Idiopathic Pulmonary Fibrosis Poem | by Geoff Gardner

All of us with this disease, it is wrong! For our families we all must stay strong on a purple background
September 2021

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.