I can never forget that day in 2007 when I was diagnosed with a rare, aggressive, incurable cancer. Having been healthy for fifty one years and never even been an inpatient at hospital, to be told that I may not live for another six months was truly shocking! The one positive factor at that meeting was the fact that my wife Sue was with me, although purely by chance, so she was there to support me and help me digest our devastating news. Since that day the focus has been on me, by the hospital and clinical staff, and despite overwhelming odds I am still here today. My journey has been, and continues to be complex, with complications coming frequently. I receive almost non stop care from people and I am treated like a ‘delicate flower,’ which is such a contrast to how I led my life previously!
Cancer has not only changed my life, but that of my wife too, as almost overnight she became my carer. I often say to her that I am glad that it happened to me and not her, as I would have struggled to watch on helplessly as she was treated. In many respects I was lucky as the medical wheels clicked into action very quickly for me, but as I was being moved around from department to department in the hospital, Sue had to start picking up the pieces of our lives, as the world doesn’t stop turning when you get cancer. The bills continue coming and the children still need feeding, plus our friends wanted to know what was happening, and Sue was frequently backwards and forwards to the hospital.
I had 24/7 care but my wife and sons were dealing with things as best they could. Physically life was tough, but emotionally for Sue, I can’t begin to imagine what she was going through, seeing me get weaker by the day. It was several months before I was allowed home after my stem-cell transplant, but I was too weak to even climb the stairs and shower on my own. I got sick again quickly and I needed outpatient care at the hospital so my wife had to drive me and wait most of the day. To this day I have been in and out of hospital constantly, and been close to death on a couple of occasions. It has been an extremely bumpy road for us both, and not how we imagined spending our retirement! Our plans were for me to retire at fifty five and we would spend our time travelling around the world, which was a great love of ours. But my illness and inability to work again has certainly changed our goals.
Since the emotional impact of my illness I have chosen to help others like me and spend most of my spare time, either working online or doing speaking engagements. Despite worrying that this might be too demanding for me, my wife gives me her unwavering support. Although I am unable to do much of what I used to do before I got sick, we try and compromise so that we can do things I know Sue enjoys too. It is very difficult because I have constant fatigue, which Sue understands, so we do our best to work together with the situation.
I really do appreciate how lucky I am to have a loving and supportive wife, without whom I would not have made it this far. How people manage without a ‘carer’ I just don’t know! Although Sue doesn’t like to be called that, it is the role she fulfils, and I know many carers who are the same. The role of the carer within cancer, just cannot be understated, and many may not even recognise themselves as that. Since my illness I have days where I feel extremely selfish, thinking how much my wife has given up to ensure that I can lead a reasonable quality of life. I feel guilty that I haven’t been able to provide for her like I could previously, and can’t do much of what I could before.
After 2007 we have seen my youngest son get married and we enjoy two grandchildren, things we thought we would never see as a couple, so we are truly grateful for everyday we have. Our life is very different now, but it has taught us the real value of things. When cancer strikes, most of the time the emphasis is on the patient, and rightly so, but as it becomes more common we need to better understand the vital role of the carer and look at how we can support them too.
Do you have someone who cares for you? Do they consider themselves a carer? Are you on your own, and how do you cope? As always it would be great to hear your views. below.
Brilliant blog Chris. I am delighted you feel able and ready to share this post. Mr H is my husband first and carer second but I too would never cope at home without him. It just doesn’t bear thinking about. I consider myself so lucky as you do to have someone so special they willingly compromise their own dreams and aspirations to be by my side. But the impact on him is huge and I don’t think many realise that. Love to you and Mrs L. Xxx
Thx Dawn, it is something I have been thinking of recently particularly as my work increases. None of this would be possible with out Mrs L behind me, sorting out the bits at home and making sure I take my meds. She has had to sacrifice a lot, as you guys know only too well. I think it is important to explain the vital part our loved ones play in our survival, and putting up with our ‘down days’ that others don’t see. My best as always to you both! xxx
Well said Chris – being a carer is so very tough but so key
Thx Ken, yes it is very tough, and I thought it was time to highlight that. Naturally it applies across all long term conditions, as we see the increase of dementia issues too. I can’t imagine what it is like to try and cope alone.
Another great blog Chris. Its a subject that comes up again and again – that family members who become carers are not given the support they need. I know through my own circumstances we got no support when I was diagnosed; didn’t even know we were entitled to any. T, my husband, has his own long term health problems that have been made worse because he has had to look after me for the past 5+ years. It stretches many relationships to breaking point; thankfully with us we’ve managed to weather the storm but its been hard. Our partners often don;t get the recognition they deserve for everything they do for us but they know we couldn;t have got through things without them. xx
Thx so much Kaz. It is indeed a very common subject and I don’t know how I would have got through if it wasn’t for my wife. You’re right, there is really very little help or advice for carers,particularly our loved ones who just naturally take up the role, and rarely see themselves as that. It is yet another area of cancer support that needs to be greatly improved!
My husband has Young Onset Parkinson’s and I’ve been his full time carer for the past few years as although he still has many years to go before retirement, he has been unable to work for some time. I was diagnosed with Cancer in May and it is so difficult being a carer with Cancer. I had to postpone my operation until our son was back from University so he could care for his dad whilst I was in hospital, and then look after both of us once I was home. It is so hard now he has returned to Uni and I’m trying to be the carer once more, but I’m still recovering myself and now have sharp pains in the operation area which require further investigation.
Hi Angela. So sorry to hear the difficulties that you and your family have encountered in recent years. It is certainly tough being a carer, without also having cancer yourself. Unfortunately it seems that issues like yours are becoming much more common, and I wrote the above piece to highlight the vital role that carers play in our life now. Many who don’t even realise they are fulfilling that role, and may not recognise that they also require some support. I do hope that your personal issues get resolved soon, and feel free to keep in contact. My best to you and your family, Chris
Great blog post Chris, your wife sounds like a wonderful woman x
Thx so much Charlotte. Mrs L certainly is an incredible lady, and gives me the strength to do the work I do. xx