Lynda shares her story about her diagnosis of CML (Chronic Myeloid Leukaemia). It wasn't an easy time for her as sadly, and far too often, the signs and symptoms are missed by health professionals as they can be quite vague and seemingly disconnected.

When Lynda got in touch after watching my stories, I asked her if she would mind sharing her story about her diagnosis of CML (Chronic Myeloid Leukaemia)

It wasn’t an easy time for her as sadly, and far too often, the signs and symptoms are missed by health professionals as they can be quite vague and seemingly disconnected.

Bloodwise have recently launched a campaign to change this. They say… 

‘There are over 40,000 new cases of blood cancer in the UK every year. Bloodwise’s analysis of NHS data in England found that 28% of patients are diagnosed via emergency admission to hospital, for example after becoming so ill that they go to A&E, which is significantly higher than cancers on average.

Just 40% of people with blood cancer live for three years or more if they are diagnosed as an emergency, compared to 77% of those diagnosed via their GP. Patients who are diagnosed as an emergency also have fewer treatment options and are at a greater risk of serious side effects.’

You can read the entire article HERE .

Lynda refers to this huge problem in the post and I will add a link to the petition. 

Luckily for Lynda, after many visits to the doctor, she eventually got her diagnosis. And her prognosis is good. Luckily she was persistent. Not everyone would have been persistent. 

So here is Lynda’s story, in her own words 

 

‘One year on from Chronic Myeloid Leukaemia Diagnosis 

D.Day 18th March 2019.

I left my classroom at 10.30 am  break time to attend my Haematology appointment – I remember looking back at all my pupils busily working away as I said goodbye to my teaching assistant telling him I’d see him tomorrow- that’s the last time I was in the classroom- 2 hours later I was told I had chronic myeloid leukaemia- and my whole world collapsed around me.

Six months previously, I had just returned from a holiday of a lifetime; inter-railing around Scandinavia and Europe. My husband had arranged for me to have a full medical as part of his company’s benefit scheme. It seemed a prudent thing to do, after all he had  them annually but  I’d never bothered . I had been well and  was starting to enjoy my ‘empty nest’ status. I had just accepted a full time teaching contract at my local village school and was enjoying being able to focus on my career again. Whilst travelling, during one of the hottest summers on record, I started to experience palpitations and despite the sunshine, I still looked a little pale. I developed a cough which I put down to air conditioning in hotels and overheated trains .At the end of the holiday, I was exhausted but we had visited  15 cities over a three week period. Looking back, the signs were starting to emerge – but I didn’t know that.

The health check highlighted an irregular heartbeat and the  doctor advised me to have further investigations but thought it was probably related to stress and nothing to be too concerned about. Then, two days later she contacted me again, this time to tell me that my blood test results were in and that I had an irregular blood count – raised blood platelets. Again, she suggested it was nothing to be concerned about and that this often happens when people are fighting a virus of some sort . She advised me to get my blood checked again in a fortnight as a precaution.

I didn’t think too much about it at the time, I was more concerned with getting my irregular heart beat checked, after all your heart is a pretty important bit of kit and had top priority. So we used our private health allowance to embark on a round of consultations, ECGs and an Echocardiogram . All of which  proved inconclusive other than that I had a benign ectopic heartbeat – one of those things and nothing to worry about. No treatment required.

I was back at school by then  and my retest showed that my platelet count had risen from its original reading. My GP wasn’t at all concerned but suggested that  we monitored  it and booked a blood test a month later. In the meantime, I  had started to have severe headaches and  a pounding in my head that was stopping me from sleeping. The headaches, when they came, made me feel nauseous and I found myself reaching for Nurofen with Codeine to ease the pain. My cough had worsened and  I just couldn’t shake off ( but then I was surrounded by children with sniffles – why would I be concerned ?)

In the classroom, I was struggling . I didn’t have a difficult class, but each day was getting harder and harder to get through . I lacked energy and motivation. I would arrive home from work, collapse in the chair and sleep for a couple of hours before snatching a quick ready meal for supper. I would crawl into bed after a couple of hours prep knowing that the exhaustion wouldn’t go away by morning. I was starting each day on an emptier tank than the day before. I was starting to run on empty. I was exhausted- but  I kept telling myself, this is what happens when you’re a full time teacher at 57 – isn’t it ?  When the weekend came round, the fatigue didn’t go away. It was all I could do to keep on top of the house  and shopping. I was just existing. I wasn’t sleeping and dissolved into tears at the drop of a hat. I started to think that I was past my best and that  old age had caught up on me  – so started to consider taking early retirement.

By October half term, my GP had taken advice from the haematologist and suggested that despite my platelets having risen again, that I should take some iron tablets and then have a recheck. My husband and I booked a few days in Malta thinking the sunshine and warmth would act as a pick me up – but it didn’t- despite a week lazing in the sun- I looked tired and grey.

This time after my retest, I received a call at work, they were now referring me to a consultant haematologist as  my platelets were still increasing. I asked my GP categorically if this was a referral for blood cancer, but he said ‘no’. This was two  weeks before  Christmas, school was chaotic, the children were excited and I went into meltdown.  An NHS referral before Christmas wasn’t going to come through anytime soon. My appointment was booked for February half term. How was I going to carry on until then 😩?  We decided to use our dwindling private health allowance to see a private haematologist early in the New Year. Without all my blood 🩸 results,  (private and NHS don’t share computer data ) the consultant came up with a  diagnosis of  thrombocytosis – and when asked if it could be blood cancer – said he didn’t think so without doing a wealth of expensive blood tests – which my private health allowance would not cover – I had to wait for my NHS appointment after all.

The fatigue and headaches persisted along with the chesty cough, but other symptoms developed too – night sweats (but I’d just come off HRT ) weight loss (but I’d been so busy I knew I wasn’t eating well ) nose bleeds (but I’d always suffered with them but not as frequently)  itching, bleeding gums, bruising.  All of which I now know  are symptoms of blood cancer, but I’d been told that it wasn’t – I  trusted the medics and tried to carried on with my life ; fatigued. By the time of my appointment in February, this way of living was the new normal and I had adjusted to cope with the tiredness. I just woke, did my job, ate, slept – on repeat – I had no energy for anything else.

The consultant I saw in February was equally vague, he commissioned a whole batch of blood tests and mentioned that the blood irregularities could be corrected with a chemotherapy- my heart stopped, my mouth dried, and when I managed to question his use of this term he said that all medication is a form of chemical therapy- he’d managed to send me off the scent again, I had to wait 4 more long  weeks for the results.

March 18th 11.30 am – my appointment is running late, when at last my name is called, the consultant’s body language hinted that this wasn’t going to be good news .

“How have you been ?”she said “Fine,” I replied  “I’ve been at school this morning” She looked at me sympathetically and reached for a booklet on her desk. “The test results show you have chronic myeloid leukaemia, it’s not curable ……… several treatments we can try …….if you respond ……..if ……..?”

I can’t recall much from that appointment other than the word “leukaemia” and  reaching for my husband’s hand to steady me. You see, my grandfather had leukaemia, back in 70’s and had died – back then there was no cure, in fact he was involved in the first clinical trials for the medication that would ultimately save my life !

I walked out of that hospital numb, and then I remember telling my husband over and over how sorry I was. Sorry that this illness was going to change all our future  plans; sorry we wouldn’t be able to grow old together; I thought I was going to die.

I  left clutching my Bloodwise booklet which explained in medical terms my form of blood cancer. I was given an appointment to see the consultant again in 2 weeks and in between times I would also have sessions with the specialist cancer nurse to explain my treatment. But I needed help NOW ! I went to see  my GP who really didn’t understand this form of cancer – and in his best bedside manner explained I probably had between 3 and 5 years to live!

That was it ! I couldn’t wait 2 weeks to see the consultant I made an appointment with the specialist haematology nurse who turned out to be my 👼 guardian angel. She sat me and my husband down and through my incessant sobbing and handing out copious tissues explained that being “chronic” was good – that it was slow growing and that with the new research into this form of cancer, though it wasn’t terminal it couldn’t be cured, could be treated  with daily chemotherapy tablets called TKI (tyrosine kinase inhibitor) which  would slow then block the development of the cancer cells. However, I had to take the medication for 3 months before they could establish whether this particular tablet was the one for me , and then at 6 months I would receive a PCR test which would measure the level of cancer cells in my blood – I had a fight  on my hands but did I have the energy needed ?

I was ill for several weeks until slowly but steadily symptoms and side effects started to fade away . By 2 months I had achieved haematological remission (my blood levels were  back to normal) and by 4 months my PCR readings showed that the cancer levels had dropped significantly and by 6 months I had reached a MMR- a major molecular remission. The TKI’s were doing their job – only now could I accept that everything was going to be alright. It has been a long journey, that has taken its toll on me mentally. It  has taken me many months to accept that I will always have cancer; I’ll never be cured. Cancer is now part of me – of who I am. I have undergone several months of therapy to help me move forward with my life. After  much deliberation, I have decided to give up my career and focus on life and living. With thanks to the amazing cancer research scientists, I have the chance to live a full and happy life with cancer. So  I’ve got to make each day count and make the most of every minute.

Cancer has taught me to live!

I wanted to tell my story because it illustrates how so easily symptoms can be overlooked by ourselves and the medical profession. Blood cancer is often the most difficult cancer to diagnose because it isn’t visible or tangible – as you  can see most of  my symptoms can  be attributed to other illnesses.

 Thousands of people with blood cancer are having to go to their GP again and again because their symptoms aren’t being acted on fast enough.That’s why Bloodwise – the blood cancer charity is petitioning  the Government to end the injustice of people with blood cancer struggling to get a diagnosis. GPs need more support to recognise blood cancer more quickly. They are asking  Government to  plan to ensure that GPs are:

  • Using the latest guidance on blood cancer symptoms
  • Following up with people whose symptoms might be blood cancer
  • Regularly referring people with symptoms for more tests if symptoms don’t improve

If I hadn’t persisted, my leukaemia would have progressed to the blast phase and my outcome wouldn’t be so positive. Writing this blog post has made me realise that so much more needs to be done to raise awareness of blood cancer and that I am one of the lucky ones – my cancer isn’t terminal – it’s not curable either – but thanks to advances in medicine it is manageable – enabling me to live a full and normal life.’

THANKYOU so much Lynda, what an amazing post, full of information and written straight from your heart. THANKYOU xxx

If you would like to talk to Lynda about CML, here is a link to her Instagram page 

 

The delays in diagnosis will be and are, costing lives. Doctors need more support and we all need to be better educated on the signs and symptoms of blood cancer.  Here is what Bloodwise are campaigning for.

‘We are calling on the Government to end the injustice of people with blood cancer struggling to get a diagnosis.

GPs need more support to recognise blood cancer more quickly.

Sign our petition to demand the Government ends the delays in blood cancer diagnosis, by giving GPs the support they need.

We’re asking for a Government plan to ensure that GPs are:

  • Using the latest guidance on blood cancer symptoms
  • Following up with people whose symptoms might be blood cancer
  • Regularly referring people with symptoms for more tests if symptoms don’t improve

Our voice is only as loud as the number of people we’re talking on behalf of.

With your help we can #EndtheDelays

For you, or for your loved ones’

To sign the petition please click HERE

Do YOU know 5 signs that your symptoms might be blood cancer? Lynda mentioned her symptoms and you can see how disconnected they seemed. I’ll list some symptoms here.

  1.  A lump. A swollen lymph node that doesn’t go down after a week or so. Usually in your neck, under your arm or in your groin. These nodes are closer to the surface and easier to feel.
  2.  Drenching night sweats
  3. Extreme fatigue. Can’t put one foot in front of the other fatigue. The kind that doesn’t go away even after a sleep.
  4. Itchy skin
  5. Unexplained bruising.

Also  – flu like symptoms, tummy pain, lower back pain, unexplained weightloss. An inability to get over little infections so you just seem to get cold upon cold, for instance.

You may have none of these symptoms, or just one nagging away. You may have a few of these symptoms. Please do not be alarmed. The chances of it being blood cancer are slim, HOWEVER you should probably see a doctor and say BLOOD CANCER out loud. Your doctor may call for a blood test. (Confusingly, Gav’s blood tests were always normal) If your test is normal and you still haven’t got any answers, GO BACK. I strongly believe that we need to take charge of our own health and if we feel something isn’t right, KEEP GOING BACK. Doctors are busy. They are not mind readers.

SAY IT OUT LOUD to your doctor –

‘COULD THIS BE BLOOD CANCER?’

 

This is what Bloodwise says

‘Most people with these symptoms won’t have blood cancer. But if you experience any, it’s really important that you find out what’s causing them, quickly.

If you have any symptom that’s persistentunexplained or unusual for you, book an appointment with your GP.

If you suddenly feel very unwell, seek urgent medical help.’

If you need more information about any type of blood cancer, Bloodwise has excellent info HERE

As ever, thankyou for reading

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