Margaret

Up until November 2020 I was in pretty good health. I enjoyed walking, Tai Chi and a bit of dancing on a night out. I did have backache and sciatica, but my doctor just put that down to being ‘an ageing thing’!

By the December of that year my backache was getting worse, so I decided to go and see a chiropractor. The sessions they recommended didn’t seem to be helping, so I decided to stop them and by this time I was starting to feel very tired with no energy left to be able to walk very far. I was also getting pains on one side under my ribs, and bad night sweats.

My doctor thought I may have a gallbladder or gallstone problem and I was given a blood test and medication. Over the next four weeks, I had to have regular blood tests as my counts were abnormal and during that time I was becoming weaker and weaker. My appetite was dwindling as well. Finally, in January 2021 a doctor at my surgery who I hadn’t seen before invited me to come in. She said “you can’t go on like this!” and made me an appointment for an ultrasound scan.

The results showed that I had inflammation, but they didn’t know what it was so I was sent for a CT scan and an endoscopy down my throat and into my stomach to see if there was anything showing regarding my gallbladder. The endoscopy didn’t show anything, but the results of the CT scan revealed the shocking news that I had stage four cancer. The consultant didn’t know at this stage what type of cancer I had, and I was told that I would need further tests. I really didn’t take the news in; it was so surreal. 

At this point, my symptoms were getting worse. My legs and feet were swollen, my appetite was poor and I was losing weight. By the beginning of February, I was in a lot of pain in my back and under my ribs and I was suffering with acid reflux. A lump had now appeared on the side of my neck, I was rapidly losing my voice and I had also started dribbling out the side of my mouth.

Following a biopsy for the lump on my neck, an appointment was made to see the haematologist. My husband had to wheel me in a wheelchair as I could no longer walk, and my stomach and legs were very swollen. I had to buy an extra-large pair of slippers to be able to leave the house as I couldn’t get any of my shoes on. The specialist and nurse were both shocked at the condition I was in. The specialist went on to discuss my test results and confirmed a diagnosis of diffuse large B-cell lymphoma (DLBCL).

My advice for anyone in a similar situation is always to make sure you have someone with you to help digest the information. 

Margaret

I was admitted to the cancer ward the following day, and a cancer nurse explained my diagnosis in more detail, along with the chemotherapy that I would receive. Nothing that was said actually sunk in with me though, as by this point I was in another universe! My advice for anyone in a similar situation is always to make sure you have someone with you to help digest the information. 

I received my first round of R-CHOP chemotherapy on the 12 February, but the next day I was transferred to the Intensive Care Unit  (ICU) as my body had reacted badly to the chemo and I was told I would need to go on dialysis. I was hooked up to a machine where they had to place a lot of probes into my neck – I thought I would have lots of holes when they were eventually removed, but there was nothing visible! I was also put on oxygen as my levels were very low. 

A few days later, I went back to a private room in the cancer ward, as the time in ICU had cured my problem.  The one thing I desperately needed at this point was to talk to someone about my feelings. I am not one to show my emotions but one day it got on top of me, and when the physio came to see me I burst into tears. She held my hand and listened while I got it all out. I was missing my husband. He is my best friend and I couldn’t talk to him or see him. I was worried about how he was coping. But finally, after seven days I was told I could go home. It was so good to be back in my own bed, and I could now relax a bit more.

The lump on my neck had disappeared after my first round of chemotherapy, but I was starting to feel the side effects from the treatment. I felt very cold and would feel increasingly tired as the day went on. The chemo also affected my sense of taste so everything tasted bland. I felt sorry for my husband who would make me a lovely meal every evening, but I just couldn’t eat it and kept filling up on Complan, porridge, cereal and soups. My hair was starting to fall out, so my husband helped me to cut it all off with his shaver. It was a bit upsetting as I had been growing it quite long and having it coloured regularly, but in a way it was a good decision as it would be much easier to manage with my lack of energy. I was very lucky not to experience any nausea, but suffered with constipation for a few days as a side effect of the medication I was given after my first round of chemo. Two weeks after my first session, I started to feel brighter and was eating better.

I was told I would receive chemotherapy every three weeks for six sessions in total. By the third session, I was feeling so much better and even managed to make dinner for the first time in weeks. But after my third session, my consultant delivered some shocking news in that my full biopsy results revealed a much more aggressive type of lymphoma than they initially thought. I couldn’t believe it as I was feeling pretty good! It was put to me that I should try a new treatment called E-POCH which would be harsher than the chemotherapy I was receiving at that time. I would have to wear a backpack that administered the drugs and have a tube inserted into my chest. I was told there were no guaranteed outcomes, so after going away and thinking about it further I decided to stick with the current chemo plan and then decide after my final session.

As time went on, the chemotherapy started to affect my mouth and I was suffering with oral thrush. I was given a special mouthwash and decided to use a child’s small, soft toothbrush and my gums bled so easily. My eyebrows, eyelashes and body hair all disappeared but I loved not having to shave my legs!

I was determined to push myself, as I hate sitting about. We would take drives out to the seafront, our local country park and I even managed to get to the local shops by myself after investing in a mobility scooter. There were good days and not so good days, but I felt I must keep positive and keep fighting. By the time I got to session number five I managed to walk around the park with the help of my walker. I was very pleased with myself, and we sat and had a drink and a donut and watched the wildlife. Life felt good.

There were good days and no so good days, but I felt I must keep positive and keep fighting. 

Margaret

I received my last round of chemo at the end of May 2021, and a PET scan followed in the July that showed I was in remission! I was told I would need to see my specialist regularly for monitoring, but from that point on I felt I could relax more in mind and body and make some future plans! My husband is my absolute hero, and I am so grateful to him and all the specialists and nurses who looked after me

I am now four years on from receiving my diagnosis, and really enjoying life. I still get a little frustrated with myself and for my husband, as I am limited in certain ways now but as he reminds me, I am alive and we are doing what we can! The whole experience has taught me not to sweat the small stuff, and the importance of living for the moment. I hope my story will help others going through something similar. All cancers will be treated differently, but I hope this will help answer some questions, fears or feelings that people may have. My advice to anyone in this situation is to let your loved ones care for you so you can devote your energy to living, and never give up.