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24 September 2014

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You are in: London > Radio > 94.9 Presenters > A-Z 94.9 Presenters > Hodgkin's Lymphoma diary

Eddie Nestor

Eddie Nestor

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

Week Four

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.

My Macmillan nurse Karen wasn’t too far away either. (There is a reason why I am giving you so much detail today).  I have up until now had little knowledge or sympathy for a condition I have heard mentioned many times. I mean just how hard, literally, could it be.

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.

"I am determined to make this post as positive as I can whilst being as true as I can to how I am feeling"

Eddie Nestor

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.

Week Three

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

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.

Week Two

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..

Week One

Sometimes I wonder if I haven’t let the 'anoraks' down. Why? Because since I was diagnosed on February 19 I have never felt the urge or the desire to find out anything more about my condition than what the doctors and nurses choose to tell me. Is that unusual do you think?

I mean, seriously, I am not a journalist but I earn my living in the media business so not withstanding the fact that the internet is full of truths and half truths which I could probably sift through, I have used any energy I have to simply stay alive.

I say 'simply' but anyone who has been diagnosed with cancer will tell you - nothing is easy. I discovered this week that I am more normal than I might have thought. You get bombarded with information and the thing that they forgot to tell me at Whips Cross, where my treatment is, is that there is a medical term called chemo head.

To anyone who is not on chemo means you are a 'shivering, but hot, dizzy, unfocussed, bumbling, can't concentrate, forgot what I just said, just want to lie down and sleep' idiot. Which makes any kind of show, especially when you have just beaten three giants of broadcasting Vanessa Feltz, Anna Raeburn and The Grand Inquisitor Jonathon Humphries to the coveted prize of Speech Broadcaster of the year, very interesting!

I met a young woman on the ward last Thursday. ( I have my treatment every second Thursday. More on that later as I am on a roll now) Anyway, she told me that her chemo head had been so bad that she hadn’t worked for eight months. What? Now the first thing they tell you is that everyone is different. But eight months off work?

I will post something every week. Yes, to have debates about long term illness, staying positive, shared experiences and all of that but if I am honest, and through this I intend to be brutally so, I really need to document this and a personal diary is not enough. I need to share, to inform, to be informed and this is my chosen route.

It is important that I have something to look back on when I am fit and well. When I have forgotten the night spent crying wondering if I am about to die, when I forget what is really important.

Anyway I have rambled on and not told you some of the important facts. Here goes:

In Febuary I was training for the London Marathon when my wife insisted that I go to the doctor for a very hard lump which had appeared at the top of my thigh. Yes, you guessed it I didn’t want to go. (what is it with us guys?)

Anyway my GP sent me for blood tests, CT scans, bone marrow and ultimately bone marrow tests. And that bloody bone marrow test is just the most painful thing in the world. It involves them sticking a 12 inch screwdriver into your hip and scraping your bone.

And the answer to your next question is; hell yes I screamed! Just to say my wife held my hand, told me to be brave and all of that and when we came out she said 'god they are gonna have to put me to sleep before they do anything like that to me.' Thanks babe.

I actually got the bad news on February 26th but it wasn’t until March 19 that I actually found out that I would have to undergo a six month course of chemo. A treatment called ABVD which would be administered every second Thursday. Do you know I went to work on both of those days and did my drivetime show? Seems strange now but not at the time.

last updated: 10/04/2008 at 15:43
created: 22/05/2007

Have Your Say

sue andrews
hello Eddie, i hope you are well,my husband has just completed 6 months of ABDV chemo for Hodgkins lymphona. Did you bounce back quickly on completing your treatment? any advice would be helpful.

E Forbes Jr
Hi Eddie, Denese's brother here (As I would Always introduce myself to You!) I am already - maybe I am not the first to having read the whole diary - but I am putting in My order for a signed copy of Your Autobiography when it comes to print. I can see it now, with You sitting and signing copies for those assembled. The wishes and love sent Your way by so many hopefully pleases You but shows You how loved and respected You are and have long been.Even in Your diary pages You've shed light on something that so few of us knew much about in the same way You have always in Your shows theatrical or broadcasting wise. Funny yet it has been as uplifting to read as it has been eye-opening(Again in the way Your programmes have long been).It is a truly great effort; the importance and value of Your Mum, Your wife,the nursing staff,Your listeners and old friends who didn't know etc, even the vein issue (which I identified with..5 tries, 6? I understand) all echo through and I confess to turning others on to reading Your diary entries.I can only bid You the Very best. The best which I, like Many people, know You deserve and also wish You. Keep the courage, continue to be the inspiration You are and I hope to see You Long before You are signing a copy of, Your yet to be published but obvious in the likelihood, need and necessity it is in print, Your autobiography for me.God BlessE. Forbes Jr

David McQueen
Your stories of courage (and humour) are an inspiration bruv. Sorry that constipation story nearly had me wetting meself.keep the faith mate!!!

Eddie, I am a Londoner (presently living in NYC)have been travelling around the world for last 17 years. EVERY time am back in London I LOVE to listen to you and Kath.YOU ARE LONDON, I am proud of you and tell many of your stories from your shows to my pals around the world.You can transform what you have into a thing of good and get through this. You mean a GREAT deal to a lot of people out here. WE LOVE you bruv.You have a whole lot more living to do left in youPlus a whole lot more work and service on your plate:))I have been studying for many years nutrition and if I can offer any advice, it is this start taking regular shots of fresh WHEATGRASS and get into juicing fresh organic carrots, beets and celery DAILY mate, YOU NEED to bolster your immune system.If you need to ask any questions contact my pal Gillian McKeith she will put you straight.Also have a look at my work , it'll make you proud of a fellow Londoner, go to The Karma now Eddie thank you for the hours of entertainment you have given me whilst in London and I look forward to listening again next time i am in town.Sending you Loadsa Love Simon

Sometimes it's hard to know the right thing to say. I truly wish you well.

Pauline Gayle
Listened constantly, but never have the courage to ring in. You have achieved a great lot, I pray that your health may continue to improve, and hopefully the youths of today may see where you are coming from and your achievements and that they may take a page out your book. I do hope that other men who are hesitant to visit their GP's will take this as an example. One never knows what is arround the corner, until it hits us, but I do admire you for dealing with your illness in a possitive and focused manner. God Bless.

Alex Watson
I am shocked....My thoughts and prayers are with you. You have achieved so much for the black community, by being a visible and positive voice in London.

Yvette John-Miller
Dear Eddie,I'm sure in years to come you will look back at these trying days fit and healthy and all will become clear as to why God chose you to experience 'This blasted thing' as you call it. Just you wait and see... you have so much to gain and look forward to. I also wish your wife added strength and courage through your Chemo journeyGod Bless.

Denese Forbes
Hi Eddie,Still in shock.Wanted to call you so many times didnt know what to say.Finally plucked up the courage to call got your answer machine left a msg.You are constantly in my thoughts and bring a smile to my face even at this difficult time.Keep strong. Love Always Den

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