PULMONARY FIBROSIS

HOME..........................................13/02/10!!!

Got home, at last, on Thursday 11th. Hooray! All setling well and social  team and McMillans marvellous. I can probably start to do some better reports soon.

...................................................25/01/10

The shortest of messages is all I could manage but I strive on. Now in a fantastic Hospice, St. Wilfreds at Chichester, and it is, not to knock the NHS, like the Hilton versus a B&B.So caring and 8 staff to 12 - it is totally modern and wonderful. They will assess me for 2/3 weeks but my legs just will not work so I hope the physio works but what a strain!

Could May, just for a time block off IPF messages to me please? Sheila gets overloaded. You, ZE and Stewart have my email address anyway.

Thanks for all the messages, love you all

Rich

23/12.........................Changes put right back due side effects

Happy  Christmas to you all.

17/12.........................Change of Date

Due to my total weakness - wimp - Dr Ram has put back next session to the 30th December. Partly because of Christmas too. He says one week makes no difference. Also he feels it is the Cisplatin which has just not suited me and he has changed this to Carboplatin. I still do bloods next Tuesday. I must say I am slightly relieved or is that slightly cowardly?

13/12.......................Quick update as following is very supportive - thanks all

For me the last week, the worst week they say, has not been good. I have been very tired and weak and no appetite so lost a deal of weight. Trouble is my body is trying to cope with the chemo whilst buggered by the IPF and breathing. Still that's it and I just have to fight it.

 

Good news, the last two days I think I feel stronger and a bit better in myself so perhaps my own cells are building back up and trying to get the body back to normal only ready for the next bash on 23rd. What ever you do, all of you, avoid chemo at all costs.

 

Today an adventure. The 'kids', Bips, Roger and Sue and Lisa are coming and we go to the pub for our Christmas Lunch.

09/12........................Quick Update

Dr Ram was extremely nice and very thorough. He reviewed my whole case, tested my chest which is infected a bit and then set up immediate bloods and an X-Ray to see how we are going in day 7. I was switched onto Clarithromycin as anti-biotic due chest.

Being Day 7, it was a bit of trek to Havant and, again, the weather was foul with rain all the way there and back. However, we immediately warmed to Dr Ram and are very glad we did it. Home, 6.30 pm, both very tired.

07/12.....................Quick Update

Going ok if feeling 50% of normal self really. Thursday and Friday were ok, just very tired, muzzy, lack of sleep and weak legged. Saturday saw me on the floor and was really rough but two morning naps got me back a bit and got through the day ok. Sunday felt that bit better and all the family came, Horsham and London, for a terrific Brunch Sheila did. I even ate some of it and enjoyed.

They are all so good but My little Elizabeth spent ten minutes cuddling me. She has an empathy for this I think and she is just lovely. Left in peace pm, we rested and it was a much better day.

The pills etc continue and I have to go onto a special anti-biotic tomorrow. Today, I feel a bit better again so fingers crossed for the week ahead.

One odd twist. For whatever reasons, Dr Baluch has stepped down from his role at the Spire and I have been handed over to Dr Ram who, from the nurses, is exceptionally skilled and very caring. I now have an appointment with him tomorrow afternoon. We did not need another trip to Havant just when things are supposed to be at their most risky but we do want to meet and discuss all issues with Dr Ram now.

The Spire Hospital, Havant  - The Chemotherapy in ”Pod 6”….02/12/09

What can I say. I’ll have to keep it short but I promised an update:-

The Spire Hospital and the Chemo. Process.

We set off from home at 7.30 am.

Unbelievable. The Oncology Unit is superb in every way. Part of it is the first private Radiology cancer centre outside of London and was officially opened on Tuesday 13 October 2009 by Sir Ranulph Fiennes. Ultra modern and beautifully run. We, me, Sheila and Vicky, were very nervous but were immediately greeted on arrival and made so much at home within minutes. We were shown to “pod 6” where I was to spend the next 6/7 hours and was set up with papers and my laptop.

All the Managers, Nurses and Assistants were just great. I only single out Rusty and Lou as they looked after me all day and did all of the various bag changes as they poured stuff into me with a drip. I have to say that this actual process did not affect me at all and the only thing I came away with was a feeling of total tiredness and muzzyness. Probably the long period of time more than anything else. (I should mention that I was told that I had to manage the wheeling of the drip trolley around with me and I did, early on, get into a right mess with wires etc. The trouble is that my bladder has always worked well, a good thing they say to get rid of all the chemicals etc., but , in the end, I needed  a wee every 20 minutes and it became a bit of a laugh to get there!).

Sheila and Vicky went out later to Gun Wharves at Portsmouth, and then Havant, and came back around 2.30 pm. They had the most atrocious, torrential, rain for much of the day. We finally left around 4.30 pm having arrived, inevitably early with us, at around 8.45 am.

Home about 5.30 pm and so relieved to be there and to the three boys (cats) who are beginning to look oddly at us.

Today, having slept fitfully, I feel ok if a bit bashed and muzzy. Loads of pills and anti-sickness to take but ok so far. However, I have been warned that the next week may see some problems as the chemos' clear and my own good cells try to come get back to normal  - they get killed too in the chemo. What a game!

Hope this is enough. I will update as it goes.

A Dally into the Silly..............28/11/09 - they will check my head next!

To lighten this a little. I seem to have pulled a muscle in the only good area of my lungs, high right. It is that as it is movement that hurts but I could do without it at this stage with Wednesday coming.

Lying in bed with a hot water bottle, how we revert to the old things, and thinking in the middle of the night, I thought of the last nearly three years and the troops I have had at my disposal in the battles. The following little story emerged which actually cheered me up as I have alluded to Wellington and Waterloo in previous reports.

Battle Phase 1

When I collapsed in April 2007 with IPF, my main attack troops were the Prednisolone Heavy Infantry They saved my life, undoubtedly, by resisting that initial attack, backed up by the Co Amoxiclav Cavalry and Clarithomycin Heavy Cavalry who roared around killing any infections that took advantage of the Preds lowering my immune system. In the background were the Medics and old General Alendronic Acid watching my bones did not become brittle whilst the Preds fought on. There were also the Sappers, Acetylcysteine to clear passages and trenches.

Very soon, they were reinforced by the Azathioprine Rangers who allowed us to reduce some of the Preds for a rest. These boys took over to control the Fibrostic terrorist attacks. To ensure discipline amongst the troops, the Omeprazole Red Caps did there work well making sure none of the boys started fighting internally.

These troops, effectively, kept me protected and, basically, stable until November 2009.

Battle Phase 2

A shock attack this November by the IPF allies, well mercenaries really, sounded the alarms and HQ had to readdress the situation and decide, very quickly, on some different troops to fight this new threat.

The Preds were allowed home for a rest after sterling work. The Aza’s too. The Cavalries stay on and the medics, Red Caps, the Sappers and old General Alendronic. Introduced were the Heavy Mechanised Dexamethasone Dragoons.These are the toughest of fighting troops to both do the IPF job and to shrink the new infiltrators.