Pneumonia (Part 10)

| 13 Comments

After my first bit of chemotherapy I developed a minor infection. Now I was about to experience just how ill someone with a very limited immune system can get.

Thankfully my second lot of chemotherapy went really well. The nurses gave me the same combination of anti-sickness and anti-inflammatory drugs that worked for me on the last day of my previous treatment. I wasn't sick once and was able to function as a normal human being throughout.

Then when my counts came crashing down I remained fine for well over a week. Things were going so well that boredom became the biggest battle. I would watch DVDs kindly donated by friends, and television in the day ward, but there are a lot of hours to kill in a day.

For most people, including myself, reading would be one of the few joys of having so much free time. Another cruel side-effect of the chemotherapy is that it can affect concentration. I found this made reading a really unpleasant experience.

I was so bored that I was almost excited when I got my first temperature. It was only very mild to begin with and, to be honest, the first two days were pretty good, I felt fine but just needed to sleep more.

However, things rapidly deteriorated. I was having horrific night sweats which were so bad my bed needed changing three times on some occasions. My fevers raged for hours with my body temperature just short of 40C (104F) - if it's any help the nurses' charts only run up to 40C.

During these times I can remember attempting to speak and just burbling gibberish. I had to wear a Darth Vadar-like mask to help get the required level of oxygen into my system and calm a violent cough.

I can hardly remember the five days that passed after that night. People came to take my blood and check up on me but they were just brief blurs, lost in hours of perpetual fevers and sleep.

Throughout this difficult period the doctors and nurses were wonderful to me. I remember waking up some times and one of the nurses would be stroking my arm or just really keen to see how I was feeling. It was incredibly uplifting being supported in this way.

Anti-biotics were tried but generated little response. The doctors then switched to anti-fungal medication which slowly began to make a difference. I can remember one of the doctors explaining how strong these tablets are.

He said: "In a minority of patients this drug can cause temporary blindness.

"If this does happen, don't panic, it's completely transient and will only last for a couple of minutes."

Thankfully my eyesight remained throughout.

We never really got to the bottom of what actually caused my pneumonia. It was explained to me that the lungs are dirty places and all of us breathe in fungal spores that surround us in the air. A normal immune system should be able to fight it off.

Then I went home again to recover further, devour shameful amounts of food, and prepare for my third cycle. Unfortunately, things didn't quite work out as expected.

13 Comments

Hey Sudders - more great blogs mate. You've been keeping us up to date I know, but reading about it on here really makes us all understand how amazing you're being. Keep it up!

Campers x

Hi Adrian,

I hope all is well with you. My husband Phil is one of the others diagnosed with AML and showing the CML Philadelphia gene BCR abl. He was diagnosed in August 06 after six months of hip pain. They also picked up that he had lumps on his head, two of which they thought were lumpy Luekaemia! Six weeks to live!! He started with Intrathecal chemo to cover the lumps in his head then had FLAG IDA then home for a week then FLAG for another week. He was in full remission at this time. They let him home to put on some weight as he lost two stone initially and he put it all back on by Christmas, meanwhile they were looking for a Bone Marrow Donor! They found one 20 years old male perfect match. and planned for a transplant on 19th January 2007. It went ahead at the Marsden in Surrey and he came home in late February. He has recently had a few set backs but the Luekeamia is not showing in his second bone marrow aspirate nor is the CML or lumpy. In fact the lumps went and the pain in his hip disappeared about 48 hours into the fisrt FLAG IDA course! So don't get to concerned about the CML apparently the tests have only just become so sofisticated that they now often show CML but it does dissappear with the AML or so it seems. Phil has none showing at this time and all is OK. Please contact me if you want to chat you are not quite alone with your diagnosis!

PS. Phil is 58 hence the BMT they were not convinced, because of the unusual diagnosis, that it would not come back and he would be too old for further treatment

Trish Owens

Hi Trish,

Thanks very much for posting that comment. It does help when you know other people have been through the same thing. How long did it take Phil to get over the BMT?

Best wishes to you both,

Adrian

Our Specialist nurse now tells us that whereas you already had CML Phil was only showing the gene for it so not exactly the same! Phil was a bit disapointed when she told us he thought he had a leukaemia buddy! It would appear that no two cases are the same. However, Phil survived the BMT well, with 10 days of Mucositis which wasn't pleasant but not life threatening. He has had a problem with Gall stones since release from the Marsden which I think was down to the diet of cream and cakes and fattening foods which I fed him in order to put his weight back on between Chemo and transplant (which we did acheive)He has been very fatigued since the transplant but that is an accepted symptom. He has had a bit of GVHD of the gut over the last three weeks but they have that in hand now and they are starting to reduce the steroids which definately helped his recovery. Tomorrow is day 100 and we are hoping this will be the turning point at which the energy comes back somewhat! Whatever, he is still with us and looking forward to facing the world very soon. Are you planned for a transplant? If so we wish you a good donor and would hope you have the amazing care that we have had between The Royal Marsden in Surrey and our own Local hospital in Torbay.

Our best wishes to you and we know you will do this with ease

Regards

Phil and Trish Owens

Dear Adrian,

I hope you are feeling well. I just stumbled upon your blog and have spent the last half hour here at work reading it - I certainly wouldn't put it in the "bloody boring" category.

I was wondering how you might feel about me doing a story about you and your blog for Press Gazette? It's great that you've not let your illness stop you from writing and I think your story would make a connection with a lot of people in journalism.

If you're interested you can contact me on 02075492574 or 07904587050, or I'm on psmith@pressgazette.co.uk.

Regards,

Patrick

Hi shades!

Loved the Oxford road trip and party extravaganza with Rob and of course my four poster experience!

Hope you are having an amazing time with Pops touring before the big BMT day which is soon.

I am so impressed with the new posts! I am going to send you some more CDs soon to download onto the ipod before you are admitted again - that boredom is a killer.

It is really good to hear Trish and Phil's comments above about someone who is just a few months ahead of you and doing so well, in similar if not exactly the same circumstances. So chin up (unless like me you have recently fallen on your face drunk resulting in a striking scar across the chin area which should be concealed and not displayed)!

Roll on rafting in 2 weeks for the Anthony Nolan trust, and the wedding pops (get on your dancing shoes)!

lots of love

Hanx

Hi Adrian,

Know we've only met briefly, but just wanted to say I think you're doing a cracking job with these blogs. It almost makes doing all the internet stuff worthwhile...almost. The sooner you're back in my chair the better (and not just so there's someone else to share all the flak I get about the website).

Mind you, waking up to being stroked by nurses - it's clearly not all bad.

Take care,

Sam

Hey AD,

Good to hear you are at least getting tons of food and I'm glad that your spirits are still high. Keep up the blog mate, following it avidly here. Wishing you all the best,

Finlay

Have just bought the Times and saw the piece on you !

My daughter had a rare form of the two types of leukaemia (Philadelphia chromosome) diagnosed six years ago when she was 11 years old necessitating a harsh regime of chemo followed by a bone marrow transplant all within 6 months of diagnosis.She is now 17.

I won't pretend it has been easy but she is now doing her 'A' levels and wants to be a doctor!

So all I can offer you is masses of good luck and the advice to keep eating (which you won't feel like) drink masses of water (flushes out toxins) and most importantly keep laughing !

Will keep an eye on your fantastic blog.

All good luck and best wishes.

Nicky

Hi Adrian

You are truly an inspiration!! I heard about you on Calendar and have just read your blog. I shall continue to keep up with your progress and want to wish you and your family and girlfriend Poppy all my best wishes. Stay strong. My prayers are with you all. x

Susie

Adrian,
Seeing your your blog has really helped me and I have been in remission now for almost 9 months.
I am now writing a booklet for teenage cancer and leukaemia patients. I was wondering if I could have your permission to use some of the photos from the blog (the hickman line photo in particular.) I would be grateful if you coul contact me soon asI have deadlines to meet.
All the best for the future
Kaz
xxx

Thank you for the website, although at first I didnt want to read it as I want nothing to do with others that have Leukeamia, but I can relate to all you have said. I dont have it but my 13 year old son was diagnosed with it in Nov 2007. It has been so undescribably hard and so emotional - oh dear now I cant stop the crying again. Dylan was also tired all the time and I took him to the Dr 3x - every time just a virus. Then I went again and made fuss and cried and insisted something was wrong. A blood test was taken and after 2 weeks in hospital they eventually found that it was ALL! How could that be - just 2 years ago my husband was diagnosed with Hogkins cancer, but at least after 6 months of chemo he had the all clear. I remember Dylan saying that night " mom I always thought I might get cancer cause daddy had it but I never thought it would be while i was a child." The side effects hit him badly, he vomited continuously, then had seizures from the chemo and was sent to Intensive care in St Georges, he got another infection and mucastitis - to swallow was too painful. Throughout Nov and Dec he couldnt eat so was on intravenous food, antibiotics and heavy morphine. I was up all day and all night by his side like a zombie. The wonderful part was the day before Xmas he was allowed to come home, and that was all he wished for. Since then he has had to have a gastrostomy so I can feed him during the night as he is very anorexic and has just come out of hospital from recovering from pneumonia. The hardest part for us to come to terms with is the fact that it is 3 years of this. Dylan is a very keen skater, surfer (we come from SA), and rugby player. He has been remarkably strong and often has to tell me not to worry so much it will all be fine he just has to have his chemo like Daddy did. Anyhow hope you dont mind me pouring my heart out I just wanted to let you know how I feel for you as I know what you are going through as I see it in Dylan every day. Probably also needed to get it off my chest as I dont talk about it much and to the outside world we are all coping and got to put on that positive face.
lots of love and strength, Tania

About this Entry

This page contains a single entry by Adrian Sudbury published on April 26, 2007 12:00 PM.

A blog for food lovers (Part 9) was the previous entry in this blog.

Transplant (Part 11) is the next entry in this blog.

Find recent content on the main index or look in the archives to find all content.