Life after cancer

This group is for cancer survivors and people who have finished treatment. It is a space to discuss things like the physical and emotional after effects of cancer, returning to work, or trying to move on with your life.

PTSD

Chulla
Posted by

PTSD.   I have just had my third major surgery and so traumatized my counselor says it is PTSD and living with cancer which the surgeon says has been removed. He said last year he had removed the cancer and cured me !! The year before I had the colon removed a different hospital.

since a terminal diagnosis in 2017 of Colon Cancer which metastases to my Liver i have had about   20 weeks where I have not been On chemotherapy and the reason for that would be hospital stays and 3 surgeries. Each time I suffer really very badly from the pain relief drugs ,it is horrendous. I agreed to this recent surgery after a discussion with the pain management and agreed to an epidural. 

I was the worst i have ever been, with constant hallucinations , not knowing where I was , and fear, it was extremely difficult and scary. The first and second time of surgery was difficult and persuade the pain relief would be managed i continued, I asked if it is likely (I believe the statistics are about 5 years clear)

What happens the answer is the same as the last 3years. Chemotherapy and surgery.

I can't go through the effects of the drugs again  i still feel anxious and get palpitations thinking about it all.it is down as 'Cameron's my notes. I also feel embarrassed and let down.

So my life after cancer is 'anxious ' and I feel utterly lost

Ps my first experience with cancer was aged 7 childhood Leukaemia and I have been to appointment at the same hospital  each year since and still do now for checks and require d treatment. That's 42 years.

Chulla

buttercup01
Posted by

Oh my Chulla, no wonder you've got PTSD, having been living with cancer for so long.

I'm glad you are seeing a counsellor n hope that helps you deal with things.  It seems like your life after cancer has been more cancer.

The statistics are just that - we are all individuals n though you've been dealt a particularly poor health hand, you may still beat those statistics. I've been living  with kidney cancer n subsequent mets, including in the  brain (treated by Cyberknife in 2013) for the past 14 years n am regarded as an " anomaly  by my oncologist.. Probably means I should be  dead! But I've no intention of doing so just yet.

Sending u a virtual hug x

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
Thehighlander
Posted by

Hi and sorry to read your long and the ongoing issues you have been having but a warm welcome to the Online Community, a place that you can talk in safety to people who understand.

Every cancer journey has its ups and unfortunately, lots of downs. Keeping on keeping on can be easy to say, but very hard to achieve.

My 20 year journey with a Skin Lymphoma has had its 'moments' but as says......'She has no intention of giving up yet"

Talking with people helps a lot, I have a very good support network but did have moments where some 'face to face' support was good for me, it just a lot of stuff that I was carrying around in this invisible rucksack in place, actually threw some stuff out and now forgotten.

The Online Community has a few support areas and see see that you have found some of them.

We do have lots of general Cancer experience groups.

You may find our various Macmillan Support Line Services to be helpful - call them on 0808 808 00 00 This free service covers Emotional Support, Practical Information. Clinical Information, Financial Support and Work Guidance mostly open 8.00 to 8.00 but check the link.

We also have our ‘Ask an Expert’. section where you can post questions to our mostly Volunteer Experts but please allow 2 working days to get a reply.

As I said talking with folks who have been on the same journey helps so check to see if you have any Local Macmillan Support in your area or a Maggie’s Centre as these folks are amazing.

But we are always around to help out as best as we can.

All the best and another virtual ((hug)) from me x

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela

buttercup01
Posted by

Thanks Mike!

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
Midnightfish
Posted by

Hi Chula 

Sorry to read your story, you have really been throughtoo much.

I too have a councillor for ptsd.

I was diagnosed with leukaemia at 16 months old, back in the early 70s when treatment was in its infancy, and brutal. I blocked all memories for almost 20 years, they came back as flashbacks and night terrors which i deal with by writing down every detail that i recall each time. 

The chemo (no hickmans or central lines then) they used to send my parent out, hold me down or tie my wrists to the side of the cot so they could cut my vein with a blade to get a needle in. 

The lumber punctures,  again i was held or tied down, parents out of the room, i was told they had left as i was being bad screaming.  They injected ketamine first which caused out of body hallucinations terrifing for an adult but this went on each week while i was 2 3 and 4 years old.

I then had cranial radiotherapy which i discovered only 2 years ago has left me with multitude brain tumours, the first was removed 2 weeks after diagnosis, the next is inoperable. 

The ptsd has left me severely needle phobic, it took the an hour to look for a vein as i freeze then shake uncontrollably. 

I remaned at the same hospital until  i was 20 before being transferred to an adult hospital. I am now 47.

I had a.l.l but had complcations that spread to lung and lymph. I caught pseudonymous while neutropenic wich destoyed my abdominal skin and muscle chemo had to be suspended while this was treated and skin graft done..i was in for 6 months that time. 

You are not alone, happy to talk more if it helps

Midnightfish 

Chulla
Posted by

Oh your reply hits me deep we have been On the same path i too had cancer as a child I was 7 with ALL

Acute lymphoblastic leukaemia . And yes it was brutal treatment, mustard gas, lumbar puncture left in corridors to have purple line painted all over for radiotherapy which while saving my life left permanent damage all over with burnt ovaries and endocrine problems throughout my life so far. And yes there is was trauma from the experience. I was told at the hospital that I still go to for treatment from the side effects of the ALL treatments e.g. Addison disease that a lot of patients who lived from those early cancer treatment especially radiology have gone on to develop further different cancers possible due to cell damage. No help in knowing that really, except I told them that after going to the same hospital for 42 year CBT wouldn't work.

So I think I know where you unfortunately are and here we go again ...?? My Nurse says I should lift my barriers this is as much as I can do because as an adult we are now in control of decision making but have no control in reality and I think this time I will break.

Happy to talk

Thank you

Chula who by the way is my cat who gives me strength and makes me laugh.

Chulla

Chulla
Posted by

Ps I'm in hospital as I write this, taken very ill friday, a bit better now on drops ect,

but isn't it great how some thing like suspected Gastroenteritis can completely floor us.

Chulla

Chulla
Posted by

Just re reading your post, thanks for the hug...back at ya!

Hope that you are still proving them wrong.

Chulla

LisaCardiff
Posted by

Hi,

I think I have PTSD, after the cancer has now gone thankfully but also after 4 lots of major  life changing operations leaving me with a colostomy and an urostomy. 

I saw my GP last week and told him about the PTSD and he just looked at me and referred me to “in house counselling” and the waiting list 6 months!. While I am grateful, it doesn’t help me. I need to see someone and be diagnosed and treated. I don’t want tablets but help and therapy. I am so scared of going to hospitals and my annual MRI scan is coming up in the New Year and I am so terrified I really cannot go.  I am not saying I am more important or my needs are, I really need help. 

I was wondering if anyone else feels the same? I try to avoid hospitals at all cost but I was admitted 3 weeks ago as I had a bowel obstruction which was caused by scar tissue from my previous operations. Thankfully from all the scans and blood tests say everything is fine but I literally go into meltdown (and I did) when I go to the hospital.

Thank you all reading and have lovely day.

Lisa

Cazza169
Posted by

Hi Lisa.

Do you have a local Maggie's Centre. They offer free psychological support and have specialist nurses available to talk to and lots of group sessions as well. I have been having terrible emotional melt downs and contacted mine last week. It's the best thing I have done. The specialist nurse was a great help and is referring me to their psychologist. There is a wait list but there is always someone there available to talk to until that happens. They have a website you can take a look at. 

Cazza

Cazza 
Thehighlander
Posted by

Bump for Maggie’s Centre near you.

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela

Cazza169
Posted by

Thanks . Still new to all this so don't know how to do those links

Cazza

Cazza 
LisaCardiff
Posted by

Hi Cazza,

Thank you for kind reply.

I do have a Maggie's Centre near me, however the thing is I can't go anywhere near anything which is related to cancer. I can't even go for my annual MRI, the fear is that bad/great. I hyperventilate and nearly pass out. I need a diagnosis and treatment which is away from that.

I will keep it in mind. 

Thank you for your kindness,

Lisa

Cazza169
Posted by

Hi Lisa

I can understand that. I felt a bit like that. It might be worth contacting them anyway if you feel able to and explain your situation. They may be able to suggest somewhere else that may help.

I hope you are able to find something that works for you. 6 months wait for NHS help must seem like forever to wait but hopefully that will help when you get it.

I have also found this forum a great place to find people who understand the emotional turmoil and can help in small ways.

Cazza

Cazza 
Thehighlander
Posted by

Hi Lisa, I am so sorry that you experience these challenges, there is no simple fix for this but a fix is required as with this in place you can try to move forward with life.

Maggie’s Centre do have a help line just the same as the Macmillan Support Line Services on 0808 808 00 00 even the step in talking with someone is a good step in the right direction.

I have lived with my cancer for 20 years and did well until I had to have some full on treatment and mentally continued to do OK.....physically was a challenges.

But i have had a number of friends died from cancer over these years and out of the blue I was struck down with 'survivors guilt'...... a rather debilitating space.... where I continued to play '......Why did I survive?"

One morning following a clinic appointment I found myself walked through the doors of our Inverness Maggie's..... after years of attending sterile cancer facilities but this was not an in your face cancer facility, it was coming into someones house where you can sit round 'The Big Family Table' and have a coffee.

I think you have diagnosed yourself and in reality you will have to see a professional..... and I would imagine that a very high percentage of these professionals will be based in a hospital GP environment.

Tomorrow you could make a choice to make the first step, walk into your local Maggie's and find a friendly ear.

((hugs))

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela