I had a conversation with a fellow patient at my haematology clinic this week about the pre and post stress of three month checkups and thought it would be an interesting topic to discuss with everyone and share strategies to combat this problem.
Hi Alfie, good idea for a post. I was diagnosed 15 years ago and I still get stressed and a yukky feeling in my stomach pre and post any medical appointments. I am relieved so many others feel the same. I was also stressed when my results came back slightly improved last year !! My mind seems to thrive on being like a washing machine with either a project or fears and thoughts going around. I suppose the only strategy I have is to keep my life and social interactions fulfilling, eat well and take rest, fresh air and exercise and I just accept it as a fact of my life. I really look forward to hearing from others and your strategies Alfie.
I have only finished active treatment 8 weeks ago and will have my first post chemo review in mid march so I have decided to have something positive lined up to do right before and straight afterwards in case I don’t get the news I want. I think that when you are not attending the hospital on a regular basis your mind returns to relative normality but when you have to go back to the hospital it takes you back to a different time emotionally. With many blood cancers this may go on for many years and it is important that the medical profession recognise this is a reality for their patients.
Hi, I find it really stressful! I’m hoping that asntime moves on the time I think about it between appointments get less. If not I will just have to find ways to get through it. X
I think the first step is for us all to recognise it’s a “thing”. That way we can find individual ways of coping with it. Trying to stay in denial about things which are bothering me seems to use more energy than facing it head on. As my condition is incurable I will be having these check ups for the rest of my life, so need to develop good coping strategies.
It is emotionally draining in the run-up to blood test results every 3 months. I have asymptomatic myeloma which I have been told will progress to symptomatic at some point. I try to think positively that at least if it does progress that it will be caught quickly so treatment can start. It’s basically going to be like this for rest of my life one way or the other. I’m not sure it will ever get any easier though.
I had my transplant in 2007, but due to chronic GvHD I still have checks every 3 months. I don’t usually feel stressed when I go, but always feel exhausted when I get back home.
I have active myeloma but understand your anxiety, the positive news Is that treatments are the best they have ever been and you will be able to start therapy at the earliest opportunity should your myeloma become active, which isn’t the case for many patients who sometimes are left undiagnosed for years. The sooner treatment starts the better the outcomes, so there is lots of hope for you in the years to come.
Sorry to hear your gvhd is still causing you problems but happy your treatment was a success. I think it’s clear from everybody’s posts that we all feel the stress of checkups to one degree or another and in a way that’s a comfort on its own, at least I know it’s not just me who feels that way.
Yes there are new treatments coming through whch is great news for us. I am very grateful to the NHS for the active monitoring as well. Although it’s stressful it’s better to have it than the myeloma be found when advanced. We are very fortunate to have this care.
Thank you for your kind words of encouragement.
Yes, I find medical appointments exhausting emotionally and physically as well.
Hi,since diagnosis feb 2016,hospital visits have become better to attend. I dont think about it beforehand, worrying wont change any results they have,and after i put it away in a mental box and think thats done,lets move on. Dont get me wrong in the early days i fretted before each one,ive had two op’s since ,one to diagnose the lymphoma and the other an op on my cervix because the pet scan showed a hot spot,so they sorted it out. Before lymphoma the hospital was in the background and some where you go in an emergency, now its a part of my life,im accustomed to. Im always here to help if i can.
Hi, yes, in the last few years I have had to visit nearly every department in my hospital, oh, except for the maternity department that is, I am now 69 yrs old. However 15 yrs since diagnosis and I still get anxious before appointments, I still haven’t found my metal box, any handy hints would be welcome.
Hi Erica. When im due to go to an appointment that day i usually think of something nice im going to do after,a walk in the park,sit and read a book with a cup of tea,have a long soak in the bath,watch a movie,ring a friend for a chat etc,it doesn’t have to cost anything, then the day isnt written off as a day of gloom or unhappiness. Im not saying its easy,im in everyone else’s situation,every 3 mths i have to go in too. I think to myself its going to go either way I’ll need treatment or i wont, if i worry it wont sway the results of the blood tests,i always feel a bit better if there are still no B symptoms showing,if there was I’d be worried more. Nobody can say what another person feels like in these situations,but my strategies help me personally. Sending kind regards.
I think you have a fantastic attitude , it’s something I try to follow myself.
I was diagnosed only last November with CLL and thankfully I am considered watch and wait but this does not make me feel any easier. I had monthly checks until January this year, but got myself into a real state on check up days,now I have been told that I don’t need checking now until May … deep breath!! I feel very well and am doing as much as I can to be ‘normal’. My consultant said that I can travel as much as I want to and if I notice any changes to get in touch. The major problem has been obtaining travel insurance but we have now found a company willing to cover CLL either for single or multi trips.AllClear were the ones recommended by McMillian and I spoke to a lovely man called Jim. Jim made me feel at ease without being too intrusive so now we can travel in peace. Try Bachs Rescue Remedy to settle your nerves, always works for me in stressful situations.
Brilliant strategies and as you say they do not have to cost anything. Extra bubbles in my bath and a longer soak works for me and a hot chocolate does wonders. Today the weather is stunning and I wrapped up warm and just sat in the park being nosey.
Thanks Alice for your travel insurance experience and that Jim was so helpful. I find McMillan can be really useful. Good to know the spacing between your check up’s has been extended and you also have the back up of seeing the consultant sooner if you have concerns. Can you tell us about your travels?
Love being in our park i spend hrs there in my free time,it helps me write,exercise, relax and feel like myself. Love hot chocolate too,i usually take one in my keep hot cup while walking around the park. Sending best wishes to you Erica
Will try and share as much as I can. Since I was diagnosed we have been to Cape Verde, Lanzarote and in a few weeks we shall leave for a whole month in Portugal. We have decided that we shall get away from as much of the winter flu/cold bugs as we can and then stay at home to garden in the summer. My consultant said that keeping away from people with colds can only be good, I cover my face on the flights to avoid breathing in germs but for long flights I may buy a face mask. I am heartened by your posts Erica, and hope I can be watch and wait for as long as possible.