Struggling

Hi HerbyGirl58 and welcome to this little corner of the community.but I am sorry to hear you are struggling.

I have been on my cancer journey for over 25 years having been treated for 2 very rare types of blood cancer.

The first type was diagnosed in 1999 and is incurable, the other appeared in late 2013 was very aggressive so I went on to have 2 years full on treatments between late 2013 and late 2015 (800hrs of chemo, 45 radiotherapy zaps and 2 Allograft (donor) Stem Cell Transplants) so based on my long experience the word ‘struggling’ can mean a lot of things.

If you care to explain your struggles more we may be able to help you or direct you to where you can get help and support.

Thank you for reaching out, it sounds like you really have had a tough time of it.

Part of my struggle is that I had an easy time of it and only needed hysterectomy, it’s left me feeling all kinds of emotions, guilt, like a fraud even in denial that it ever happened.

I got diagnosed last July, had my surgery in September then just near my 12 week check I lost two family members, one unexpectedly the other, my much younger half sister who had the same cancer as me but was not so lucky. I think I put the whole experience on the back burner to deal with other things and it’s all caught up with me this week for some reason. I have much to celebrate but I’m not feeling it right now. 
I thought maybe reaching out on here might help me to accept and process my own health experience last year. 

Hi again HerbyGirl58 16 years into my journey with my 2 T-Cell NHLs and 6 months before my second donor Stem Cell Transplant SCT……. 2 very good friends were diagnosed with their types of cancer Gullet (oesophagus) cancer and Pancreatic cancer 

We all sat in our front lounge of our house with our wives…. us with a glass of single malt and our wives had wine…… we agreed and toasted that the last couple standing would live their lives to the full as a celebration of those who have went before.

When I was about 6 months out from my second SCT…… both my friends died within a few months of each other…… and at the time it looked like my SCT had done the job……. so I quickly went down the survivors guilt rabbit hole…..

But I had a few sessions with a team member at our local Maggie's Centre.

…… it was during these sessions that we discussed our agreement with our friends…… from that point on our focus has been on honouring our fiends and the 2 now widowed wives……. who we see regularly.

Have you a Maggie’s near you?

I’m not sure but I will take a look. Thank you for sharing your experience, I’m so sorry to hear about your friends and I will try to take inspiration from your encouraging words.

Huge thanks! 

I see that you have joined our dedicated….

  Womb (uterus) cancer

…… support group.

I am sure that there are fold in this group who have navigated the same path as you.

You may find it helpful to make a cuppa and have a look at this great paper

After Treatment Finishes - Then What?

by Dr Peter Harvey as it highlights the post treatment milestones.

Excellent that’s great information, I will do just that. Thank you once again .

My hospital haven’t given me any literature, in fact since the 12 week check in December I’ve heard nothing from them. They said they would see me at 6 months but that was mid June. I think the read that you have suggested is just what I need, thanks! 

Actually this is one area where our great NHS has unfortunately not been able to keep up to date with all things post treatment support

I have just read and downloaded the article,  after treatment finishes, what then? 
So much of it makes sense and that in itself is a huge help. I’m so grateful to you for your help, just can’t thank you enough.

Good luck to you with everything, you’re doing a great job and have helped me so much 

Yes, when I post the paper, folks will actually come back to me and say that they think that the paper had been written just about them.

But I would always then 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 and set out 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 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.

If you have looked through some of the other posts in this group you may well have seen me talk about the Invisible Ruck-Sack.

I often talk about the concept that when we first get our cancer diagnosis we all get an invisible ruck-sack put on our backs.

We then walk through our journey including our treatments, clinics, blood tests, scans, side effects……. and unknowingly, we continually throw stuff into the ruck-sack…… and the stuff builds up. It’s only when we finished our treatment (rang the bell) and look to try and ‘live’ life we realise that it’s not that straight forward.

This is due to the weight of the ‘stuff’ we have collected in the ruck-sack pulling us down…. stuff like pent-up anxiety and stress, the ‘what if’s’, the difficulty in seeing a way forward with life, the disappointments around how some of our family and friends supported us, the silly things people said during and after treatment….. the list goes on.

There comes a time when we hit ‘the wall’ and this is the point when this ruck-sack needs to be taken off our backs and over time cleaned out.

It’s not an instant fix but a process…. but the healing process can only start when we are willing to do it and to achieve this we often need help so have a look for Local Macmillan Support in your area.