Last October, I decided to get my mother a health and wellness MOT. She is 85 and I wanted to check that everything is as it should be.
It was just a precautionary measure and I decided I would do one at a time.
I was feeling tired for a few months before this and thought there was no harm in checking if I was missing something. I didn’t know at the time that those trials would save my life.
We got the results back shortly after.
My mother was all right. Mine, however, came back showing that my iron levels were off and my white blood cell count was low.
We both thought I had a bad case of anemia! Then I was sent to see a hematologist who did some additional tests. I was told that I would get the result in a couple of weeks.
When my phone rang the next morning at 8, I knew something was wrong.
The consultant told me that I have acute lymphoblastic leukemia, and that I needed to be seen immediately. He was amazed that I didn’t have any major symptoms because it was so intense.
I was in the hospital two days later for my first session of chemotherapy. It went on for a month and I had my own room as I could not be near anyone as I was at risk of infection.
I was scared; It all happened so fast. I was only 61 and apart from being tired of late, I was in good health. I have two daughters aged 25 and 26, who were completely blind to the news.
They both live in London but after my diagnosis, they moved back to Norfolk, where I live, to help care for me.
Chemo was tough and I felt terrible. My daughters were a wonderful support, escorting me to the hospital throughout the process – for some reason, all I wanted was hula hoops!
I lost my hair while going through chemo, which was really tough – however, it was the least of my worries and all I cared about was remission.
After finishing, I was on an IV drip for antiviral and antifungal medication for a few weeks over Christmas – so that I wouldn’t get an infection, as my immune system was completely wiped out by chemo.
Then in January, I had to go back for chemo three more times a week. I was so sick this time. I was in awe. I didn’t know what to expect. Physically I was fine, I just hated the constant barrage of blood tests and chemo.
I was quite fit at that time and continued to exercise physically while in the hospital. But mentally, it became more difficult as I began to realize that blood cancer is not a quick cure. It has been fixed very slowly and is in stages.
First, you need to go into remission. Secondly, a donor needs to be found. Third, you undergo a stem cell transplant – which has no guarantees that will work.
If it works, it could be a two-year recovery period. For at least six months after the transplant, this means not seeing many people at all.
If not detected, my type of leukemia can kill you within four to five months. I was only told that the mentors were fighting for my life, as hard as they could.
Shortly after this initial round of chemo, I found out I was in complete remission.
However, the thing with leukemia is that it can come back. And so, I was told I needed a stem cell transplant to help stimulate new bone marrow growth and restore the immune system.
Without it, I was at real risk of getting leukemia again.
I feel so grateful that a stranger is willing to go through this process to save my life
I live in Norfolk but have opted for treatment at a London hospital. Since my daughters both live there, it means they can live a normal life again, while still visiting me.
But one thing I hadn’t accounted for was that being half Lebanese, it would be difficult for me.
Because I am of mixed heritage, I discovered that it was unlikely I would find a suitable match: if you are a white European your chances of finding a compatible donor are over 70%, whereas if you are of mixed ethnicity, The probability is currently about half that, at 37%.
There’s a real disparity between white and non-white patients—but what most people don’t realize is that it’s surprisingly easy to sign up for a stem cell donation. It’s all a cheek swelling at first.
I would urge anyone reading this to sign up at The Register – especially if you are from a diverse background. You could probably save someone’s life.
The London hospital got in touch with Anthony Nolan, an incredible charity that helps patients find someone willing to donate their stem cells.
They then work to search different stem cell registries to try and find a match – but finding this one can be difficult because there are so many criteria for testing to make sure your body has a stem cell. will accept.
If you have any brothers and sisters, they will first be tested to see if they are a match. And if you’re receiving donated stem cells from someone else (whether it’s a relative, unrelated donor, or cord blood), doctors need to find a donor whose tissue type matches yours.
Anthony Nolan maintains a register of willing volunteers who are willing to donate their stem cells to anyone in need of a transplant. The charity helps find a matching donor, conducts appropriate tests, and coordinates stem cells arriving at the hospital.
With my background, I was incredibly worried that I wouldn’t be able to find a match.
But I just found out that I’ve been lucky enough to find a suitable donor. I am not allowed to know anything about them, no matter where they are in the world. But I feel very grateful that a stranger is willing to go through this process to save my life.
But there are many others who have not been so lucky so far. For example, I know of a woman who is half Caribbean and half Chinese – this is a very difficult match because patients in need of stem cell transplants are more likely to be matched with donors of the same ethnicity.
This is because the HLA markers used in matching are inherited and some ethnic groups have more complex tissue types than others.
For now, I’m on maintenance and chemo drugs as I await my transplant.
If all goes well, my donor will have to go to the hospital for four hours, where they will take their blood from around the bone marrow. After cleaning it (after taking out the red blood cells, it clearly looks like wee…!), it’ll stay frozen until I’m ready for it.
If the transplant is successful, this new blood will start to produce new blood cells and all of my old blood cells will be completely gone – meaning the leukemia will be gone and won’t come back.
I’m on time to get a transplant in mid-June. A week before the transplant, I would have to do another bout of chemo to make sure my body had no immunity – if my immune system was functioning normally, it would likely attack new cells. Could – which is the worst thing that could happen.
After the transplant, I will be in the hospital for four to six weeks. If the blood is being rejected, I will find out within 100 days – three months later is very important.
I know I should feel happy because I have found a donor but the next part will be the hardest part: it’s life and death.
Either the transplant is successful, in which case I’ll be free of leukemia (they’ll clear up like most cancers after only five years), or it’s not successful and I’ll find out that my body won’t get the donor’s blood cells. do not accept.
Apparently in this country you can go to the NHS for a second transplant, which is amazing. But I can’t even think about it right now.
My life has changed irreversibly since my diagnosis, which is a very difficult fact for anyone to deal with. The way I’ve tried to deal with it is through meditation. But once I have a transplant I’m going to ask to speak to a counselor to help me through it.
I feel anxious and scared, although I am doing what I can to keep my spirits and energy levels up.
Even if the transplant goes well, it will take me a long two years to fully recover. I just want to get over it and live a normal life again, although it will be very different from the life I had before.
Before my diagnosis, I was always busy and always running around, doing various things for charity, and participating in various committees. But after this brush with death, I have time to reevaluate things and when I get better, I feel like I’ll live a calmer, more peaceful life—with less pressure to be busy all the time.
But I will always be grateful that I was joined by a donor. For anyone reading this (especially miscellaneous people and men) please go and get a cheek swab and add yourself to the stem cell register – it could save lives like me.
As told to Siobhan Smith.
Learn more about Jackie’s story and how to donate Here
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