Cancer & M.E.: My Story
Life Changing Events
My life changing events started in 1984 when, aged 24, I was diagnosed with Hodgkin’s disease (Lymphoma).
I started to feel unwell in mid-1983 after choking very badly on a chocolate! Initially, I had flu-like symptoms and was experiencing occasional blackouts. By late 1983 I had the most horrendous cough and was coughing blood. Nobody took me seriously at the time. My body weight was dropping fast. After numerous hospital clinic visits, blood tests, chest X-rays and TB testing, I was told to go away, “There is nothing seriously wrong with you, you know too much and stop worrying.” I had qualified as a registered nurse in 1981 and married in 1982.
I remember feeling very unwell indeed but was not able to convince the medical establishment at that point. I was, however, not prepared to give up so I kept knocking on doors. By Christmas 1983 lumps were appearing in my neck and chest pain was becoming unbearable, along with the intractable cough. In early 1984 I presented myself yet again at the GP’s surgery. He sent me immediately to the hospital (I think he knew I had a serious problem) - my original clinic follow-up appointment was some 4 months away. Finally, I was taken seriously only when the medics could actually palpate abnormal lymph nodes. After my first ever surgery and a lymph node biopsy, the surgeon told me it did not look malignant. How wrong he turned out to be. I was given the chance to attend the leading cancer specialist hospital in this country, though it meant a 300-mile round trip each visit. After extensive investigation I was informed I had early disease and I had a good chance (70%) of complete remission. I had 6 months (12 cycles) of chemotherapy starting in April and 4 weeks’ radiotherapy, completing treatment 2 days before Christmas 1984. I spent a week in hospital with mumps in July after contracting the disease at work - it was the only childhood disease I had missed. I spent a week in hospital for observation but nothing could be done; it was just watch and wait. I continued working 2 days per week throughout my chemotherapy - I am a stubborn soul! I developed Herpes Zoster (shingles) in September as the chemotherapy finally finished, which put me back in hospital for a week, I distinctly remember my GP telling me that my white cell count at that point was zero and I should be dead!! I remember laughing and pinching myself and declaring myself very much alive. Another week was spent in hospital and I had the new anti-viral drug Acyclovir intravenously; the medical staff had to look at the instructions first - I was the first patient they had treated.
This episode put my radiotherapy back by several weeks and I was used as a teaching aid for post graduate students at the Oncology Unit in Surrey.
I had 6 weeks off after completing all treatment and begged to go back to work through sheer boredom. The GP was not happy but backed down after he knew this lady was not going to take no for an answer. I continued working part time as the experience had made me view life through a rather different coloured pair of spectacles. It probably took me 2 years to get back on my feet emotionally and physically.
I took a change in my career path in 1988 and came out of working in hospitals and into General Practice. I remember feeling ill just 2 weeks into this new job and experiencing another rash; this time it turned out to be Herpes simplex on the torso, so I had to have sick leave again.
I loved the new job but I started to feel tired, irritable and had odd symptoms, particularly hot sweats. I recognised immediately I was experiencing menopausal symptoms. I had been warned my ovaries were likely to fail in approximately 5 years post chemotherapy. It actually happened in 4. Again the medical establishment laughed at me and told me not to be ridiculous. But I knew my own body and after complex negotiations with my GP and a hurried discussion with a gynaecologist by my GP, in mid-1988 I started hormone replacement therapy. I was 28 years of age and the realisation now dawned I would never have children. For information and help please read The Menopause & ME by Sarah Woolnough.
More Life Changes
Then my life changed again when my husband moved with his work and so I had to start all over.
A new city, a new house, and I distinctly remember never having felt so tired as the week we moved house. But never one to let the grass grow under my feet, I quickly picked up where I left off with another job in General Practice. It was a disaster and I left after 5 months. Their expectations were unrealistic and they were pushing me to work more and more hours, which I had made clear from the outset I did not want. I was out of work for several months, but never one to give up, I soon found another challenge working at a travel clinic and went onto a very steep learning curve. It was very draining mentally and physically.
I also took up golf, having professional lessons as I never do things by halves. I loved it but looking back I was pushing myself more and more. I was starting to experience peculiar symptoms as early as 1992/93, with strange numbness and muscle pain.
My clinic job evaporated after 3½ years and my employer decided to pull out and I was allocated a truly challenging post in a deprived area. Never one to duck out of a challenge I launched myself into this post with gusto. The job was effectively full-time work in part-time hours. There was little support. I was left on my own with an incredible workload and asking for help, but none was forthcoming; I was experiencing verbal aggression on a regular basis. Now my health really started to deteriorate. I contracted a strange virus in early 1994 after having a Hepatitis B booster vaccination for my work.
I was aware I was putting on weight for no good reason, I was continually lethargic, cold, felt very low and my hair was starting to fall out. I started to experience dry skin and eczema for the first time in my life. I again recognised I had another medical problem and hypothyroidism. I was tested at my request but, alas, the result was not abnormal. Again the medics would not take me seriously and I continued to deteriorate, with the most appalling neurological symptoms, numbness, pins and needles, poor vision and vertigo.
I had my second dose of shingles at Christmas 1994. I looked and felt awful; I was sent to the neurologists and tested for multiple sclerosis. Eventually I insisted they test me again for an underactive thyroid, and indeed I was correct. It had taken me approximately 18 months to convince them and to obtain that diagnosis, and by then I believe the damage was done. Untreated hypothyroidism depresses the immune system, hence the second dose of shingles. They said after I commenced treatment for the thyroid disease that I would feel much better in 6 months. I never did, my neurological symptoms intensified, fatigue increased, sleeping was becoming a real problem. My memory was appalling and physically I felt so awful and even worse than when I had the cancer and was undergoing chemotherapy and radiotherapy. I had shingles for the third time in September 1997. My condition deteriorated so much that I was advised to see my cancer specialists early, as against my usual 2 yearly check-up; I had already been sent back to the neurologists and they declared me neurologically normal. The cancer specialists could find no evidence of return of my cancer so effectively left me in the hands of the neurologists.
I also had to see the ophthalmologists after a routine eye test revealed problems with my right optic disc. My optician even considered a brain tumour at one point! It took almost 2½ years of eye clinic visits for them to ascertain that I am at risk of low tension glaucoma. However, the consultant, when I finally got to see him, had no time for people with M.E. and made no secret of it. It was a particularly disappointing experience, as I had worked in ophthalmology for some 7 years when I first qualified.
I also experienced recently a particularly unpleasant ENT consultant (in front of an audience of medical students) who thought it very amusing that a middle-aged woman needed to use a walking stick for stability. I was referred for 2 episodes of a swollen parotid gland, which he deemed was inflammation after initially stating it was likely to be due to my cancer treatment. I told him straight that I was unlikely to visit him again.
Cognitive Behavioural Therapy
No advice, no help and no direction. My GP and oncologist were horrified but were unable to offer me any further advice or assistance at that time. My haematologist offered Cognitive Behavioural Therapy some 6 months later, much against my GP’s wishes. I took up the offer as I was curious more than anything. This was in 1999 and at that point as a condition of CBT, Prozac was routinely offered. I refused as I had read recent Dutch research that this was inappropriate and downright unhelpful. We compromised and I agreed to take another drug. The liaison psychiatrist was not very happy with me but admitted I was totally sane! Well thank goodness for that! I duly completed the CBT over 6 weeks and the outcome: the therapist said I knew more about CFS/M.E. than he did and they could do nothing more to help me.
My Career Effectively Ends
I was now on long-term sick leave and my employer did not contact me for over 20 weeks. My nursing post in the meantime had been ‘absorbed’ so I was essentially jobless, but they fulfilled their obligation of statutory sick pay. A year elapsed; I was contacted by human resources and they visited me at home. I was offered another post 3 evenings a week at probably the most deprived inner city health centre, which I obviously had to decline. I duly received a letter terminating my contract of employment.
I battled on vowing to learn as much about M.E. as possible myself. I guessed knowledge was power so I deemed myself to be in control of my own destiny. I needed to educate people as much as possible. Then without warning, in early 2000 my cancer care fell through again. I could not believe it. I was effectively abandoned for the second time. On the same day I received more devastating news- my mother was diagnosed with kidney cancer. My condition nosedived again and Mum had major surgery and recovered well, but it was short lived. In early 2001 her disease returned and she died on the last day of May 2001, aged 68. Cancer is a problem in my family tree: mum’s sister died aged 54 in 1990 from oesophageal carcinoma and my maternal grandmother died aged 50 from liver cancer. My mother’s first cousin was diagnosed with kidney cancer in late 2004.
My GP assisted me to find yet another cancer consultant and even she could not believe what had happened and was not aware my cancer specialist had left. My new cancer specialist proved to be a delightful man who is kind, sensitive and caring. We started all over again; amazingly all of my previous notes and medical history remain in London, so we have had to build up the picture once more - not an easy task for him or me. It was decided I would be monitored annually and the consensus of opinion seemed to point to my M.E. being due to my cancer treatment, though my new consultant actively encouraged me to research information via the internet, pointing me to all the right resources.
Recent Scandinavian research (Norway) indicates 30% of Hodgkin’s disease survivors go on to develop Chronic Fatigue Syndrome. It seemed I was amongst the unlucky 30%. I had also been informed in recent years that I had been unlucky having developed most side effects of treatment i.e. ovarian and thyroid failure. The radiotherapy, particularly, was deemed to be very damaging, and in fact this particular type of radiotherapy has been greatly modified and is rarely utilised now. It seemed we were the pioneers of that particular type of treatment back in the 70s & 80s. In no way was I bitter though, as I knew full well that without the treatment I would not be still alive. This was the best available at the time, done at a highly respected world cancer treatment centre.
I have now not worked for 8 years, and I remember giving myself 3 years to get back on my feet. How naive was that? I have managed to muddle through 2 sessions of night school even though at times I have felt truly dreadful. In September 1998 I commenced 2 years of Astrology at night school and in September 2000 I attempted 2 years of Reflexology. I could not possibly attempt any examinations, practical or theoretical, but at least I got out into the wide world one evening a week, which I believe was good for me socially and psychologically. I had to be taken to class and collected and many sessions passed in a blur, but I was determined not to give up.
This year, 2006, I started gentle swimming once a week, and the first two sessions were akin to climbing Mount Everest, but again I felt a sense of achievement. Psychologically this has been good for me. I attempted voluntary work in 2003 but, alas, it was too much for me. I am now receiving higher rate mobility allowance and low rate care allowance, after successfully claiming for the first time in 2005. I walk with a stick when I am out, as my balance is poor and my legs unreliable. I still drive short distances on better days and I am resolutely determined to maintain my independence.
It seems from my experience at least that M.E. comes after cancer.
I am certainly not aware of any research suggesting cancer can be a result of M.E. I myself have to be monitored closely for further malignancy, primarily as a result of treatment, though this is lessening over time. My main risk now is breast cancer as a result of the chest radiation. I have annual mammograms and count myself lucky to live in an area which has a well-respected Breast Institute. I am seeing my cancer specialist every 6 months, after having abdominal problems in 2001/02. They discovered that not only did I have numerous gallstones (as a result of the chemotherapy and hormone replacement therapy), but also a benign small lesion on my left kidney. The result was that I had to have my gallbladder removed in early 2002, and the general anaesthetic resulted in the M.E. deteriorating markedly. It also seems that in 1984 I was wrongly staged for my lymphoma. A lesion was discovered in my spleen; it appears this is scar tissue from the lymphoma and treatment. It seems I did extremely well as my deemed early disease back in 1984 was actually a stage further on and reasonably advanced.
I vow to keep educating anyone who will listen about M.E. There is still a great deal of prejudice out there but things are slowly improving. I am a member of my local M.E. self-help group and get involved with my local Primary Care Trust, when well enough, to raise awareness of this devastating condition.
I hope this account gives people hope that you can survive cancer, and just maybe that experience has enabled me to accept and find an inner peace with my own experience of M.E. a little sooner than average. Once I learned to adapt to my limitations and stopped being so hard on myself, my inner peace became more attainable. Sure there are days when I become very frustrated, but I have realised that the world tends to judge you for what you are rather than who you are. I deem that to be their problem and I rise above it.
One of the saddest aspects of M.E. is that I have experienced a complete withdrawal of some so-called friends. Also, my previous colleagues in the nursing profession have completely distanced themselves. Not one person keeps in touch. I know I am not alone in this experience, but I think it is terribly sad that a so called ‘caring profession’ seems to care the least. On a more positive note, through this condition I have been privileged to meet some truly inspirational like-minded souls battling daily with the same issues. Lazy people in my view do not experience this unfortunate, debilitating condition, despite the media sometimes trying to suggest otherwise.
My personal mantra is “never give up, accept your limitations but always strive to do your best”.
Cancer & M.E.: My Story
~ Update ~
Where to begin – well, entirely through my own efforts (research and banging on medics’ doors), I have been diagnosed with Radiation Fibrosis Syndrome, a very rare problem apparently often misdiagnosed as M.E. or Fibromyalgia.
Almost 7 years ago I flagged significant muscle loss of neck and upper thorax with my GP and haematologist. This came to light after a spa break when a very observant partially sighted (no less) massage therapist immediately pointed out significant muscle loss in my upper back and shoulders. The upshot after medical examination was possible nerve damage on the left side at the lymph node biopsy site from 1984. I reluctantly accepted that diagnosis, but was aware of progressive weakness in my upper body, pain and stiffness. Silent migraine was as bad as ever and the fatigue a constant problem. My gait, dexterity and balance have all steadily been slowly deteriorating. I have had to relinquish the vacuum cleaner and bed making, have not been able to get out of the bath or use a hair drier for years. Driving is becoming more and more difficult and my mobility is deteriorating due to gait and pain issues.
Multiple referrals to the neurologists, twice for migraine assessment, and a rheumatologist for morning stiffness and knee problems ensued. I pointed out my muscle loss to no avail. No one took it seriously nor associated it with my previous history and treatment. A comment from one medic was an eye opener – when I politely asked why my shoulder muscles (supraspinatus) were atrophied, I was told, “You are not using them enough”. I remember coming home and saying to my spouse that clearly this was due to the radiotherapy.
Another hurtful comment from a rheumatology physiotherapist, “You are pot-bellied, like my sister-in-law.” Thanks a lot! Why are people so personal and unprofessional? I know now the problem is my posture due to muscle loss.
I plodded on through 2010/11/12 getting stiffer but remaining upbeat and enjoying remedial yoga in a very small way, albeit in constant pain and with progressive stiffness, but determined to keep going. I never give up!
I was becoming aware of problems keeping my head up- neck issues - pain/obvious thinning i.e. a pencil-like neck so noticeable that others have been making comments.
In a mad flash of inspiration, I internet searched “mantle radiotherapy plus head drop” - right in one hit, here was the answer. Eureka! Radiation fibrosis.
I have stumbled across the reason for my problems for all these years. Hodgkin’s lymphoma survivors treated with extended mantle radiotherapy prior to 1990 exemplify this syndrome. The radiation dosages plus extended field radiation can go on to cause real problems. It is still rare; probably 1% of cancer patients succumb.
I spent days absorbing as much information as possible - all the information in approximately the last 6 years comes from the USA, particularly from an eminent cancer rehab specialist based in New York.
We are years behind on late effects, so I printed off some PUBMED info from the USA and presented to my GP. I took a deep breath and politely flagged my findings. Initially she was a little dismissive and stated it was due to the fatigue. I stood my ground - she listened, thankfully.
Back to a neurologist I had seen before; the neurologist clearly did not know what was causing my muscle loss plus head drop. More tests were ordered: MRI neck, neurophysiology testing again, and blood tests. In the meantime, I received a referral to see a neurosurgeon; I have no idea why but I guess the neurologist has passed me over for a second opinion. The first MRI was inconclusive; a second MRI was ordered, this time with contrast. By now I am investigation fatigued; then I get a follow-up appointment to see the neurologist in January 2014!
I have been told I have exceeded expectations – apparently, when I was treated 30 years ago they would have not expected me to live this long!
I was correct, the neurologist had not seen this before. In fact, it appears that I am unique in my area. No one I have consulted, from orthotists to radiographers to the medics, has seen this before.
I am educating all who will listen, my dentist is particularly resistant but I am working on him. I have dental issues too - not surprising, as the radiation included the submandibular salivary glands (lower jaw).
I have been asked if I wanted to have physiotherapy – yes, as physical therapy and rehab is the only way to go with all this. Problem - I am confident the physios will not have seen this either, so I am trying to source advice direct from the USA.
What really disconcerts me is relatives and people I have known for years saying, “surely the doctors should be doing all this” - in an ideal world yes, but I believe you have to be your own advocate. Never accept anything at face value and if your instinct tells you something is not right, stick your head above the parapet and persevere. Do not let anyone fob you off.
It is your life after all - don’t become a victim. I don’t accept I have to live with it - it lives with me on my terms. A little arrogant maybe, but I console myself with the knowledge I have done my best.
I still have chronic fatigue “in spades”, very much a part of this progressive neurological syndrome so I still feel part of the M.E. family.
When I ever have a rare very bad day I remember Carpe Diem - “Seize the day”.
For information and help on cancer risks, causes and treatment please visit Macmillan Cancer Support.