Daniel H
Posted by

Looking back on my diagnosis and treatment

Daniel H
Posted by
20 Mar 2015

Reflections on my experiences with non-Hodgkin's lymphoma

Diagnosis

It all started in November 2012 - I was working for myself as a gardener and was doing quite well with plenty of customers. One day I had a severe pain in the right side of my rib area. I carried on for a few days to see if the pain would go in case I had pulled a muscle. I went to see a private physiotherapist and she assessed me and said that I hadn't pulled a muscle and to go to the doctors ASAP to get checked as I could have gall stones.

The same day I managed to get an appointment with the doctor and was told that it was probably constipation but to have an abdomen scan just to check the gallbladder.

I went to see a different doctor to get the results and they were all clear so the doctor sent me for an X-Ray which showed up a broken rib on my right side. There was a bit of inflammation around the area so I had to have a bone scan in Haverfordwest Hospital.

As it takes time for the results, Christmas was over and the New Year beginning and I was still working but struggling because of the pain. I went away for one night with my wife for a break and while I was away I had a phone call from the GP to say he needed to see me. I arranged for an appointment the day after at 8.30am, which I thought was strange as they don't open till 9am.  I had a felling it was going to be bad news – this was Friday 18 January 2013.

As I went in to see him he explained that the scan had showed bone lesions on several bones around my body and said it was cancer but didn't know where it had come from. It had to have come from somewhere as could not start in these areas. He gave me a really good check and could not find any lumps or bumps. Before my GP had seen me, he had been in contact with a doctor in oncology in West Wales General Hospital in Carmarthen and had already arranged a CT scan for me. 

I drove home thinking about how I was going to tell my wife this awful news but I managed as soon as I got home. I burst into tears and told my wife everything -  I also gave up smoking that day. I knew it would be hard but knew I would put up a fight to beat it as I have two young boys aged two and four at the time. The weekend was hard as I knew nothing would happen but had a letter on the Saturday morning saying I had a CT scan booked for the Tuesday and an appointment with the oncology doctor on Thursday.

I had the scan and asked the radiologist how long the results would take and they said 7 - 10 days, which I thought was a long time waiting to find out what cancer I had. On the Thursday I had this appointment and my wife and I were sat in the waiting room waiting to be called in. As people's names were being called I was really nervous and had sweaty hands.

At last it was my turn to see the doctor. She said that the scan had been emailed to a radiologist in Australia to assess, as there wasn't anyone around here that could check them urgently, which I was very pleased about as didn't want to wait ages for the results. The CT scan was clear - which felt like a weight had been lifted off my shoulders, but they still had to find out where the cancer had come from.

The doctor assessed me again and found nothing. Next up was a PET scan in the Heath Hospital in Cardiff, which showed I had bone lesions on my ninth rib left side, sixth rib right side, both sides off my pelvis, in my skull and lower back. By this time the pain had started and I was put on crutches as I really struggled to walk. Once they had these results they could see that one side of my pelvis looked different so they wanted to do a biopsy under CT scan. I had this and again had to wait for the results.

My new oncology haematology consultant rang the lab to try and get the results quicker and managed to find out what we were all waiting for. I had stage 4 diffuse large B-cell lymphoma, which apparently is more common in older men - not someone of 26.

Treatment

I felt really relieved that they had found out what I had got so I could start treatment straight away and I was booked in to start my chemotherapy. The consultant said I would probably need 10 - 12 cycles of R-CHOP chemo.  March the 1st (St David's Day) was my first cycle. I didn't feel nervous, I just wanted to start, so I could start beating this awful illness. The first cycle of chemo I had some reactions to didn't manage to have it all.

I had heard about the side effects, but until you’re in that situation, you can't imagine what they’re like.  I think I had them all as I felt so rough and very tired, but knew it was doing me good,

I just kept smiling and getting on with it the best I could but by this time I was really struggling with the amount of pain I was in and had to be put on stronger painkillers.

After my third cycle I had a high temperature, which you are told to keep an eye on. Mine went to 40.6 and I felt so ill I had to call an ambulance. I got rushed to hospital and went through loads of tests and scans and the doctors revealed I had pneumonia. I felt really ill and very breathless and was a bit worried at this stage. Again I kept positive and after 12 days I was allowed home to continue my recovery

After my fifth cycle I was sent for another PET scan to check how things were going and if they were going in the right direction. Once again I had to wait for results. A few days later the phone rang and it was my consultant telling me that there were no signs of the disease. I was in remission but I needed to have two more cycles just to make sure. I felt so happy and relieved and overjoyed by this news. I knew I would beat it - I just kept positive and smiling. My family and friends have been so much support and Macmillan has been amazing helping me financially to buy a new mattress as the pain was really bad and I couldn't sleep properly.

What I always tell people now is if you have a pain anywhere get it checked straight away like I did.

Today

Two years on and I'm still on crutches and use a mobility scooter to get around. I take morphine tablets daily as the holes in my bones haven't healed and I still go to the chemotherapy day unit once a month to have an infusion called Zometa to help stop my bones from fracturing. I’m so happy that I'm here to see my boys grow up and spend time with my amazing family. It hits me a bit that I can't run around with them but they understand why. In May we are going aboard for the first time ever as a family for a nice relaxed holiday - which we believe we deserve!

If it wasn't for Leukemia & Lymphoma Research and their scientists it might have been a completely different story and I would like to help them as much as I can. Back in September last year I did two bucket collections in my local stores for ‘small change, big impact’ and raised over £300, which I was very pleased with. I cannot wait to help out again this year and show my support for this amazing charity.

Comments

20.03.2015

Daniel thanks so much for taking the time to write such a detailed and open blog about all your experiences. I think your outlook is absolutely fantastic and the way that you are dealing with the after effects of treatment is really commendable.

I, too, am unable to run around like I used to after developing a lung condition and there are times when I get frustrated but I soon snap out of that realising just how lucky I am to still be here.

Thank you so much for all your support with Small Change, Big Impact and beyond. You're a credit to your family and a credit to the charity.

Anonymous
22.03.2015

Thank you Daniel. What an amazing journey you have had and I admire your determination which is an inspiration. Hope you and your family will have an excellent break - you definitely deserve it!

Anonymous
29.03.2015

Hi Daniel
What a fantastic story i admire your courage and i am glad that your in remission, i lost my wife to to the same condition in august 2011. Joanne's where very much the same symptoms as yourself with her complaining of a sore back initially. I accompanied her to every session of R-Chop, so im fully aware off how you are feeling with the side effects, they can be horrible as it is a very strong form of Chemo. R-Chop was working for Joanne right up to her final session, she was unfortunate that by a chance in a million according to the oncologist, a part of the lymphoma broke away and settled into the miniscal lining of her brain. She was giving one week and we ensured she spent it the best that we could give her. God bless i hope your recovery goes really well

Anonymous
30.03.2015

Though you still have pain(No pain-no gain) your still here with your family . To me that's wonderful. I will keep praying for you. <3 oxox to the boys.

Anonymous
30.03.2015

I'm so sorry to hear about your loss, thanks you for the lovely comments and got wishes, all the best to you and take care

Anonymous
30.03.2015

Thanks you for your lovely comments Kay, I agree with you no pain no gain, the pain is always there but manageable, I enjoy and make the most of everyday from now on x

Anonymous
13.04.2015

Your an inspiration my dad was diagnosed with non Hodgkin lymphoma a few years ago and spent most of his time in and out of UCH having different types of chemo radiotherapy. He spent the last 4 months of his life in UCH having daily blood transfusions and platelet transfusions. He never complained but on January 11th he passed away from multiple organ failure. My dad couldn't go on any more and in a way I'm glad he is now at peace and free of pain. It's a horrible disease, wish you well.

Anonymous
14.04.2015

I'm so sorry to hear off your loss and thanks you for your well wishes it's a horrible disease but one day with all the support they will beat blood cancer