Nigel H
Posted by

My NHL story in Jersey

Nigel H
Posted by
12 Nov 2014

Hi there -here is my story , hope it helps

I live in Jersey in the Channel Islands. about a year ago just after the summer holidays when the kids were back at school I started to get a nagging pain in my lower back, could not sit for long, bit painful walking etc .. did not think anything of it just took pain relief like a typical bloke and hoped it would go away! my wife convinced me to see my GP who recommended me to get a full x-ray (and gave me more pain relief…) - the x-ray would take a week and in that week the pain became unbearable, and I was in a right state, sweating and constipated with the pain relief etc .. after 5 days my wife made the call and took me to A&E.. I was fast-tracked through triage and given a bed, I had  gas and air to numb the pain and then a full examination plus bloods (I should say here that 12 weeks earlier I had completed a gruelling 80km round the Island walk with my 12 year old daughter and 2 of her friends, we finished last .. but we finished. I am a non-smoking and active 49 year old robust 6 ft bloke) - so at this stage the pain relief is working and I am feeling ok, actually ready to go home -- bit of a giggle with my daughter taking pics of Dad on the stretcher etc .. . The consultant came up to me and said "Nigel we are admitting you, you have a platelet count of 3 and your body is fighting an almighty infection, and we need to run some tests on you until we find it" FYI at this point I had no clue what a platelet was and argued with the guy and told him I felt fine, could I have some more pain relief and go home? the answer was no …you are staying…

So I went up to one of the wards and got a room and my wife and daughter went home, I did not have a great nights sleep with sweats etc … next day I was taken away for an ECG (heart like a lion they said…) more bloods, a Cat Scan and MRI .. after the 3rd day the consultant came in and told me I was … still...a mystery! but they were analysing the data and would revert, they also made me wear this prehistoric back brace and told me if I sneezed the wrong way I'd be paralysed ….so no pressure! on the 4th day he came in and said that I had a complication on my T10 vertebrae which they could see on the X-ray and giving me the pain as it was pressing on a nerve (no sh...t sherlock!) . Mid afternoon he came and sat down, looked at me and said "we are not sure but we think its Lymphoma"… I said, "whats Lymphoma?" He then told me it was cancer, "but its ok because its very treatable and curable" , but they need to do a bone marrow biopsy to be sure …when he left the room I burst into tears and phoned my wife who was in town buying me some pyjama's. My wife came back and we both just cried and cried and did not know what to do .. :-(

I had a bone marrow biopsy and it was confirmed as B Cell Non-Hodgkin Lymphoma so that was that …I had cancer ..couldn't believe it -just like that I was sitting in a room thinking that would not see my daughter get married, my wife would be on her own -- you really do see your life flash before your eyes when things like this happen I can assure you … I had a wonderful nurse called Karen who looked after me and told me (repeatedly) that I was going to get treatment and the best care .. I was emotionally and physically broken and very distressed and could not stop crying -- stuff like this happens to other people right?...

I was told that I would be going to Southampton to be put under the care of Dr Andrew Davies, a Lymphoma specialist and they sent me home. At this time we had not told my daughter because we wanted to be very sure on prognosis and outcome so the bad back story carried on for a few days. I went to Southampton with my wife (wearing the brace still!) and we had our first session with Dr Davies who explained how the disease works and the treatment plan, he said I would have 6 sessions of RCHOP on 21 day intervals which should eradicate the cancer but if not then we could go to 8. There was no need for surgery or radiotherapy at this stage. I asked him why I had it and he said 'Its just bad luck Nigel …don't beat yourself up about it …it has nothing to do with your heritage, or DNA its just bad luck .." I got a room in the old Teenage cancer rooms in oncology and they set me up for my first RCHOP .. I had to have Rituximub first but this was given over several hours to see if I reacted, thankfully I did not so they gave me the CHOP and made me stay the weekend on a saline drip to flush it out .. my wife Jane had my back through the whole journey and made sure that I was looked after properly while at the mercy of the NHS ! I did not have any reactions to the chemo at all..

We came back on the Monday and waited to see what would happen, I felt pretty ropey but still mobile, not sick and still had an appetite. We discussed when we would tell my daughter who up to now still thought Daddy had a bad back .. we agreed that we would leave it till the Sunday as she had a party to attend and we did not want her to be sad.. the Sunday came to quick and my wife Jane sat my daughter down and told her that Daddy did not have a bad back but had "cancer" and that he had to go away now and again for special treatment - my daughter burst into tears and then I joined them, we all sat on the bed and cried for ages .. I was completely broken -- this was the absolute worst day of my entire life without a doubt … one I will never forget and I suspect many sufferers will have had to deal with :-(

After about 15 days my hair went (I genuinely believed I would be the 1 in a million that would get away with it) , I remember being in the shower with great clumps falling out all over my body and becoming very distressed ..I started to look very ill, and had lost over a stone in weight (went from 14.7 to 13.0), all my clothes were baggy and I looked like a withered old man with a stoop.. it all happened so quickly and I was shocked. I went to my mates for dinner and all my hair was falling into the meal his wife cooked us...I was breathless and rasping a lot, fainting in the shower because of the hot water and could not believe the energy it took to do simple things like climb the stair or sweep the yard etc ..I spent a lot of time on the sofa and my mates and family came to see me but the reality is that everyone has their own life and so cancer becomes a solitary experience because basically no-one knows what to say or do with you anyway. This do not bother me to much as I did not want to be with anyone at all and happy with the solitude. My wife went back to work and my daughter was at school so my routine involved a trip to Southampton for RCHOP and intrathecal spinal injections every 21 days. After treatment I would go into decline for 10 days , by the 10th day I was at the bottom of the "dip" and could not do much so rested up.. I would be breathless and at times anaemic and basically rough and ropey not wanting to do much .. . By the 12/14th day I would start to feel better and became more mobile as my bloods went up and my energy levels increased. I had 6 of these cycles from October 13 to February 14 , in between I had 2 blood transfusions and 2 lots of platelets at Jersey hospital with Maggs and her delightful team of oncology nurses. I set up an excel spreadsheet and plotted my blood results so I could see for myself if there was any progress. After my 3rd session I had an MRI scan and Dr Davies phoned to say he was happy and that I was "normalising", this was just before Xmas .. Whilst I was on my own and able I went for walks on the beach and tried to stay active -- I was never sick once but very very aware of the way I looked and dreaded meeting anyone I knew -- I thought my baldness made me look like Bruce Willis (cool Hollywood A-Lister) but my niece said I actually looked like Uncle Fester ! - I got the odd visit from work colleagues and I am also Chairman of a local children's charity (Centre point Trust) and they were great. My sister came to see me from London a few times which was great and welcome .. we had 9 family over the Xmas period and I had to travel to Southampton on Christmas Eve for session 4 of Chemo. All my friends were great and supportive where needed but understood the need for privacy etc ..

My last session was in February 2014 and I came to Jersey. I then agreed a back-to-work plan in March as I wanted to get as much toxicity out of my system as possible .. so I went back to work on March 14th full time (which was weird) - I have been full time ever since and had a great summer climbing Ben Nevis with my daughter and her mates, going to Thorpe Park and enjoying life as much as I can as well as doing some serious manual labour DIY projects on my house . I have full energy levels and no after effects from the treatment I had which..whilst being very aggressive, seems to have worked for me. I have had two 12 week follow ups and was told on the first one that my scan was completely clear (my wife cried when we were told….) - I have started rowing and running/cycling again and try and eat the right foods.. I live for the now because you never know whats around the corner ..

My NHL experience was not nice and many people will reconcile with my story but I urge you to believe in yourself and the good work that CRUK is doing - What keeps me going is the knowledge that for every year I am in remission , thats another year of medical advance from CRUK trying to beat these types of cancers somewhere else . I also support Lymphoma research because whilst the chemo is bloody awful the technology behind it is really cool (almost like nano-technology they way it targets specific cells etc..) so we should support the effort in any way we can so that eventually the disease can be eradicated .. My daughter (12 at the time) and all her mates never judged me during the whole ordeal and my wife was an angel but hurting and worrying inside all the time .. (I know that now.. she was strong for me)

For me - this whole experience has given me a real perspective on life and made me realise whats important and where my focus should be going forward .. cancer is an awful disease and we all have different stories to tell .. I hope my story can give hope to other Lymphoma sufferers who are going through chemotherapy and the whole experience ..believe in yourself and your own strength during the dark times .. there can be a good outcome !!!

Nigel Hill
St John
Jersey
Channel Islands 

Comments

14.11.2014

Nigel,

Thank you so much for sharing your experiences of NHL with us so openly. You touch upon some really, really important issues like telling your family and you explain the treatment you went through excellently and this will really help those who have recenlty been diagnosed. Thank you.

It's absolutely wonderful to hear that you're now so well and aren't suffering from any long-term side effects. This is something that we want for all blood cancer patients and we will not stop until that's the case. With the support of people like you behind us that day will be sooner rather than later. 

18.12.2014

Thanks for writing this Nigel. I've just been diagnosed with follicular NHL in my duodenum. 

Helps to read your story and not feel so alone.

thanks

Hilary