Hi everyone
I’m new to this site but I’m hoping that it will help me find others with wisdom and insight! This is a long explanation but, I guess, I’m just reaching out.
I had a sclerotic lesion removed from my humerus a month ago. It was only detected by chance (about three years ago) and it was felt that I’d probably had it since birth. It was extremely slow growing so annual MRIs were adequate. However, in February I was told that it had changed and it now had the potential to become malignant. Again, nothing to worry about, very unlikely it was actually malignant. So, they operated a month ago and two weeks ago I found out it was malignant. However, great news, they got it all so no treatment was needed. However , at he same time as this checkup, they x rayed my arm. By chance, they noticed my liver had multiple lesions. So they wanted a PETSCAN to be done within two eeeks. That happened 8 days ago and I just have to wait until I’m contacted re a follow up appointment.
Fundamentally, I need advice on how to cope with the waiting. My sleep has been hugely disrupted (04:00/4:30 has been the time I wake and get up since my op and it tends to be earlier at the moment - it was 03:00 yesterday). Sleep is never great for me (waking a lot) but, at least it was more like 06:00 when I’d get up. The stress of waiting and being completely out of control is all consuming. My husband has been hugely supportive and is feeling it too. I phoned the Macmillan support line and spoke to a nurse who helped regarding timescale (as I didn’t have any idea beforehand other than I assumed it would be much quicker). The help line was useful snd the general support was good. However, I feel like I need help getting through each day at the moment.
if anyone can share their experiences snd how they coped (other than being strong, distracting yourself etc), especially at night, I’d really appreciate it.
Hi Foursquare welcome to the forum and I am so sorry to hear about what has been happening for you.
The stress of waiting is awful and nothing can make time go any quicker unfortunately but not getting much sleep is not good for you either and that takes its toll on your general health. Im glad that you felt able to reach out and speak to someone on the support line though and glad that was helpful for you.
My suggestion may not be of much help in actually getting more sleep but I wanted to let you know that there are a group of night owls on here in the Awake thread which I will insert the link to this for you. The folks on there are often around during the wee small hours if you feel that you need to talk with folks and the talk is not all about Cancer either some of it is funny and some is just folks chatting but all very helpful and welcoming when you cant sleep for example.
gail
Hi and a second welcome from me. Some great information as always from my friend Gail GRANNY59.
I have been on my cancer journey with a rare and hard to treat blood cancer for over 22 years now and you would think I would now have all the answers. But it tends to be very personal as to how people actually deal with this challenge.
The stress of waiting and being completely out of control is all consuming
Over the years I have had very many good results and some very challenging results but on reflection, in the very early days I came to realise that I could throw all the stress and worry I could muster at this and it made absolutely no difference as to what I was told or what happened. So I had to find how to control it and not be consumed and it must have worked as I am still around standing 22 years on.
In developing this mindset helped me deal with the challenging results as I was not mentally and physically drained by the effects of stress and worry resulting me being able to grasp what my team were saying and able to ask clear questions resulting in getting a grip on the way forward.
Sleep can be a challenge and this is most likely down to the whirlwind raging between your ears.... you need to find a tool to work these thoughts. For me it was a simple note book and pen. This day at the side of my bed and every time a thought, a what if?, a question appeared at silly o’clock I parked the thoughts in the book. It is a discipline but once you understand that this is preparing you for when you have to ask questions you will see the benefits and you may even see an improvement in your sleep patterns.
((Hugs))
Hi again, it is recognised that it takes a minimum of 18 days for something to develop into a habit.
For me it worked. I have a number of note books going back over my 22 years and it’s so interesting looking back at the journey.
To see all the silly o’clock notes, the answers I found from my team and others who walked the road with me.
All the questions I asked at all the meetings with my team and all the answers I received. Treatment information, drugs...... it’s fascinating to reflect back over the years and encouraging that even during the very hard times as a family we were able to navigate a way through and come out the other end living big a good life.... I am not cured and never will be but it is all about prospective of what is a good result.
