Really struggling.

Hi,

I too had chemo, a bilateral mastectomy and radiotherapy and am still having Herceptin injection, only a few more to go thank goodness. My partner and myself both coped and got through everything, but a bit like you now we have started to do the more normal things...visiting family and going out for a few meals, it all seems a bit unreal and we feel like we are in a twilight zone. I still have pain and discomfort and a bit of a seroma swelling on one side where some lymph nodes were taken. I too worry with any pain or discomfort in the same way that all is not as it should be. I am lucky in that my partner has been very supportive and has taken a more positive response, but there are quiet moments when I have to "pull myself together".... and get on with things....I am just hoping that this period of adjustment evens out over time, because it has been one hell of a year.....Try to keep strong and positive.

Hi The Scriptfan I feel like Im telling my Granny how to suck eggs responding to your post but Im gona do it anyway. If you want to chat privately send me a pm.

I think we all stay strong when undergoing the treatment because we know that we need to get through this and come out the other side so its head down and on with the tasks in hand. We are also surrounded by people and our lives dominated by hospitals and treatments and then we are alone and no one is there anymore for us to talk with as we have maybe previously had/done. 

You and I sound as if we followed a similar path after our treatment finished although mine happened sooner than yours with anxiety and panic and I started on an anti depressant and counselling and it took time but I got there and so will you but you need to not beat yourself up as what you are experiencing is very normal and affects us all differently. 

How would you feel about calling The Macmillan Line and having  a chat maybe with Ellen or someone else if you wanted just to have a chat and get all that out of your head it does help I promise. Do you have access to the article by Dr Peter Harvey as I certainly recognised myself in it when someone gave me it to read at the point where you are now? Whats happening  at work ? I found that when I went  back my tolerance level was low and I hadnt been like that prior to the surgery treatment etc but when this shit gets thrown at you it changes how you think and feel and thats again normal.

Could I ask could that pain that you are experiencing be muscular or could it be tension? Im just asking because it could be either of them.

Please dont hide away we are here for you and always will be so you are not in this alone and I promise you that.

Meantime Im sending the biggest and tightest hugs I can your way for now.  Please keep in touch. xxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

Hello ScriptFan . mrsox here.

Yes you were very strong through out your battle, I was lurking about then too. You always gave and will again good advice. 

This anxiety through work has got to stop.

I have this morning chucked my spanner at work harder today. As like you, WORK .... a job I love and do enjoy and will  moan about again when I go back was unbearable because of two work colleagues.

Like you I hide this anxiety at work for four years and last May,  IT BROKE ME . 

NOW..I am on the up because I fought my anxiety and fought back. You can too, It just take's time one step . 

You watched your family fall apart in front of your eye's , while you were stuck in a parallel universe being poisond  to be made well. Everything out of control, because you can see yourself disappearing and what that does to your family . You can't help because you just can't. 

Then all that control is GONE..

You start coming back to life not knowing what the fuk happened .. even tho we know?

Who are we? Where has my son gone? What is wrong with my partner? 

I SURVIVED...I Did not become a victim when I got diagnosed with this bastard disease...

I became a SURVIVER.. so ScriptFan.. 

Do not let those ignorant bastards at work make you a victim. 

FukUm xxxx 

mrsox.

Thank you Rattybaggins and GRANNY59

I think the pain could be muscular and i have been told before by my breast care nurse that i will have some pain from the radiotherapy i had. it could also well be tension as the pain in my neck does feel that way. 

My doctor started me on sertraline a couple of months ago when the anxiety started but it seems to be getting worse and she won't up the dose as she thinks its mainly caused by work and that needs sorting rather than my medication upping. But the anxiety is getting worse and i find myself not being able to breath sometimes, 

Its good to know the counselling helped you, i feel the lady i talk to doesn't really understand how anxious i am getting and i sometimes feel she isn't really listening to what i'm saying. Because of this i feel i'm going backwards rather than forwards, or am i rushing myself?? As for work you could be writing it for me, my tolerance levels seem to have disappeared, lazy staff now annoy me and after a few serious incidents i'm fed up of their incompetence. but i feel i'm trying to run away from it rather than deal with it because again i don't think people really understand how it is affecting me. I have emailed my boss though and asked him for a meeting before i go back to work to talk about stuff. 

I used this site a lot when i was having treatment and i was honored to be asked to be a community champion, i am going to try to get back to that as i know how much it helped me before. I think i isolate myself because no one seems to understand and i think because i live on my own i think about things without having anyone to talk to about them. I often say i never feel lonely but i often feel alone.

Thanks for your replies ladies xxx 

thanks @mrsox you talk sense and i should have come here sooner to listen to you all xx

Hi and good morning.

I have been sitting on your post thinking “what can  I bring to the table?”....... you know all the CC stuff...... “any Local Macmillan Support HOPE course in your area or a Maggie’s Centre “Where now?” course and ‘The great paper’.......”

But when all boils down, we all walk an individual cancer journey that is completely different and as you know one ‘fix’ does not fit all.

These words came into my mind and I am sure you will recognise them

“With no visible superpowers

Sitting in the kitchen and talkin' for hours

You always show up at the perfect time

There's no one born with X-Ray eyes

There's no way to know what's on my mind

But you always say the words that save my life”

One of the many lessons I learned over my long 20 cancer journey is the importance of talking to the ‘Right People’. It is so important to talk with people who will listen, not butt in and who have walked the walk..... this is so important.

Professionals are great but at some point it’s all about experience and knowing ‘you’ and the path you have walked and are walking.

Venting our frustrations to people close to you can be a wonderful way to release stress and gain vital support.

However, if you have folks in your life who tend to exacerbate your worries or load you up with even more concerns (and really, who doesn’t have that one friend or family member?)....... avoid sharing too much with them.

In the early days we failed miserably at trying to ignore the way we felt, as this actually increased our anxiety. Instead we recognised that we had to embrace our anxiety. This took dedication on our part and a great deal of humble pie to talk with the right people.

These first steps empowered us to take action, move forward and manage our ability to define our destiny rather than the circumstances surrounding us defining us....... helping us find peace and feel more in control of our lives.

Now we have been working in this for over 20 years now, it was not a quick fix but the more we worked at it the more the healing developed.

That is a lot of words to look at over your tea but that is what I felt was in my heart for you.

From your profile (if it’s up to date) you work in a very demanding sector - I know as this was part of my job as well so this is a stressful environment....... that you say you love........ don’t let the post cancer journey rob you of the things that make you who you are and can be ((hugs))

Thank you Thehighlander

I start on the Hope course on Thursday, so hoping it will help somehow.

I have good friends, but i don't always like putting on them. I also have an amazing mum and 2 fantastic grown up children, but don't tend to tell them much as i don't want them worrying. The lady at the fatigue clinic i went to last week told me i have to start being kind to myself, but because i have pain, sadness and generally feel crap i find it hard to be.

I love my job and it makes me sad not wanting to go to the place i love so much, i have arranged to have a meeting with my boss on Friday to tell him about the issues that are making me not want to be there, and i have an appointment with occupational health on Monday, so if i'm not happy with what he says on Friday i'll see what occupational health have to say about it.

i'm going to hold onto the last thing you said "don’t let the post cancer journey rob you of the things that make you who you are and can be"

Thank you xx

Hi again,

Well done you - we don't have the HOPE course up in Inverness as our local Maggie's 'is the place' where everything 'Cancer Support' happens. I am told the HOPE course is great but it will challenge you in some areas so be prepared to become vulnerable.

I did the Maggie's 'Where now?' course over 2 1/2 years back - 2 years post my main treatments and it was good to sit and talk openly with others about 'getting through the post treatment part of cancer' and dealing with all the milestones that need to be passed on the way.

As with these types of courses there were only two men and 9 woman, but even although the two of us were surrounded with lots of talk about 'woman' cancers  and lots of 'sorry to bring this up' it was very beneficial and yes, I was vulnerable and I did cry.

One of the main things I learned and realised was I had been carrying a massive rucksack of 'stuff' on my back for years. I had not unpacked any of the 'stuff' I had collected before, during and after my treatment......... it was my stuff!!!........ and I think you can fill in the blanks with regards to your 'stuff'.

So I now regularly empty my rucksack on the floor, yes, some of the things that are hard to deal with and I have not 'worked out' go back in the sack........ but the further I go on and deal with more issues the lighter the rucksack gets and the easier life becomes.

I was left with server neck pain and nerve damage and was on some very strong pain meds....... I think I was close to becoming 'dependant' but the course helped me understand that there were other ways to overcome these pains as well as the stress and dealing with the stress helped the pain - a vicious little circle going on.

I am now over three years in remission with no guarantees that my cancer will not come back - in fact I am very high up the 'at risk' list for skin cancer due to the years of treatments I had......... but we don't let this define us.

I do get you not wanting to 'loading' your family and friends with your 'stuff'.......... but these folks who are close and have known you for years - do see the difference. I I have a few who were brave and challenged me to 'unpack'....... they actually said that after we had a few open conversations the stress that THEY had been carrying reduced.

It was not obvious to me that "others could feel stress from MY cancer!!"..... an eye opener for me and my wife.

Do come back and tell us how you are getting on..... and take note of the Mandela quote below ((hugs))

I went on the HOPE course in 2013, Ironically just before I got a brain met n had to have cyberknife for it, followed by oral treatment ( Pazopanib) systemically to keep any other mets from developing. Had a treatment break of 3.5 years n only went back on Pazopanib in Oct 2019. Everything's shrunk between then  n scan in Jan 2020.

So whether my life counts as being " after cancer" I'm not sure. I feel like it does