Newly diagnosed Stage 4.

Hi Julescariad

I am so sorry you are here and can totally relate to some of your feelings. Your reaction is normal for an abnormal situation. Be kind to yourself and allow yourself some time to come to terms with all these. 

I have bowel cancer, then recurrence twice in the pelvic area and lung mets.  I have 2 stomas now. I was told my condition is incurable with 18 months time frame in December 2024. I felt very low initially. However, after some counselling i have come to accept my diagnosis and feeling much better mentally. In fact the best psychologically since I was a teenager. It is because

1 I accepted I do not have control over the biology. Ultimately cancer is the king. We can try to treat it and control it but can’t really control the results. 

2 I CAN choose to react to any given situation. That is the ultimate power we all hold. I decided to live my life to the value I held most. It could be little things such as getting some flowers/ plants, or meeting up with friends etc. By doing those things it enriches my life and made me much more content and at peace.

3 Have no future is quite liberating, you don’t have the burden to worry about it and the worst already happened. I just enjoy everyday as it comes. 

On the practical notes

I have also lost my hair on chemo the week before Christmas ! However I discovered wigs. They are totally great and look so much better than my own hair. I have quite a few and really like them. Even my own hair is growing back now, I still wear my wigs. This is me in my lates wig

I also would consider 2nd opinions as stage 4 cancer treatment is a bit like Wild West. All sorts of treatments is possible. I can fully recommend Prof Jamie Murphy at Cleveland clinic London. He has successfully  operated on me this January when Cambridge said no. Now according to my oncologist, I shall have many more years instead a few months left. 

Take care x

Hi Julescariad 

I am sorry you are facing this whilst also grieving your friend. I can fully understand how your friend also being stage 4 makes your situation additionally challenging. The good news is that you have a relatively low cancer load at the moment and it sounds as if you were previously in good health. These things can make a difference to your path through this. Many of us on this forum have been stage 4 for some time and live relatively normal lives. There’s another thread on here entitled the long middle which I think captures well where many of us are. 

You ask if this passes, I assume you are asking about the anxiety you currently feel. I can only speak for myself - it did pass once I had had a bit of time to understand and accept my situation. It flares up again each time I have a scan, or if I experience an unexpected symptom. But mostly I think of myself as someone living well with cancer. Hopefully you will reach a point where you can do the same with the job, husband and dogs you adore. 

It is the anxiety I am struggling with. I wake up and I think about cancer, I go to sleep and I think about cancer. It is all consuming. I find scans (got two more biopsies coming up on lymph nodes in the thorax and tummy even though they already know they are lymph nodes in the thorax and tummy, if that makes sense, and the results of the breast lymph nodes next week) almost unbearable. It feels as though there is never anything but bad news. I find the doctors very reserved when I want them to be, 'hell yeah, we will FIGHT this'. I just want to feel normal again and not so scared. Thank you for reaching out - it means the world.

Thank you - I am waiting for counselling to come through via the cancer team. Your wig looks so natural! It's all so much though, isn't it? I feel as though my whole life has become defined by cancer and I hate it. I like the idea of a second opinion - any bit of ammunition! I suppose I would need to wait for all the biopsy results to come through - they want to do additional biopsies on the inflamed lymph nodes in my thorax and stomach - I suppose so they have the full picture before the first three rounds of chemo. Can I ask, at which point did you get the second opinion? Thank you again for reaching out - means a lot. Hope you are having a good day.

Jules

They are going to need the results of all of those tests before they understand whether the tumour in the breast is the source of any of the other issues, and therefore how best to treat it all. They will come up with a plan for you. I can’t imagine you will feel normal once you know exactly what you are dealing with, but I think it does help. The phase of never ending investigations and additional bits of bad news is awful. Hang on in there. 

The wait between diagnosis and treatment starting is the worst. I just feel it is bad news after bad news. I sought  2nd / 3rd opinions at various stages. It is never too early and for it. Those tests take so long to get done then the wait for results. This is a particular tough time. I think just know you will get through it and you can cope. Once the treatment started, you settle into a routine things are easier to manage. 

Julescariad said:

I wake up and I think about cancer, I go to sleep and I think about cancer. It is all consuming.

I used to be like this.  It was the summer of 2022 and my treatment was on a pause.  Even though I read the white papers that a pause didn't alter the long term outcome, I just wanted the treatment to restart, and like you, it was in my thoughts constantly.  I just read everything I could find online, looking for answers or positives.  I was also very aware "I've got to stop thinking about it all the time."  It's not healthy or sustainable.

What changed - time, I think.  Also I was able to restart my treatment and although my markers went up, they were ok to continue.  And things gradually got better from there.  My body got used to the drug and was able to tolerate it.  

I often wonder what would have happened had I had to stop or change treatment.  We'll never know, but there were always plans beyond the treatment I was on, so I suppose I would have re-adjusted to that.  

Yes Julescariad, thinking of cancer is never going to stop. I've been diagnosed since March 2015 and although I try to get on with life I have thoughts of cancer running through my mind almost continually. I have 2 treatments every week in life and it's impossible to forget but I don't allow it to wear me down. 

Take care 

Tvman x