daughters wedding I could not ignore
Never guess but we were all busy
And got a gift to Paris Disney
My family came Grand daughters included
What a great time don`t be deluded
Because of my illness I was given a card
Bypassing the que`s Disney has a heart
I could take 4 persons with me going on the rides twice
God it was great but I paid the price
Now we are back to reality
Insurance people are paying they have humanity
Seems to me my breathing getting worse
I`m still going to work to fill my purse
Some people ask the question WHY ?
I`ve still got bills to pay is my reply
Laying about just watching day time tv
I wouldn`t want that, you`ve got to believe me
I wonder now what my future will hold
Christmas is coming it is going to get cold
So all of us must wear the right clothes
No infections, no coughs, for our chest to impose
Look forward to this year’s festive season
The goal is next year`s too I won`t be beaten
Windsor group meeting the people are great
Talking about breathing to make our lungs oxygenate
Once a month we all meet
New faces welcome we`re not discreet
I must say that we are all a good team
Helping each other to get oxygen into the bloodstream
I read my poem to our people there
I hope they didn`t think I was being debonair
To be honest everyone with this disease
Different, funny, intelligent, friendly I hope everyone agrees
So for the New Year we all make a bucket list
10 things you want to do and don`t resist
Make it your goal they must be done
And don`t forget look after number one
Christmas is over and we`re in 2019
I must lose weight and get into a routine
Pirfenidone is working disease, is not so rapid
I have got to keep taking oxygen and get into the habit
12 months in July, life expectancy I was given
I will make it longer that is my mission
IPF sufferers are all doing their best
I read my future on support group, which puts us to the test
Things that may happen and what to expect
Not forgetting family as it is them we affect
You people around the globe who have this too
Lets hope the doctors come up with a break through
We will keep on fighting no matter what it takes
We will all meet up later on, in time ,in a great place
Well its been ages ,so much has happened
I lost my job it made me a little saddened
Now I have time which is not so bad
Being positive moved on to doing pulmonary rehab
Also joined Slimming world which is great
It has took me 6 weeks to lose a stone in weight
My wife and I decided to buy a dog too
His name is Vinny he is a Cockerpoo
I take him for walks, to keep me fit
Now after the rehab it is easy I must admit
I went on holiday 7 days in Corfu with the Wife
Oxygen included this is my quality of life
I must let you know I feel absolutely fine
This disease will not make me resign
Well done another holiday in June to Italy
It was not the usual we did it differently
Two days in Switzerland with a great friend
With Adina we wished it wouldn’t end
I took the car so Angela could see
The beauty of the scenery
French Alps, Swiss Alps, Italian Alps Angela was glued
Her Camera never stopped for memories we have just viewed
Lake Garda was the sensational destination
Week one to meet up with Ralf & Anja on vacation
Bad Kissingen great friends we have known for so long
A friendship that is ever so strong
Second week was with Kenny & Nicky
Wheelchair included I ain`t taking the mickey
We had a day on the train and went to Venice
It was a gorgeous place I don`t want to make you jealous
I said it before I`ll say it again,
I`m getting worse slowly but I don`t want it to win
I`m still losing weight now one & half stone
Even after holidays shout it out on a megaphone
Well keep it up, be positive in mind & body included
Lets beat this disease this verse is concluded
I forgot to say, I have gone passed my sell by date
They give me 12 months July 2018 and I feel great
Like I said, try to be positive, as I know sometimes how you feel
Don`t get frustrated, bad tempered, family need a good deal
My wife is kind and looks at me with a loving glaze in her eye
She wants me to live as long as I can, for her this disease I will defy
It is strange the way things developed or turned out
As once I was fit, played football a good standard no doubt
I trust my consultants especially London Royal Brompton
Next appointment hopefully on lung transplant list no option
Well here I am another Christmas 2019 I have made
My funeral I must have it delayed
Really no I don`t want to boast
You know now this poem is written by a ghost
Angela & I took Mum to Isle of Arran for the New Year
It was great breathing the clean Scottish air
I was running out of oxygen which I could not believe
Thanks to Dolby doing a delivery on New Years Eve
It is now February and I have seen the Consultant
With news that gives me hope, not making me redundant
I go the next stage to Harefield for an inspection
They checked my blood, new lungs will have no rejection
The next step they check my other parts to see they are fit
To go on the donor list which is frightening I must admit
They say verse 13 is or could be bad luck
Well its true Angela and I feel we have been hit by a truck
Bad news again Angela has stage 3 cancer in her breast
What wonderful things God puts us to the test
Angela has to do six months of chemotherapy
Its better this than having a mastectomy
I hope and I prey that she will be alright
Our love for each other I know is watertight
February 2020 was the last time I wrote
Nothing from Harefield I must quote
We are both self isolating as we are category high
I hope I make two years come this July
I assume corona virus has got in the way
To put other diseases on hold given us a delay
One thing for sure that I must stress
We in England are proud of our NHS
Well we are still shielding as rules we must accept
Social distancing at 2mtrs must be kept
Its a shame some people don`t listen, they do what they want
Visiting Bournemouth beach , 2nd wave is coming to haunt
Well four more days and I will have made two years
I should celebrate with a few beers
I will wait till Angela has got the all clear
She is having the treatment so it does not re-appear
I am still waiting for the next stage
When it comes, I hope they don`t consider my age
Time is short, good and we all should enjoy our existence
But let us not forget to keep social distance
They are relaxing rules on covid, really, this is not for us
Where a mask when travelling, like on the bus
Angela and I are still being careful, you people know why?
Government need to listen or maybe they need to give it a try
We are restricted in what we do or where we go
I have a short life, my life is such a bore
I am trying hard to enjoy what we have I`m sorry for being verbal
It gets tedious, one after the other jumping the life hurdle
Letter came from Harefield ,it was not good news
They want my BMI down, more weight I must lose
So they won`t put me on the transplant list
To exercise I wonder do they know my lungs resist
Don`t get me wrong I will be okay,
Negative will only be in this verse, that`s the way it will stay
Like I said we are getting the Covid second wave
You people not doing the rules must behave
Look at some world leaders exploiting the rules
Showing no consideration, just like the other fools
It is a worry for people like us and others high category
Shielding we must do,this is mandatory
Bad enough us trying to breathe, without a mask
We need to wear one, those who don`t, I would ask
You’re not being cruel, cheeky or rude
It’s them that should be wearing one, without an attitude
People who have caught the Covid, experience a respiratory problem
Take a leaf out of our book, take a look at our forum
On a good note I purchased a Motorhome to take us away
Because every day feels like groundhog day
I have not been writing this poem for a while
It is now January 2021 Christmas was not our style
We did our best to isolate because of covid
The family were angry and nearly exploded
I think its wrong that we can`t see our family
They realise we could be a casualty
I my breathing is getting worse a little by the day
Oxygen is more frequent and that is to stay
Good news my eldest son & his partner had a baby
Four granddaughters now next one a boy maybe
We are told it could be middle February for the vaccine
So we hope we could come out of this quarantine
I know to be honest it does get us down
My life made short and covid 19 in town
We need to be positive and after celebrate
Births ,deaths, marriages there is a lot commemorate
When things get better we intend to travel a lot
Maybe abroad South of France where it is hot
I hope this time there is no-one I`ve upset
As my wife and I drive into the sunset
February we have had our covid first jab
May the second is the final stab
We hope we`re inoculated to stop this disease
Some people won`t what are they trying to achieve
Its amazing what your mind thinks around in your head
Trying not to go to the bit when I`m dead
My life has spent a waste of a year with this covid
I want to enjoy the last what is left with my devoted
I`m getting worse they did a CT scan on my chest
Fibrosis in my lungs its growing and progressed
I need more oxygen so I can breathe better
Believe me every week 10 bottles altogether
Now I have an oxygen concentrator machine
So I have to change to a different routine
more weight I must lose to get on the transplant list
Its slow to come off I wish it would shift
One last Item I am part of support group Windsor
Doing a web site I`m just a beginner
I`ll get it right with my colleagues Liz & Rob
I will make sure it will be a fantastic finished job
Sorry to say, we sold the Motorhome in August
Best to have a caravan to be perfectly honest
I’m on constant oxygen every day and night now
So everything is hard work your wondering how
You run a marathon or run fast 100 metres
Gasping for air, stopping every 10mins for breathers
It is like that all the time with no oxygen to take
So doing the littlest job, makes your chest ache
Change of story we are looking to get the covid booster
Hopefully in October, Angela included I won’t lose her
She came off chemotherapy in June twenty one
last of life’s hurdles I hope is now done
My weight is still coming down slowly
I’ll have to stay on a diet of ravioli
I tolerate keep going with this diet I must persist
So I can get on that lung transplant list
I was at Windsor and met our Air Team
It is Fibrosis awareness month I hold them in high esteem
If you need support, or information on living with pulmonary fibrosis please get in touch. Together we are stronger.