LifeTides

Hello 2022, so back to chemo cycle three, January 6th, possibly the last one for this round, if the scan comes back positive.

But this chemo has been the easiest one I’ve had as to the side effects, and I thought it might not be doing its job. So I’m keen to get the scan done and see.

I was able to continue to walk and ride indoors. I wanted to get as fit as I could so that if the Stem Cell Transplant went ahead, I would be physically and mentally strong. As I didn’t know how the treatment would affect me, especially the high dose chemotherapy.

The scan date came in for January 24^th in the evening. Again, it was straightforward, with the familiar warm feeling in my bladder. We have to wait 7 to 10 days for the results.  

I was out for my walk on January 26^th when the phone rang, and it was my consultant to say she got the scan results early and was excited to tell me that the chemo had worked. My cancer had reduced enough to go forward with the Stem Cell Transplant!

She also said that she was writing to my transplant consultant and I should prepare for various appointments coming through to get me ready for going into hospital.

This news made my day! I rang Richard with the good news he was delighted.

My phone was buzzing. I had to have an ECG, Heart Scan, Lung Test, and a check-up with the Dentist. To get baseline readings as chemo can upset other organs and your teeth.

On February 7^th we met with the transplant consultant, and she said she had been keeping a close eye on my progress. And was happy to get me booked in quickly, so quick I would be in the hospital in Edinburgh on February 18^th for six weeks.

Blimey, that’s a long time to be in a small room with a limited number of visitors and without seeing my girls. But, of course, it had to be done.

February 17th, the day before I go in was nice enough to walk in the field with Richard, Maisie and Gracie. The sun was warm. We chatted, and we decided to let me settle in over the weekend, and he would visit on Monday and bring anything down that I might have forgotten. The girls were happy to be playing on the fallen trees, and I knew they would be fine. I would make sure I got plenty of cuddles that evening.

Hospital for Stem Cell Transplant

February 18th came, and I was to arrive at the hospital at 8.30 am and go to the X-Ray department, where I would get a Hickman line put in. It’s a thin tube inserted into a vein in your chest 3 x tubes hanging outside. It’s used to take blood, give chemotherapy and other products.

Richard stayed while they booked me in and then left. They would then contact him when I was ready to be transferred to the day ward for recovery.

It wasn’t painful as they used a local anaesthetic. You could just feel the pressure of the tube being pushed in. The nurses and doctor chatted to me this kept my mind off what was happening. Then, I discovered the doctor was a cyclist and a Zwifter, so the chat was good.

An hour later, we were on our way to the day ward. Unfortunately, Richard was only allowed to stay for a while as no visitors were allowed on this ward due to COVID. So, he went and fetched my bags from the car and brought them to me. We said goodbye, it was strange not how we thought it would have been. Still, he would be back in a couple of days for a visit.

My journey to get as free from cancer has begun. I had to stay in the day ward until my room on the haematology ward was ready. I took my first chemo treatment as a pill, and I had my tea there. It was getting on for 8 pm. It had been such a long day for me I was so tired!

At 8.30 pm, a nurse came through to take me to the ward and my room. It was a nice room, newly upgraded, with a view over to the Pentland hills. Unfortunately, I couldn’t take a good photo as the double glazed windows contained the blinds.

I unpacked, had a shower, video chatted with Richard and got into bed. The nurse checked on me and told me that she would check my obs at 10, 2 and 6. From my previous hospital stays, I was used to the disturbance and always managed to get back off to sleep.

February 19^th to 22^nd 

This part was about the conditioning chemotherapy used to destroy as many cancer cells as possible that are left in your system. Every day there was chemo and fluids, I was starting to feel its effects quickly. And the sickness was kicking in. I had lots of anti-sickness potions. The bowels were also affected, and my very short hair was getting hit and started to fall out.

I was soon off my food, and the dietician came to see me and see how she could help. I ended up with nutritional drinks, which worked at first but soon stopped, but at least I was able to drink water.

February 23^rd, the day before transplant day

This day was the final chemotherapy day, but it was the most potent dose you can have. I was to suck on ice lollies, as many as I could take. This would help my mouth survive the effects of Mucositis. Can I say I don’t think I will ever have another ice lolly again!

This week had gone quickly, and I was grateful for my visitors. I was sleeping well, even with the obs through the night. My energy levels were low, but I got up and showered and responded to emails and messages every day.

February 24^th Stem Cell Transplant Day

They call this day zero and rebirth day. I’m getting my stem cells back just under 4 million of the fantastic guys. They were to arrive at 2 pm and be defrosted in a warm water bath. It would take a little over an hour to transplant them back in via a drip. Remember, it was over four hours to get them out!

You can get side effects with the cells going back in, and a nurse stays with you throughout the process. I felt cold, with a slightly raised temperature. The nurse gave me a blanket, and I soon warmed up.

It was over. My stem cells were back in, and now we wait for them to find their way into my bone marrow. This is called engraftment. Where they will begin to make new blood cells. You can need other blood products during this time, such as platelets and blood transfusion. I did require these products, you are very vulnerable at this stage to all infections, so they take blood every day to see what’s happening. I was also on intravenous antibiotics as my Hickman line had an infection in one of the tubes.

And now it’s about recovery. I’m delighted to have reached this stage, even though I felt unwell from all the chemo, it was a positive treatment.

Week one was done, and it really flew by.

Week 2

Since week one had passed by quickly, I thought week two might have slowed up. But it didn’t. I still needed antibiotics, blood and platelets and was feeling quite fragile, still being sick after eating small amounts. And my temperature kept spiking.

The weight was beginning to fall off, but I had put weight on before I came in, knowing it would happen so there were some kilos to spare. I’ve never been bothered about losing my hair. I was still sleeping well and was up every day, even if it was to sit in a chair and listen to my music and audible books.

I met with a couple of student doctors. They were pointed in my direction as I was a good candidate for their case studies, I’m always happy to help out.

I tired quickly. Having a shower was draining, and I felt crap at times, but the results were good. My blood levels were coming back up I was being rebuilt.

March 4^th was day +8 (we count this from the day after the transplant as transplant day is day 0). I saw my consultant today, and she was uber impressed with the results and how I was doing. This, in turn, made me feel so much better. It was a boost. I was recovering, and the side effects should ease every day.

There were times in week two that were a bit blurry. I’m glad I made notes, even if I struggled to read my handwriting. I suppose I could be forgiven, after all the chemo and drugs and how hard my body was working to repair itself.

For example, a doctor came in on Monday and said, “Just following up, from Saturday? I said oh, have we met? She said yes, we spoke on Saturday. But I didn’t have any recollection.

Week 3

My medication was getting reduced. Things were looking up. My consultant visited and said that if all goes well and there were no more temperature spikes or need for platelets, then we could look at going home next week.

Wow, out before six weeks, she knew me well and planted the six weeks in my head so I would come to terms with it, and if I were out beforehand, that would be the icing on the cake.

On Wednesday, they came to take out the Hickman line. It had been the cause of the temperature spikes. It was painless to remove it and didn’t need any stitches to close the wound. However, I was disappointed it couldn’t stay for the duration as I would have to have a cannula fitted in my hand instead, and that’s so restricting. Showering just got more complicated. Funny how your mind prioritises things.

On Day+15, I feel more like me and my concentration had improved. Richard and I talked about me being home and how Maisie and Gracie would respond! I guess I will be ignored for the first few hours.

I had a visit from the Clinical Nurse Specialist to discuss going home. She spoke about keeping the house cleaner than normal and eating and exercising.  

We were to wipe down surfaces all the time to keep me away from infection. Richard was to choose the food we ate, and I was to eat what I could. Also, no driving for three weeks. And yes, exercising and listening to my body, I will be tired. And I was to be the tortoise and not the hare. It was also acceptable to carry on with my garden chats and keep a distance as I currently have no immune system while my stem cells are busily developing.

She would write to me regarding the vaccines, but first, up is covid, and they would start end of May. Then later in the year, I would get the childhood ones.

Monday 14^th, my consultant came in and gave me the news I had been waiting for. I could go home tomorrow. Her team would prepare the discharge letter and medication today. Woohoo!

I rang Richard using the video call, but I became emotional, and before I could tell him, I burst into tears. He thought something had gone wrong. So I’m like, it’s okay I’m coming out they are happy tears. You can pick me up tomorrow afternoon.  

March 15^th is my discharge day. The nurse removed the cannula. And I got on with my morning chores. Except for this time, I was gathering my stuff together. Packing to leave, I was excited and a bit nervous for the past few weeks I’ve had people looking after me 24/7. I think that feeling is to be expected, and at the end of the day, we will be fine.

Richard arrived and doubled checked I’d removed everything from the cupboards. Then the letter and medication arrived. Finally, we were free to go. We thanked the nursing staff and left several tins of biscuits. I stepped out of the room which had been home for three weeks and four days. We made our way to the lift, some nurses who were free gathered and waved us off. That was lovely. The doors closed on the lift, and I was on my way home to start my recovery.

The team at the Western General Edinburgh were stars. They are very busy professionals and also coping with Covid but still have time for you. I’m grateful for the time and dedication I received!

The walk back to the car was challenging even though we took it slowly. Remember, it’s the first time I’ve walked outside of my hospital room in a wee while. It was also an insight into how much fitness I’ve lost since I’d been in. My recovery is going to be hard work.

I had been on the most challenging part of my cancer journey so far. And you don’t know how hard the conditioning chemotherapy would affect your body. It has left me weak, and I do not fit my skin properly. That will change, I know. 

You never know how strong you are until being strong is the only choice you have

Thank you Bob Marley

Richard has been an absolute hero, keeping house, looking after the girls and keeping me going and now he’s my chauffeur.

To see how Maisie and Gracie respond to my homecoming, you’ll have to wait till the next blog. You won’t have to wait too long.

My book listening choices were:-

The Dalai Lama’s Cat series from author David Michie. A light introduction to Buddhism through the life of a cat. Very enchanting and a lovely way to find out more about Buddhism.

The 5 Second Rule and The Hi 5 Habit from author Mel Robbins. Change the way you think, Mel has.

Listening to these has really helped me focus!