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My non Hodgkin's lymphoma story

From Frances Vince

Three months ago I went to my GP with a lump in my neck. He said it was three, not one, and was either cancer or TB. He referred me to ENT department. The following morning I had an appointment come through.

One week later I was sitting in front of a specialist. He syringed out cells from one of the lumps, which I was now told was four. Then put a camera up my nose and down my throat. When we got to the needle stage my husband left the room.

Five weeks later I had to phone to ask what had happened to my results and they were chased up. When I went back it was to be told I had a type of lymphoma, but they had not seen it before. It had been sent to Hammersmith hospital to a professor to be analysed which is why it took so long.

I was then sent to haemotology to another doctor who said it was non-Hodgkins, and told me all about it. I already knew. I had looked it up on the internet. I was pleased that he told me everything, without hiding things from me, as my mother had cancer some years ago. It was totally different and she was only told bits of information.

I was advised that wait and watch were the standard treatments for my type of non-Hodgkins, and was asked to come for a bone marrow biopsy. I was sedated for that and it wasn’t as bad as I thought. Two days later I had a phone call at 5pm asking me to come in next day for immediate treatment. I then had a massive meltdown. I couldn’t eat, drink or sleep that night. Next day I went and it had been a mistake. The doctor wanted me to come to discuss treatment. It had not spread to my bone marrow as we thought. I was, in fact, in stage one not three or four like we also thought. Because of this, they decided there was a 40 to 50% chance of cure, so they wanted to offer three weeks of radiotherapy to try and cure it.

I went to the radiography department, where I was told 40 to 50% was rather over optimistic. Although it was only in my neck lymph nodes, it was on both sides - which meant a greater chance of it returning. I could tell the doctor did not want me to have the treatment. But I decided I would have it.

I am now almost through the treatment. Tomorrow is day 12 of 15. From day one I had been extremely dizzy and lightheaded. Last Friday I was sent to see the doctor after treatment. She had no idea why I was getting these symptoms. She said it must be stirring up something and she thought it should probably clear some time after treatment finished. Today the radiographer insisted the treatment could not make me dizzy and said I should go and see my GP to test my blood pressure. After my treatment, she took me to a nurse to do my blood pressure. It was 136/89, which is fine. My pulse was 88 and oxygen levels 96, so all good levels. I then had my blood taken and tested and red cells, white cells and platelets were again all good. Therefore it has to be the treatment, i have never been dizzy like this before and it worsens immediately after treatment. All along I seem to have had things no one else has had, so am an enigma. I hope this will be of some use to others in some small way.

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Updated: 28 September 2009