Early in Remission

Hi Ourgirlinthenorth and welcome to this corner of the Community.

My friend  highlighted this great paper in your New to Community post - what are your initial thoughts about what the paper was saying to you?

You will see that my cancer journey is now coming up to 21 years in May so totally understand the ups and downs that come along. I very quickly learned to embrace my cancer and control how it controlled me. 

Fatigue is a mystery, I am over 4 years post my last treatment and only in the past year I could say that I have won the fatigue war developing strategies to deal with the hard time - the main strategy is actually exercise, things changed when I started going to a cancer circuits class - big improvement both in being able to do more but also controlling the muscle waste he and nerve damage allowing me to come off some very strong pain meds.

So the paper?

Hi Mike - Thehighlander,

I found the great paper a complete revelation.  It described perfectly my situation, i can identify with everything in the framework it sets out.  Also, the paper represents alot of my own thoughts and frustrations i have felt up against within my whole experience of the impact cancer diagnosis and treatment is having on myself and my husband.  At last i feel that someone actually "gets it" which is evidenced based.  I actually feel validated that what i am saying, thinking and feeling is not wrong and that i am not "making this up".  Recovery is not a quick fix as the paper explains and alot of time is needed.  Also, unlike other medications, chemotherapy does not make make you feel initially better it does the opposite and the body cannot repair itself quickly after bombardment of toxins at a cellular level - again the paper's explanation makes sense.  Reading this whole paper has had a profoundly inspiring effect on me and brings a great sense of relief at the same time.

I agree about embracing cancer, like you i quickly accepted it when i was diagnosed and took the immediate view to help myself  along with all those who can help me - i am part of a team approach.  I will not deviate from that stand point .  However i am really feeling the impact now mentally and emotionally on top of fatigue, neuropathy, lymphoedema and muscle/joint aches and pains.  I now need to reasemble myself post treatment and learn how to recover.  One thing since i was diagnosed i have been doing is walking regularly in our local woods which i am fortunate to have on the doorstep.   I have found this to be of real benefit both mentally and physically. You are right re controlling how cancer controls - i had my strategies during surgery and treatment but i realise i need to learn how to do this post treatment as well now.  Not quite sure where to start but you have helped me to think about this.  Thank you.

Hi Mike - Thehighlander

I just want to say thank you to you for warmly welcoming me to the group yesterday. I greatly appreciate it. 

Good morning Ourgirlinthenorth....I can’t get away from hearing your Community name said in a northern accent ;)

I think embracing what is in the paper is a great foundation and a place to build on. I can totally identify with all the 'left overs' from treatment and it just takes time, and I have to say, some determination to work these all out.

Do check to see if you have any Local Macmillan Support in your area as I am told the HOPE course is very good or a Maggie’s Centre as these folks are amazing. I have done their “Where now?” course..... this helped me join up the dots in the post treatment recovery - the one lasting thing I got from the course was the importance of regular exercise. 3 year back I was on very strong pain meds for muscle damage where my mass was....... I am no linger on these meds and the pain is all but gone....... the knuckling down to find a way to fix this was the way forward and my great GP could not proscribe me this.

Staying up in the Highlands it is normal for folks to do a 4 hour round trip from the West Coast to Inverness to take advantage of our local Maggie’s Centre...... to a person they will all say its worth every minute.

The paper is great..... but I would always challenge folks to become proactive after reading through it and using it as a vehicle for change and life improvement.

So get a note book or some sheets of paper and put pen to paper - it is a good way forward.

So a page per subject heading. 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 you are worth it.

I put up an answer to a post in this group last year and the Community Admin team made it into a Community Blog - follow this LINK and have a look.....saves me typing it all out again ;) 

The fact that you have been able to navigate to this corner of the Community and are actively engaging says a lot about your desire to move on - one way or another.

Wide day up in the Highlands, we will find a cosy Coffee Shop later on, watch Scotland win in the Rugby  and then gow over to our youngest daughters and play with our number 6 year old granddaughter (we have three others) and they have snow so we will be making snow men I think then have some dinner.

Back in late 2013 I was told "if the plan we are putting in place does not work - you have 2-3 years".........I am way past that deadline....result I say.

Always around to chat ((hugs))

Hi, I just wanted to say I have been feeling the same. I got to 1 year cancer free last Friday. And in those months since the main thing I've struggled with is fatigue which at times can be so crippling. Although I haven't quite mastered things just yet, I just thought it would be nice to reach out and show and see that we are not alone in how we feel. I get so emotional so easily and sometimes feel more upset than when i was actually poorly!! It's hard to explain to other people because I'm better so how could we possibly feel these kind of feelings. It sounds strange to say but it's nice to be able to read people going through the same and I hope that each day you will feel better and stronger. 

Eleanor x

Hi Eleanor I see that this is your first post so welcome.

Do have a look through the discussions as you will find some very helpful information and as always - hit the 'Reply' to support others.

((hugs))

Thank you Mike. Yes it is nice to see other peoples experiences. I think it can be easy to feel alone with those feelings after wards so it is a comfort to read the various experiences and people going through the same.

Eleanor 

Eleanor, when you have a moment you may want to put some information in your profile as this help a lot Click here to see how to add details as this helps everyone to see a little about you and understand the journey you have been on..... you also can see our stories by hitting our names.

Hi Eleanor82love,

I really appreciate your acknowledgement and encouragement - today i have found so many things difficult which has overwhelmed me and since my diagnosis and treatment find i am quick to tears not to mention lack of patience and easily frustrated.  Fatigue makes this worse.  Your kindness came at the right time and stopped me in my tracks.  I want to thank you because you have helped me more than you know.

I find being able to identify with others treading this path is vital to dealing with cancer, and all the challenges it brings.  Shared experience and learning from one another reduces the isolation, lack of understanding from those who have not been through it not to mention the confusion and fears experienced on this path.  I feel this is the whole essence of support this Community brings from the lived experience and courage and willingness to share it.

Thank you for writing and i wish you stronger and better days too.

X

I'm so happy to help in some small way and like you say I think there is a lot of healing to be found in knowing that understanding from others going through the same. It's quite astonishing to go through such a thing for it all to just stop but then you're left with these after burners. In these moments like you are feeling today this forum is great as you dont have to feel so alone and these feelings we can all relate to together. It really is true it's so hard to express to people that dont understand.

I often thought that if I knew people were going through the same it would be better to deal with. I sometimes think I'm going nuts as I cant understand why I cry or get upset. But you know, it's sometimes tears merely of the sheer joy at hearing the birds tweeting outside to then the opposite of quite despair of feeling alone with my feelings. 

And this is me a year later, you're still very early into your remission so I think its fantastic to talk on here early on like this. I didnt think to do this sooner. 

X