I’ve lost so much following treatment and wonder if anyone has any advice

Good morning Carrie missFitz, it is always challenging to look through the post treatment challenges people face and yours is no different.

Thank you being so open and honest as it does help focus what people can reply back with.

I am never surprised in what I read and it takes me a little time to ‘see’ the journey that can be taken and find the words to come back with.

I am one of these very annoying, totally ‘glass half full people’ you can see my journey in my profile but over my 20 years cancer journey it was essential that I would not let cancer define me. Having a blood cancer is often seen as not having a ‘real cancer!!!’ often called the invisible cancer....... but having had to face some difficult challenges even death on a number of occasions....... I am rather blunt when people ‘down grade’ my journey.

The words that hit me first were.....  “I’m miles from my friends and away from a life I’d spent years building up and I was happy because of all my achievements”...... these are the words of a person grieving, grieving for a life lost.

The process of grieving is a personal process that has no time limit, nor one “right” way to do it.

I have done some grieving counselling and these are the main steps in grieving process:

Denial and isolation - The first reaction to learning about cancer and what it can and has do to your life.

Anger - The masking effects of denial and isolation begin to wear, reality and its pain re-emerge..... we are not ready.

Bargaining - The normal reaction to feelings of helplessness and vulnerability is often a need to regain control through a series of “If only” statements.

Depression - The reaction to practical implications relating to the loss, sadness, regret. We worry that, in our grief, we have spent less time with others that depend on us. This phase may be eased by simple clarification and reassurance. We may need a bit of helpful cooperation and a few kind words.

Acceptance - Reaching this stage of grieving is a gift not afforded to everyone but it needs to be strived after.

At some post we all need to step away and interrupt the cycle.

Rather than give you some stock replies, why not try and look at the steps above and evaluate where you are at in this process at this point in time and come back with some thoughts.

You can have a look though the other group discussions by hitting the ‘Discussion’ tab and have a look at the various conversations and can even join in any of the threads.

You are on a journey full of milestones and first is an understanding how to move this forward one day at a time is the initial stating point.

We are always around to help you walk this as best as we can ((hugs))

Thank you so much for all your thoughtful and practical advice The Highlander. Especially reading the stages of grief. They make a lot of sense and are very useful to bear in mind.

Your reply was exactly what I’d hoped to get by posting. Very practical and honest. I guess that I’m aiming for acceptance, I’m just not there yet. Especially giving up my home. That’s a toughie.

Reading other people’s stories helps sometimes but I’m struggling at the moment with lots of ‘why me’ thoughts. Ugh I hate self pity . . . I’m sure it’s just a low phase. I do go round in circles again and again trying to make sense of everything.

Anyway, thank you again, for your reply. I’ll keep reading it over,  especially when I have a wobble.

I’ve a way to go yet so I’m just trying to be mindful and take each day as it comes. Not easy for an impatient person like me and trying to manage my mood swings.

I love your Nelson Mandela quote BTW. He is so inspirational - Brilliant 

I'm grateful to you 

Best wishes and cheers

Carrie

Hi again Carrie missFitz, I am glad that you got some food for thought from my post. The lose of your house and I am sure many other things is a big hurdle to deal with and this will take time to accept it all and move away from that point and move in a new and can I say, more meaningful direction.

My wife and I often reflect of the 'things' that have dropped at the side of the path during the cancer journey..... people, things, income.... but what we have now is much more meaningful then all the things we have lost. I visualise life as a long straight line with Contentment at one end and Despair at the other.

We all need to stand back and look where we are at in the journey then identify the steps we need to take move closer to the Contentment end and deal with the 'things' that pull us down closer to the Despair end.

Hitting the top of the line may never happen but aiming in that direction is always the goal.

I don't know if you have seen and looked at this great paper, If you have, look at it again if its the first time see it as unpacking the milestones of post treatment recovery.

After reading the paper I would always challenge folks to become proactive after reading through it and using it as a vehicle for change and life improvement.

A good starting point is to get a note book or some sheets of paper and put pen to paper.

So a page per subject heading and start detailing the things you have done already to move life on in each area and then start to set some achievable goals to work towards. 

When you achieve the first goal on each lists, tick it off and then put a new goal at the bottom of the list. By doing this you can actually see your progress and celebrate achievements. When I say celebrate I do mean giving yourself treats and gifts........ you have life - celebrate it.

The headings would be:

What steps am I taking to regain trusts in my body?

What steps am I taking to regain trust in myself?

What steps am I taking to overcome living with uncertainty?

What steps am I taking to deal with the world?

What steps am I taking to regain mastery and control of my life?

Try it, the future is sitting in front of you - think about driving a car. The big windscreen shows the future, the past is in the little mirrors and is getting smaller and more fuzzy as we move forward.....if you concentrate on the past you crash.

Always around to listen and help as best as I can ((hugs))

Dear@missfitz carrie

i really felt for you reading your story. It’s so important not to minimise your experience and it’s ongoing repercussions. Before you can move forward you have acknowledge that by anyone standards you have been put through the ringer. That might sound like a negative thing, but I disagree. Yes you do have to let go of the past eventually but before doing so you have to let those pent up emotions out rather than just keeping them repressed, it’s not good for the soul. You have made considerable sacrifices for your survival and I have the greatest respect for your fortitude, given the right help I feel confident you have the inner strength to make a new but different life for yourself and I wish you all the best.

Jane - Johnty that’s a wonderful reply, I’m truly grateful for your compassion which is much needed at this point in time. My journey feels insurmountable at times and too much too process. I’m grateful that you get this. I think even my closest friends can’t get the enormity of what’s happened too me and how I feel.

I’m really glad I posted as the 2 replies have made me feel understood and supported during a difficult patch.

I sometimes view my situation as if it was happening to someone else. Distancing myself helps me to get some perspective on things and it enables me to see a way through, but it doesn’t always work.

Thanks again for your support and encouragement 

Carrie

Hi missFitz

I have been reading your conversations intently and i really appreciate your candour in relating your experiences.  What stands out for me is not only your courage and honesty but in particular your self awareness which i think is a real strength which can be used as a tool to underpin the challenges recovery from cancer brings.  It is certainly these challenges that need just as much attention as the diagnosis and treatments that we have to cope with prior to post treatment.  

It is difficult when people who have not been through this do not understand the impact cancer has.  It really does turn life upside down on so many levels but there is help and guidance and those who tread this path that can shine a light where we need it.  This Community is a true relection of this as i am experiencing and also there are many discussions which are well worth a read which have certainly helped me that i think you will find useful to - do have a browse through the Discussion section of this group.

I find dealing with the challenges really is one day and one step at a time, sometimes 1 hour or  even one minute at a time.  I am learning it really is back to basics and beginning to build from there but only what can be realistically managed without overwhelming ourselves.

A very warm welcome to you

Thank you for another kind reply. It’s so heartwarming to have such wonderful people I’ve never met taking time to offer support and shared experiences. It’s very encouraging.

I do want to adapt. I believe doung this successfully is  key to moving forward. Not easy though is it?  your advice to take things one step at a time, sometimes by the minute, and not too plan ahead or live in the past is exactly right. A good reminder! 

I don’t like feeling different to the old me, who does? i feel so rubbish at some point most days which tries my patience and sense of reason.

I also totally understand what you said that my/our journeys are almost impossible for other people to understand unless they’ve been through similar. Even then went are all very different’

I intend to keep trucking, who knows what’s around the corner. 

I’m grateful to you for taking time to help me through a difficult patch 

Thank you and I will read through other topics in here soon 

Carrie

Hi Carrie,

Just checking in as I have been away from the site for a while. Work etc has been quite full on..but in a good way! Hope this isn't too long a post...I hear you yawning already, hahaha.

I know we have chatted before about various things and the impact cancer has had on every aspect of life. I totally understand where you are at the moment. I have managed to get myself to my 'new normal' (I know I always use that expression) by focusing on small 'wins'; targeting things that I can then reflect on and say, "Hey! That was an achievement!"

Inevitably, I still have days when I may let my mind wander slightly to a 'what if' place (i.e. if it hadn't been effectively treated or indeed if I had not been afflicted with cancer in the first place!). There are moments of resentment and frustration (rather than anger as such) when I am struggling to eat certain food because of the severe damage to my salivary glands or I have strange nerve sensations in my head and face. 

However, throughout all of this, the fundamental focus is always on looking forward as to what I can do - rather than looking back and thinking what I maybe cannot do as effectively as I used to. Yes, I can't platy cricket at the level I used to; I can't lift the same weights I used to; and I cannot perform on the Concept 2 indoor rower as I used to...yet!

As a source of inspiration and determination, perhaps look at this example. I mention it not as a case of criticizing anyone who is feeling lost - far from it - but as a means of reminding us all what we can achieve with a particular mental focus. A friend of mine in the USA is fighting a particularly nasty variant of lymphoma. He is undergoing chemo periodically but still rowing on the indoor rower every day and has set his sights on the record for the most consecutive days rowing. Yes, he has always been a fit guy and had a great baseline to start from, but he still knocks spots off me in terms of his performance (and I am not a complete 'slowcoach'). Of course he is not HNC and the impact upon him is very different in terms of the chronic effects which we experience form Head and Neck surgery and treatment...but it is interesting to see how he takes on his own battle.

Ultimately, it is all about little 'wins'. I know very well that people who were on the outside looking in can never understand (nor do I expect them to) the ongoing chronic effects which we all live with long-term. Outward appearances mask the internal concerns, discomfort and psychological effects of what we dealt with. I am not expecting anyone to tiptoe around me worrying that they might offend me by assuming that I am 'fine'. If I am not fine, then I need to say so, but I will only do so if I am genuinely not fine. For example, a sudden spasm through my jaw and intense nerve sensations may sometimes make me stop mid-sentence and grimace in pain when speaking to somebody. Of course, there have been occasions when I feel that the other person really doesn't give a damn and thinks I am being a drama queen. BUT a gentle explanation to them generally does the trick.

It can feel awkward sometimes saying that you don't want to do something or eat something because the underlying reason is very much linked to the chronic side-effects. To have to explain that it is because of cancer treatment can be a bit wearing, but if an explanation is needed, we should never feel awkward in giving it.

Finally, I am 2.5 years post-surgery now with a recent clear PET CT, so there are reasons to be cheerful. Looking out at my cats lounging in the garden as I work from home, with a cup of tea and a kit-kat on the go...there are worse things than these small pleasures in life.

Take care,

J.x