A Blood Cancer Tsunami hit me three years ago today

I woke this morning feeling very sober. But also very glad to be alive. Mixed motions for sure. You could even say that I was “sorrowful yet always rejoicing.” which resonates with my experience these past three year

At almost the exact time I am writing this article three years ago I was attending a private hospital appointment with my wife having already been driven to an NHS hospital that morning for yet another IV antibiotic injection to try and treat the pneumonia that was stubbornly refusing to go away.

Nobody at the local hospital seemed to understand that I was getting sicker not better and that my immune system was clearly severely compromised.

I had been an inpatient or day hospital patient ever since I more or less collapsed on the 28th April 2017. It was something of a sliding doors moment as I stepped off the underground train and felt my legs give way. My life as I knew it came to an abrupt halt that day on the way home from an otherwise fairly normal day in the office.

Back in April 2017 a surreal trip to A and E somehow led to me being sent home, despite being confused and unable to walk, but with a pneumonia diagnosis and only oral antibiotics. I was admitted to hospital within a day or two, that part is quite hazy.

On the 1st May 2017 I was told that I almost certainly had a slow growing (or chronic) form of [blood cancer. That happened whilst I was lying in a hospital bed alone. A haematologist at the first hospital called me on the phone and told me that I must come see them urgently, but that I shouldn’t worry as it was ‘only’ a chronic Luekaemia! Nobody should get such news in such an impersonal way.

The fact I am a doctor didn’t help at all since any knowledge I might have remembered at that point would have been 22 years old . It turns out Dr. Google is a bit more up to date but still rather behind the times. Better to turn to accurate sites run by charities such as Blood Cancer UK, but I didn’t know that at the time.

I then spent a brutal 19 days waiting for the formal confirmation of the diagnosis and throughout that time was denied any contact with a cancer doctor or nurse despite being an inpatient for much of that time. I begged the nurses every day to bleep the on call haematologist. They said they would. But it eventually turned out such a person didn’t exist in that hospital. I now firmly believe no blood cancer patient should be admitted to a hospital that doesn’t have resident blood cancer registrars on call in the hospital. And yet many do, sadly risking lives.

As I waited to see the doctor I couldn’t see how it was possible that I had a slow growing blood cancer since I had normal blood results just a couple of months before . Eventually I would discover that my Full Blood Count (FBC) simply hadn’t been performed that day. But it certainly didn’t help the stress I was feeling that fateful morning of the 20 May 2017.

The private doctor was kind but very brief and had no information to give us. My world coming crashing to an abrupt halt. It has never fully restarted. I should say at this point that many people with a similar diagnosis to mine have no symptoms whatsoever and some are able to avoid active treatment for two decades or more. Please do not assume that my story will be your story.

Within a few short months in November 2017 I would need emergency surgery to remove a massive tumour of both tonsils that was trying to smother me to death. I was breathing through a gap no wider than a straw and woke up choking the second I started to drift off over several days as they worked out what to do.

One doctor casually told me on the ward round that it was most likely an aggressive lymphoma, assumed to be an acute transformation (the so-called Richter’s syndrome). The histology of the removed tonsils revealed it was “just” the CLL and so I really wished that doctor hadn’t a different diagnosis to me. I would have another surgery for lingual tonsils in February 2018, and take chemotherapy from October 2018 to April 2019.

Blood Cancer has been like a tsunami in my life ever looking for new ways to try and kill or destroy me , my dreams, my career, my hobbies, my charity work, my writing, my ability to watch TV at one point, and yes even all my relationships if it could. I have been grumpy at times, distracted, detached from the goings on of normal life. And so I have had to learn how to manage my emotions. Which sounds so civilised but sometimes is about as easy and apparently impossible as herding cats .

Sixteen months after that fateful day, I finally lost whatever was left of my dignity . For almost a month between my first and second chemotherapy cycles I lay in a hospital bed needing nurses to help me get on and off the camode. Imagine that I was glad to be finally able to use a Zimmer frame and hence be discharged. This was a small step forward towards some recovery of health. And I am grateful that slow journey has continued, but I do still have a long way to go.

A year after stopping chemo I am still in a deep remission , and their tests are not sensitive enough to detect the few cancer cells they tell me are almost certainly still there. I am supposed to watch and wait all over again, knowing that my old enemy is almost certainly hiding and regrouping. Meanwhile his three thug friends are not relenting so the gains I have seen in my quality of life have not been as great as some. But having said that the difference between how I was at my worst and how I am now is light and day so again I have much to be thankful for.

But lets go back to Adrian and his wife three years ago today. The car journey home was too short to talk enough about it. So we stopped briefly at the side of the road but felt we had to rush to not arouse the suspicions of the children. Then on arrival holding myself together since we had agreed not to tell them straight away. I was afraid that I would ruin the A level and GCSE exams that two of our five children were facing later that month. Months later I discovered one of them found out by secretly opening my doctors letter before we realised it had arrived.

I remember as soon as my family had gone to sleep I collapsed into floods of unconsolable tears . Through the haze I somehow searched for a real specialist in the type of blood cancer and came across the largest blood cancer unit in Europe: UCLH. I saw they had a 24/7 nurse specialist helpline for patents. Cheekily I noticed it didn’t actually say their patients.

So I called it, and I had my first proper contact with a compassionate unhurried NHS hero . It was his night shift but he talked me down, explained that they would normally use different stronger antibiotics to the weaker IV antibiotic I was still on daily at the other Hospital. We came up with a plan to get me referred.

I will forever be grateful to that nurse and to the Internet forum (a bit like this one) which suggested a specialist was needed. I had to fight for another two days to make it happen. Somehow I knew it was a fight for my life. I had to complain formally to force the local consultant haematologist to come see me for the first time. He refused to make a referral, yelled at me, and told me he would now cancel the follow up appointment he had booked for me in three months. His plan had been to leave me in limbo for all that time seemingly oblivious I was struggling with a bad infection. He explained he had kept the result of the flow test secret from me and my other doctors because he did not believe that even with the diagnosis my immune system was affected. He never examined me.

The following day, the 23rd May, was dreadful yet glorious. I somehow shuffled into a GP appointment looking increasingly grey after yet another injection at the hospital. A second opinion referral was faxed. That afternoon I had a severe rigor and temperature. This was the first time I had a fever due to those lazy white blood cells only finally deciding to wake up. But I was beginning to go into sepsis . So I was admitted that afternoon for the first of five times so far to the famous UCLH tower. And they saved my life with IV tazocin. By then though I had lost muscle strength I have never managed to fully regain.

Incidentally it turned out that since April 2017 so far I have never managed to have another fully normal day in the office again. I did try and work in a limited way for a few months after I finally recovered from that pneumonia. Ironically given what is happening in the world at the moment, I spent those months working mostly from home, or actually my bed, long before it became almost fashionable.

It wasn’t really working for me or my employer and ultimately I accepted advice and came to the painful decision it was time to stop fighting the inevitable and go on to long term sick leave. I am still in that position still and am blessed to be receiving sick pay even now. Again something to be hugely grateful for.

Twin muggers now relentlessly follow me everywhere I go: fatigue and repeated infections. Their attacks are vicious, although it is true they got a lot worse when I was becoming sick enough to need treatment, and they do go just a littler easier on me nowadays. But never a day goes by without feeling like I am seriously sick, and should just rest. The only feeling I ever had that was even remotely like this before cancer was when you are in the middle of the flu and it is a mammoth task to even get out of bed.

And as the years go by a third mugger has joined them: increased immune reaction to pollen, dust mites and who knows what else. I am told by the Immunologist that my remaining white blood cells are a bit lazy and don’t respond well to calls to go to work fighting bacteria and viruses. But as they sit around the pool drinking they seem to like having a rave and partying in response to allergies and even in one small area my own cells. People with certain blood cancers are at greater risk of allergy

And today I am sitting in the same bedroom I left thirty years ago in my parents house. Talk about boomerang generation, who expects to be living at home even temporarily at 49 years old? But we made this decisions due to the inability to safely shield at home for months since my wife is a key worker and some of the adult children help at the food bank. I felt there was no alternative but to come and self isolate strictly with my parents who keep asking me not to refer to them as elderly online. My father also has blood cancer, although three years ago today we were blissfully unaware of that fact.

As a result of this experience and hearing from other patients, I do think it is so important people with blood cancer are usually treated by an expert in their condition where possible. More of that in another post.

The night of the 20th May 2017 was the first of many sleepless nights since . They tell you that it gets better and it really does. But the memories never leave you and are as fresh raw and painful today as they were three years ago. I have had good days and bad days since. But I have not had a single day where I have got through the day without thinking of blood cancer, it is impossible because of the effects it had on me.

And yet not all of the effects have been bad. I am a more compassionate person and have been forced to learn how to calm my soul, even practicing meditation.

Mixed emotions for sure. I am angry that this blood cancer has destroyed my promising career. But more thankful to be alive than I ever was, and more determined to try and do some good for others.


Oh Adrian!! You have been through SO much and I really feel for you and your family. Anniversaries of diagnosis day are so strange - as you say, a mixture of being grateful for still being here, but also all the memories of shock, disbelief and questions about the future. I am so sorry that your time of diagnosis was handled badly by the medics but I am glad that it sounds as if you are getting good medical care now. Thank you for sharing so deeply and for your openness and honesty. I hope it has been helpful for you to share in this way and that you can continue to find support from this forum and from Blood Cancer UK. My very best wishes. Willow


Hi Adrian, this post isn’t just a tsunami it has had a profound effect on me overnight. Obviously the way you put pen to paper so effectively means I felt I went on your tsunami with you. The mixed emotions, the anniversaries, the current situation, the three muggers seemed to all play a part with my feelings. I visualise you sitting on your bed in your bedroom at your parents home. How and what did you tell your children and how do you feel they have all been affected?

@Adrian I wish we could say that yours is an unusual situation, unique and individual yes, but fighting to be heard is not. As these anniversaries come round we tend to think over how far we have come, but when we are shielding we tend to remember the little details as we have more time to reflect.

Our youngest was going through GCSEs when I became ill, then A levels when I was going through multiple relapses and then SCT. We could not hide anything from him (or our older children who had left home but were regular visitors). It did, however, spur me on to try and do things and not wallow. I always made sure that I got up to say goodbye to him before he left for school, and made sure that I was properly dressed when he came home…this was after a telling off after he came home and found me still in my pyjamas one day!!! Honesty with our children is most often the best policy.

I spent a lot of time in and out of hospital for two years, and right from day one, when I was admitted into a hospital where my doctor had referred me for a 2nd opinion and the cardiologist knew that I had a serious problem (a multi-disciplinary meeting took place within an hour of my admittance, involving cardiologists, cardio-thoracic surgeon and haematologists) I saw many students. One 4th year student asked if she could do a case study on me for a presentation, which caused hilarity just before my operation as she arrived in the ward with the medical photographer to take photos of my rash. The cardio thoracic surgeon asked for my permission to write a paper on my case as it was unusual. The nurses always knew that I was happy to talk to the students to raise awareness. I hope that a few patients have had a quicker (and more compassionate) diagnosis because of these conversations.

My employers were amazing, keeping my position open until i was able to return, but when I started relapsing, and then had hearing loss due to treatment, I didn’t think it fair to the GP practice, so resigned. The DWP now recognise that I am unable to work as i have other health issues from treatment. I was angry that I had had to leave a place that I had been so happy in, having finally achieved a work/life balance and a contentment in my life that had been missing for a number of years.

However, round the corner God/fate had plans for me. I became involved with Leukaemia and Lymphoma Research (Bloodwise, and now Blood Cancer UK) in 2012, when I did part of Beefy’s Walk. From then on my involvement with the charity has grown, and I am proud to be part of my blood cancer family. It has given me a purpose when I thought everything had been taken away from me. It has changed me and my life forever, but there have been huge bonuses. I have met many amazing people through Blood Cancer UK, have spoken at a number of Bloodwise events, been filmed and interviewed, been to the Houses of Parliament for a policy launch (and my MP also arranged for my husband and I to observe proceedings in the House of Commons, where she was one of the tellers that evening), been to the Royal Albert Hall and met some of the actresses in the Birmingham production of Calendar Girls-The Musical.

Early retirement meant I was around to help with my two older grandchildren when they came along, and we have a very close relationship. Shielding and not seeing them since February has been very tough on us all. I would say that one door slams very loudly in your face another one will open.

But back to you…I am sorry I have spent too much time talking about myself! How are you finding it being back home with your young parents (I have just realised my husband is old enough to be your father :joy:)? How do you keep in contact with your family? How is your wife dealing with the challenges of being a key worker? How are the children dealing with you being away from home (and keeping motivated if still of school age)?

You also mention your father has a blood cancer. Is he supposed to be having treatment and is he able to access all he needs? How is your mother dealing with the situation?

I wish all of you well. A blood cancer diagnosis changes all affected, but i think for all of our society there will need to be an acceptance that life has changed for everybody. I think some of us are probably more prepared than others.

Stay safe, and stay sane. Best wishes, Louise

1 Like

you are right I am getting the best care medically, and the support here at Blood Cancer UK is the best. I really feel I have a little extra family here and love that it covers all the blood cancers as I am here for two reasons as a patient and the son of a patient with a different form of lymphocyte blood cancer.


Oh my Erica sorry for traumatising you! There is such a thing as TOO much empathy. Tho I suspect we all have memories that resonate with at least some of what I said. My kids know everything I just didn’t tell them at the beginning. sad thing is it is part of their new normal. One time I was late home and one of them literally said “Oh are you in hospital again dad?” like they might have said before “are you on a business trip?” My youngest recently said “We really miss you Dad but we don’t want you to come home and then die, we do actually love you!” Each of them are affected in a different way but none of them like me talking about it publicly of course. But it has been a while now since I have been an inpatient in hospital tho. We just adjust I guess and the main thing is me making sure they do not just thinking I am lazy and disinterested in them.


I am so glad that you felt able to share your story too. Don’t apologise. I really want to meet you now because it sounds like we had so many similar experiences. Dont tell my employer this but I dont think it is very likely I will be going back any time soon. I am so blessed to have a long term income protection plan dont know what we would do with out it. It is nice in some ways to be with mum and dad again but makes me feel like a teenager! Food is great tho! FaceTime is how we keep in touch with some wider extended family Zoom calls. My wife is OK she hasn’t had to go out as much as she expected as she is community health worker but she is shifting jobs so may well be going out more in the new one. My kids are mostly too old for school but several have colleges to deal with (I have five kids!) Its not easy for any of them. My Dad is doing really well and his acute lymphoma has been in full remission for a while now we are daring to wonder if he is cured. So the main thing is none of the three of us are leaving the property. We can at least shield together which makes sense. I do worry for those trying to shield in a mixed house as it were. Unless you have a west wing to use as it were then it is hard to not feel that you are at risk in that situation (hence my move temporarily here). You are right that we are used to writing some plans and then have the universe laugh at them. Others could learn a thing or two from us!


Don’t worry about traumatising me @Adrian, it just shows how well written your post was. By the way reading the part of your reply to me about what your children said to you nearly brought a tear to my eye. I was just talking about shielding fatigue and I think that has meant my emotions are all over the place this week. Over the years I have become far more aware of my emotions. Take care and keep posting.

1 Like

Hi there forum family!

This is just a message to check in with you, hope you are all okay?
It has been so encouraging to read your messages so full of honesty and openness. But we also can only imagine something like this does involve recalling what can be very difficult memories and feelings. As always, please do remember the support line is here for you all, and also remember the forum will always be a space for you to share, offload, vent , have a good cry, a good laugh… anything! we’re here for you :slight_smile:


Adrian, after crying buckets as I wrote my letter of resignation, having sent a warning email to the practice manager beforehand (even though I only worked there 3 years, and the last I had been on sick leave, some of the doctors, receptionists and the practice manager visited) I then had the hassle of applying to access my pensions early. The NHS were fabulous (and the practice I worked for helped greatly) and even gave me 5 yrs enhancement. Accessing my teachers pension was another matter. I got a letter on Christmas Eve, while out from hospital for a couple of days, to say that they thought I would be able to teach again! It was laughable as my consultant had told my husband only a few days earlier that he was running out of options, and the SCT was my only chance! Eventually I did get it, and with Incapacity Benefit (ESA) we are ok, although it is not what my income would normally be. Two years until state pension…whoo hoo!
Glad you are being well fed. At least you won’t be having the teenage arguments about staying out late, and I hope you haven’t been playing your music too loud :rofl:
Just as the first coronavirus patients were being admitted to our hospital I had to go in for a burst appendix. Due to other health problems it was a longer op than normal and I was in HDU for 24 hours after. Priority was getting me home as soon as possible, which they did after 5 days. My wound became infected, so needed paramedics, who arranged for district nurses to visit daily, which they did for almost 3 weeks. The NHS is amazing and I so admire all involved…receptionists, GPs, nurses, porters, cleaners, security, district nurses, paramedics, surgeons. I am keeping my fingers crossed for your father, and I hope your wife gets through this relatively in one piece.
I am the eldest of eight! My parents (Mum 90, Dad 86) are still in their own home, and have several people popping in with shopping etc. As Dad was still doing shopping, cleaning etc I was concerned that he might ignore lockdown, but he has been very good. My daughter will be 40 next year, younger son 30 next year, and older son is 37. I have 4 grandchildren, so we are building our own little dynasty. We have occasional Zoom calls but because of my hearing problems I miss a lot of the conversation. My eight year old grandson is usually busy explaining his latest lego creation! Just nodding and saying brilliant gets me by.
Have a good week!

1 Like

Thanks for the reply… glad you got over your appendix thing that can be NASTY even without a blood cancer.


Dear Adrian, Thank you for your honesty. I too found that the hospital (a really good one) could have managed sharing my diagnosis with me in a better way. I went in with suspected appendicitis which they quickly recognised was not the concern, after the first blood sample. Another seven bottles later and after seeing increasingly more senior people they said I was staying the night. The next morning after the marrow samples had been taken and sent on a motorbike to a London hospital a senior consultant with two other consultants and about seven students came into the room to give me my leukaemia diagnosis. I had pretty well guessed what it was all about but had not been told until then. Goodness only knows what he said in the next ten minutes. I don’t have a clue my brain was frozen. One consultant spotted my angst and mouthed “ I will come back a bit later.”
I did feed back to the hospital at a later date that I would not wish anyone to be given their diagnosis in front of ten strangers. I was constructive when I did this. I can see that I was so lucky to be in a bigger hospital and will always be grateful that the Senior Consultant talked the London hospital into opening it’s labs at Christmas to test the bone marrow. It was very wrong for you to be denied this quality of care.My scores had gone up by several points over 18 hours and a wait would not have been good for me.
Even at the time I remember being totally relieved that I did not have to share the news with my father who had died three weeks earlier. You have been given a heavy load to carry with parents and dependent children. The sandwich generation squeezed by children, parents and also work have so many demands and pleasures too! A quiet space is so comfortable a place to be when you have serious health issues. I was blessed with retirement and few direct family demands. I was doing grandchild care a couple of days a week but ‘the other Grandma’ drove an hour to cover me for one day and my son-in-laws work covered him for the other day and even paid him!
I am glad that you feel stronger for your experiences. I loved my career and was very glad that I had achieved and found fulfilment ( and exhaustion) in it. It was cruel for you to be cut short and that cut will always be a wound for you I fear. Wounds heal and turn to scars, still there but less painful. I am sad that your journey has been turbulent for you. It feels that Covid will be a “Do you remember 2020 and shielding?” topic one day it is just hard to wait it out in winter.
I will think of you in quiet moments as is Erica. Keep strong and find some funny / happy moments with your parents. Try to remember them to share with your partner when you are back together.
Take care Grandma Jo

1 Like

thanks for the encouraging words. I needed to read them today as for sure I didnt feel strong today!

1 Like

Hi @Adrian, I have just responded to your other posts and do not want to repeat myself, it is OK not to feel strong today and that is why we are here to support you.
Stay safe and please keep posting so we can support you.

Sending special wishes @Adrian x

1 Like

hi @Adrian

it’s really good to hear from you, I definitely echo what our other lovely forum members have said, it’s only natural to have up and down days- and so important not to be so hard on yourself. And it was so nice to read how supportive messages on here have helped you :slight_smile:


Hi Adrian
I just wanted to pop back and say Happy Christmas to you. I know that things are probably a bit unsettled if it is anything like my Christmas and plans going astray. I wish you peace and good health for the coming year.

1 Like

Hi Adrian and @GrandmaJo. How have you both been over the last few weeks?

1 Like

Just two hours walking with family in the woodland near home and watching the seven and four year old clambering up steep slopes with their Dad whilst their Mum (my daughter) and my husband walked whilst staying well apart has filled my head with so many sweet memories that I feel lifted up.
Then a short time in the garden with hot sausages and breads and the children opening their gifts.
All over in about three hours. A week later still thinking about bits. The first three presents out the bag for the little lad and his sister saying don’t worry I have already got lots of toys at home! Needless to say the next three presents were hers!:heart_eyes::joy:
As everyone says “Next year…”
Time to feel blessed and stay safe.
Blood tests and Specialist call soon.

1 Like

Hello @GrandmaJo. It’s really great to hear from you! I loved reading every part of that and could picture it all in my mind. It made me smile! Just such great memories, and like you said, they really do make you feel better and lift your spirits. I’m remembering all of those special moments too. This year, they just seem to mean that little bit more.
How are you feeling about your up and coming consultation? Please let us know how you get on X

1 Like