Low mood

Hi Romy60 and welcome across to this corner of the community. My journey is rather different but at the same there are similarities. 

I was diagnosed way back in 1999 with a very rare (7 in a million) type of Skin Non Hodgkin's Lymphoma (A blood cancer) eventually reaching stage 4 in late 2013 (you can see my full story through the link near the bottom of my posts)

Unlike skin cancer, my cancer can not be cut out so i have had to have some significant treatments over the first 16 years of my journey (750+ hrs of chemo, 45 radiotherapy and 2 Stem Cell Transplants)....... and like you, for the past 24 years I have had to be 'Sun Safe'.... hats, cover up, factor 50, transition lens glasses.......

I must have had over 900 skin treatments of these years so have significant skin damage to my body so I don't tend to go swimming due to the visible signs of damage..... although I will if its a slow day at a hotel pool we are staying at.

I have a significant radiotherapy indentation disfigurement above my eyes on my forehead where my tennis ball sized tumour was and I can't hide it apart from a hat so just leave it apart from when I am out in the sun as this area must be protected.

I think I have now got over the self conscious part of the journey....... yes it's pants (granddaughters words) that I have to be Sun Safe' all the time......even in the midst of a Highland winter....... but I am alive and living a great life,

I think it's all about you taking control of what you can control....... you need to define how you life life...... not let your treatment leftover define you..... this takes time but can be done.

YIt is early days in your post treatment journey so 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.

Do come back to me with your thoughts, questions or just to chat more.

Thanks Mike, i will have a look at the Dr Peter Harvey book. I am trying to define my new life, its the expectation of others that i find hard to deal with. I want to make every day count for me, others expect me to meet their needs first as ive always done. 

If the expectations of others don’t line up with what you have been told to do to keep yourself safe and the pace at how ‘you’ want to move forward ignore them….. if it takes some honest home truths to be given….. give them…… who has been the one on the front line of the cancer journey?

You will find the paper helpful…… send the paper to the others who are putting pressure on you and ask for their opinions as if they were in your shoes.

Hi Romy

I do understand how you feel about your changed look and the challenges it brings. I had jaw cancer and have had 3 major ops over the years. Fortunately no cancer at the moment. With my last op I was left without an upper jaw for a year. I felt really embarrassed about the way I looked and wore a mask when I went out. I would only let family see me without one and having my photo taken was a no no. My grandkids didn't even seem to notice which was amazing. I was on the waiting list for some reconstructive surgery for a year. I decided that I could not mark time while I was waiting so I joined an exercise group and started volunteering at my local library. This really helped me feel that I was getting back to some normality in my life and helped me move forward. I have been very lucky and have now had reconstructive surgery although my lips still don't meet together properly but compared to how I looked before it is a 90% improvement. I have to take into account now issues that I have as a result of my surgeries and evaluate what I will become involved with where before I used to just go for it. However I still live a very happy life but it just means that I have a new normal.

You do need to put yourself first and work out what you are able to manage within your abilities/limitations. You will then carve out a different life for yourself but it can still be amazing. We are so lucky that we have been given another chance at life and we don't want to waste it.

You will get there and your family will adjust to the changes in how you want to live your life.

Lyn

Hi Mike

Ive read the paper by Dr Harvey and its helped a lot, i think it has helped to acknowledge and legitimise my feelings and that has helped me see a way forward. Thank you for recommending.

It’s good that you have found it helpful. When you feel that you are not being listed to or you are coming under pressure get the people to read the paper.

I would always challenge folks who have looked at the paper 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 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.

Thanks Mike for those prompts, i have a pen and notebook ready to start today. I've already discussed the paper in full with my hubby and he plans to read it too. He has been amazing throughout my journey but I think he will also benefit from reading the paper. I feel empowered for the first time in a year, thank you

This is great to hear, defining how you navigate the way forward is ever so important rather than letting your treatment journey and family and friends expectations define you.

Do come back and tell me how you are getting on

Hi Mike

That is so helpful. I hadn't realised that I had unconsciously followed most of the headings you outlined. Listing them is such a good idea though. It does make you reflect and realise how far you have come from you initial cancer diagnosis and move on. Losing trust in my body was definitely one of the biggest things I had to work on. You tend to take for granted that your body can do anything but then you are suddenly confronted with it 'letting you down'. It takes a while to adjust to that and adapt to the changes and working through new ways of managing where before you didn't even think about it. I also found writing down how my cancer journey started and what happened really helpful. It was not for anyone else to read just for me to try and make sense of what had happened. It brought up quite a few emotions. It was the one thing that I had control over when everything else was out of control. Coming to terms with a life changing condition such as cancer takes time, some adapt faster than others but as long as we eventually are able to adjust and move on with our lives that is the important thing. There is definitely still a happy life to be led.

Lyn

p.s I think your grandkids look adorable. I find mine help keep me young and I always sleep well after they have come for a visit.

Good morning Lyn Sophie66 yes our 4 girls are rather amazing and one of the many reasons to keep my wife and I going over the years of my treatments. We will have them all together for a few night, on our own!!!! in a few weeks time 

I am always amazed as to how people develop the ability to navigate the cancer journey, there are not one size fits all but it's good to see how other do it and pick and mix from others experiences....... and the Peter Harvey paper encapsulates a lot of good building blocks that can set a foundation.

Coming from 20 years in Education (University Lecturer) and my early years working in manufacturing Joinery...... all my working life I have always had the mindset of "begin with the end in mind"...... and the great quote of Winston Churchill "He who fails to plan is planning to fail"

So when I was first diagnosed 24 years ago..... we (my wife and I) stated a diary/notebook.... we now have a good number of them. these contain all the medical stuff, appointments, questions we asked, answers we received...... all the good and bad information that we were told.

But the back pages were where we noted out feelings, the challenge and what we were doing or going to do to deal with these. We also had out ongoing 'dream' list.... not a bucket list, but a list of the things we would have looked to do anyway if cancer had not come along....... When we look back we see lots of dreams fulfilled and others we are still working on.

We may be very fortunate in that neither of us have a panic button...... rather a mindset that says.... "so what can we do to overcome or improve this?"

The answers sometimes don't come quickly but the main focus has to be on the greater good all the time.

A number of years back I did a reply in this group and the Community Team picked up on it and made it into a blog Climbing up a craggy mountain.

We all have our very own mountains to climb, we climb them which every way we can but climb we must ((hugs))