LifeTides

We met with the consultant on January 3rd 2020, for the scan results. He had his concerned face on; I had already expected bad news, and it was. He said the disease was aggressive and bulky by the way it had spread so quickly, and they would be treated aggressively. My Lymphoma was at full pelt!

There was a lymph node that had grown to fifteen centimetres, it was the one I could feel and was pressing on my stomach, making me feel full all the time. 

We were shocked when we were told I had 2/3lts of fluid in my right lung. No wonder I was struggling to breathe. The fluid had pushed my lung to the top of my chest. It’s from a lymph node in my chest being enlarged and not working correctly and leaking lymphatic fluid into my lung.

So, the plan was to have the large tumour biopsied to check if it was still Follicular or if had it transitioned to another type of Lymphoma, as this would change the chemotherapy treatment. And a visit to the respiratory clinic to see if they could drain the lung. Oh, and I had to get a heart echo, so we had baseline results as Chemo can cause damage to your heart and other organs.

The plan is 6 x cycles of R-CHOP (that’s the initials of the chemicals used), then go to a maintenance plan of Rituximab once every two months for two years. This all sounded very positive, but heck I had no idea what Chemotherapy would be like.

• R- Rituximab
• C- cyclophosphamide
• H- doxorubicin (hydroxydaunomycin)
• O- vincristine (oncovin)
• P- prednisolone (a steroid)

We updated everyone with the news and kept calm it was treatable, and I would get through it, and we would kick its arse!

January 8th Respirtory Clinic

We met with the Respiratory doctor, we sat down and chatted, and he said they needed to take me in on Thursday to put in a chest drain and that I would stay for in over the weekend.

But first of all, he needed to take a sample, and he asked if I was happy to do it now, “no time like the present”, I said. 

There was no time to talk to hubby, I briefly held his hand as I left the room, and he patiently waited.

The doctor and I got on well; he was a fellow Cyclist. He took the needle sample with the ultrasound guiding him, and he showed me the state of my lung on the screen. The fluid had squeezed my lung to the top of my collar bone. I found it interesting, and I understood why I was short of breath.

Then he went quiet. I said, is everything okay? He said, “I wasn’t expecting that”. He showed me the fluid that had come out. It was thick like custard. He said “this changes the plan”, and he would need to discuss it with his colleague. I asked if we could show Richard the sample too.

Richard was surprised at what was in the container. The doctor left us to chat while he found his colleague. I told Richard it wasn’t painful, and it wasn’t. But, the doctor said, “if they drain the lung now, it will keep refilling until the tumours are reduced”. They decided to leave it alone if I could cope, and I thought I could.

Interestingly he also showed us the CT scan and X-ray, not that we understood the CT scan that well, but the X-ray was impressive.  You could see what was going on. It’s called Pleural Effusion. He said I had about 3 litres of fluid in there.

After seeing this, I managed to adjust my sleeping position and managed to get more sleep.

January 19th Heart Clinic

We were at hospital again on a Sunday, this time to get a heart scan, completely painless, and I got to see my heart beating. So yes, I really do have a heart (haha). This was also interesting to see. They took the measurements and let me go.

January 20th Biopsy

I arrived at the hospital at 8.30. After several questions and checks, I change into a hospital gown.  I met the doctor who would do the biopsy, and he talked me through what would happen. I signed the consent form, and off we went.

Done under a local anaesthetic with an ultrasound to pinpoint the area, so he could see and avoid the main arteries. It wasn’t too painful, some pressure, and I wasn’t flat down, so I was breathing well enough. I found this funny, he said, “I’ll take two samples”, then he got greedy and asked if I didn’t mind, he would take two more.

So it only took 30 minutes, and I was back on the day ward. I had to stay lying down and still for 4 hours. It was challenging as it was uncomfortable to breathe. It took a lot of willpower to keep still. Thank goodness for earbuds and audiobooks.

It was a long day, and once they were satisfied I was not going to bleed out, I could have tea and toast and call Richard to pick me up.   The toast was delicious with real butter. I didn’t realise how hospital toast would become a favourite thing.

On January 22nd, bruising started to appear all around my hips and upper thigh, and there was fluid retention, which I had never experienced before.

January 24th, the fluid was getting worst, and it looked like I had grown a pair of very large testicles and my legs were puffed up. So I decided to ring the clinic and check that this was normal.  They were concerned and said to go to the A&E to get it checked.

At A&E said I should be in haematology, and they got me an appointment to see my consultant within the hour. So I wandered up to the department and saw the doctor, and he arranged for a CT scan and was worried if I was bleeding internally. So I was taken in a wheelchair by a ported, had the scan, and then returned to haematology 30 minutes later.  The results were quick and it was good news there was no bleeding, just very unusual fluid retention.

He was concerned about my breathing as there was fluid showing in the left lung now. He would speak back to the respiratory doctor to see if they would do something.  The answer was the same, leave it for now, or I would need a drain fitted to walk around with, and that’s a risk of infection.

It was a week before all the fluid disappeared, not a nice thing to have, and it was out of my control.

January 31st Haematology Appointment

Today I signed the document to agree to the Chemotherapy treatment. As the biopsy confirmed it hadn’t transitioned, it was still Follicular. So there is no change in the chemo package. It would still be R-CHOP.

The treatment information was printed off and handed to me for bedtime reading. All data comes from Macmillan Cancer Support. If you ever want to know more, it is a good site for reference. And I would start my first cycle on February 3^rd.

Every Thursday, the Doctor’s and Consultant’s get together to discuss all the cancer patients in their area, and together they decide the treatment plan. So it’s not just one person. They all decide what’s the best treatment for you. I like that concept as you pull on so much more knowledge and experience.

They are concerned about the side effects of the Chemo, one of which is breathing, and as I am already in trouble there, it would be good to be cautious.

I would stay on the ward for a couple of nights. They will give the Rituximab slowly as this is the one that could cause the most significant reaction, and if it does, I am in the right place to sort it.

We caught up over the weekend with friends, which was nice as some we’d not seen for a while and chilled.

I was going to get treatment and be on the road to recovery. But I knew it might be hard at times, and I’d need to put my big pants on and get on with it.