To give you an overview of the last couple of months. End of April I had my regular 3 monthly cancer check up. As part of my blood results I have tumour markers which are specific to my stomach/bowel. There are many tumour markers that check for other cancers in other parts of the body too. Anyway, these came back high and rising which obviously rang alarm bells. I’d already had a CT scan, so the next step was a PET scan explained in detail here  My PET scan showed two ‘hot spots’ one in my stomach and one in my bowel basically indicating something being awry without being definitive. Next I had a MRI scan on my stomach and bowel (slightly different to a standard MRI) that shows a 3D image of your insides. One of the hotspots was dismissed as being ok but my bowel looked as though it had a polyp. I was told it didn’t look worrying but no one could be sure until it was looked at and biopsied. So I was booked in for a colonoscopy and an endoscopy (I was due one in August so we moved that forward). As long term readers will know a CF patient having a colonoscopy is not the same as a regular colonoscopy. I had to have a low fibre diet for a week followed by a liquid only diet for 3 and a half days while drinking 3 liters of laxatives each of those days. It was exhausting.

I had the endoscopy which was fine. The colonoscopy however didn’t show a polyp but did show a problem in a portion of my bowel. It’s technical name is an intususection or ‘telescoping’ of the bowel. This is not my area of expertise but this is how I understand it. Imagine a telescope, how one piece fits into the other, that’s what’s happening in my bowel it rubs together and can be caused by a few things as well as having the potential to do some damage. I could actually see it on the screen while having the procedure, the bit I could see was ischemic, or had suffered a cut off of its blood supply. Even I could clearly see it was stark white compared to the pale pink healthy bowel around it. The dr took biopsies and reported that everything else looked fine. 

Last Friday I found out that the biopsies were all clear of cancer. So why had certain things shown up? 

The answer is we don’t know. 

Now I am obviously very happy there’s no obvious cancer. I am also extremely complex, unique and medically have a lot going on so we aren’t exactly sure why things are showing up. I’m also extremely frustrated, it’s not a clear cut no cancer. It’s very open still as to not knowing exactly what’s happening but having ruled out as much as it’s possible to. To be honest it feels like there isn’t any cancer showing up.....yet. It’s been enforced even more emphatically that the 3 monthly tests are the way to go forward especially as I am high risk of reoccurrence.

I have very little idea about the intususection. Don’t google it is all I can say! It may need treatment it may not. I will however need another CT scan which I’m scheduled for tomorrow. 

I haven’t been coping well. Writing this down is the basic bones, it’s not the lengthy waiting for tests or results, it’s not being exhausted from the extra hospital visits. It’s not all the clinics and dreading my phone ringing. It’s not making plans that need to be cancelled and it’s not the feeling of everything feeling unfinished and like I can’t make plans just in case. I was told last week that the next cancer stuff would be in September. I booked a theatre ticket for this Saturday. Yesterday I was given a CT appointment for Friday, silly as it seems having a chronic illness and plans changing like that really messes life up. I plan each week carefully according to how I am and space out activities to give myself the best chance to be able to do them and not feel awful or have to cancel. 

About ten minutes after the scan booking I had another phone call about a hepatology appointment that I’ve been on a waiting list for (so long I’d forgotten it) to book me in for next Wednesday, I declined. I have a counsellor appointment on Monday and Harefield for a clinic I’ve had to move twice already, on July 1st. Also at least another appointment to get the results of the bowel CT.

It has overwhelmed me. I’m fully aware that some people live their lives with more hospital visits than this, and that I am very lucky, but at the moment I can’t cope.

I feel as though all the things that made me me, have disappeared. I’m confused, constantly frightened, depressed, anxious and exhausted. I don’t feel I’m recovering mentally or physically between disasters or tests. I’m bursting into tears often and more than once I’ve cried for hours unable to stop.

I’ve  cut right back on my cake work. I’ve also been thinking how impossible it would be to work anywhere at the moment, constantly having appointments and a decline in my health means there’s no way any company could accommodate me. I’ve missed so many activities this year including things I’ve paid for and lost the deposit, around £150 so far, it feels easier not to bother. The things I have managed to get to I’ve often rearranged at least once. People see photos of me doing something on social media and quite rightly assume I’ve gone out and had a lovely time. But I don’t take pictures of the desperation to sit down, the evenings stuck in the loo with violent stomach cramps, the days after not being able to do anything or the syringes of oxycodone to help my pain. They don’t know the anxiety and planning that’s gone into getting me there.

Ironic as this sounds, I am aware that this is a ‘good’ time for me. I’m not in rejection, I have no obvious cancer; I should be going and doing all I possibly can while I’m able to. Except I’m not able to.

I feel so far removed from everyone else I’ve pretty much stopped talking to any one. I have also been hurt by the friends who have completely disappeared except for the odd comment on Facebook saying they will always be there for me. Someone said to me (not in any accusatory way) that they hear how bad I am but then I’ll put a photo of a cake I’ve made and they’ll be amazed... it made me feel quite guilty.  The fact is I constantly worry people think I’m over exaggerating my illness when if anything the opposite is true. Anything I do is planned so carefully. My parents ferry me around, cook, clean and help me in many ways majority of the time. This is so my energy can be reserved for things I need or want to do. Cake decorations are often made long in advance and I will nigh on kill myself to complete an order if I say I will, I’m that kind of person. It’s not a criticism of anyone but it all adds to the feelings of depression and inadequacy.

Dating, having my own home, my own family, feeling well enough to travel, having a career not just a job, have all been shelved. As has really making a go of something with full force rather than hanging back because I’m not well or ‘hospitals and health’ come first. It’s like I’ve whittled down all the things that were important to me to lesser and lesser ideas and even those feel impossible right now. My sole reason of existence is to fulfill my illness requirements and that is such a horrible waste.

I look to the future and just can’t face it. What if in September this whole cycle starts again? Another nearly 3 months of hell having tests and worrying sick. Aside from feeling awful and having just been pushed too far. Everything is a struggle. The lines of relative normality that I cling to have shifted and I can’t hold on anymore. I feel worthless and find it so difficult to relate to others, I have no idea why anyone would want to spend time with me right now. I certainly don’t.

I’m craving something good to happen. Genuinely to realise there are things worth trying for but even then it just feels exhausting to consider. I dream of checking into a gorgeously plush hotel to recover but I realise I won’t recover, health may change but it’s not likely to dramatically improve. 

In short I’m lost. I’m not saying I’m sucidal or there’s nothing to go on for. I’m saying I honestly do not know how to go forward anymore. More than anything in the world I want to start feeling better, to recover my identity again and find a way where life isn’t a struggle but the joy I know it can be.

Xxx