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My name is Keith Johnson,i live in the United Kingdom and i am 47 years old and this is my story of being told that i have cancer and the problems which the treatments caused,i was 44 years old when diagnosed on March 1st 2000. As the year 2000 approached i was having problems at work and at home, i had already taken two weeks off as i thought i was suffering with flu as i was getting terrible drenching night sweats,which required the changing of the sheets every time it happened. At work i was having very bad cramps in my feet, back of my calves and my hands which would distort my fingers and shoot up my arms.
I was working 12 hour days and 12 hour nights and was really struggling to get through the shifts when eventually i went to my GP complaining of these cramps,she said i don't know what could be causing them and asked me if i was experiencing any other problems so i mentioned the night sweats and this must have triggered alarm bells with her as she had worked at our local hospital with the Oncology doctors there,anyway she sent me for the usual blood tests. Out of the blue she rang around 5.30pm on the Friday 18th February but i was out at work until 6pm and rang her back when i got in,she informed me i was very anaemic and said she had made me an appointment with a oncologist at the hospital for 10am on Monday morning if i could make it, i said no problem as i was on nights.
Monday's appointment came and i saw a Dr Collins,who asked me a lot of questions about my medical background and the problems i was experiencing,he also examined me by feeling at my neck under my arm pits and around my groin but i hadn't noticed anything wrong,he also took my temperature and blood pressure,weight and height and ordered another blood test saying if the test is as bad or worse he would admit me to the hospital for more detailed tests,i was beginning to get worried by now and asked him about work as i was due on nights that night,he replied he was happy to give me 2 weeks on sick and with that sent me away. Around 7pm that same day he rang saying my anaemia had gotten worse and he wanted to admit me the following morning.
I rang work up to tell them i was unable to work that night as i was put off work for 2 weeks so they could find someone to do my job. I went to the hospital the next day not knowing what to expect,they admitted me,did the formalities then a Dr came to see me to examine me again and ask more questions and said the first thing we have to do is give me a blood transfusion so another blood test was done to determine a cross match and i was hooked up to a drip and given 4 units of blood over night.
The next day i was told i was told i'd be having an endoscopy which is a camera placed down your throat into your stomach to determine whether any blood was escaping from anywhere.I was told everything seemed fine,they took a biopsy which was alright and apart from a hiatus hernia which wasn't causing me any trouble everything was as it should be. Day three came and after the usual blood tests another Dr came and said he will be performing a bone marrow aspiration on me.
I had to lay on one side while he numbed my lower back with a very long needle so he could go in and take a sample of my bone marrow and a small piece of bone,this didn't take too long and wasn't painful. I was allowed home on the Friday and told to come back to the outpatients clinic on March 1st. At this point i didn't know what they were looking for but when i went for this next appointment there were posters on the walls of this clinic with Chemotherapy written on them so for the first time i had a good idea what was wrong with me.I was led into a room by a female Dr who said i have got Lymphoma and was i aware of what this meant which i had never heard of it,she explained it is cancer of the lymphatic system and had i got any questions,i was so dumb struck at being told this i could'nt think straight at all,anyway my bone marrow confirmed my lymphoma and it had been sent 12 miles away to Sheffield for a histology and i was being referred to Weston Park Hospital in Sheffield which is a specialist hospital for cancer,so i had to wait for an appointment from there.
I had to have another 4 units of blood transfused on March 15th over night in our local hospital.Then again on April 10th another 4 units was given. I received a letter from Weston Park on March 16th with an appointment for March 24th at 9.50am. I had to wait for appointment for a ct scan which was done about 2 weeks later,this revealed Hodgkins Lymphoma was in my Bone Marrow,my spleen and lymph nodes in my Abdomen,i was given a staging of 4B and was told there was a 20% to 30% chance of cure. I started my treatment on 19th April which was ChIVPP/PABIOE,which was a trial against ABVD,i was told there would be 6 or 8 courses,made up of 3/4 courses of ChIVPP alternating with 3/4 courses of PABIOE,part A is given on the first week of each course,part B is given on the second week dependant on the blood counts.
I was fine apart from my hair was coming out in clumps so i cut it short but the hair was finding its way everywhere so off it all came.At week 8 my treatment was cancelled for a week and i was put on Antibiotics for a infection that i had picked up.On 28th May i was admitted to Weston Park again for 3 units of blood over night.Week 13 was also cancelled and i had to have another blood transfusion,3 more units at Weston Park on 22nd July over night.I carried on with my treatment the following Wednesday and was given antibiotics yet again. Tuesday the 8th of August i started with my first high temperature which was at 38 degrees as the day went into the evening i felt really lousy so my wife called Weston Park who arranged for a ambulance to take me the 12 miles to Sheffield,i got there about 11pm where they took bloods and started me on intravenous antibiotics which I had for several days and was discharged on the 13th.
I had my next chemo on the following wednesday,it was getting very difficult to handle now,i was tired and even though my brother in law always drove me the 12 miles for my treatments it was very difficult,but it had to be done and i had to remain positive. On the 23rd of August proved to be my last time for my chemo apart from the tablets i had to take at home,which i was on approx 21 per day,all to be taken together first thing in the morning.
On the 30th of August i found a lump on my inner arm on the biceps area as the day wore on i got a rip roaring temperature along with shivering fits so again we rang the hospital as i was due for my chemo that day which was cancelled and i was admitted again,when i got there which was just before midnight i was in a right state they wanted a urine sample which i found difficult to do as i had got diarrhoea but got there in the end,then i was started on iv antibiotics.I kept complaining of this lump on my arm but i wasn't getting through to them,they were putting these drugs into the same arm as this lump and it began to hurt and swell up like a balloon.My Oncologist came to see me the next day and things started to happen,the iv antibiotics were put through the other arm and strong pain killers were given to me but the pain was terrible i could not sleep for it.
Tests were done on my arm a ultra sound was done as they thought it may be a blood clot but it wasn't,i was in for 2 weeks and it was put down to a very serious allergic reaction to the chemo drug Vincristine,my blood counts were very low again so they gave me 5 units of blood and i was allowed home,it was that bad that they decided to cancel the rest of my chemo and opted to do a ct scan to see if the chemo i'd already had had done the trick fortunately for me it had,my bone marrow was retested and that was deemed clear.So i was officially in remission but they never used the word remission,i was sent home and given dates for follow ups. The follow ups were for 3 months intervals for 2 years,then 6 months for a 3 year,then they are once a year in September until the year 2012.
Everything was fine until June 6th 2001 when i could not walk without limping and i had a pain in my left groin,i went to see my GP who said it should not be anything to worry about and if it does not go away come back and see me.Anyway it did not go away and we had a holiday booked to Greece so i went on that and i went to see my GP again when i came back,who said i will ring Weston Park and speak with Professor Hancock who rang me up at home and asked me what the matter was so i told him and he arranged an appointment to see him in clinic.I had all the usual tests associated with the Hodgkins,X-rays,CT scan,Bone Marrow Aspiration,MRI scan,these all came back alright,then a Isotope Bone Scan was ordered and Prof Hancock said if this came back alright we would leave it at that for a while to see if it cleared on its own.The scan was on 3rd December 2001 at the Weston Park Hospital where a injection of a small dose of radioactive dye was given 2 - 4 hours before the scan as this would show the bones up more clearly, I was due at the clinic for one of my follow ups on the friday so Prof Hancock chased the result of the bone scan and it revealed what he called a hot spot around my left hip,i asked what he meant by a hot spot and he said this means inflamation,and another MRI scan was ordered for 29th January 2002 at the Hallamshie Hospital.It was about a week to 10 days later in early February 2002 that i got my diagnosis of Avascular Necrosis or Osteonecrosis,same meaning to both of my hips with the left being the worse.This was caused by the steroids Prednisolone used along with the chemotherapy for my Hodgkins.Avascular Necrosis means that there is no or a limited supply of blood getting to my hips therefore the femoral head is dying,my left hip was stage 2 going on three,and my right hip was stage one.
I was to be referred to the Northern General Hospital also in Sheffield where i met a consultant called Mr Andrew J Hamer a Orthopaedic surgeon to decide on what to do next. I got my first appointment to see Mr Hamer on 12th April 2002 where i had a x-ray done and he recommended i had bilateral Core Decompression Surgery which is a operation to drill the necrotic bone out of my femoral head to try and get the blood supply back again.This was done on 27th May 2002,the pre admission clinic was on 20th May and i was admitted on Sunday 26th May and discharged on the 30th,i was given crutches until i did not need then anymore and told i could not drive for 12 weeks,the stitches came out after 2 weeks by the district nurse,i had a four inch scar down my right thigh and a one inch scar down my left thigh.
I was given a follow up appointment for 6th September 2002 where there was no improvement and told to come back in 3 months time on 6th December,this time i did not see Mr Hamer i saw his Registrar but there was still no improvement and was given another appointment for 3 months on 7th March 2003 where i saw Mr Hamer and he said my left hip was getting worse and he recommended a total hip replacement which i agreed,the right hip was looking good and the coring seemed to have worked,anyway i was placed on the waiting list to have the total hip replacement surgery.
The pre admission clinic was booked for 12th May 2003 and i was told a date would be sent to me via the post, and the date for the admission was 17th August 2003,with the total hip surgery being done first thing the following morning,the surgery went well,i was got up 2 days after on my crutches, I needed 2 more units of blood as I was anaemic and was discharged on the Friday. I have been given a follow up appointment for 10th October 2003 when hopefully Mr Hamer will give me the go ahead to drive again. The steroids also caused me to have a diagnosis of Osteoporosis to my spine,i was asked to attend the cancer research clinic at the hospital where i had my treatment for Hodgkins and this was on 3rd July 2002 where i had a blood test and i had to provide a urine sample and then i had a Dexa Scan which confirmed my Osteoporosis in my spine.Osteoprosis is low bone density, the norm is +1 to -1,Osteopenia is -1 to -2.5 and Osteoporosis is -2.5 and below,mine was -3.4 which was quite low,i was to be put on a 2 year trial which involved the infusion of a drug called Zoledronate which takes around 15 minutes to infuse plus i have to take a daily supplement of Calcichew tablets which contains calcium and vitamin d.
I started this trial on 22nd November 2002 and on the 31st October 2003 i will probably have to have another infusion at the start of year 2,i had a repeat dexa scan 6 months after the first infusion where there was no change to the -3.4 so if the next scan is still low i shall need another infusion which will be likely. This at the time of writing is where i am at,todays date is 25th September 2003,i have many more follow ups to attend but as for my Avascular Necrosis hips after more than 2 years of pain and 2 operations hopefully this will be an end to it,but this Avascular Necrosis can affect other joints such as knees,shoulders and ankles but hopefully not, my Osteoporosis is still ongoing,but my main one the Hodgkins Lymphoma is no where to be seen so i have been in remission for just over 3 years,where my personal aim is the 5 year mark and beyond.