Friday 28th November

Our son had been vomiting for most of last week, so my husband took him to the GP this morning. They were then sent to the local hospital for a CT scan. When I finished school at lunchtime, I went there to meet them.

Arriving at the front entrance, to be told by my husband that our son has a large tumour in his brain was just heartbreaking.

The director of the hospital showed me the image from the scan, and it is quite substantial 4.5 by 6.5cm.

Having waited for the saline drip to finish, both my husband and I drive to our major hospital. A medical emergency.

We make our way to triage, and wait to be assessed. Lots of questions, form filling, and medical checks are carried out.

We are then taken up to the Medical Admissions Unit; a noisy and very busy ward. CT and MRI scans will be scheduled for tomorrow morning, and we will have to wait for the results before we know what is next. It could be oncology and chemotherapy here. Or it could be the neurological unit in Plymouth.

Our son has had iv saline, paracetamol, and a high dose of steroids (dexamethasone). He is on his second saline drip. As we wait for the iv antibiotics to be sorted, he says his head is feeling better.

The vomiting and headaches have obviously been due to the tumour in his brain. Poor, poor chap.

I stay overnight at my son’s bedside, sitting upright in a most uncomfortable hospital chair.

Tuesday 18th November

Only two departments to visit today. Firstly to see my lovely trials nurse for bloods, obs and a chat ~ my son said she was strict and severe, but also called her a pussy cat!

She is wonderful, caring and reassuring, listening to all I tell her. The vials of blood are taken, blood pressure checked (not as high as I thought it would be!), then weight and temperature. I’m asked to fill out a patient satisfaction survey and invited to a research symposium next May: sounds very interesting.

Wednesday 12th November

One year.

Twelve months.

Fifty two weeks.

Or three hundred and sixty five days.

That’s how long it’s been since my surgery to remove the melanoma in my lymph nodes. And all the scans I’ve had since then have shown no spread of the disease.

Being vigilant, eating healthily, drinking lots of water, gentle exercise and taking the medication, which I want to believe is the real thing, and not the placebo. This is my ‘new normal’ nowadays. As well as having a positive outlook on life, and not stressing over trivial things.

Tuesday 11th November

Our son has been booked into surgery and is first on the theatre list this morning. He is seen by nurses, the anaesthetist, and the surgeon. Despite all the previous sickness and anxiety, he seems decidedly chirpy.

He did have a laugh when the nurse showed him his notes, and someone had written ~ “Needs pregnancy test”, on the front!!!! The nurse was cross with whoever had done that!!

He goes off to theatre, and we have to phone at 11:30am to find out what ward he’s on.

When he comes round he is brought to the recovery ward, where he says he is a grumpy patient!

Just after 1:00pm we see the urologist, and preliminary results show no cancerous cells found. We have to wait two weeks for absolute confirmation.

But all is looking good 😃😁

A short time later we get him dressed, and the cannula is taken out of his arm. We wait for the discharge paperwork, and then we are on our way home.

Tuesday 21st Oct

Today is a really, quick and smooth visit to Exeter, firstly to see my dermatologist, then the trials nurse and finally the oncologist. All runs to time, without any problems.

Everything appears normal, and I can again breathe easily.

Friday 3rd October

We got to Torbay Hospital with about ten minutes to spare.

The consultant had a feel, looked at the ultrasound report, and said something is not quite right. The testicle does have a hard mass inside it, but not sure what it is. Could be the result of surgery our son had when he was about five (to correct a hydrocele).

So the surgeon has ordered another ultrasound scan.

Following that we go up for yet another appointment to discuss results.

Worst case scenario, remove the testicle. This made our son very anxious and angry. He got up, shouted I don’t want to be here being treated by quacks and nurses, and promptly stormed out.

Oh, the joys of our son with learning disabilities who struggles in difficult social situations.

So again it’s another wait and see.

Thursday 2nd October

We are off to Torbay tomorrow as my son’s urgent referral to see the consultant urologist has finally come through after almost three weeks. We’re meeting him there, and are going to stay overnight on Friday, look around Exeter on Saturday, do some shopping and home that afternoon.

My results from the CT scan over a week ago came through today as well. A trials nurse phoned to say that they show no evidence of metastatic disease. Phew!!!!! I can breathe again for another three months.

Tuesday 23rd September

Three quarters of the way through the clinical drugs trial and it’s time to run between two hospitals and many different departments. Dermatology, bloods and obs, CT scan, ECG followed by an Echo, and finally the oncologist.

All starts well, but when I sit down with my trials nurse and chat, I start to feel really anxious and tearful. My blood pressure is silly-high. Scanxiety is setting in. For some reason I am beginning to dread the scan ~ or is it the results that I’m worried about. Irrational fears and thoughts are sending my mind spinning. Deep breaths, deep breaths. Hold it together.

The scan itself was quite routine and I’m so pleased when its all over. Just a week to wait for those all important findings.