Well, it is nearly upon us again. I really don't know where the time goes. Christmas, the season of good will to all men! Plenty of good stuff happening. Presents, parties, eating and drinking, and generally having fun. Not forgetting of course that it is also a religious holiday. But one thing that is for certain is that cancer does not take any time off. Celebration time or not, it continues on it's destructive path.
As I have mentioned briefly, the festive season, is a particularly difficult time for most people affected by cancer.Maybe they have lost a loved one, just received some bad news, or possibly they are going through treatment. Quite difficult to celebrate, when things like that are
happening in your life.
I will be experiencing at first hand, the pressure that patients can feel over the festive season. The difficulty of doctors and staff being away, ensuring that you have enough medication to see you through the period. Worrying about what will happen if you do get sick, over this period. The hospital with far less staff than normal, if you do.
However, this time of the year is a particularly poignant time for me.
Six years ago, I was in an isolation unit, undergoing a stem- cell transplant.
The staff were unsure about starting it before Christmas, but I was in such poor condition that in the end there was no choice. My immune system was slowly poisoned over 10 days until it was like that of a new born child, then I was given my life saving transplant. A little bag of stem- cells from my anonymous donor was sent across London on a motorbike. All organised by the Anthony Nolan Charity.
The gift of life for Christmas, how meaningful is that? My goodness, how lucky am I? In honesty I am feeling quite emotional whilst writing this piece. Even with this transplant, no one was sure what extra life I would be given, if any. There was no guarantee that I would even survive the transplant. Yet here I am, 6 years later writing this.
I would like to share some of the more surreal moments of my festive season in 2007. Firstly, even though I was under heavy sedation, the Sister, (who was a very attractive young lady,) asked me what I wanted for Christmas. My quick reply, was her, in a tiny Santa outfit! ( Sorry ladies!) She played along and came in on Christmas day with her outfit on!
Secondly, at just past midnight on Christmas Eve, all the patients got a little present from the hospital. What a lovely thought! Finally, on Christmas day, my family and friends all came in to visit me. It certainly was a unique way of celebrating.
So now, I am like the Queen and have two birthdays, my official one and my new life one. So although my bodywork is 57, my system is only 6.
Christmas is a family time, and although we all lead such busy lives, it is an opportunity, for people to spend some quality time with each other. For me, it is always a period of reflection.
I have so much to be thankful for, and I can celebrate that, amongst loved ones and friends.
Since my illness I have had two grandchildren, and my boys are progressing in their lives. My spare time is taken up by doing lots of exciting things I never imagined I would be doing.
It has taken me a long time to realise, but we are not really in charge of our lives at all! Things happen frequently that change our lives but are totally out of our control. My choices are very restricted, but as I have mentioned in a previous post, things just happen! I could never have imagined seeing 6 Christmas’s after being diagnosed with a stage 4 incurable Lymphoma.
So, as the festive time is upon us, and I watch people celebrating, who knows what is really going on in their lives? Is it just an opportunity to escape from some of our everyday issues?
Let them enjoy themselves! In recent years, there have been more serious moments, and less, lighter ones. My baggage is staying outside this Christmas,and in the New Year I will collect it again. I can't forget who owns it, and I don’t think anyone else will want it, so I know it will be still there. But a few days with family and friends will make it feel lighter, when we are reacquainted.
Whilst we are all celebrating the best way we can, the good work continues. Some of my medical team will be working over the holiday, and will be there if they are needed.I would like to thank them and their families for the sacrifices that they continue to make on our behalf. Also my thoughts are always with my fellow patients who are going through treatment with me.
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This week has been mentally tough. I have had my routine treatment, although I was feeling pretty rough, because of my chest infection. However the positive side of that was I got examined again. A larger dose of antibiotics was prescribed, and things are improving.
As I had been feeling lethargic, it meant that I spent more time than usual on my computer. Looking into more detail of some of the things that were happening in the cancer world, and in particular, some of my friends who are currently going through treatment.Coming into the Christmas period whilst undergoing treatment is very tough. It is a particularly poignant time of year anyway, but when people are seeming so happy, it can be very difficult to feel the same way!
My own stem-cell transplant took place over the Christmas period, which is a time I can never forget, as it has totally changed my life. As I have said so many times, all cancer experiences are unique, but we can all learn something from each others. Every so often I get very moving comments left on the blog, in response to a particular post. Dee wrote the below comments, on my post about 'guilt.' I felt that I needed to share them with my readers. (Tu, Dee!)
"This has been a really bad week for me, in which loss of independence, frustration and guilt stand out like beacons. My form of non-Hodgkin lymphoma will always come back, and remission for me will only ever be in terms of periods between need for treatment. There goes the first guilt trip: "only ever". I'm alive, whilst some around me are dying. Some of those I nodded to only yesterday, are no longer with us. Yet I have the audacity to complain about 'my lot'. Well, yes, I do! I mourn for my old life, and I really mourn the loss of my independence.
I have just completed my sixth and final course of treatment: each one one day in hospital on an infusion, followed by 5 days of oral chemotherapy at home. Courses one through four have led to increasingly worsening side-effects. Fatigue, and utterly debilitating being the worst. The eagerly awaited holiday in the sun with my equally hard working partner, cancelled! Some of the gigs we have been dying to dance at, cancelled! Invitations to social events with family and close friends, cancelled! Because of me, or, as I keep being reminded, because of my illness. I am a blameless observer in my life, yet that is not how I see it. This is personal, and the life I had, the one I have worked hard for for 40 plus years to enjoy, has gone, and with it is going the life and dreams of some of those around me - the ones I care about, the ones I love.
Courses five and six have been horrible. In each I have caught some random bug during my chemo week, just as my whole immune system is being wiped out, and utter debilitation had swiftly followed. Needing people to look after me, unable to do house work, regularly unable to do my shopping, sometimes not even being able to get out of bed, get washed, get dressed, and worst, those really dreadful times, when I can't even walk unaided. This once formidable matriarch of long standing, this unflinching support network for close family and friends, this ruler of all I see, has become this simpering wreck of a woman, who's frail limbs, gaunt face and saggy bottom of a woman thirty years older than I, sits here instead, only now once again able to clear the drool from my colourless lips for myself.
This is my second hospital admission in four weeks, and I write now from my hospital bed, unable to sleep any more. My fever has broken, this infection is under control, and I will be going home in 6 hours time. My treatment complete, my cancer gone! But it isn't, it's only sleeping. As I lay here planning for the next phase of living with cancer, I am all too aware that 72 hours ago, I was stood in the corridor crying like a baby. I was unsure if it was safe to let go of the wall, I was struggling with visual disturbances, and I was so do weary and weak that I couldn't even work out what I was trying to do, although I did know it had something to do with the Doctor who still hadn't come after 3 hours, despite his assurance that he would 'be there in 5".
The nurses rushing past, no one to talk to, no one to help me, no one to hold my hand and tell me I was safe. Not on this frantically paced acute general oncology Ward where End of Life was going on around me. "The Doctors are busy with patients who are really sick". I am a patient, I am really sick! I voiced my concerns, but no one stopped. I had become invisible. The patient in such urgent need, yet no one could see me, I had become invisible, and I felt like a non-person, unwanted, afraid and alone. I was still alive, and once lucid again, I felt guilty that I had bothered the nurses than night, that I had demanded that someone met my needs, when some around me had lost their fight. Guilty as charged."
I was astounded at the emotions that were so powerfully described in these comments. A lot of what happened to Dee in this instance, I have experienced personally. The feeling of helplessness washes over you. I know there are so many patients going through such tricky times, both physically and emotionally. Christmas is a difficult time for us.Unfortunately our issues continue, so if someone you know is going through some tough stuff, hopefully this piece might help you understand if they are not always full of festive joy.
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