LifeTides

November 22 Cancer Treatment 

So we’re into November, and I’m still amazed at how quickly the months go by, and wow, Christmas is next month. And I’m reminded that in the Autumn of 2019, my cancer journey kicked off similarly as I now find myself.

A mass that’s getting larger has begun to slow me down, both on the bike and walking. I am getting full quicker and look fatter around my belly area. My breathing is affected, but not in the same way. Thankfully there is no fluid in my lungs. (small blessings are always welcome)

On November 4, Richard reminded me that this was a CT scan-assisted biopsy, not an ultrasound one. So I’m like, how do you know that? Funnily he said I actually read your appointment letter. So he dropped me at the hospital, and I went to the day intervention ward for my biopsy and was they just before 10 am. So then, I had the usual check-ups and forms to complete. I got into the gowned and watched the world go by, and they came for me at 11.45. They said I should get onto the bed with my dressing gowned and slippers off, as it would be easier.

It was a long way to the scanner room, one I had been in before, and one of the scanner team recognised me, a frequent flyer.

The Radiologist went through the procedure, and I signed the consent form. Then, I was asked to roll from the bed to the scanner bed and lie on my front. The Radiologist said he couldn’t go in from the front as it was sitting in an awkward area, and the needle would go through too many organs.

They ran the scanner to get an updated picture. When the scanners is running, they all disappear to the control room. Then they came back out and checked I was ok, and he marked the area with a pen. Then he prepared the area. The sterile kit came out the iodine was freezing and made me tense up. I laughed, and he apologised.  The local anaesthetic when in, and he inserted a needle in about 4cms. Then they all disappeared to the room, and I got another scan. He came out very happy the needle position was in the right place, just a bit way from the left side of my spine. And so he began to push the needle in deeper, adding more anaesthetic as he went. I was to shout out if I felt any pain. But I didn’t need to, as he saw a twitch in my body before I could say ouch!

He chatted all the time like we’re going through the muscle now. You might feel it. We are nearly there. Well, the needle had landed. What followed was the easy bit, the sample gun makes a loud noise, and you don’t feel it. The anaesthetic was working a treat. He took three samples which he said should be enough. Then they patched me up and stuck a plaster over the small wound.

I rolled back onto the ward bed and changed my gown, ready for the return trip. I asked if the mass was more significant, and he said yes and would report the scan results to the team. It made sense as I had noticed a difference. It was getting more prominent in my tummy area, as I had the usual feeling of being full all the time.

The nurses took me back to the ward. I’d been gone for an hour. I had to stay flat on my back for two hours, and then I would have an hour sitting up before leaving. Wow, it’s hard to do lying on your back when you have to, but I still had my earbuds, so I caught up with Wim Hof’s podcasts. When I finally sat up, I was also ok to get dressed and use the toilet. What a relief! Then the tea and toast arrived, just to my liking. So I called Richard and gave him notice to come and get me. I asked if he would come to the ward reception. As he could carry my rucksack, then I could concentrate on walking! I had low blood pressure whilst lying down, but it started to pick up while sitting.

Richard arrived, and the nurse took me back to reception, where I was delighted to see him. So that was me. It was a long day, and it was over. I hope the results will come through quickly, so we can get a treatment plan underway before it again takes over my life. My clinical nurse confirmed I would see her and the doctor on November 18 and that the results should be in by then. So we parked it and got on with life.

November 18, and it had been raining non-stop for three days. Luckily we only had one road closure, and easy to get around it.

So it is still low-grade Follicular Lymphoma, and it is disappointing. She said it was quite a difficult place for me to be in, as I have had so much treatment. But there is a plan, phew.

I was happy that they would put me forward for an outpatient drug trial at the Western General. They will use Lenalidomide as the primary drug, which helps the immune system attack the lymphoma cells and prevent lymphoma from growing. I will also get the new trial drug or a placebo along with Rituximab which I have had before. So it’s all antibody therapy.

So, we had a wee day out with friends to the Japanese Garden. It turned out to be a beautiful day after having three days of constant rain. It was just what we needed.

November 29, we meet with the trial team at the Western. They have several tests to complete before I can be accepted to the trial, including a PET Scan on November 30 and a bone marrow biopsy on December 2. So it was a lot of information to take in. And I’m glad I used my meeting transcription app, Otter. I use the free version, and it’s brilliant. I always ask if it’s ok, and I have never been refused. It records the voices and then creates a readable pdf. Sometimes it does get words wrong, especially the medical ones, but I can just playback the meeting and hear the word spoken. They took blood, did an ECG, etc., and then we were released and headed home. Not the nicest day for travelling with heavy fog. But we were home in good time.

November 30, we headed down to the Royal Edinburgh to get the PET Scan. Fortunately, I knew what to expect, and it’s just the time it takes to get done. So Richard dropped me off and headed back to the car. They administered the Fluorodeoxyglucose radiotracer and left me for an hour while my body absorbed it. They keep their distance as I am radioactive for about eight hours. Then, they collected me for the scan, which took about 25 minutes. And I did a wee meditation and was so relaxed I noddy off near the end, and when they said that’s it finished Carole, I woke up with fright. All I can say is I must have needed a wee snooze. Finally, we were released and went straight home. I was still radioactive and would be for a while.

So there we are, lots going on, with the usual wait for the results. My fingers are crossed that everything is ok and we get to start the trial quickly. It will mean a lot of travelling to Edinburgh, but worth doing if there is a chance of getting an extra drug and helping to get it approved for other Lymphoma patients.

Maisie and Gracies are doing well, staying in a lot more, we treated them to new winter beds, and I think they like them!

Stay well, folks. I’m staying in the moment and happy to be getting things underway.

Carole