November the 5th will never be the same again

Hi everyone,

Sorry this is going to be a long one even just a way of getting it all out 

So after some of the worse few years of my life that included getting divorced, losing a baby , the love of my life breaking my heart and now waiting for an ADHD diagnosis, my one consistency my whole world my mum has been told she may have cancer.

It's funny how it all started really, she got covid in January, thing is she didn't even know, her ex had got it and when he tested positive we all went and got tested and she was the only one who was positive. I had a small melt down with covid being so unclear but once we realised she would have been most of the way through I managed to calm down. 

Covid has led to months of nausea, poor appatite (which has played up with her type 2 diabeties) and the taste of absolutely everything she loved being revolting and has cost me alot of time and money driving all over finding whatever it is she can tolerate to eat that particular day.

After continuos complaints to the doctor about the nausea and trying 1001 different tablets and concoctions the doctors finally referred her for an endoscopy, roughly the same time she had developed a lump just inside her anus and with multiple visits to our doctors who we have known my whole life were reassured was just a hemmeroid.

The lump has got bigger and bigger and is now on the outside of the body. Finally the newest doctor in our surgery put mum through to the hospital stating I don't think it's cancer but it's good to put on forms to speed the process through.

First of all she had the endoscopy and a biopsy which has come back clear but she went sent for a CT scan just to "cross the t and dot the I" and to be honest we never thought much of it. In the same week she had been asked for an MRI for the lump below, make me laugh as by this point she had been off work for around 6 weeks because the lump was so painful that when she walked if she knocked it she would collapse through her legs spasming and found the only place she could fully lay on her back was in either of the machines which is typical because she would chose her comfortable place to be an extremely expensive piece of machinery I am unable to replicate but Im rambling now.

She was told the biopsies in her stumock were fine but that they would like to redo the scan as a full body scan which was odd but she went along.

This is where is gets messed up.

My mum was invited to a hospital appoint for the next day but not really given any information as to what it's for as by this point she has two consultants one for her stummock and one for what we now believed to be an abscess on her anus. She hadn't told me about this appointment as I was at work and she didnt want to worry me and instead takes our friend/lodger. When she gets called in to see the registra who is doing this particular appointment she see's he is the registra of a respiratory specialist. She sits down facing this very young doctor who has big doe eyes on and this is what he says to her....

Im so sorry to be delivering you this information but I'm afraid you have lung cancer. It has taken up the entire right side of your chest and from what we can see is completely inoperable. we aren't sure if it has reached the lymph nodes but we are pretty sure it has and we suspect it is connected to the lump on you anus and that it is also cancer.

Expectedly my mum is in complete shock. She went on to ask if there were any treatments and if he knew how long she had to live to which he went to answer but she cut him off explaining she didn't want to know. He said he would book her in for a lung biopsy and a PET scan and then sent her on her way.

I had got home and found noone was here, I checked Google family and saw mum was at the hospital and immediately panicked. I called a few times but she wasn't answering but eventually when she did she burst out crying and blurted it all out.... What was left of my world came crashing down around me. I knew she wasn't far from home so excused myself and promptly threw up. I can't really relay the rest of that day back other than there were alot of tears and alot of questioning the religion my mum had believed in for so long.

Luckily my mum is an incredibly intelligent women and can pick apart any statment to the bare bones to get the information she needs and it because very clear that yes there may have been a large shadow on the scan but she had not had any biopsies and without those he could not diagnose her. 

Between us we spoke to McMillan and a few of the nurses we saw on appointments and managed to get ourselves in a reasonable mood bar a mishap of mum waking up mid lung biopsy.

She finally got an appointment to get the biopsy done on the anal lump and i dropped her to the day surgery (she was in to much pain for a regular biopsy and needed to be fully sedated) and had a visit from the same doctor who diagnosed her originally basically backing up everything he had said in the first appointment and sending my mum into a crying breakdown and promptly left.

A few minutes later the head surgeon came in to see her to see why someone had changed her appointment from first to last and found my mum mid breakdown. This doctor was incredible, he listened to her from beginning to end and when she had finished was very angry with the way she had been treated backing up everything people had said about biopsies, PET scans and bedside manner. He took it upon himself to pull all the information together and rearranged her appointment for the following week. 

So jumping ahead a week. I've just dropped mum in for her biopsy, she's had another lovely visit from the surgeon who has said from the looks of the lump that if it is cancer is a rare type but that he treated before and responds well to radiotherapy, and I'm on my way to get her car MOT done. Then I get a phone call and it's the respiratory department asking us to come in the next day for results.....and my heart sinks..... I spend the rest of the day crying and if I'm honest popping a few strong pain killers to take the edge of the panic off (my friend had been driving my mum to and from the hospital because his car is bigger and she is able to lay down on the back seat fully and on less pain) and when we get the call to pick her up I am dreading telling her about the appointment.

She is fairly spacey when we collect her and seems happy to be able to sit without feeling any pain, obviously we know this won't last so are trying to get her home as soon as possible. Mid conversation she mentions these results and I use this as my opportunity to drop the news and as per my expectations she is still slightly buzzed so takes the news well.......but not for long. She spends the rest of the evening staring into space, not eating and barely sleeping. I've moved her room downstairs so she can access things easier due to the pain and stayed in her room that night to help if she needed after the biopsy.

Neither of us sleep and we are exhausted the next day, she's in and out of sleep most of the day but eventually I wake her up and 2 and try and get her to eat and drink something. As I'm helping her dress she starts crying and saying she's in too much pain to go.. I know she's lying and I know she's scared. But I have to push her to keep dressing and to let me help her to the car something my family have had to tell me because I will give in to not see her in pain.

We get to the hospital and all three of us are physically shaking, can't hold a cup of water and any mention of the name of that terrible doctor sends my mum into a panic.

Eventually we get called in and the doctors mentions light heartely about how many times shes visited the hospital in the last week and she goes into a full breakdown of how his colleague had destroyed her with his poor attitude and terrible bed side manner and that if someone else that could have pushed someone to commit suicide.

The doctor apologises and says he will pull him up to which my mum says that he needant bother as she will be filing a report but doesn't want any money from the NHS.

This is where again everything changes 

There is no official diagnosis there are pretty sure it is cancer but it has not reached the lymph nodes and the doctor said he is sure that it will be treatable. The relief was unbelievable and my mum cried because even though there is still a high possibility that it is cancer the doctor has given us hope and a release from the hell we have been living since the 5th of November.

  • Hi

    I am so glad you managed to get that story out, I can see how much this has impacted on you both. There are some parallels with our own story and perhaps the best I can say is that I hope whatever is happening gets resolved sooner rather than later.