LifeTides

December and January 2023

On December 2, I was down at the Western to get my bone marrow sample, which, to my surprise, wasn’t painful at all. And it didn’t take long. They checked my blood while I was there and decided I needed a blood transfusion, and it took a couple of hours to get that into my system.

We then met with the trial consultant, who explained that they couldn’t put me forward for the trial because I needed more blood products, and my platelets were low, which would hold up the start of the trial treatment. And also because I was pretty poorly, it would be best to stay with my team in Fife, who would get the treatment started quickly.

We were disappointed but understood we needed to move forward quickly for my health. I tried.

The team made an appointment to see my consultant back in Fife on December 9. And I signed the consent forms to start the drug called Lenalidomide, which was included in the trial. It was in tablet form, and I would take it for twenty-one days and have eight days off. Then start the next cycle.

December 16, I was getting my blood checked once a week and going to the Victoria Hospital if I needed any blood products, which I did need. However, things were changing, and I was feeling more unwell. My tummy area was growing fast, and I had developed a cough. My lack of energy was not helped by my eating well, and the change in my body slowed me down.

Over the weekend, I was at rock bottom. I was struggling, and my breathing was laboured. Richard had told me to contact the team. I said I would do it on Monday, hoping I would feel better then.

December 19, I contacted the team, and they got me an emergency appointment at Queen Margaret. I saw a locum doctor and not my consultant. After an examination, he prescribed antibiotics. Unfortunately, by this time, the pharmacy was closed, and I would have to go to Victoria Hospital in the morning and pick up the prescription there.

December 20, we arrived at the Victoria Hospital nice and early and collected the prescription. Then, we decided to pop up to ward 34 (haematology) and check in with the team to let them know what’s been happening. I’m unsure how I managed to get around the hospital as I was slow and quite weak.

I sat down in reception, and Richard went to see the team. He returned with one of the nurses, and she took one look at me, and you’re coming with me. Richard gathered coats, and the nurse took hold of me. We walked slowly to the ward. She sat me down in the room, and that’s where I stayed till Friday, Christmas eve.  

They took my blood pressure, temperature, Oxygen and some blood. All my stats were down. They were going to let me out, the doctor came to see me, and they organised blood and took me off the Lenalidomide. Richard headed off to get my overnight bag. It’s always been packed and ready since this started in 2019.

I hate being kept in, but this time there was no argument from me. I knew I was poorly. It wasn’t great timing just before Christmas.

I had drugs intravenously to help correct the imbalances I had developed. However, my kidneys struggled to keep up, I had a high calcium level, and my temperature kept spiking to 38/39.

I had an ultrasound on my kidneys; thankfully, they looked okay and a body scan too. Which revealed the mass in my abdomen had grown to 18cm. There was also fluid everywhere in my tummy area, in my lower legs, feet and around my lungs.

It was all a bit of a blur, and I didn’t realise how ill I had become. I was starting to feel better, and they were happy with my progress. So, we started the Lenalidomide tablet again but at a lower dose.

So, Friday came, and they asked Richard if he could cope with me at home, and of course, he said yes, but if anything changed, he was to bring me straight back in, whatever the time was.

So, we got to spend Christmas together, and I was spoilt. He cooked everything, and I even managed to have a smaller version of Christmas dinner. It was excellent and tasty.

I had blood taken on Wednesday 28, and they would ring with the results. I was trying to get on, but I was struggling.

It was my 62nd birthday on Thursday, and my stepson was up for a visit. Not much of a celebration, but we had a pizza carryout, and I had a glass of bubbly, which was okay. I have to drink 2ltrs of water daily to protect my kidneys, so it was well watered down.

Friday came, and we were out visiting friends when the call came from the hospital. It would be best if you returned to the hospital, Carole, and bring your overnight bag.

So, all my levels dropped again, and they needed to give me more drugs. I also came off the Lenalidomide again. It was much the same as my Christmas, but this time I was getting a sore mouth with ulcers and needed a strong mouthwash to help clear it up.

So, that was my New Year, in the hospital. Still, at least Richard had company, an Indian carryout and watched a film.

I was still struggling to eat, and the hospital food wasn’t helping. Richard started to bring me lunch, ranging from prawn cocktails to duck wraps and, of course, a Costa coffee. It did help to have some real food. In addition, my taste buds were coming back.

This time there were some serious conversations with the Doctors. One, in particular, was if I had a DNRCPR in place. I thought I had, but it wasn’t on my file. We sorted it out last year when we updated our wills and power of attorney, or so we thought. We got the hospital one signed, which was placed on my file. It hit home how much I had been struggling. And that my meeting on January 6 with my consultant was a meeting I could not miss.

I got out of the hospital on January 4. They didn’t tell me till Richard came in that I was getting out. I did feel better and happy to get home to see the girls and sleep in my bed.

The girls were excited to see me, and I had lots of fuss and cuddles. I was keen to get into the field and walk with them, even if it was just a few metres.

On January 6, the meeting with my consultant was plain but very practical. I am in a difficult and serious place which is life-threatening if we can’t get it under control. The Lenalidomide seems to have helped reduce the mass but had caused extra complications while my Lymphoma was so active. And no other treatment is available. I am terminally ill. Richard asked about the prognosis, and whilst there is no crystal ball, if I don’t pick up, it could be weeks, and if I do, maybe months. She would also prescribe Dexamethasone, a steroid, to see if that would help with the side effects I still hadn’t.

I always knew my cancer wouldn’t be cured, but with treatment believe it would be manageable. And my quality of life would be acceptable. The news was a shock. We had a lot to think about.

They want to put things in place that maintain my dignity and ensure that I am not unduly distressed. Making sure my Doctors know where I am with the current situation. They will take over my care as I get nearer to the end of my life.

We met my consultant weekly throughout January to keep an eye on things, and it seems the Dexamethasone is helping. But here we are at the end of January, and I am now being weaned off them.

So Richard and I got spoilt and went away for three days to Crieff Hotel not too far away just in case we needed to return quickly. It was great. I felt better than I had done in a couple of months. We had a lovely room with stunning views and good food. It was a relaxed atmosphere for us to digest everything from the last months. 

Whilst getting this news was not what you ever want to hear, I quickly came to terms with the prognosis, and in that way, I de-stressed the situation, and Richard was calm too. However, we decided to tell family and close friends, which was upsetting. There was no easy way to say it. It’s not something you ever think you would have to say or hear.

However, some loveliness has come out of this as we are now catching up with family whom we haven’t seen face to face since COVID came. Although we see friends often, it has been good to get out more and catch up with them in a different environment.

I am closing my bookkeeping business and have been fortunate to pass my clients on to my accountant, a safe pair of hands. So I will be a lady of leisure, keeping fit and enjoying our time—oh, and more walks with the girls for sure. I might even assist Richard in the allotment.

Note – Since I am writing this at the end of January, I feel well enough to have short walks and eat better than I did. I think the steroids have extended my shelf life for now.

I’ve had my life on hold these past years, and now I feel free. It’s been a valuable time for us to ensure everything is in place, so Richard is prepared. He’ll know what to do. Guess that is the organiser in me. I am lucky I have time to plan and sort.

I wonder what February bring? I see the consultant on the 3^rd.

Love to you all x

Carole

Be happy and face your demons head on!

Carole