Living With Lymphoma (Lymphatic Cancer )
A Very Personal Account

What is being told you have Lymphoma (cancer) REALLY like?

First thing I have to say in the immortal words of the Hitch Hikers Guide is
‘Don’t Panic!’

Second is being Positive. I know it is easy to say, you have just been told you have cancer after all! But you must not let it get you down. You do have your moments, I know, I did but you have to be positive and beat the bastard!

Third you will notice your friends will divide into three different categories.
a) They will be supportive, will visit you and will understand some of what you are going through.
b) They will ignore it not mention it at all and carry on as if nothing has happened. (Don’t know how they do that when you are totally bald but there you go, it takes all sorts).
c) They cannot face it at all and they will avoid you like the plague.

You can actually get quite adept at noticing the different types of people while you are out and about. It always amused me when I met people I did not really know. I could tell from their body language what category they were in. Category c was the best. When they would ask politely how I was, I would say; ‘Oh I’m fine just got Cancer’ their reaction was priceless!

Anyway I digress. One thing I found out early on was most Doctors are excellent but they don’t know everything. If you think they are missing something speak out! You know your body better than anyone, it could be important. As my tale progresses you will find out what I mean by the statement above.

I have written the accounts below because a friend of mine contracted cancer and he found the most difficult thing was not knowing what was going to happen. The usual websites are fine but they are clinical. He said talking to me about my experience made him feel a lot better about it. So if the accounts below answer some of the questions you may have about what really happens then it has done what was intended.

I have divided this into two parts:

Part One; A Sorry Tale of Misdiagnosis.

It all started when I noticed a pain in my shoulders, which did not go away.
I found that I could not easily raise my arms more than shoulder height before it became painful.

After a couple of weeks I went to the doctor and was diagnosed with Calcific Tendonitis in my shoulders. I was told to just take the pain killers and it will eventually go away on its own. If it did not go after a few months I would be given a cortisone injection in each shoulder.

After a couple of months I started to get pain in my back either side near where the kidneys are. The pain would build to unbelievable proportions until the painkillers took effect. (Did you know it takes thirty minutes for pills to take effect? Boy they were a long thirty minutes!) I quickly recognised the onset and if I took the painkillers straight away the pain was bearable. I went to the Doctors again. He gave me an ultrasound and said he could not see any ‘stones’. Just keep taking the painkillers and it will probably pass after a few weeks.

A few weeks later I was standing in the bathroom and I sneezed. It suddenly felt like a knife had been plunged into my lower back on the right and pulled across to the left. I just managed to get to bed. The pain was unbearable. The doctor was called the next day. Apparently I had a slipped disk so I was given stronger painkillers and told to rest.

Well things seemed to improve and towards the end of two weeks I could move around a little. I was just starting to feel as if I might be able to venture back to work when it happened a second time. The doctor was called again and I was told these things happen, I was to rest and continue with the painkillers.

As well as the ‘slipped disk’ I still had the reoccurring pains near my kidneys and my fingers were getting stiff. Two weeks later I would wake up and have to push my fingers with the palm of the other hand to get them to move. One night I woke up and I felt awful, I could not raise my arms or move my fingers even to reach the painkillers and water by the side of my bed.

I also had difficulty walking more than a few hundred yards; it would totally exhaust me. The doctor decided it was time for a blood test, as I was not improving.

The blood test revealed a raised ESR (Erythrocyte sedimentation rate) level. This is apparently a marker that indicates inflammation somewhere in your body. Normal level is about 7 mine was then 35.

I had the symptoms of Rheumatoid Arthritis so off to see a specialist. By this time I was feeling really low. I saw the specialist and yes I had all the classic symptoms. He gave me a cortisone injection and started me on Methotrexate (coincidently in higher doses it is used for the treatment of cancer!)

The cortisone was wonderful I felt a lot better! The blood tests continued on a two weekly basis. I took careful note myself out of interest (good job I did as you will find out shortly). By the time I saw the specialist the ESR had risen to 50; it dropped back to around 35 after the injection.

Several times during the ensuing weeks I complained of the intense pain I would get near my kidneys. Other than feeling my spine and mobility of my back this was ignored. It did not fit in the nice neat Rheumatoid Arthritis box!

ESR started to slowly creep up again so they varied the dose of the Methotrexate mostly upwards! (It makes you feel a little nauseous to start with). I was now getting night sweats. The pain by my kidneys would show its first signs and I would take the painkillers. I would then get very cold (as soon as the pain started I would drive home from work because I knew what was coming).

I could not get warm. I would lie in bed, well covered shivering. Two hours later I would be too hot, covered in sweat. In the morning my body would be outlined on the bed sheets by a white salt stain from the dried sweat.

ESR was now at around 75 and still climbing so the diagnosis was I had a rare form of Arthritis (The name escapes me I’m afraid) that included night sweats. I had another cortisone injection. Oh blessed relief! ESR dropped back to around 50. But a couple of weeks later it was back on the way up. The doctors messed with the Methotrexate dose and I started to feel worse again. I tracked the ESR and when it reached 105 I had had enough. I plotted a graph showing ESR against time noting the changes with the cortisone and variations of the Methotrexate dose. Only the cortisone caused a small fall otherwise it was a steady rise.

I had to get insistent with the specialist (it was a different one every visit which did not help). I plonked my graph on his desk and told him straight, the treatment was not working and they all kept ignoring the pain near my kidneys!

So I finally got a CT scan and a biopsy of my stomach. I waited the two weeks for the results and went to see the Arthritis specialist. He was a different one again and could barely speak English. I sat down and he just said ‘Sorry you do not have Arthritis you may have Lymphoma’. I asked what that was and he replied ‘sorry I cannot tell you because I am an Arthritis specialist. Someone will contact you in a few weeks good bye’. That was the end of the consultation.

I had a nasty feeling about it so I phoned my GP on the way home and he just said. ‘A few weeks is too long I will get a specialist to see you by the end of the week’. When I got home I looked up Lymphoma on the net. The word that stared back at me was Cancer. I felt sick!

Part Two: Treatment