Ann Bromley
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My battle with Non-Hodgkin's lymphoma

Ann Bromley
Posted by
17 Sep 2014

From chemo and relapses to 'Big Bertha' and cycling from London to Paris, my extraordinary battle with blood cancer was full of surprises.

I had a most amazing family holiday in Australia during the summer of 2002. When I returned, I started to experience stomach pains for a couple of weeks so I decided to see my GP. She said that it was probably due to my tropical travels and gave me some antibiotics. The pains continued so I returned to the GP and I was referred for an ultrasound scan which showed up something that looked like a plum at the back of my stomach in the mesentery area. I was also losing weight due to a loss of appetite. 

After weeks of various tests, it was decided to take a biopsy of the "plum". After the biopsy, the consultant came up to my room to say he had a feeling it could be lymphoma. I was on my own and in total shock. I wasn't too sure what lymphoma was so I said to him "do you mean I've got cancer?" He said he couldn't be sure, as we needed to wait for the results of the biopsies. After a very long 2 weeks of waiting for the results, I was told that the biopsies were clear and I should just go home. Huge relief all round!

However, a couple of weeks later, I took a phone call at work from the Royal Marsden in London saying that they wanted to see me urgently and had booked me in for an appointment the next day. Once again, I went into panic mode and went straight along to see my husband, Colin, who also worked at the L&G. 

Diagnosis

I had a CT scan in London and it showed that my "plum" had now turned into a mass the size of a grapefruit and that I would need a laparotomy to take some further biopsies to give a final diagnosis. It was now just before Christmas and I was told to go away and enjoy the Christmas & New Year celebrations before my operation on 3 January 2003.

I was finally given the devastating news in mid January that I had Stage 1A (bulky mesentery) large diffuse B cell non-Hodgkin lymphoma and was booked in for chemotherapy at the Royal Marsden in Sutton. I was 46 and had been very fit and active all my life. I couldn't believe that this was all happening to me and I was so frightened at what I was going to face. 

Initial Treatment

My treatment plan was 4 cycles of R-CHOP. I was in fact very lucky to be able to have Rituximab with CHOP as it hadn't been widely used at this point. I would like to say that my experience of R-CHOP went smoothly but I did feel poorly with all the inevitable side effects, including my hair loss. After 2 cycles of chemotherapy I had a CT scan to see if the treatment was working. At my clinic appointment, we were given the news that there had been a fantastic response to R-CHOP and that the tumour had shrunk down to the size of a grape! That really gave me a boost and set me up to get through the next 2 cycles.

Relapse

After R-CHOP, I had 6 weeks of daily radiotherapy as a belt & braces treatment to keep this ugly thing at bay. However, after a routine CT scan in July, for my 3 month check up, we were devastated to hear that I had relapsed and I would not only need another 3 months of twice weekly chemotherapy, this time it was DHAX, to hopefully get me into remission again. This would then be followed by high dose chemotherapy and an autologous stem cell transplant. Once again, I was unbelievably shaken to hear this news and was so sorry that I would have to put Colin and my two wonderful girls through even more stress. Elise & Sophie were doing their GCSEs and A levels at school so they already had enough stress of their own.

I got through the DHAX treatment and was once again told I was in remission. The next thing was to go through a long list of various tests making sure I was fit enough for the high dose. I could never actually say the words "high dose" and decided to call it Big Bertha!  It was also necessary for me to have my stem cells harvested and frozen so they could be given back to me after my white blood cells had been wiped out during Big Bertha. I was wired up to a machine which took blood from one arm, then the stem cells were extracted, before the blood was returned into my other arm. This was carried out over 2 days so I was very anxious to hear if enough stem cells had been collected for Big Bertha to go ahead.

Big Bertha

The great news was that they had a good collection and plenty for the autograft. I went in for Big Bertha in November. I was given an isolation room for 6 weeks, with my ultimate goal of being able to come home in time for Christmas 2003. I decorated my room with lots of photos & posters and also a calendar, so I could cross off each day of my stay. Big Bertha was by far the hardest of all my NHL treatments but I stayed focused and took each day as it came, although I didn't like losing my beautiful new soft curly hair again. I did manage to reach my target and I came out of my little room 2 days before Christmas. I was very weak but it felt oh so good to return home! It would have been nice to say that was the end of my story.

Unfortunately, there's more to come... It was discovered after my next CT scan in February that this beastly NHL had shown it's ugly face yet again. We could not believe what we were hearing and were once again in total shock!  But, my wonderful Professor Cunningham at the Royal Marsden, told me what the next plan would be. This time it was 6 cycles of R-PmitCEBOM which took me through to February 2005. Then I was put on an experimental 2 years of Rituximab as a maintenance therapy.

Life after treatment

Now, for the most fantastic news in my story. I have been in complete remission since the end of the Rituximab in February 2007! It took me a very long time to recover both mentally & physically from the bombardment of chemotherapy but last year in October 2013, I fulfilled a dream which was to cycle from London to Paris. This wasn't an officially organised challenge and only involved me, Elise & Sophie plus another friend Joe & his dad Bill and Colin came along to be our brilliant support driver! We cycled 276 miles in 4 days and raised a staggering £4,000 for Bloodwise.

I continue to have 6 monthly check-ups at the Royal Marsden (these still get me into a real tizz when they are approaching!) and in February 2011, I was diagnosed with secondary myelodysplasia.  This condition has been caused by all the chemotherapy which has lowed my immune system.  But, so far so good, as although my blood counts are low, they are fairly stable at the moment.

I decided to share the experiences of my Non-Hodgkin's lymphoma journey, which was full of unexpected twists & turns, to help anyone who is currently going through a similar journey to never give up hope as, there really can be light at the end of some very long tunnels.

The importance of blood and platelet donors

I have also become a patient ambassador for Bloodwise and recently had the pleasure of visiting the NHS Blood & Transplant centre in West London to share my story with staff and also to meet some blood donors. It was wonderful to be given the opportunity to say thank you to a lady who had just donated her blood as I, and so many others, owe our lives to people like her who regularly donate their blood or platelets.

I had several blood and platelet transfusions during my chemotherapy and cannot tell you just how much of a difference they made. I would often be extremely lethargic and poorly before the transfusions and the impact was almost instantaneous with the transfusions kicking in almost immediately and giving me renewed energy to carry on fighting my illness.

I truly wish I had known about Bloodwise when I was going through my NHL journey - especially the #feelalivefriday. I'm also extremely thankful to be able to represent blood cancer patients and show how much of a difference blood and platelet donations can make.

To find out more about blood and platelet transfusions please visit the NHSBT website.

Comments

18.09.2014

Thank you so much for sharing your story, you will be such an inspiration for other patients going through the same experience.

 

25.09.2014

Ann,

Thank you so, so much for sharing your story in such detail and being an absolute inspiration to others going through treatment.

To have been through so much and maintained such a positive outlook is a real testament to your determination and it was an honour to ride alongside you for part of the Bikeathon.

Keep up the good work and all the best for the future.

Anonymous
29.09.2014

Thank you Catherine! XxAnnxx

Anonymous
29.09.2014

Thank you Andy! XxAnnxx

27.10.2014

Thank you SO much for sharing your inspiring story - we can't wait to meet you and speak to you further in November :)

21.02.2015

Ann, it was great to meet you at the photoshoot yesterday ... you were quite the pro model! Will send you some pix over soon. And as everyone has said a massive thank you for your fundraising efforts and sharing your story ... I can't quite believe how many exclamation marks you put in!

So ... see you at L2P?!

Anonymous
21.02.2015

Hi Helen
It was great to meet you and the crew too and I would love to have some photos. I didn't realise there were so many exclamation marks so have deliberately not put any in now

Anonymous
23.02.2015

Oh no Ann, I didn't mean for you to do that! I just meant that I was kind of awestruck that when you were writing about such a tough subject, you managed to sound quite light hearted!

I will some pix through soon!

I like exclamation marks too ;)

Anonymous
26.03.2015

Hi Anne - Thank you for sharing this. I am going throug a similar journey having had rchop (good but not total response) and r-Dhap (no response) and pmitcebom is now one of by options to try and get me in a position to have "big Bertha" - I call it nukeing ! I am also at the Marsden under Chau / Cunningham. It's so encouraging to hear from someone so has travelled the difficult path and come out the other side. I too can't wait to be back on my bike again. Thank you again for sharing it has helped me in what is a fairly dark time.

Anonymous
27.03.2015

Hi Richard
Thank you so much for your comments on my blog and I'm really happy to think it has helped you on your NHL journey. I understand only too well how you must be feeling as I know how tough it is but, you are under the incredible professor Cummingham who can work wonders. I was at the Marsden recently for a check up and saw Dr Chau. I expect you also know Tracy & Michelle who are the wonderful CSNs. Please keep in touch as I'd love to hear how you're getting on. BTW I love the term nukeing - brilliant! Good luck with everything and thank you again for reading my blog.
XxAnnxx

21.07.2015

Wow you are one very positive and courageous lady! I was given the link to look you up by another user on here & I am glad I did. I have dlbcl non-hodgkins. I started off with a watermelon size in my chest and it has responded to chemo but facing radio now with it still sitiing inside me. 

I always trust my gut feeling and I am pretty sure first line treatment isn't going to be successful and I will be facing stem cell. I have researched this extensively and honestly do not know how you are brave enough to portrait such a brave outlook when you were going through that because from what I have researched it really does make the patient so sick & it must be so terrifying!

I am on here to share my experiences and converse with others such as yourself.

I had nver heard of nhl before it nested inside me!  Now approaching 30 and not having no control of my future means I live life taking each day as it comes.

I hope someday soon I can follow in your footsteps and do things I've dreamed of with a cancer free body but until then the fight must go on...

Thank you for sharing your story.

Rachael xx

Anonymous
22.07.2015

Dear Rachael
Thank you so much for getting in touch and sharing your story with me. I'm so sorry that you are faced with the challenging DLBC NHL journey. It's so unfair that, in your words, it has chosen to nest inside you. You are the same age as my eldest daughter which makes me even more sad that this is happening to you. I know exactly how you must be feeling as it really is a testing time. But, well done for getting through your chemo with all its horrible side effects. That in itself is a real achievement and the fact that there has been a response is fantastic. I had R-chop, maybe you had that too? I hope the radio therapy has a good response in zapping this thing. I'm sure you've heard this before, but it's all about little steps and taking each day as it comes. Don't start thinking about a stem cell transplant/autograft as you may not need one. Keep focusing on the radio therapy for now. Looking back, I really wasn't brave, and I'm still not brave, but somehow I got through all the ups and downs of which there were plenty.
Thank you again for reading my blog which I hope helped, even if only in a tiny way. Please stay in touch as I'd love to hear how you're getting on. Are you in the UK?
Sending love, hugs & strength.
XxAnnxx

Anonymous
23.07.2015

Hey Ann,
No need to thank me really it's you who has provided the foundation in which people will respond from. I had never heard of what I have been diagnosed with before and I have to admit hearing it in a person of my age too only added to the shock!
I think R-CHOP may possibly be one of the more tolerable treatments in light of what I may have to face. The reason I talk about further treatment is only because I am such a high risk patient and it's extremely unlikely this thing will disappear completely to never return-like the doctor says I have to realize what a high risk I am and the seriousness of the sheer size of this thing so I hold both optimism but realism too.
Yes I'm in the UK-Kent in fact.
Yes I'm always online-I've found it to be a positive thing to be on here already!
Sending same back to you :)
Rachael xx

Anonymous
29.07.2015

Hi Rachael
Lovely to hear from you again but I must apologise for not replying sooner. Colin and I keep thinking of you and saying how sorry we are that you are having to face all this. You say you are always on line and I remember that I used to like receiving text messages from friends and family. I never wanted to talk to anyone on the phone as phone calls don't always come at good times. When I was going through big Bertha (my nick name for the stem cell autograft) I was so upset when my mobile phone was stolen whilst I was being wheeled down for an X-ray. Unbelievable isn't it! If you fancy texting, my mobile number is 07793 293733, but you may prefer to keep in touch via email on my blog. I wish I had known about LLR when I was going though everything as I felt that nobody really understood how I was feeling and what I was facing, although I know that everybody's journey is different.
LLR is such a wonderful organisation and the funding into research projects means there are always new treatments becoming available or are on the horizon. I found that my Specialist Nurse was a blessing as she was always contactable by phone. Colin was always ringing her for advice and reassurance. In fact we still have hugs and chats when I have my checkups at the Marsden. Even though I know it's so difficult, keep yourself focused on day by day and remember to never ever give in. How is your radio therapy going? Is it daily for 6 weeks? I remember getting a rota going for friends and family to take me to the hospital for mine as Colin was at work so not practical for him to take me.
On a lighter note, I am signed up for doing the 52 mile LLR London Bikeathon on 16 August. The trouble is I've been suffering from bad Labrynthitis which is an inner ear infection and badly affects balance so, not idea for a bike ride! In fact, Colin had to ring for an ambulance last week and I was taken to A&E as my balance became so bad and turned into a panic attack. You may also like to know that the Bikeathon posters are all over London in tube stations, mostly at the top of the tubes near the exits. I am actually in these posters proving that anything is possible, even a modelling assignment!
One more thing, I live near Epsom Downs in Surrey.
Thinking of you and sending more love, hugs & strength.
XxxAnnxxx

Anonymous
29.07.2015

Hey Ann :)
No need to apologize I'm just happy to read your response and the fact you and Colin had me in your thoughts was really heartwarming to read...
I will take your number thanks :) I'm a texter/whats app girl so up to you which of those? I cannot believe that happened to your phone gosh that's so low!! The support nurses are diamonds and I have one that follows my journey in the hospital and I'm not even her patient! I am so thankful for all the medical teams work.
Congrats on your LLR fundraising and poster pin ups lol! sorry to hear you went in hospital hope your feeling a lot better now. I start radio in 4 weeks and it will be for a duration of 3-4 weeks. I will keep writing on my blog and finding other fighters to converse with.
Wishing you well.
Rachael xxxx

Anonymous
30.07.2015

Hi Rachael
I'm loving the fact that your support nurses are diamonds! Such a great way to describe them, wish I'd thought of that:). Good luck with the radio therapy. Just a thought, buy a stack of ginger biscuits as sometimes it can make you feel a bit sick and these will help. In any case, it's a good excuse to munch on them. Let me know how it goes. I found it much easier than the chemo. I do what's app & texts as well, so you choose. Take care & I hope you've managed to find some more NHL bloggers. Love, hugs & strength. XxAnnxx

Anonymous
05.08.2015

Hi Ann, I grew up not so far from where you live but have lived in Munich Germany now for 40 years. I've been sitting in front of this machine for too many hours today, feeling rather lost. I got a bit of light when I came across your wonderful story.
I know the Marsden well, had the privilege to travel a hard road with my sister who was diagnosed with lung cancer Jan 2010 and died Oct 2010 at the age of 62. Then in 2012 on my 62 birthday I was diagnosed with Diffuse Large B-Cell Lymphoma stage 1a. I had just returned from a wonderful 3 week holiday in with my daughter and granddaughter. I also had 6 cycles of R-Chop every 14 days. I was in complete remission in January 2013. Wonderful!!! After that I also wanted to fulfil a few dreams. End June after again a long holiday I noticed lumps on my neck, exactly as in the first diagnosis but now on the right side of my neck. So came back to Munich earlier than planned and since then it's been a roller-coaster ride. 2 weeks ago I had R-DHAP and yesterday came home after successfully harvesting stem cells. I think I should be feeling happy that it has worked till now but I can't really get my head round it. I was feeling so healthy before this happened, and now just wait every day to get weaker. Hate the thought of doing this to my children again. What I don't understand I have to have another cycle of R-DHAP before I get the "Big Bertha" even though no salvaging of stem cells has to be done, at least I'm grateful for that. Anyways I'm sorry to hear the last part of your story and do hope that your back on that bike soon. Munich is a wonderful place to cycle they have really good cycle ways. A few years back I cycled with my husband to Vienna another Wonderful!! So take care and thanks again for the hope xxx

Anonymous
10.08.2015

Dear Elsie,
So sorry for the delay in replying. Thank you for reading my blog but I'm so sorry to read about your sister and also to hear that the NHL has returned and that you're back on the horrible chemo. But, the good news is that they were able to harvest enough stem cells which really is a positive thing and something to cling on to. So well done for that. I remember only too well that feeling of relief when they had managed to collect enough of mine. I'm not surprised you can't get your head around all this. It's such a shock, especially as you've been in complete remission for 3 years. I know everyone says it but take each day as it comes and take one step at a time. LLR are brilliant and I'm sure they would be able to give you some helpful information.
It's a coincidence that you grew up in my area before moving to Germany but sad that your sister was under the Marsden. I have never been to Munich but it sounds like that could be another one of my cycling challenges! Unfortunately, I was due to do 52 miles in the London Bikeathon on Sunday but I've had to pull out as I have severe labyrinthitis at the moment which is badly affecting my balance. Not ideal for cycling! I'm so disappointed as I am in the posters promoting the event and in many of the London Underground stations. By the way, well done for cycling to Vienna, I bet that was fantastic!
I wish you all the best with your Big Bertha. Stay in touch as I'd love to hear how you are getting on.
Sending love, hope & strength
XxAnnxx

Anonymous
21.08.2015

Thank you so much for sharing your inspiring story. Hi am Rajesh 43 yrs young Really it's inspiring.....as I am going under treatment for NHL DLBCL Stage 4 and want through 8 cycles of R-CHOP and currently as per PET CT scan few of the nodes are active. Hence my doctor suggested to go for 3 cycles of RICE and then Autologous stem cell transplant. However 2nd opinion doctors say took a biopsy of the active node and check for the active disease and proceed further. Hence yesterday did he biopsy and waiting for the test results which will come in 4 to 5 days. Looking forward for nigative result which will give me great relief from the future treatment and can continue my daily routine work in full swing and may be I can ride a bicycle tour like you. Thank you.

Anonymous
24.08.2015

Hi Rajesh
Thank you so much for reading my blog and I really hope that it has inspired you in a small way.
I am so sorry to hear you are having to go through all the treatments and procedures for DLBCL and I remember only too well how tough they can be. I am keeping everything crossed for your biopsy results and hope that you have some good news. I know you must be feeling very anxious but try to keep strong and stay focused and take each day as it comes. Maybe you would find the LLR (Bloodwise) booklets useful which the patient support team can email to you.
Let me know how you get on and thank you again for reading my story.
Kind regards and good luck for the future.
Ann