Cancer & M.E.: My Story
By Gill Allan email@example.com
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 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 approx. 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 feeling so tired 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 work load 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 under active thyroid and indeed I was correct. It had taken me approx. 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 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 under going chemotherapy and radiotherapy. I had shingles for the 3rd 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 and 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 tumor at one point! It took almost 2½ years of eye clinic visits for them to ascertain I am at risk of low tension glaucoma. However the consultant when I finally got to see him has no time for people with M.E. and made no secret of it. Not a nice and 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 Behavioral 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 CBT 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. 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 and amazingly all of my previous notes and medical history remain in London so we have had to build up the picture once more and 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 70’s & 80’s. 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 not now 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. Sept 1998 I commenced 2 years of Astrology at night school and in Sept 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 once a week gentle swimming and the first two sessions were akin to climbing Mount Everest but again I feel 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 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 and 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 2001/2002. They discovered not only did I have numerous gallstones (as a result of the chemotherapy and hormone replacement therapy) plus a benign small lesion on my left kidney. The result was I had to have my gallbladder removed 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 which appears to be 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 and 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 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 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 chronic fatigue syndrome 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 upper back and shoulders. The upshot after medical examination was possible nerve damage at the lymph node biopsy site in 1984 on the left side. I reluctantly accepted that diagnosis but was aware of progressive weakness 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 mobility 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 with my previous history and treatment. A comment from one medic was an eye opener - politely asked why my shoulder muscles (supraspinatus) were atrophied to be told “You are not using them enough“ I remember coming home and saying to my spouse clearly this is due to the radiotherapy.
Another hurtful comment from a rheumatology physiotherapist “ you are pot bellied like my sister inlaw” 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 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 pencil like neck so noticeable that other’s 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. Hodgkins 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 info in the last approx 6 years comes from 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. 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, neurologist clearly did not know what was causing my muscle loss plus head drop. More tests ordered, MRI neck, neurophysiology testing again and blood tests. In the meantime I receive a referral to see a neurosurgeon, no idea why but I guess the neurologist has passed me over for a second opinion. Ist MRI inconclusive 2nd MRI ordered this time with contrast. By now I am investigation fatigued then follow up appointment to see neurologist Jan 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. Infact it appears I am unique in my area. No one I have consulted from orthotists to radiographers to the medics have 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 physio’s 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 say “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 CFS/ME 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.