As many of you may know, this week I finished three years of fortnightly sessions to have my blood treated. This involved being plugged into a machine for up to four hours on two consecutive days. It was very time consuming and tiring but like everything else that has happened since my diagnosis you have to readjust and deal with it. When I started, no one was really sure if the treatment would even work, and if it did, how long it would take, and there is also a combination of medication that I have to take with it, so things are quite complex. I find a lot of this quite ironic really because when I was diagnosed, it was suspected that my cancer may kill me. I was offered a stem cell transplant as the only possible escape route from that fate, which has worked brilliantly and kept me in remission so far. But I have spent the last seven years having treatment for the side effects of the transplant!
The side effects have been many, and varied and the treatment also, each bringing fresh and very different challenges. So having now settled into what had become a long term routine, it is time to stop that and find another one. I will now have a lot more free time, which I’m sure will be filled with something, but at this stage I don’t know what, and that is a great feeling. When I look back at my old diary, hospital appointments dominated the pages, and I had to squeeze in what else I could manage. Now apart from a few appointments I have made previously, I have plenty of free time.
But it’s not time to crack open the champagne really. Since I was diagnosed back in 2007 I have had pretty much continuous treatment, and rarely have a few months without something being required. So although I look forward with optimism there is also a degree of caution too. This has prompted me to think about how many times I have tried to make a plan and had to change it, due to my unreliable health. Sure, life can be very unpredictable even when you are healthy, but when you don’t know if you will be well enough to leave the house on occasions it makes life very difficult.
I was thinking of how best to describe this situation and shifting sands came to mind. The definition I found is as follows “a situation that changes very often in an unmanageable way” which I think sums things up perfectly! This is exactly what is happening to me, but what is the best way of dealing with it? As a business man I have been used to finding solutions for complex problems, but I came to the conclusion that there isn’t really an answer. Simply because the problems are normally different each time, and until they arise you can’t deal with them. There is no preparation you can do, for something that might not even happen.
So over the period it seems I have got used to things changing at a moments notice, and have made the necessary adjustments almost automatically. I used to be someone who needed a plan to work to, not too structured but at least showing me the direction I needed to go. Now I feel like a bottle in the sea, waiting for the tide to take me where it is flowing. My urge to plan is still there, and of course there are certain things I must, but generally I am loathe to make too many fixed arrangements.
Christmas and New Year is the time I use for reflection on my year, and how I can improve things for the upcoming one. This one is going to be the most difficult, as on paper I will have the most free time I have ever had to look forward to but there is still a great cloud of caution hanging over me. In many respects I have been given what I really craved, and that is choice, but it somehow felt easier and structured when I knew what my weeks involved. I should really feel excited, but I don’t currently. Maybe it hasn’t really sunk in, that after so long I am not scheduled to have any more treatment. Naturally there are smaller health issues I still have to deal with but nothing as all consuming as I have just completed.
Is the world now my oyster again? Certainly I don’t have the energy or enthusiasm for the things that I now have the time to do, giving weight to the, “do it while you can” voices. I am not convinced that you can really have it all in life, as when I had health and money I didn’t have the time. Now I have some time and don’t have the other two! But whatever my new situation is, like usual I guess I will find a route, and probably should stop thinking about it and let it happen, I might just enjoy it!
Working for myself I was prepared for an element of unpredictability so that theme became more exaggerated with my health, but how do other people cope with a fast changing landscape? For many I see it is very difficult to adjust, and it is not only the patient but in many cases loved ones too, who’s life is impacted and rapid adjustments are made. This is not just in time, but in finance and emotionally too, many things can change quickly for people after a cancer diagnosis.
Have you got used to constant change and how do you deal with it? As usual it would be great to hear from you with your experience, so please feel free to share below.
I’m 6.5yrs post SCT & seem to be experiencing memory problems. I’ve heard of ‘Chemo Brain’ but at the mo I am experiencing differences in relaying things. I am 54 & the other half is 60, could be 6 of 1, half dozen of the other!
We’re at an impasse at present over something petty but it makes me wonder. I’m sure I did say what I think I said. I think it’s helm not bothering to listen properly. But it making me wonder if I need checking out – My mother has Altzheimers (had to sit for a mo to remember this word!) at 79. I wonder if treatment has expressed this in me.
I always have problems with words, especially when I’m tired. Do you experience this?
Anyway enough drivel.
Enjoy your time & go with the flow.
Live long & progress,
Your question is timely, as my wife and I have been having similar issues. Slowly but surely, my ability to remember and concentrate has diminished, and I am actually in the process of having some tests done.
Chemo brain is something commonly talked about, and of course non of us are getting any younger, but I have found things getting much worse recently. Checking the house several times before I leave, making sure I have all I need, then constantly checking during the day in case I leave something somewhere.
I have been on sleeping tablets long term, which may not help the situation, but they are now checking me out. This site exists to share experiences so you are not talking drivel. It is very difficult to know what is normal or not.
My personal experience has shown me that this can be a common thing but they are going to do some brain scans to hopefully rule things out!
My suggestion would be that if it is a worrying issue for you that you talk to your Consultant, who will be able to signpost you to the appropriate people. Please let me know how you get on, and thanks for kind thoughts, Chris
Very insightfully written. Thank you. My psych has just given me an analogy to work with. That we are on a journey, literally driving our bus, and our values can change with every new thing presented to us, but coupled with us trying to do things and make a journey that fits with our values, we also have noisy, nasty passengers in the back (I call them malevolent bears) trying to take us, nay, run us off course. Even some voices from our past too.
After a recent scare (ok thankfully), I found it hard to just get on with things again. I couldn’t twang back. I didn’t feel the joy or the relief however much a I tried (and some of the people I love to bits in my local support group are going through so much more), but just looked around for threats, to kick start my mind into “defending” myself against future problems. It’s all exhausting. Two weeks on, my blood is beginning to flow again but it knocked my bus into a ditch. I think the longer we are in one routine the longer it takes to get used to the next. And how sick are we all that however ‘well’ we are at a point in time, it is no guarantee for the future.
Conversely, at least with my heart problem, at the moment, feeling very rubbish is also no guarantee that I won’t get on top of it again the next week…I’m taking a day at a time and learn and welcome the insights of others. The malevolent bears are quieter when I’m doing distracting things, or get one thing done in a day. I still kind of think I’m blindfolded on this bus, but at least I’m on it. X
You and your Psych are brilliant, what a fabulous analogy! I totally get all of that Have you got room for another passenger:)? Thx so much for sharing your experience so freely for the benefit of others. We really do get so much from peer support, fab stuff xx
I hear it from just about every survivor I meet: “While I was in treatment, it wasn’t easy but at least I knew what I needed to do, when and with whom. When treatment was over, my support fell away and I had no idea what to do.” Many describe that time as frightening or confusing; some say it was scarier than receiving their diagnosis. Part of that is that most are given no guidance about how to restore physical and emotional wellbeing after an experience that’s typically traumatic on both counts (I’m determined that no survivor should have to do that alone, but that’s a story for another day). And then there’s that fear of daring to be happy, because cancer could come along again and wipe it all out.
Could the sands shift again? Yes…and maybe in ways completely unrelated to cancer. But isn’t that what makes our present moments so precious? One of the highest arts is learning to create a legacy of happy moments, even in the face of uncertain circumstances. Though it’s new and unfamiliar, that open calendar is your invitation to create moments that make your heart sing.
Congratulations on arriving at the end of your long treatment, and congratulations in advance on what you’ll create on those open pages. You’ve created blessings for so many by creating this community; I’ve no doubt that you’ll create overflowing blessings for yourself and your loved ones in this next, new chapter.
Hi Dr Shani
Thank you so much for sharing your vast personal and professional experience with our community. It is much valued!
I recognise the emotions you describe above, however in my own instance I still have other treatment required and my complex case means that I will never be far from the hospital, even if it is only for my monthly review.
Time will certainly now be more plentiful for me, which is certainly a blessing and I have some exciting opportunities laid out in front of me, but now is the time to take stock and review how I want to proceed in the next few months.
Nature has removed the opportunity for choice for many years, I feel I need to take my time now. Thank you so much for your comments about this community, it is a very special place. I thank you for your support to help it grow, Chris
Hi Chris, It is wonderful that you have completed your treatment, and all the feelings you describe are, it seems all part of the course too. Hold on tight! I think the ‘end’ allowed me to finally look at and experience the full impact of what I had been through. It is after all one hell of a journey. And now at the end your kicked out not literally…’you can always get in touch if your worried’ I was regularly informed. And for a long time I wandered around feeling quite lost and sad I must admit. This is the bit of the bus ride that is not explained. It’s about reevaluating your life, past and present and tentatively looking at the future and setting small goals. In a way we haven’t had this luxury for a long time and now its back, but as you say its all different too. We have to learn to take care of our selves and our needs. Something I wasn’t very good at but something I am slowly beginning to enjoy, with child like amazement. It is a slow process of recovery and everyone’s journey is unique.
Just believe you’ll get there and somehow you will!
I imagine you are feeling very tired at this point. Rest is another of those areas we need but fight! Go well Chris. Be very kind to yourself and remember to take time to see what a beautiful world we live in.
My thanks to you as always,
I have finished this particular regime of treatment, but this is far from the end. In January I am having some dental work done and in Feb I am having my eyes checked out. I am also seeing a specialist for other bits, all related to my previous treatment, so it is not like I am leaving the system for 6 months or more.
I also am checked monthly by my Consultant, so it is not exactly the feeling you describe. My entire journey has been very complicated and I will never be far from the hospital, so won’t get the feeling that some patients feel when they walk away for the last time.
Yes I am physically and emotionally drained, from this lot, so am taking time out to enjoy the simple things before I get involved in any new challenges in 2015!
I’m so pleased that you are able to slowly make the adjustments required, and much appreciate you sharing your own experiences, many of which we have in common. My very best to you as always, Chris
Anorher great blog Chris, although our cancers are very different, I too live with mine supported by lifetime treatment and surveillance and see many similarities in our post diagnosis situations. Three things jumped out for me:
1. Shifting sands does mean you have to re-adjust and get on with it! (Ex soldier and project manager speaking!)
2. A lot of us are getting older as we live with our cancers. It’s easy to blame every ache and pain on the cancer. I’ve had to become very knowledgeable about my cancer and my body to help with my own risk assessments and decision making. This has led me to become a patient advocate for my type of cancer and I share this via my own blog.
3. I like the health, money and time analogy vs the ‘do it whilst you can’ brigade….. easier said than done. As a businessman you may have heard of the project principle of ‘time, cost and quality’ – if one is adjusted, it will have an effect the others!
Many thanks for your comments and dropping by to share your own experiences. We certainly seem to have a lot in common, and I have often felt that since we have been in contact. Particularly that we have both become knowledgeable re our cancer and the effects, and that we have also become patient advocates.
Yes, the time, money thing is something I never really considered whilst working, only something I appreciate now I can’t!
So pleased you are enjoying the blog, and wish you, your family and your health team, season’s greetings, and all the best for 2015! Your support is much valued, Chris
It is wonder fuel to hear your treatment is wrapping up. The image of shifting sands feels quite right as an analogy for all of this. Very much relatable. ~Catherine
Great to hear from you Catherine. This regime has been a major part of my life for three years, and will let me have some time back. But it is not all my treatment that is complete, I don’t think we will ever get to that position, but it is certainly progress!
As you well know, things change quickly in our lives, and shifting sands was the best way I could describe it. My best to you as always, Chris