3. 22nd MARCH 2021 - INITIAL BREAST CLINIC APPOINTMENT

So today is the day. What will we find out?

I drive to the hospital, put on my face mask and make my way to the clinic. It's fairly quiet as Covid has reduced numbers and people are attending alone. I think that even if there were no Covid restrictions in place, I would still be doing this alone. It is just how I deal with things . I am the mum, the wife, the coper - I protect my family until the moment that I can't - oh and I probably haven't mentioned that I am also a complete control freak - so that bodes well for what is to come! The clinic is a calming space but I still can't relax. I just sit alone waiting to be called.

These clinics generally run late, and I don't begrudge that. Everyone needs to have as much time as they need - who knows what questions will be raised, what emotions will be brought to the surface? You can't run it to a strict timetable - it takes as long as it takes.

Eventually I am called through by a Health Care Assistant (HCA) and taken to see a Locum Specialist Registrar (SpR) - not the Consultant I was hoping for, but that's fine, I work with SpRs and they are (mostly) perfectly capable.

This one not so much - I'm sure she was competent, but her bedside manner left a whole lot to be desired! She mostly ignored me but told the HCA to get me on the couch. I was handed a short gown and told to remove my top half. The SpR examined me by feeling around my breasts, locating the lump etc, she explained nothing but said I now had to go and have a mammogram and ultrasound. This is a 'One Stop' breast clinic so all tests are done at the same time. She then turned to the HCA and said 'she can go' - not the most comforting of experiences!

I was taken through to the mammo waiting area and was soon called through by A, who did as she had promised and ensured I was looked after by her. I have only had 1 mammogram before - 5 years ago, typically I got my letter inviting me for my next routine one 2 weeks after this! It was slightly uncomfortable to try to get me into position but it was also very lighthearted and we laughed a lot - its always nice when a friend has to fiddle with your boobs! A eventually got some good images but couldn't say what she had seen obviously - I would never put her under that pressure anyway. I later found out that Tilly wasn't clear on the mammo anyway - it just looked like a bit of calcification - this would have been followed up if I had just been screened routinely - but would have delayed everything.

It was then back to the waiting room to wait for the ultrasound. This was to be performed by a Consultant Radiologist, not one I knew as he does not work on my site but he was very handsome and courteous (not imperative to the process but very nice nonetheless!) The ultrasound wasn't uncomfortable but he was concerned enough with the results to also need to do a biopsy in both Tilly and my lymph nodes. This wasn't entirely unexpected, I work in radiology and understand the processes. I also believed that the news was going to be bad so a biopsy was definitely going to be on the cards.

The biopsy took a little while but wasn't painful due to a generous injection of Lidocaine. You lay on your side with your arm over your head, it can take a few minutes to get into the correct position. The Consultant Radiologist will then scan the breast to locate the lump, he then puts in a needle/tube type thing and uses tweezers to cut of a tissue sample from the lump. It is completely painless, a nurse is there to distract/comfort you as needed, and to be honest, I started to drift off to sleep! Once enough of a sample has been collected, a small metal marker is placed on the lump to identify where the sample was collected from on future scans.

He then repeated the process on the lymph nodes under my arm in order to check if any cancer had started to spread. Once he had finished I asked if it was bad news, he said that whilst nothing was certain until pathology had checked, he agreed it did look suspicious - again not entirely unexpected.

I then had to go for a further mammogram to confirm the location of the metal marker but this was easier than positioning for the first one. Mammograms, whilst not exactly painful, can be uncomfortable as your breast is literally clamped flat between 2 boards. It is an interesting experience!

It is now time to see the Locum SpR again, so time for some answers and detailed information I thought. Oh how wrong was I? Her bedside manner hasn't improved and she literally sat me down and ignored me while she wrote some notes. When I asked for the results so far and said that I had been told it did look suspicious, she actually laughed and said ' oh don't even think about it until we get the full results - it will be a few weeks - until then just go home and forget about it'. She then turned to the HCA and again said 'she can go'.

I was so shocked I just left. I was so confused, so stressed, upset, worried and angry that this was the service being offered - so much good ruined by someone so unaware of their patient - just crazy weird!

I found out later that this is not the usual standard of service provided by the breast clinic and I wish I had been strong enough to raise the issue at the time. I should not have been sent away in such distress. Should this ever happen to you please know that the Breast Care Nurses are always available for you to speak to - just ask at reception.

I sat in my car for a while just to try to get my head together and made the decision to tell my daughter and husband that evening, only because of the biopsy, if anything happened with the wound overnight they needed to know what procedure had been performed. It was highly unlikely anything would go wrong but I felt it was better to be safe than sorry.

When I got home, with my stomach churning, I sat my them both down, took a deep breath and calmly explained what had happened so far. I realised at this point that one of the worst things about is seeing the hurt and worry on loved ones faces. I tried to inject some humour into the situation, raising smiles as I explained how the mammogram worked and falling asleep during a biopsy!

Once the initial shock had passed I tried to answer any questions they had - I don't really know what their thoughts and feelings were as we all seem to be trying to remain strong for each other. To be fair, Sophie and I are quite pragmatic, so, after the initial shock and fear, we both took stock and agreed to take it one step at a time, to not look too far forward - we won't know until we know. My husband tried to be stoic but I knew he was terrified, he does not cope well with me being ill, but together we agreed to stay as calm as possible until we knew more. So the waiting began and life carries on.

23rd MARCH 2021 - DID THAT REALLY JUST HAPPEN?

When I got to work today I was a mess. All I could think about was what had happened yesterday, how awful the SpR was and how I now felt in limbo, alone and just so very scared.

My colleagues could see how upset I was and were all so kind and supportive - and obviously now more of them are aware of my hideous news.

I went to see one of our Consultants - just for some advice regarding my results. I explained everything that had happened and he really wasn't happy! He contacted the Breast Care team to explain what had happened to me and to request that any future appointments are to be with one of the Consultants - not the Locum.

That afternoon I got a call from one of the Breast Care Nurses. She was so lovely and was mortified at my experience - she said that I should have been seen by the nurses before I left, who would have explained everything, answered my questions and sent me home in a much better frame of mind.

She said that although my follow up appointment would be a couple of weeks away, the results would come through more quickly and they would call to discuss them. Having spent some time talking to her I did feel so much better - still scared but calm, and, most importantly, cared for.

I appreciate how lucky I am to have been able to access this help - I dread to think about how other patients would be coping - just sent home to get on with things. Hopefully my actions will prompt some retraining of the Locums and no one will leave without a comforting visit with the Breast Care Nurses. Please remember that they are there to help you and will always make time to see you in person or speak to you over the phone. They are dedicated, caring, amazing, lovely people and I know from personal experience that they will always respond to your messages. And life carries on.