Aged 48, in 2004, I was single and working part-time as Clinical Specialist Occupational Therapist at an M.E. Clinic for Swindon & Wiltshire, based at a GP Surgery in Swindon.
I have lived with M.E. since 1982 and prior to medical retirement from my post as Deputy Head Occupational Therapist at our local NHS Hospital in 1993, I specialised in Rheumatology which involved, amongst other things, helping patients manage energy and fatigue levels. This, together with my personal experience, was ideal for helping patients with M.E. to learn to live within and gradually increase their abilities and I was thrilled to be working and using my experience once again. I sang in our Church Choir and local Choral society, enjoyed trips and meals out with friends, holidays both home and abroad, Classical Music Concerts (I particularly loved going to the Royal Albert Hall) and driving.
I was under the long-term care of a Consultant at the Royal London Homoepathic Hospital (for the M.E.) who did various blood tests for me including a Full Blood Count (FBC) every 6 months. Early in 2004 he wrote to me to say their Haematologist had noticed anomalies in my White Blood Cell (WBC) & Lymphocyte counts over the past couple of years and that he’d asked my GP to refer me to a Haematologist locally. My immediate thoughts were that I might have leukaemia.
I had an appointment with my GP a few days later to discuss it, she was pretty sure there was nothing to worry about & she had already made the referral. The GP with whom I worked with had the same opinion.
Having medical knowledge, I wanted to know more about possible diagnoses so did some research on line, and confirmed my fears that I could have a form of blood cancer. I was understandably worried despite the reassurance I had been given. I didn’t have any new symptoms indicative of blood cancers and was used to living with varying levels of energy and fatigue.
I first saw the Haematologist a few weeks later when possible diagnoses, including possible chronic lymphocytic leukaemia (CLL), blood tests were taken and following a physical examination, she wasn’t too worried. My WBC & Lymphocyte counts had been slightly raised since 2001, not at a count when any type of leukaemia or other blood cancers would normally be diagnosed.
She explained that CLL was quite a rare diagnosis for my age and the best prognosis she could give me was based on older people, which wasn’t the best thing to hear. She told me I would likely not need treatment for some years and that may start as daily antibiotics if I had repeated infections, later it would be chemotherapy taken orally, which didn’t sound too bad.
At this appointment I was introduced to Jasmine, a Haematology Specialist Nurse who would be (and still is) a point of contact for any worries I have. I was also told that having CLL would increase my risk of other cancers, particularly with me being pale-skinned, skin cancers. I was given advice sheets on care in the sun and living with CLL.
I didn’t say much about all of this to my 86 year old Mum, as my Dad had died from prostate cancer in 2003, but decided to wait until I had a definite diagnosis. However I talked to friends which produced varying reactions, the most common being ‘you’re too well to have leukaemia’ and ‘oh no, does that mean you’ll be having chemo?’. I soon came to realise most people didn’t and still don’t realise that leukaemia can be acute or chronic so not only was I trying to understand it but I had to help my friends understand what was happening.
Early in June, just before leaving for work I received a letter from my Consultant (as we had agreed) confirming that I had CLL. I arrived at work a blubbering wreck, I think that until I saw it in writing I didn’t really believe I could have CLL. Everyone was shocked and the GP I worked with took time to sit and talk it through with me. I was in no state to see patients so my clinic was cancelled and I was sent home.
Then came the difficult task of explaining it all to my mum. A friend’s daughter, also named Jane, had recently died from acute leukaemia so I had to word it carefully and make sure that she understood that CLL wasn’t life-threatening / changing at that time nor likely to be so for some years. She took a while to fully understand and unsurprisingly was initially very distressed. I explained it by telling her that it could cause the same type of low energy and tiredness as I had with the M.E. I tended not to mention it too often, usually telling her that my blood results were still good.
I saw my GP again a few days later and she was shocked at the diagnosis. As I often had colds and throat infections she had presumed that the abnormal results on the blood tests she’d done over the previous few years had been because of these infections at the time.
I had one last appointment with the Haematologist to plan my management and answer my questions; she put me on Watch and Wait, advised me to have the annual flu vaccination and discharged me to the care of my GP with ongoing contact with Jasmine as I needed.
Then began living with CLL: 6 monthly FBC tests, annual lymph nodes and spleen checks with my GP, each preceded by a few weeks of anxiety about what my results would be – the Watch and Worry! I was prescribed 4 types of antibiotics for me to keep at home so I could start immediately if I got bacterial infections.
I had been with my GP for 13 years (and would continue to be so until she retired in 2018) so she knew me well and liked to see me every few months to keep an eye on me, particularly as I had, by then, a tendency to depression and seasonal affective disorder. She would also see me at the end of her surgery if I had an urgent problem or phone me back if I didn’t need to be seen. Great continuity of care with someone I had totally trusted.
Life carried on much as before diagnosis for the next year but then I had to give up work again as the M.E. had worsened after I had a Hysterectomy in July 2005. I was advised to have the ‘total’ hysterectomy including ovaries and cervix as that would remove the risk of cancer in those organs. I don’t cope well with anaesthetics and am very light and noise sensitive. Thankfully I was given a single room to reduce my risk of infection and allowed to recover at my pace.
I continued to have the usual colds and throat infections, occasionally needing antibiotics, but within the limitations from the M.E. lived my ‘normal’ life.
I went on a few cruises with a school friend to celebrate ‘significant’ birthdays, both of us quickly enjoying life at sea. I usually had an upper respiratory infection on my return home but these were usually viral and only once needed antibiotics.
In 2008 the M.E. became even worse and I had so give up singing as I no longer had the stamina needed, I also reduced my social activities.
So far, so good, until October 2013 when I went on a much needed holiday to a favourite hotel with another childhood friend. My mum had died in the January and being an only child I ended up exhausted from everything involved with that. Unfortunately I became very unwell 2 days in, a local GP was called and he diagnosed flu, my temperature was 40℃. I was very unwell for a few days.
Once home my chest wasn’t feeling great so my GP came to see me, I had a chest infection so started on antibiotics. 4 days later I was very short of breath & kept almost fainting so I called 999, resulting in being admitted to hospital, diagnosed with double pneumonia.
A cocktail of 3 IV antibiotics for 10 days sorted me out and I came home on day 14, very weak and quite shell-shocked that I had been so unwell and narrowly avoided ICU. While I was in Hospital my Haematologist came to check in on me and I had one appointment with her after discharge, then back to care of my GP.
This all happened two weeks after having Flu & Pneumonia Vaccines so I was quite confused. Now, knowing that it can take 3 – 4 weeks to build immunity and with results from studies of Covid-19 vaccination response in people who have CLL showing only partial response, I understand.
Over the next few years, life was again much as ‘my’ normal – limited physical activity, energy being reserved for time with friends and food shopping (exciting), with my 60th birthday celebration and 2 cruises in 2016. Thankfully since 2013, I’ve only had a few chest or throat infections, often viral and usually following a cruise but also during a cruise to the Caribbean over Christmas & New Year 2016-17.
That was a mad thing to do but it had been a dream and an unexpected inheritance, plus the support of my GP told me that I should do it. Apart from 4 days with a viral infection, I had a wonderful time.
Once home I was exhausted and I developed the usual chest infection and needed antibiotics which thankfully did their job. However, the combination of being very tired from the cruise, infection & antibiotics resulted in a marked relapse of the M.E. leaving me much less well and my level of activity much reduced which hasn’t recovered to previous levels.
Through all these years I have continued with the 6 monthly blood checks and yearly glands and spleen checks, just under the care of my GP. My WBC and Lymphocyte counts have steadily increased and 5 years ago both reached 100 and I still had no symptoms. Since then the increase has remained steady without symptoms.
I’ve continued to have access to support from Jasmine as needed, thankfully that hasn’t been often but she always remembers me and does what she can to help & reassure me.
I have reduced my social contact, particularly if it involved being with a group of people to negate infection risks.
Until November 2019 I’d not really felt any effects of the CLL. Unfortunately, since then my energy levels markedly dropped and fatigue has really kicked in: it’s a different fatigue to that caused by the M.E. and I am often short of breath. Physical activity became more difficult and life became a struggle. Having always loved driving and the freedom it gives me I’ve gradually lost confidence as my concentration and stamina have decreased. I now only drive locally but miss my motorway trips to see friends around the country.
I’ve had a cleaner for the past few years as that is something I don’t have energy for, I’d rather use what I have for being with friends.
As I am sure for most people with any form of blood cancer, I felt extremely vulnerable and scared when Covid-19 hit. I put myself into lockdown early in March 2020, having secured Supermarket deliveries weekly until mid-May! I didn’t think how long it might be for, rather that I was doing it to keep myself safe. Like most, I certainly didn’t expect it to be for the best part of 16 months.
Having not received the ‘Shielding letter’ in March / April 2020 I contacted my GP Surgery asking to be put in Shielding, only to be told to ‘do it yourself if you think you need to be on it’. My reply was, ‘I don’t think, I know!’ Sadly I know I wasn’t alone in this situation but was reassured by Leukaemia Care that it was being addressed with the Department of Health. While I appreciated it was a totally confusing time for everyone I was scared. This late addition to the shielding list didn’t really affect me and once on it, I was assured of continuing regular supermarket deliveries and prescription deliveries which my Pharmacy had already agreed to.
I had to laugh when 7 weeks into lockdown one of the Government Food Boxes was delivered! I could have starved to death by then, I didn’t need them so cancelled further deliveries only to be told I could have them and give the food I didn’t need away! I insisted that I didn’t want further deliveries. Even worse was a call from the Health and Wellbeing Practitioner from our GP Surgery 11 weeks in to ask if I needed any help, I very politely told her that it was a bit late to ask.
I have been supported by my few good friends locally, particularly one who has been walking or cycling a 6-mile round trip to check on me, also friends from farther afield by phone and social media. I have found Leukaemia Care and their CLL Facebook groups invaluable throughout the pandemic. I have particularly valued and enjoyed the many webinars, in a sense it was like going to lectures when I was working, something I missed when I had to retire.
People in my village were only too pleased to help, you just had to ask. Thankfully I’ve not had any problems securing supermarket deliveries, each driver has been great and followed hygiene & safety protocols, most also sparing time for a quick chat. One who hadn’t been doing deliveries as he was now shop based turned up just to check if I was all right as he was concerned he hadn’t seen me in store, I usually went twice a week. I was very touched and wept a few tears at his kindness.
I’ve surprised myself at how relaxed I’ve been, thankfully I am content being here, doing things at my pace and all my hobbies are done at home. So far from March 2020 – July 2021 I have crocheted 24 single bed sized blankets for ‘end of life care’ patients at our hospital (this has been a lovely project to focus on), designed and knitted 7 baby cot blankets and numerous baby cardigans (to order), besides sewing various things and pottering in the garden which I enjoy when I feel well enough, although I have help for the heavier work.
With the low energy, high level of fatigue and the shortness of breath over the previous year really worrying me and majorly impacting my already limited activity, I was referred back to a Haematologist in November 2020, by this time the previous consultant had retired so I have a new one. I came home from my first appointment feeling confident that I have a consultant I feel comfortable with and I will have great care, having been assured that any decisions about treatment would be made jointly. I had been given time to talk through my history, worries, the immediate plan for re-staging the CLL and possible treatments.
Seven months on, although we’ve only had one face-to-face and 3 phone appointments he really ‘gets’ me, that’s quite a challenge! I’ve had CLL re-staging involving CT and many blood tests, thankfully the only abnormality on CT is a slightly enlarged spleen, no lymphadenopathy, which considering my WBC & Lymphocyte counts are both just under 200 is incredible. I’ve done amazingly well to have come 17 years, still at stage A and without treatment.
Since December 2020 I have had 3 monthly blood tests and phone call follow-ups. Given my WBC and Lymphocyte levels, my consultant feels that it’s the right time to consider treatment in the next couple of years. We’ve decided on Obinutuzumab & Venetoclax.
During my phone appointment in July, I asked if we could plan to start treatment next spring and he agreed. Doing it then means that I’ll have the worst effects of it during the better weather when I’m generally feeling a bit better and have more energy, also it will be safer for friends to be here to support me. Of course, if I rapidly worsen in the meantime treatment will start sooner. I feel so blessed to have such a great consultant and that I have been able to decide when to start treatment, it helps me to maintain some control of my life, having lost so much, due to the M.E., in the past 39 years.
I hope reading my story will encourage those who are newly diagnosed and those who have been on W&W for a few years. Of course, everyone progresses at different rates and how soon you need treatment depends to some degree at what stage you are diagnosed. Treatment options for all leukaemias and blood cancers are developing fast, many giving very good results which is promising for people being diagnosed now & in the future. I would like to acknowledge and thank all the doctors and scientists involved in this important work and patients who take part in clinical trials of the new drugs.
If you have CLL, do join us on Leukaemia Care’s CLL group on Facebook, we’re a friendly, supportive and diverse group of people. You can also follow the next chapters of my story as I share it on there.