A-Z 94.9 Presenters
Hodgkin's Lymphoma diary
BBC London presenter Eddie Nestor was diagnosed with Hodgkin's Lymphoma - cells in the lymph nodes that have become cancerous - in February this year. Here he writes about his diagnosis and treatment
Well, I have been off work for nearly three weeks now and today is the day when I am supposed to return. Am I ready? My wife would say no, but I just have to try. We know that I can blag it but can I survive the first well meaning person who says something “supportive”.
It is weird isn’t it how your confidence works. I have been voted “Speech Broadcaster of the Year” for holding together a three hour show on a wide variety of subjects and here I am petrified of a two hour Drivetime show with breaks for news, weather, sport, trails, features and calls [and Kath to hold my hand]. It was to be the first time I had not spent most of the day in bed.
I used to think I was tough and that crying was a weakness, now, I see it as a release. I suppose that is what must be hard for my wife to come to terms with, why are wanted/needed to go back to work.
I am determined to make this post as positive as I can whilst being as true as I can to how I am feeling.
Through my exploits with the picc (peripherally inserted central catheters) line my chemo day has shifted from every other Thursday to every other Friday. Last Friday was one day in my life I will never forget. I went in as per usual to the Day Care Centre and said good afternoon to Trish, Sarah, Georgie and Michelle. I think they have only just worked me out. And have officially given me over to Georgie coz she, like me, is just off centre.
The condition to which I refer is constipation. Oh wow. I had spent the previous 24 hours playing turtles. I was in agony, it was horrible. And now it was my chemo day. I was shuffling from side to side a little agitated and very uncomfortable. I dare say some of you who have not experienced it may even think it funny.
But oh wow. This was always going to be a tough one as the picc line, which was supposed to make things easier, got infected and is no more. So, not only was it going to be painful but we had to find a blessed vein. Not sure if I have told you how bad I am with needles, but I am. Are you getting the picture?
All my nurses had a go and try as I might to make it easy for them I had this other problem which meant I couldn’t sit straight (or even still) which was making it all too much to bear. It was then that Karen came up trumps, no playing around.
“I know it’s been tough, I know you feel crap (sorry) but we really have to make this work” She found one and a big one too. I even tried to mark the spot in my mind. “That is where we will always go”.
It is soul destroying to be in then not. Anyway we were able to turn it up (increase the flow of the chemo) without it being too painful either. Things were now looking up.
Getting back to my other problem, I have probably already given too much detail already but let's just say the doctor prescribed something I could use when I got home that in 20 minutes gave me more physical pleasure than any other since finding out I had this blasted thing.
If I had the energy I would have run down the road screaming with pleasure and relief.
First of all can I say thank you to all of you who have taken time to send messages of love and support.
It has been truly overwhelming and uplifting. I must say this has been the toughest week so far and all the kind words have been a source of inspiration to us.
After last Sunday’s show, I started feeling serious discomfort in the arm that the pick line had been put in… Gosh, I just realised I haven’t told you yet so much has happened this last week. I had a pick line inserted into my right arm, under X-ray supervision a week ago so that the giving of the chemo would be less painful as my veins aren’t very good.
Kath Melandri and Eddie Nestor in 2003
Anyway, as I said after the Sunday show I started to feel serious pain, for the first time in my life I missed a show that I was suppose to be performing at the Hackney Empire, I felt terrible, by Monday night it became even worse, I took painkillers and I started to get a temperature.
First thing Tuesday morning (as it was the Bank Holiday) I went into the medical day centre, where I get my fortnightly chemo and they were not happy. The doctor said I should have gone straight to A & E immediately I started to feel pain in my arm or had a temperature, they made me realise how serious this was.
I had a temperature of 39 and the pick line was infected. They took the pick line out immediately, stupidly I thought that after this I would start feeling better and everything would return to normal. Oh, what a surprise I was in for.
They told me that due to the temperature I would have to stay in hospital overnight and receive antibiotics intravenously. This was my first night staying in hospital so this was a new experience for me, one that I wasn’t looking forward to. That overnight stay became six nights as my temperature was not stabilising, I came to know a lot more about hospitals in those six days (wait until I do the next show about NHS!!!).
The second night was the worst. The guy next to be was being given his last rites more or less and even though they pulled the curtain round him whilst they were speaking to him I could still hear and he was told that he would not be leaving the hospital.
I had to listen to his wife tell him how much she loved him, pray over him, sing songs to him and tell him how much she would miss him because as I came to learn he could die at any moment. That scenario repeated itself several times with different relatives saying goodbye.
That was really hard and it kind of put my situation into perspective because up until then, all I was worrying about was getting out and going home. But here was a guy that would never be going home.
On the third day they found a side room on a different ward, they were worried about me being nutripinic, which is where you don’t have enough bacteria fighting cells, so with an infection and being on chemo this would be very dangerous.
They decided I would have to stay in for the weekend so that I could be monitored…as I had my 30th birthday party that weekend that didn’t go down well, the birthday boy was not going to be at his own party.
But that didn’t matter as much now as earlier that day I got some terrible news, I had a ultra sound done on my arm as the swelling was increasing, they found out that I have a clot in my arm, this not only limits the movement of my arm due to the pain it means that every single day for the next 3 months my wife has to inject me with a blood thinning agent….
I was finally discharged on Monday evening in time for my birthday on Tuesday, which meant I was lucky enough to spend my birthday with family and close friends…eventhough I spent much of the time in the sofa lying down….
All the fun was going on around me….and actually, when you have just had the week I had, it is moments like those just chilling with loved ones and just being able to be at home was a blessing.
It is 2am and I probably shouldn’t be writing my diary now but I can't sleep. So much on my mind. You see my mum has come from St Lucia to stay with us for a couple of months and look after her big son.
She arrived last week as the recovery from my last dose of chemo had begun. And so all she has seen me do is eat, after five days of stumbling around not being able to taste food. And I can see it in her face. Eddie's coping well. He seems happy and boy he is eating well.
I have to tell you I hope she is ready for the change. I am nervous. On my bad days I stay in my house. No one sees me, it is me and my wife or should that be my wife and I?
Because I am self employed and work is all I look forward to at the moment I quite literally only get up to go to the toilet and go to work.
I leave one wife and the other arranges a cab, I walk straight into the studio to the arms of my radio wife Kath Melandri. And she quite literally carries me through the show. She reads texts and cues because the words move around my script.
I keep it light; throw out for caller and introduce the news. She thinks I am mad, tells me to stay at home but accepts that the listener cannot tell and understands that coming to work makes me feel like I am winning and that this C which is a big C is not and will not beat me. That I can and will carry on as normal.
In a funny kind of way it has made drivetime a much better listen.
We do not fight as much and when we do have a disagreement, the listeners are invited to take sides but it is always done with love. There you go, cancer has made drivetime a better show. I am not the miserable bully anymore but part of a team whose job it is to seek out the stories that affect and interest Londoners and at the same time binging just an little entertainment and fun to the table too.
Anyway back to my mum. It is interesting the way she has dealt with it. She hasn’t told anyone and is kind of confused that everybody knows. I have tried to tell her what to expect, that what she has seen is me trying to eat as much as possible to catch up on what I have missed out on over the last week or so but she just goes off on one about God being in charge and that no one knows how bad the next one will be.
Well mum, that isn’t exactly true. I know and I want you to know because it isn’t nice and I won’t be coming downstairs with a smile on my face to eat dinner. In fact some days I may not be coming down at all.
You might hear me blag a show but then it is bed. I so hope she is ready for it.
As I type right now my right arm is aching. You see I have had something called a pick line inserted. When I started my Macmillan nurse Karen asked if I would consider having a line inserted into my arm, through a vein that fed all the way up straight through to my heart.
This line would stay in my arm for the whole six months of my treatment. But it would mean that I would not have to be injected every time I came for the blood test and the chemo. My answer was hell no! But after two chemo sessions the pain of the treatment and the many attempts to find a vein changed my mind.
So this week at 9am on the dot I went in to Whips to have the procedure. It was such a weird experience. First of all half the team recognised my name and started asking me my date of birth. For some reason haters don’t believe I am actually 30. Then they started to tell the ones who hadn’t a clue about what I had done. Then the doctor asked me (with a big needle in his hand) whether I would give his charity any publicity. (I was hardly going to say no was I?) Then and this was the thing, he couldn’t find a vein to give me the anesthetic. Five times…FIVE times he stuck that needle in me. I held the nurses hands and I think I broke two of her fingers. In the end he put the needle in my wrist palm side up. Wow that was painful….but I tell you what is was worth it. The last chemo session was much better….didn’t have to fiddle about trying to find a vein..