LifeTides

January – December 2021

I was back in for my fourth maintenance at the end of January, and I would get the biopsy results then.

I met with my consultant, who confirmed it hadn’t transformed. It is still Follicular Lymphoma. It’s just that it acts as a high grade. So, the plan was to keep going with the maintenance treatment as I was feeling well. And with COVID19, it was best to leave the stem cell harvesting to later in the year.

I am happy with that because I can continue to get as fit as possible. I never focus on my cancer for long when I feel good. I don’t let it control me. However, I do know what I can and can’t do, like not catching COVID19  or a cold, as I am still vulnerable. So, still having coffee’s outside and not visiting people indoors. We’ve still not been to a restaurant even though restrictions allow. It’s amazing what you can do when you have to!

February brought us to Vaccination time for COVID19. Scientists had developed a vaccine very quickly to help give us the best protection against it. I checked with my consultant to make sure I should have it, and she said yes.

Both Richard and I had the Pfizer/BioNTech, and I’m happy to say there were no side effects, and we also got a flu jab at the same time.

Maintenance five was at the end of March, I met with my consultant, and we decided we should leave things as they are. 

I was starting to walk outside more, and I’d go a little further each time. I was also out on the bike more, enjoying the fresh air. I was still riding the indoor bike. And I was racing and having so much fun with the guys from Zwift Riders Scotland. What a brilliant group. I was feeling good, and my fitness was back.

We got our 2nd Vaccine on April 2nd, again it didn’t give us any bother we both felt fine.

Maintenance six was on May 21st. It was going to be different. The nurses confirmed that I would get the Rituximab over an hour instead of the four hours. That’s exciting and how most people get it when there has been no reaction. And I hadn’t had any problems since the first chomo.

The ward was busy, but the nurse’s always managed to chat as they set patients up for their chemo. Today, I needed a heating pad to warm my veins up and make them easier to find. Over time veins tend to get a bit fed up with the process and decide to hide.

The cannula was in, and the Rituximab was dripping at speed. I was handed the alarm to use in case I felt unwell. 

Wow, that was quick, and I felt fine, so after a few checks, the cannula came out, and I was released. I had driven myself down that day, so I headed to the car park.

When I got in the car, I felt some aching at the places where I knew I had lumps, I thought good it’s working.

I had a good weekend and did the longest ride in ages with my BB, 34 miles and climbed 1,555ft. It was so good to be out on the bike in the fresh air!

We stopped off for coffee and cake at the Buttercup Cafe, Newburgh. They have outside seating now, so we were socially distanced in the fresh air and no one else was there.

Monday, May 24^th, I woke up feeling crap, sore stomach, sickness and headache. I rang Haematology to check and see if it was a reaction to having the Rituximab quickly. They didn’t think it was and should contact my doctor if it continued.

I went through the day feeling unwell, couldn’t eat, just drank water. Which I would say is excellent for clearing out your system. I didn’t sleep well that night, so I rang the doctor and got an appointment later that morning.

It could be a stomach virus, so I came away with various pills and to call back in if it didn’t clear up in the next few days. I called them a couple of days later and they said to give it a few more days.

June 9^th, well, it didn’t clear up as expected, and I couldn’t work while I felt like this. I was so sure that it was my Lymphoma playing up. So I called the doctor, and they agreed as it should have cleared up by now. So the plan was that I would call Haematology.

Haematology said to come into the overnight ward and bring an overnight bag.

I went in, and they put me on a drip, took blood and said I needed a CT scan. I saw a few doctors but not my consultant as she was working at a different hospital, but everyone was liaising with her.

Everyone agreed that my Lymphoma was active, and we needed the CT scan to see what was going on. So after that, it was just a case of getting an appointment for me. And it would be quicker if I stayed in the hospital. 

I am starting to feel more like me. And it was Friday, still no confirmation of the scan time. So, I said I would go home and wait for an appointment. The nurses were great. They did what they could, and I got scanned in the afternoon.

The doctors came back and confirmed my nodes were active and had significate changes to cause the current feeling. One doctor wanted to keep me over the weekend. I said that was unnecessary. As I could cope, I was feeling better.

The plan was to start a new chemotherapy treatment, and my consultant would be in touch.

I was down to see my consultant, and she had discussed my case with the team. And they decided that I should go for an Autologous Stem Cell Transplant. And have chemotherapy to reduce my cancer beforehand.

We got an appointment through quickly to see the consultant that would handle my transplant.

On June 28^th, we met with the consultant, and she talked us through the whole process. It wasn’t going to be easy but doable. Finally, I signed the consent forms. I was keen to get on with it I wanted to be back in control of my life.

She said that I certainly wouldn’t be able to work through this treatment, and as a bookkeeper, I would struggle to make 1 + 1 = 2.

So, my clients were sorted and looked after with some jiggling and good relationships.

I was also a treasurer for a local charity, Include Me. One of our Trustees said they would take on the role of treasurer, and I backed out slowly, giving them as much support as I could while I could.

I could take my time to look after my health.

Meantime I would have three cycles of R-GDP Rituximab, Gemcitabine, Dexamethasone and Cisplatin. Dexamethason is a steriod.

Cycle one was over two days, July 1st and 2nd, and it was fine until I got the Gemcitabine going through. It was so cold it hurt the vein, so I got a heat pad on, which helped calm it down. I also had to do the Filgrastim injection for five days.

There was sickness constipation, and generally, I felt unwell with this one in the first week. But, after that, I was ready for a bacon roll.

The weather was dry and sunny, so I managed to have garden chats and felt safe. 

July 11^th, we were watching the men’s Wimbledon Final. It was a good one to watch with Novak Djokovic and Matteo Berrettini. At the end of the match, I felt my left hand. There was an area where I had my last cannula. It was red and hot. So I took my temperature, and it was 38.1. 

If our temperature goes up, we have to call Haematology for advice. So I did and said I was to go to the ward straight away with an overnight bag, who knew that watching tennis could have that effect.

On arrival, I was quarantined and tested for COVID19 before starting treatment. I hadn’t considered I could have caught COVID. That shocked me. The nurses told Richard to stay away until the test results were back.

I was soon on IV Antibiotics to get things under control, as they could see the hot spot. It was the vein where I last had chemo. The doctor thought it was an infection in the vein. It needed treating.

I had to wait on the test results to come back before the nurses and doctors could see me without full PPE. Finally, a nurse arrived the next day just before lunch, all excited to say I was negative for COVID and the door could be left open. Phew! Everyone was relieved, especially me. I wasn’t happy at the thought that I might have brought COVID into an immune-suppressive ward.

The antibiotics were doing their job, my temperature came down, and my hand felt less hot. All this time, I had felt fine.

July 13^th  came, and I was good to go home and prepare for my next chemo cycle.

I have been walking in weeks two and three and managing to do a couple of miles. It was good to push myself as I felt better for doing it.

July 22^nd and 23^rd were pretty much the same. I was wary of the Gemcitabine going in and given the heat pad as it was sore again but hopefully no after-effects this time.

Week one was the same as last time, with weeks two and three being better. And I was getting good with the injections.

A letter arrived from the Stem Cell Transplant team at the Royal, Edinburgh inviting me to meet the team.

August 5^th, we travelled down to Royal Edinburgh, and we met the doctor and nursing staff. They went over the procedure and showed us the machine.

They took some blood and gave me more Filgrastim injections, which had to be started on the 15^th in readiness for harvesting my stem cells week commencing August 23^rd. “Harvesting can take a week, so book out your calendar as you’ll be coming down every day till we have enough. And it doesn’t always happen on day one.”

August 20^th was my third cycle of this nasty chemo. I wasn’t happy with this treatment. And it did make me feel unwell. But, I had to get on with it, and hopefully, it was doing its job of getting my cancer back under control, ready for my stem cell transplant.

August 23^rd was stem cell harvesting week. Woohoo, a shame it’s the week after chemo. Still, it gave me focus. Richard and I set off early doors as we had to be there for 8.30, and for us, it was a 50 mile trip through the traffic.

It was fine we weren’t late. I don’t know about you, but we have a built-in clock and we are always early for appointments.

They took blood to check to see if my stem cells were hanging about and sent us off for breakfast. We were to be back in an hour. We arrived back and sat in the waiting area, where we met a lovely couple who stayed in Edinburgh, and she was having the same treatment. 

The nurse came out to see us and said, unfortunately, it was not happening today. So here is another Filgrastim injection, and they’ll see us in the morning at 9.30.

Guest what we were disappointed, but hey ho, it was a trip out.

August 24^th, unfortunately, went the same way.

August 25^th, unfortunately, went the same way. Apart from a low haemoglobin count, I was to get a blood transfusion.

In 60 years, I have never had someone else’s blood. I did feel a bit weird about it, but I needed it and was grateful to the person who donated it. Did wonder if it could have been a professional cyclist, that I might gained some speed when on the bike next.

We met the couple again. We had the same problem no stem cells, and she needed more blood products than me. We were on the ward together, and she sent over her mobile number with one of the nurses as we were too far away to speak. So, I sent a WhatsApp message, and we communicated that way. We’ve stayed in touch throughout our journey.

August 25^th, again, was a no show for my stem cells. We were getting worried. What if they don’t get them? What do we do then?

They said it was ok it happens, but they had plan B. I would need to go to Western General, Edinburgh, to get a unique injection to mobilise them ready for Thursday. But I would have to go to them at 10.30 pm as it’s a timed dosage.

So we went home and then came back out and headed back down to Edinburgh. But unfortunately, the hospital was locked up, and we had to get in through a special entrance and find our way to the Haematology Ward. There I was given the injection, which by the way, was fine, just a bit of hassle to get it. 

This injection would cause my stem cells to mobilise from the bone marrow into the blood. And by the morning, they would be ready to be collected.

It had been a long day and a long week, but we headed home and got some sleep before heading back down to Edinburgh.

So, this time no blood needed. The nurses took me in, showed me how the machine worked and hooked me up. Oh my, we’re doing this. It was such a relief as this is my future well-being taking one giant step forward.

So, the blood would be taken out and passed through the machine from my right arm. Then, the device would spin the stem cells out into a holding pot and then the blood would go back in through my left arm. 

All very clever, I must admit it was interesting, once the pot was full, it would send the cells to a bag for collection. And this would repeat till there was enough.

So the nurses can see what’s going on and keep checking on you to make sure you feel ok. But you can’t move much, and it is best to keep your legs crossed, but you need stuff to do. I found an audiobook work best in this situation.

It took nearly four and half hours to reach the optimum quantity, and that’s millions.

The nurses were great, and they were very excited for me. So I came off the machine, verified that the bags had my name on correctly. And off they went with the team from Heriot-Watt for checking and freezing until I’m ready to get them back.

I then made a quick exit to the loo. Phew.

We got back to the car relived and happier than we’d been all week, that was some injection eh.

The phone rang as we were leaving the car park, it was my consultant, she asked if we had been successful, I think so I said. She then told me that my cancer hadn’t reduced enough to get the stem cells back yet. The chemo hadn’t worked as well as they’d hoped, and they were taking me off it as it was doing more harm than good.

The team had discussed my case, and they wanted to do another biopsy to see if it had transformed.

There were a few tears. I don’t cry much, and I certainly don’t about my cancer. However, it had been a tiring week…

Later that evening, we got some good news. The doctor called and confirmed they had enough stem cells, and I wouldn’t have to go again.

That was certainly a week, especially with all that travelling when you’ve not been going anywhere. But, still, despite the disappointment, we did have a good result, and the stem cells are safe and just waiting for me!

I took the time to get out and do more walking and indoor cycling. I needed to build myself back up after that chemo. So it was my job to get as fit as I could so I could deal with whatever the team came up with for my next treatment plan.

September 9^th, I went into hospital to have another biopsy. They would take a node from the same place as last time, the groin.

This time I was going to be anaesthetised as this one was deeper. The same surgeon as last time would be taking care of me. He chatted to me like we were old friends. It was great to see him again, I think.

I had some fun with the anaesthetist, and the last thing I remember was saying to him, “so when do you want me to count back from 10”. Ha, I was out for the count.

The surgery took just over an hour. The nurses woke me up, and apart from being sleepy, I felt fine. They took me to the recovery ward, where I got a cup of tea and some toast. I stayed there for just over an hour, and my observations were good. They said I could ring Richard to come and get me.

He wheeled me out as they wouldn’t allow me to walk, and home we went.

September 13^th, I heard from the lady I met at the Stem Cell harvesting place. They had managed to get her stem cells collected and would returned them to her before Christmas. It was fantastic news, and it meant she could give me inside information about what goes on with a stem cell transplant.

I recovered well from my operation and was back out walking and on the indoor bike. I was eating and feeling well.

October 1^st We met with my consultant, who confirmed the biopsy results. Fortunately, it was still Follicular Lymphoma, and it hadn’t transformed. However, the way it behaves is concerning, and they want to do a PET scan.

October 11^th was our 35^th wedding anniversary, and we were going to Edinburgh for a PET scan. I’ve never had one of these before, but it uses a mild radioactive drug to highlight areas of your body where cells are more active, like cancer.

It was very much like the CT scan. A cannula is required, but the nurse administering the radiotracer injection must wear PPE to keep them safe. Once the injection is administered, you wait a while and then go to the scanner. It didn’t feel any different from a CT scan. Then you wait for a bit, they remove the cannula, and you are free to go. They tell you that you will give off low radiation levels for around 6 hours, and it is safe to be around adults and pets but not anyone who is pregnant.

Oh, I forgot, I’ve now had my third COVID vaccination and annual Flu.

October 27^th, we both went down to see my consultant and get the results of the PET Scan. And no surprises, it was still Follicular, but they have a new treatment plan for me.

I will start as soon as possible three cycles of Obinutuzumab and Bendamustine. And if it works, I will be reunited with my stem cells in the new year.

November 8^th & 9^th, cycle one, it was good to catch up with the nurses again. So day one, I get both, and it is a long day in at 8.30 and out at 5.30, then on day two, I get a top-up of Bendamustine for just an hour.

Richard took me down and returned home to come down again to get me later. It’s a lot of driving for him. The next day, he would wait around. Get a coffee and roll as it wasn’t worth going home.

Cycle one also included the following two Mondays, 15^th and 22^nd seems I was getting a good dose.

This one is interesting as I didn’t get any suggested side effects. This treatment was ok so long as it was doing the job.  

December 6^th and cycle two this time, my veins weren’t happy, and we had to use the heat pad to bring them up. So we got there in the end. I feel for the nurses as getting a cannula in can be challenging, and it’s not their fault. My veins have become sneaky. As soon as the needle touches them, they jump out the way.

Again there were no side effects, and I continued to walk, adding an extra mile each week, and I can now walk 8 miles in one go. But my regular walks are between 3 and 6 miles. Friends joined me and we kept our distance we were in the fresh air after all. We were staying safe. No more garden chat due to the weather.

Christmas came, and it was quiet, but we did see friends in our bubble and remained careful, as I am still immune suppressed.

Unfortunately, I’m not back racing on Zwift, and I miss it, but I am riding more miles and getting some stamina back.

Here are a few photos to finish 2021 and here’s 2022 being successful!