Dear Friends,
It’s been seven weeks since that fateful Tuesday when my left leg began to swell… and I have to start by saying I couldn’t have survived this nightmare without the support of all your messages that kept bleeping through on my trusty I phone, my main companion through this ordeal…
To hear from you, from all over the world, those of you that I have met at concerts, was so reassuring and helped me remain positive during the difficult times of blood tests, x rays and scans.
I shall be writing to each and every one of you, now I am home.
As most of you know, from Mike’s updates, I was finally diagnosed with a DVT (a large abdominal clot) on October 20th, ten days after arriving home from Kilimanjaro. Having initially been discharged from my local hospital, I still felt dreadfully ill (my left leg was 3 inches bigger than my right leg and I could barely walk). I was also running high temperatures during the night and waking up saturated. Due to the diligence of Mike and my local GP, Dr Jessup, I was admitted to the Royal Liverpool Hospital on Ward X where I was placed in isolation for 3 weeks, without being able to see my boys L. The blood tests, x rays and CT scans began with a vengeance and as my Doctors explained, “I have been tipped upside down” to try and get to the bottom of my malaise!
Just as I was hoping to be discharged, my consultant (an Alarm fan who had seen Mike play at Glasgow Barrowlands) explained that I was still too poorly to go home. A clot had been found on my lung and I was now in possession of a DVT and a PE (Pulmonary Embolism) !
I finally hit rock bottom emotionally after feeling positive for so long. It was decided that I should have an IVC filter inserted to prevent the chance of any more clots hitting my lungs. When you are told you have a clot in your body, you feel mild panic, anxiety and begin analyzing every twinge in your body. I was relieved to have the procedure, very swiftly on Friday the 13th!!!! A needle is inserted in the neck and the filter ( a specially shaped mesh made of very thin wires) is placed in the inferior vena cava (large blood vessel in abdomen) via doppler ultrasound… The plan is to retrieve the filter, all being well in 12 weeks time.
The staff at the Royal Liverpool (from the cleaner, the caterer through to the Consultant) have been incredible to me and helped to make my 3week stay bearable. My treatment has been considered and efficient and I feel as if I have received the best care possible. I will be forever in their debt.
My doctors are still baffled about the severity and cause of my infection (on top of my DVT and PE). They have sat me down to explain how ill I have actually been and that I must take convalescence slowly. By their calculations, I will be raring to go for the Gathering!
There are still no absolute answers to explain my DVT/PE. They do acknowledge though, that I was just ‘unlucky’. It is possible that maybe I had a bacterial infection to begin with… then a long haul plane flight, altitude, long jeep journey, another long plane flight, a long day at the computer catching up at MPO…. all conspiring towards a blood clot. A DVT rarely happens in someone young (ish!) and healthy unless there is another underlying problem.
Upon my return from Kilimanjaro, I trained hard and even managed 3 step classes, as I was keen to maintain my ‘Kili’ level of fitness. ( Did I mention that I can officially call it Kili bye the way, now that I officially summited!! ;). I do remember feeling very tired though, upon my return to Wales and the night sweats were formidable! It wasn’t until my leg began to swell (10 days after getting off the plane) that I realized problems were brewing…
I have been extremely lucky to survive all of this. PE’s can be fatal. Luckily my fitness has helped me recover well. As I write, my CRP (inflammatory marker, is less than 5 – hurrah!!) It was originally 500! Nobody more than me, understands the importance of enjoying good health and in a way, I think I always felt untouchable. Mike and I train hard, watch our diet and are committed to maintaining long-term good health. After being Mike’s carer, through all our cancer battles, I never expected to find myself in the role of patient. It’s all very surreal.
Mike, in the role of carer, has been incredible. He has taken on the role of Mr Mom and excelled in every area, as well as watching over
www.thealarm.com <http://www.thealarm.com> and comforting me in times of trouble. Driving backwards and forwards to Liverpool, he has been reliving his early Punk days and trips to Erics, digging out song-lists to entertain him on the long drives. Dylan and Evan have enjoyed the perks of being looked after and dare I say, spoiled (!) by Daddy! As rock and roll boys, they are used to one parent looking after them and are quite accepting that the Doctor has been fixing Mummy’s leg J
Many people have said to me “Why you, after everything?” but Mike and I can’t look at life like that. Cancer, infertility have shaped who we are as a couple. This new experience has changed us forever more. I like to think that we’ve been lucky enough to experience huge highs and with that, inevitably, come the lows. Life is rarely ‘pole pole’ (‘slowly slowly’) in Peters’ World.
For the next few months though, ‘pole pole’ is my mantra. The last seven weeks has been like climbing Kilimanjaro, all over again. Taking each day at a time, not looking back and most importantly, living in the moment.
I have no regrets. (I can now look at the Kili photos with great affection). I’m proud of what we have achieved with Love Hope Strength and the help of Alarm fans from all over the world.
I feel so lucky to have received so many wonderful messages and cards from you all. Lying in my hospital bed, trying to stay strong, I felt so blessed to be so loved. I hope that doesn’t sound too fluffy (or ‘oversharing’ as I believe the new phrase to be bandied around) but it’s how I feel. To come through the other side is a huge emotional journey so thank you, Alarm family, for holding my hand.
This last week, I experienced a small setback and have been in hospital every day trying to get my INR (Warfarin) level back in range of between 2 and 3. It seems as though I have had another small clot on my lung which caused me to collapse last Thursday, luckily outside the DVT clinic in Ysbyty Glan Clwyd!!
My Consultant and Haemotologist , Dr David Gozzard is also the same man who steered Mike and I through both cancer diagnoses. Suffice to say, Dr Gozzard is our guardian angel and I feel in safe hands.
I’m bursting with excitement at finally being home with my 3 boys and family and friends. Life feels good! What doesn’t ‘kili’ you only makes you stronger!!!! I’ll be taking small steps around the village and look forward to be fighting fit to greet you all to the Gathering in our home town!!!
Fight back!
Love hope and strength,
Jules xxxxxxxxxxxx
