Hi All, just need some strength, I was diagnosed on last Thursday with a rare form called Liposarcoma by a phone call from a specialist onocogyst that I have never talked to before, I had a mass taken out of my colon 9 weeks ago and been awaiting results, there was also a small mass they thought was a ingunial hernia that they left in, but now realise it is the similar and they plan to take that out also,( CT scan showed nothing else untoward in my body 10 weeks ago.) I have managed the stress until then, but now have to have another operation soon and they a very vague on prognosis. I am married to a lovely lady with three teenagers, but my life mentally has fallen apart.
Since the phone call I have spiralled and gone from crying constantly , consumed by thoughts of dying and fearful,I stay asleep for 3 hours only after taking prescription sleeping tablets , lost my appetite and find it difficult to think of anything outside of this. It has really upset my family, which makes me feel even worse, all my friend say stay positive and strong for your family, but I can’t and it is destroying me with anxiety, and more importantly my family and driving them away.
Is this a normal reaction please and if so is it just a phase and in your experience how is it best to cope with it, all my thoughts are catastrophic, when we don’t have clear prognosis yet, I go for another CT scan on Monday to see what has happened to the small mass. I can’t live in this mental state for long and am hoping for some inspiration that this is manageable mentally and part of the process, if so what comes next mentally in your experiences.
appreciate your feedback
I am really sorry to read about your diagnosis and what you are going through at the moment. Every cancer experience is unique but I wanted to let you know that you’re not alone, a lot of what you describe in your post is incredibly normal unfortunately. You are in the process of receiving some exceptionally bad news and your brain is trying to process something that it was not expecting to process. It is going to take time, and sometimes quite a long time, to work through. I would imagine that you will be experiencing all kinds of very intense emotions - fear, anger, sadness, frustration, despair - unfortunately all of these are common and I know from experience how incredibly painful they are (probably more painful than any physical pain I’ve felt although that can be painful too). Your friends and family will also be going through these emotions because they love you and don’t want this to happen to you. So all in all, it is an incredibly difficult time for everyone and it’s good for everyone to try and be as kind to everyone else as they can be at this time.
In terms of coping mechanisms, there are all sorts of things which can help, it’s all about finding what works best for you, eg, talking about or writing down how you feel (it’s good to get it out of your head), distract yourself with an activity that will occupy your brain (something active not passive), diet (try to force yourself to eat good things - even apply “mindless eating” if you are not eating at all (this is the idea of switching your brain off while you eat - so in front of the TV for example), exercise (good for working out frustrations and helping sleep).
Please also try to remember that every emotion, no matter how painful, is and can only ever be temporary. Those thoughts can’t and won’t last forever. But if you can feel things getting really tough, please reach out to your medical teams - they should understand the emotional turmoil you are experiencing and will help you find the right professional help.
In terms of hope, if it helps you, I have gone from being deeply suicidal 4 years ago to living a very happy life now. I couldn’t see this life when I was buried in the pit, but it is definitely there Nick, you just might need some time and help to find it.
I hope this helps in some small way. I am wishing you and your family all the very best.
Thank you Greg for the kind words, it is just wha to hear, would you advise me talking to a councillor also, would they cover areas of the mental challenge?
It is a deeply personal decision whether to go down the counseling route. Not everyone gels with it but for me it was an excellent source of support. I have had sessions with a counselor through Penny Brohn (a cancer charity near where I live) and I think there are others such as Maggie’s centres in other parts of the country. I am sure your central medical specialist will have some good contacts for you locally. The sessions were informal and a really great space to say out loud what I was thinking inside my head which helped me to process those thoughts. If you feel yourself to be in crisis mode, definitely make it known to your GP or hospital contact. I ended up under the care of a psychologist for about a year when I was really poorly - things got really bad for me emotionally speaking, but he was brilliant, so kind and caring and so technically brilliant at his job - I hold him in as high regard as the hematologists who saved my life.
So there is definitely support out there Nick, it is sometimes just a case of trying to work out what you think you might need and then making it known to the specialists that you really need it. It might be that you don’t need the professional support and can use learned techniques to get you through (there are loads of online things like MIND which can help), but if you’re really struggling, please let it be known as there is some great support out there.
I really hope you will find some better times ahead soon Nick.
again thank you
I see that you have had a couple of excellent replies from Greg and I fully support what he says. I would like to add a couple of points: Firstly about counselling, it sometimes tends to be a very personal thing, and it is important to have a counsellor that you get on well with, someone to whom you feel that you can say anything. The counsellor also needs to have a method or format that works for you, and that the counsellor is willing to adapt and change tack if you don't conform to what he is expecting. There's nothing worse than someone repeatedly asking the same question over and over again..
My second point is about what your emotions are based upon. It is easy to be thrown off balance by what we think is going to happen using anecdotal evidence of what others have experienced and to pick up on the worst part of their experience. I wonder how much of what you're feeling is based upon what you know? In my experience, the oncology team are keen to answer any questions, and would be concerned if they thought that what I had been told was causing significant distress. it may sometimes seem that they are busy, and may not have the time to put your mind at rest, but I believe that most of the team will be keen to ensure that you are fully informed about all aspects of your condition, not just the prognosis, but the ongoing treatment of the cancer and management of the side effects and any resultant pain or discomfort. I would say, think about the questions that you want to ask before your next appointment and make a list so that you don't forget something. By thinking about it in advance, it may provide a further line of thought, or some follow-up questions. It's often difficult to question those that are trying to help, but better decisions are made if they are based upon facts.
Apologies if I sound a bit pedantic and preachy, but hopefully some of this may help.
thank you for your advice , I will take it on board
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