Hello to all you wonderful people. This is my first blog, yep I have been a member of this fab website for over a year now, I was diagnosed finally with AML January 09, at the local hospital A+E as I was dying, my GP failed to do anything about my illness for 3 visits, and eventually my partner..god love him grabbed me out of bed and dragged my sorry bones to the hospital for help. I was admitted straight away with ridiculous blood results, given a bone marrow test and then sent by ambulance to the nearest hospital that does chemo for inpatients, I was diagnosed with AML 05, latest diagnosis they had ever seen or treated. I was sent to theatre to have a central line, Groshong fitted into my chest, and then started on chemo for the first round, cytarabine and daunorubicin, yuk! Remarkably I was actually feeling better than I had for weeks after 5 days of chemo, the nasty swelling that had hidden my teeth was subsiding and I was able to swallow and speech was not so difficult. I did not have too many nasty side effects, I suppose I was so ill when chemo started that anything was going to either finish me off or make me better, the consultant MD team said we are going to kill or cure you! You do develop a weird sense of humour in these times. Anyway I was not too bad round one, it did take a long time as I was flat neutropenic for nearly four weeks following the chemo and they kept me in a small side room, I got sepsis really bad and was poorly, but at no time did I feel this is the end during round 1. I was eventually allowed home for only a week. I was completely bald after nine days, and having always had long lush hair it was a shock to see myself in the mirror, but hey ho what a small price to pay! My partner came and collected me for the hour long journey home, it was hell, every bump, braking, and eventually home, stairs...... OMG I had trouble getting up those! My legs just would not work, I was too weak, so we did one at a time, and he was right behind me, encouraging me, helping me, and protecting me from falling backwards. We made it, I climbed gingerly into my bed and fell asleep for ten hours. Fortunately I have an ensuite which is only a few feet from my bed with walk in large shower, room for an essential chair and loo and sink, so with his help I could do the bathroom stuff. Oh I was so pathetic and looked like someone else. I used to say "hello old lady" to the mirror and that person was becoming someone else. I was duly taken back to the local cancer day centre for bloods and to have my lines flushed each day. When my body had just about got enough neutrophils and cells in my blood I was summoned back to hospital, another hours drive, hell, and to go back to the ward, well that was strange, a kind of relief, my partner H who was delighted to have me home was also relieved, it was a huge responsibility to be looking after me, he was exhausted too. Luckily he was not at home alone as we have a lovely characterfull dog, Mr Plod, who carries such a presence that he was great company and solace for H.
Well round 2, loomed the very next day, I was settled into the side room, and then the busy period of bloods, Drs and nurses etc, then sleep, trepidation and more sleep. The next morning round 2, I was started on my chemo, I did not feel very well this time, I was in pain and very very tired, my face started to burn and big red patches appeared right across my face and neck. The nurses said it can sometimes happen, so we proceeded. After a few days I was getting really ill, my blood pressure dropped to extremely low, my pulse was 30 beats per minute and I was groggy. I felt really bad, burning all through my body and in terrible pain. I was moved onto the ward of 4 beds, as there was another patient who was worse than me and needed to be in the side room. I was too ill to argue but with hind sight it was due to the hospital not having enough resources so patients were treated accordingly. I was still really ill, and the staff were getting concerned. My partner was told it was very serious but they could watch me better on the ward, as there were more pairs of eyes passing all the time. Made some sense I guess. Anyway who cares when you are that poorly you can't argue. I was then even worse, it was Friday night I was sitting rocking on the bed in agony and in such a pickle, the weekend staff were hard pressed to cope with all the demands of the patients, so I was put on heart monitors and the cardiac team called from upstairs. I had a 5 hour echo-cardiogram and the consultant was mind blown. He said I should be in a coma or hibernating with the readings he was getting, not talking to him. By the Monday I was so poorly I asked to speak to the Dr, I was not able to cope with any more chemo. She, bless her was really gentle and kind, she said they could "tweek" the drugs and give me some other medicine to help with nasty side effects. I had toxic shock and chemical burns from not being able to process the chemo drugs, this was partly due to poor liver function and partly they thought due to a reaction to daunorubicin which was effecting my heart muscle. They changed my chemo and went with only cytarabine. I finished the round with the help of some serious medication to ease the side effects and burning. I looked dreadful, my partner was told three times it was touch and go, he was having to communicate with my three grown up adoring children who were worried about him too. I survived - obviously - that round 2 hell, but developed very serious sepsis after, I had three concurrent infections, they were the three most dangerous they said, I was on Vancamycin, tazercin and gentomycin - not spelt correct I am sure - for 3 weeks, I sweated off 20 kilos in those three weeks so I was on a constant fluid drip into my other line. Thank heavens for Fortisips, and gaviscon! anyway I went right through the mill and back again. But I survived against all the odds. I was then given bad news about a fellow patient who had not made it, that hits hard to all of us other patients, but you somehow get more determined to fight on. Eventually I was allowed home, yes you guessed the hour long journey of hell, this time even more fragile every brake, change of direction, stop start it was such an ordeal. I was neutropenic with 0.4 and slowly rising so we had to be careful, my dog, well he soon learned the word neutropenic and would keep his distance with a loving expression on his face! My poor partner H, the responsibility was huge, he would allow my children to visit, but grandchildren because the risk of infection was high were excluded. My neighbour is a fully qualified Psycho-therapist, she does some voluntary work at the local hospice, she wanted to come and see me, so reluctantly he said 10 minutes, I remember her face when she came up to my bedroom to see me, shock! I know I looked like an embalmed relic from a pyramid, unrecognisable as the same person she had seen 4 months ago. She asked me quesions, she wanted to know all about it, I was very tired but did have a good chat with her, H then decided it was too tiring and she must go. He was very good at protecting me. I slept most of the time I was home, but he sat with me, watching me, feeding me and caring for me. I hated the look on peoples faces when they saw me, but we all got over that aspect soon enough. Life is more precious than what you look like, it is what you feel in your soul that counts. My children love me, and I them, my partner H loves me and I him, so we all got on with what we had. Sometimes people make comments that could be perceived as a little bit of a faux pas? (forgive my spelling I used to be really good at English but my brain has not fully recovered yet, you know if you have had this illness what I mean) but you develop as I said earlier a weird sense of humour! The all curing bandana! is one thing we all laughed about. Courtesy of that television program "Family guy"
Well, I continued with chemo but I had the high dose cytarabine, for all the remaining cycles, I had all the worst possible sepsis every round, and it was touch and go more often than not, but I was determined and resolute that I WAS GOING TO DEFY SCIENCE AND STATISTICS, I WAS GOING TO BEAT IT ALL. I kept telling all my family and friends they were not going to be rid of me yet! I did have one hell of a battle on my hands I knew that, I was often laying in bed with tears burning down my face, not sobbing just the tears would not stop. I secretly used to have a strong word with myself, get a grip lady you are not a quitter! Which I am not, I have a strong character and a determined spirit. Vital if you want to have a positive outcome against all the odds! Please don't give up, ever, keep on thinking of the future, what you will do, what you want to do and how the people you love will miss you, DON'T GIVE UP!
I won't bore you with the rest of my treatment for AML, I finished treatment at the hospital July 09, and then attended the local cancer day care centre for all subsequent care, seeing my Haematologist/oncologist every few days, then every fortnight. I was told it would take a very long time to recover as I had a right battering physically. So when November approached I was still neutropenic and my liver felt like it was going to explode all the time, and I was still in bed most of the time, I was completely knackered in every sense. I was told "you will be" ! Silly me, December appointment came, still the same, January came still the same, I was becoming depressed as I thought this is it, absolutely no quality of life, and no progress, still neutropenic, ( I did not have bone marrow or stem cell support following high dose chemo), so come February H was getting desperate as he was not getting any official support and as my full time carer he was looking frazzled, he had lost 2 stone and looked completely exhausted. He insisted he was OK and that my care was paramount in his scheme of things. So when February appointment came, we told the consultant yet again my situation and symptoms, body swelling, pain in liver, kidneys, complete and utter fatigue, unable to digest food properly, fortisips were the main stay of my diet, constant upset tummy and visiting the loo every hour 24/7, nightmare. I was fed up and beginning to give up, and I did not feel that it had been worth it for the quality of life I had. I was beginning to question "what was the point of all that suffering?" I was again dismissed by the Dr, but H was not having it, this time he was forthright and forceful, not rude,but he had to be really persistant, Dr conceded that I had very high ferritin levels and had poor liver function all the way through treatment, she could not understand why I was so fatigued!!!???? but again I had high dose chemo and would take some time to recover, I was still neutropenic I also had low platelets, I could never quite get beyond 1.2 neuts and 80 platelets, and I was always prone to high temperatures, with no apparent bacterial infection, in Feb and March I was running a temp of 39.9C and the out of hours Dr admitted me to hosp twice, he tried a further third time but I flatly refused, and the hospital did not know what to do with me and I was in the Medical Assessment ward for hours risking picking up a deadly infection, so I stayed at home. I am allergic to paracetamol so the way I reduce my temp is cold wet towels and an electric fan, it takes time but it does work! I eventually recovered, whether it was coincidence or not I started taking a whole range of herbal remedies on the information from my daughter in law and her sister who is a qualified practitioner dietician. I cannot say whether they would be suitable for anyone else, but my god they work for me. I will tell you what they are later.
Following H getting on his hind legs with the Dr, I got a phone call the next morning from her assistant, ....I need to start treatment immediately for Iron overload, as a result of so many transfusions I have a ferritin level of 2283, it should be below 10. Viensection needs to be started, but because I have so little neuts and bone marrow I would start 2 weekly and they would monitor me carefully. So I started with that on the following Monday, they take a pint of blood every fortnight, this started at the end of Feb 10, and now my ferritin level is at 715 and falling steadily. I was originally told it would take 12months but ut would appear that I will probably not have to have the procedure that long. It is a bit of a bind having to go every 2 weeks, and spend 1-2hrs on a bed in the unit, but it has made a difference and without it I was at risk of all sorts of nasty further damage. I use special anaesthetic cream to dull the pain of the needle and process because since chemo my veins have all become hard and mostly disappeared! It really works, apply one hour before onto the area and cover with a dressing, then when I get to have the needle inserted I feel virtually nothing, certainly not painful. I recommend it.
The other news I got following the call about my iron levels was much more devastating, and has had some far reaching and very annoying totally avoidable consequences. I was in the unit with a temperature, not feeling too good, February/March the nurse got the consultant to come and see me. They decided I was not well enough on this occasion to have blood letting, the consultant who was head of the department (not my usual consultant) asked if I had been "genotyped"? I did not know what he meant, and was immediately sitting with ear pricked for further information, asking what it was and what it meant, he immediately backed off, and became vague and tried to passify me. I was suspicious, that is my nature especially after all that I have had to deal with, I was told to go home and rest and keep a close eye on my temperature etc. I kept going over and over the details in my head and with H. He could not make head or tail of it either. Two days later I got a phone call from my H/O consultant, she said "ah hello, I have some results of tests done when you kept pestering me at clinic, you've got hepatitis C virus, have you had any blood transfusions before 1991 by the way"? I said "yeeessss" "you were told that when I was admitted to hospital in the first place" "WHY"? there was a little huffing and puffing and a giggle, then "well that's where you've got it then, when was that"? I said 1979 and 1980 when I had my son and daughter, complications of child birth and elective caesarian. "What is hepatitis C, why would I get it from blood transfusions? did I get it from chemo support as I had a massive reaction to a transfusion of platelets which made me very ill? She said there was such a small risk of that, it was certainly from 1979/1980, and that was it, she said goodbye!
Well I was numb, worried and disbelieving, frantic sick and immediately calling for my lap top to get on the life saver internet. Tapped into Google Hepatitis C, and up popped loads and loads of pages of sites the first being The Hepatitis C Trust, the British official site for the condition. (Fantastic site I might add) I read every page over and over again, at the end of it I was really really annoyed, devastated and desperate for help, Idid not know what help I needed I felt I was in need of answers because I could not find anyone on the site who had also been treated for AML and who was neutropenic which meant there was no immune system to fight for me. I was in a frantic panic. I phoned to speak to my consultant's clinical nurse specialist, she said I was being booked for an appointment to see and gastroenterologist, as soon as possible. I should phone his secretary for more information. I did, bearing in mind her office is at the entrance to the cancer day centre, she had no information about me needing an appointment, so the fight started to get an appointment as soon as possible. What a farce that proved to be. Lies and more lies and fobbing off. I discovered in my many phone calls and questioning of various people including the private hospital next door the main hospital that the gastro Dr did not have any appointments on the NHS for several weeks, by then I would have been dead from stress alone, so I discovered that he did have a clinic at the private hospital in 2 days time and he had a slot available. So I got onto my GP for a fax of referral to the hospital, he did it immediately and I was booked in for a private appt. I arrived and waited then went it to see him with my wonderful supportive partner H. I explained what had happened and why I was there, he was blown away, and very sympathetic, but admitted he had never treated or seen anyone post chemo with AML, and that he would have to discuss with the head of Haematology/Oncology who was by this time my consultant ( I changed Dr as a result of how I had been treated by the other Dr and her assistant) They discussed at length and on many occasions about my treatment potential. I then had my NHS appointment, by this time several weeks later I was fully armed with all the information available, and was concerned that during my chemo support that I had been prone to nose bleeds and all the usual low platelet problems also was neutropenic still therefore when H had been sitting nursing me, and holding the tissues under my bleeding nose and being my carer that he had been exposed to my blood. We were told that he should contact his GP and arrange a test, but that it was "highly unlikely that he would have caught it" also that until I was strong enough and had some immune system if that ever comes back, that I would not be able to be treated, the risks associated with GCSF and re-triggering my AML meant I was not going to have them, and that meant I would have to "wait and see" what happens. AND that I would have to have a liver biopsy to assess the current damage already done to my liver. (I should point out that on the first encounter with details from the internet I was aware of a herbal treatment for Hep C called Milk Thistle, which I purchased from Holland and Barretts and started taking immediately - I take it religiously every day!) I had been taking it for about 5 weeks when I went for my liver biopsy, which was the most painful procedure I have ever had inflicted on my body, and that includes a compound fracture of my lower leg!!!!! It was horrible and took me a month to recover from the pain and I stil to this day have a nasty scarr where the needle went in and the dressing went septic afterwards. The results were quite an eye opener. My liver tests went from very poor with high billirubin levels to within normal range. My liver was showing results of damage but not anywhere near what we had expected. Bearing in mind that I was supposed to have had this condition for 30 years!!!! I have had a follow up appointment to discuss and we have decided together that it is best to "wait and see at present" wait for neutrophils and further recovery from chemo, and see if the virus causes me great upsets or quick deterioration. I have regular ALT tests and it looks like the Milk Thistle and the other preparations are working better than ever imagined. I must stress that this is only my experience and you must talk to your medical care team and get as much information as you can yourself. Make informed decisions always, it's your life and your body, that is your choice and make it yourself relevant to your circustances.
The other bad news we have had to deal with is that H has contracted HCV from me, he started to be in pain in the liver, vomiting, lost weight quickly and now has chronic fatigue, he is seeing the specialist in his own right on Monday to see about starting the 52 weeks of interferon and ribavirin which will make him sicker still, before he gets better hopefully. We are both disgusted that I was given this nasty illness by the NHS and we were not told until we got strong with the Dr, to find out, and that we were not warned of the risks of H being in contact with my blood. And that I was in hospital being treated for haematological cancer AML and no-one tested my blood to see if there was any other problem with my health or any other contributing factor to me getting AML. It simply was not on the agenda to check even though I was having trouble with liver function during chemo, still no-one thought to look into anything else. Astonishing absolutely astonishing! It explains why I felt so rubbish and continue to feel so fatigued, although apparently according to my consultant it's nothing to worry about and really it's not serious.. Perhaps he should tell all the global governments that they should not be worrying then, because it quite clearly is a serious concern and a serious condition. Currently the British government have a cross party working party discussing that very subject and the way forward to tackle to very serious problem and to bring forward new criteria and amounts of compensation for victims of "the worst scandal to his the NHS in it's history..." I quote. Canada have just decided that their victims should receive around £750,000 per person, so we can conclude that it is not such a mild and nothing to worry about problem after all. I discovered that there are many famous people who have this condition, they are listed on the Hep C trust website, one the founder of Body Shop, Anita Roddick got Hep C from child birth in the 70's and as we all know she passed away as a result of it, so very sad are all the casualties, and so avoidable.
It would appear that Drs are constrained in opinion by rules and paradigms within the NHS and their profession. So it is up to us the patients to change the way they operate, after all without us they are out of a job! So once again knowledge is power not only to heal yourself but to educate everyone involved, hard though it is when you are actually very ill and suffering, but the positivity of empowering others actually has a very powerful Karma for you too. This is what has motivated me to tell a little about my journey through the mire of serious illness and complications.
I am still alive, still recovering and actually growing neutrophils, over a year on from chemo with no stem cell or bone marrow transplant at the age of 54 rising 55. I listen to my body very attentively and do nothing that I don't feel is right for me. There is hope and never give up on that inner soul and spirit that you have got, it might not feel like it some or all of the time but trust me you have got it and you can use it. The choice is yours, think of the future, your future, and live it every day. Below is a list of what I take in herbal remedies, remember to check it out for yourself first and discuss and find out all the information you can. They are listed on Hep C Trust website www.hepctrust.org.uk if you can't find them there look at holland and barretts website or just google! I personally use H&B because of continuity and safety in dose and quality but I am not advertising for them, it'sjust my personal choice once again.
L-lysine, milk thistle, dandelion, turmeric, aloe vera, sea kelp
PLUS A FANTASTIC DIET OF FRESH VEGETABLES AND FRUIT AND NO PROCESSED FOOD, JUST GOOD PLAIN OLD FASHIONED QUALITY PRODUCE THAT IS SEASONAL AND IF POSSIBLE HOME PRODUCED OR LOCAL FARM SHOP GROWN. FOLLOW THE RAINBOW DIET TOO THAT IS BRILLIANT, NOT EXPENSIVE JUST GOOD FOR YOU. IF YOU CUT OUT ALL THAT PROCESSED RUBBISH YOU WILL NOTICE IT'S MORE ECONOMICAL AND YOU WILL FEEL BETTER. IT MIGHT TAKE SOME GETTING USED TO IF YOU HAVE ALWAYS HAD A TENDENCY TO EAT READY MEALS ETC BUT PLEASE PERSERVERE YOUR BODY WILL THANK YOU!
Finally good luck to all or anyone who reads this blog, if I can offer anything at all contact me through this website, my fight goes on and I am going to win. All the very best and lots of love to you all. PMA you know positive mental attitude!!!
