MY YEAR WITH BURKITTS LYMPHOMA 2017
by Merv Buckley
Ravenshoe
Queensland 4888
Australia
About a year ago I was diagnosed with a cancer, known as Burkitts Lymphoma. At 72 or any other age, this is the last thing you wanted to hear, the brain takes off wanting to know what this thing Burkitts is, what is going to happen to you, and a million other thoughts, but having good doctors and professionals on hand to guide you, puts paid to a lot of the worries.
Lets start from the beginning, early December 2016, I felt a small lump under the right side of my chin, a week later it was about the size of a 20 cent coin, I went to the doctor, who referred me to the Atherton Hospital where I had a scan, I was then scheduled to have a needle scrape biopsy at the pathology dept in Cairns this was carried out on the 21 December 2016, however the results of the biopsy were unclear so surgery for the removal of the lump was requested, and the surgeon who I had been seeing in regards to having a couple of hernias repaired was informed of the requirement to have the lump removed for further investigation.
I entered hospital on the 13 January for the procedures, and the offending lump was removed, then sent to Brisbane for examination.
Two weeks later the doctor had the result of the biopsy, and I was informed that I had a cancer, known as Burkitts Lymphoma, and that there was an immediate need to start chemo treatment, as this form of Lymphoma cancer was very aggressive and rare.
The doctor referred me to CHOC (Cairns Haematology & Oncology Clinic) where I meet Dr Munas who was to be the Haematologist that would be looking after my case, both Lois and I were introduced to the staff who made us very welcome and put us at ease, they also contacted the local branch of the Leukemia Foundation who where made aware of my circumstances and treatment, they had organised accommodation for me at the CWA units, (Country Woman’s Association) a block and a half away which would be home for one week every three weeks for the treatment period, they sat down with both Lois and myself and gave us pamphlets of information concerning all aspects of the disease, and how their organisation were able to help us, I still carry the plastic envelope which holds prescriptions, appointments etc, a reminder of a journey no one really needs.
“First chemo treatment 13 February 2017, last, 7 July 2017. PET Scan & Blood Tests showed Remission, with further check up visits over the next 5 years.”
Next step was a PET scan at Cairns Base, they inject a radiated glucose into the blood stream which highlights diseased lymph glands, the scan highlighted 3 other areas of concern, still in Cairns Base I was moved to a surgical section where a PIC line was inserted on the inside of the upper right arm, (was supposed to go in the left arm) this is a subcutaneous indwelling central catheter, which is a form of intravenous access inserted central catheter.
Everything was moving so fast that there was never a dull moment, or time to ponder, just staying positive.
Chemotherapy
Treatments differ depending on the cancer, my treatment was for a period of about 18 weeks, broken up as follows, 6 session of 3 weeks, week 1 is spent at the CHOC unit having treatment, then the next 2 weeks at home. In the first and second weeks the chemo is killing all the cancer cell and other good cells, in the third week the good cells are building up again, ready for the next session of chemo. Care has to be taken while blood cells/immune system is low, as infections are easily caught in this period.
On the Monday of one of my first treatments, I recall after they had hooked me up I started to have a reaction to one of the medications, I was laying in the chair kicking and twitching and could not speak, it felt like this was the end of me, I could see the technician and the doctor standing in front of me, then the technician went away and returned with a syringe which was inserted into the PIC line and within seconds they had me stabilised, and back to near normal but totally worn out, needless to say I slept for the rest of the session.
We often joked about that day, having a good laugh as they reckoned I could have won a breakdance competition.
Every one at the unit, including patients, becomes one big family, and we have returned several times to visit them.
The first week at home is not very nice as your immune system has been attacked by the treatment over the previous week, you are supplied with medication to take home with you in the form of a plunger needle to help build up the immune system, by building up the cells in the bone marrow, it is administered within 24hours of last treatment, and some hours after first injection, made me feel like my bones were going to burst, the pain was just indescribable, most of the time over the next few days is spent sleeping and drinking plenty of water.
The third week I was able to move about with care and do things. I managed to mow lawns, split wood, whipper snip and got the veggie garden started.
Each Tuesday meant a trip to Atherton for a blood test, then Friday back to Atherton Hospital for another blood test and the dressing on the PIC line changed, the 4th week you are back to the CHOC unit for the next week of treatment
The weeks spent in CHOC also meant that you carried around with you a pump pack which released 250 ml of medication over 96 hours through the PIC line, you had to figure out how to shower and dress with it, it became your “buddy”. This was unhooked on the fifth day.
The CWA units were well appointed and the owner very helpful towards her guests, who were mostly hospital patients, I walked to and from the unit each day with my big blue umbrella, snacks, lunch, water and my “buddy”, but it got harder as each day went by, but only had to be picked up one afternoon.
On the same level as CHOC was a small food outlet and some times the smell of food wafting through the building made me feel quite ill, I would bring my own sandwiches and water most days, but had a good supply of cracker biscuits, ice cream was no problem but always looked forward to the home cooked meals Lois had prepared for me. You are told that the treatments would alter your tastes and smell, and it wasn’t too long after the final treatment that smell and tastes started to return.
By the end of the third session (9 weeks) I was somewhat used to the daily routine, being part way through the treatment a second PET scan was called for, the treating doctor discussed the results, which were very promising. but at the start of the 4th session they increased treatment by 40% and started me on steroid tablets, well the steroids biggest killer was they kept you awake, I would go without sleep for couple of nights, in some instances I took sleeping tablets, but on the good side the steroids made the chemo reactions much more bearable. The second week, of the fourth treatment at home was pretty rough. On the Friday around 4am, my temperature was 38.7 I was too lethargic to worry but Lois called the ambulance and I found myself on my way to Atherton Hospital where I stayed till Monday in isolation until the temperature returned to normal. Infections were easy to catch while your immune system was down so precautions had to be taken, like Lois wouldn’t let me go into the Woolworth’s arcade, having coffee with the folks on Wednesday was out of the question until my immune system returned to a more acceptable level.
I was looking forward to my last week of treatment but a spanner was thrown into the works with accommodation, we had forgotten to confirm that coming weeks stay, no problems, just rang the Australian Red Cross, who have a brand new accommodation building opposite the Cairns base, told them what had happened and they gladly opened their doors and had a very comfy room with TV, twin beds, fridge and toilet. Was given a guided tour of the facilities by very caring staff who looked after me for the next week.
Maintaining a positive attitude and some form of exercise, talking with others, not necessarily about your condition, I found very helpful.
I recall at some stage we ran out of fire wood and some very good friends turned up one afternoon with a trailer load which was dropped in the drive way, so the next day I shifted the full load by wheel barrow nearer to the lounge and under cover then split some of the larger blocks, so we had dry wood for the rest of our winter nights.
Lois would drop me off at CHOC and pick me up at the end of the week and we would travel home to Ravenshoe, some trips home were a bit hairy but if I managed to sleep it was good for all concerned. I was particularly anxious as a passenger, much more so than I would normally would be. Lois was my saviour right through this period, without her I just don’t know how I could have managed. The other thing that helped me through was a medication I had been on for some years, that I was taking for anxiety called, EFEXOR, this medication didn’t allow me to dwell on anything for too long.
These are some of the changes my body went through from the Chemo and the medications, but each patients reactions are different.
In the most basic explanation… Chemo stops anything that grows / re-generates from doing so… it kills off good cells as well as bad cells.
• Hair Loss with some Patients: ( Everywhere your hair noticeably grows in your Chemo time frame )
• Lack of Energy: (Chemo fatigue) ( Partly from the drugs )
• Stomach Upset ( Acid reflux and Heartburn were a daily battle, medication helped )
• Skin stopped regenerating. ( Hyper-pigmentation and paleness, bruises cuts do not heal )
• My nails were slow growing and had several white half moons on each nail.
• Taste and smell comes and goes.
• Hearing decreases and could hear constant ringing
• Muscles tone soft. ( Partly from not eating as much and not being physical )
• My saliva became very thick
. Eye sight became blurry after certain drugs
. Neuropathy, which is a condition where the nerve ends are damaged by the CHEMO causing pins and needle in the fingers and toes and without medication can be very severe, can last a year or more.
Recovery:
Lets start after the last week of chemo…
Weeks 1 and 2 are like the weeks between treatments.
After the third week I went for the third PET scan, a week later, discussed the results with the doctor. The scan was all clear, no infected lymph glands so I was now in remission and would be checked for the next 5 years.
Over the next 5 to 6 weeks my taste and smell started returning my hearing normalised somewhat, however the ringing in the ears remain.
Stopped taking blood thinners week 10 and the bruising and cuts were healing.
Doing daily exercises, gardening, mowing lawns and other home chores.
Week 25 now, which happens to be Christmas.The hair started to grow and by week 12, it was thicker, softer and darker, so keeping it at a number 4 cut.
Week 18, had my 73 birthday, and my body felt pretty good, and hopefully heading closer to where it was prior to the Chemo, I continue to experience what they call Chemo Fatigue, tiredness, body soreness and pins and needles, “Neuropathy”, sleeping is heavy and often rest in the afternoons.
Some days are better than others, your life changes and you have to slow down as you get tired very quickly. I have found that I become confused and forgetful at times, how ever you get through these periods.
Theres always someone around that can help out, if you ask and talk about how you feel.
Prior to the diagnoses of cancer, I had 3 stents inserted in arteries near my heart, the procedure only takes a couple of hours, it is done through a main artery in the arm and home the same day, now taking medication for high blood pressure and continue to have it monitored on a daily basis. Some days it is high then others it’s so low you end up with headaches and dizziness, but the doctors have now got it under control.
Prior to starting my Chemo, I used Dr Google to lookup what and how the treatment was going to effect me and what the long term effects would be, well there are so many stories and variations that after a few minutes you become so confused that its better to stay away from that sort of thing and rely on your doctors and the professional people dealing with your case, mine were, Leukemia Foundation, Cairns Haematology and Oncology Clinic, Atherton Hospital Oncology Unit. & my Local GP.
People joked about loosing your hair, saying it would come back a different colour or curly, however this was all in good fun, just having people around making comment was good.
It was frustrating and slow going at times, so you have to stay motivated. On the Wednesdays I had at home I had morning tea with Lois and the Wednesday golfers at the Ravenshoe bakery, having friends around helps you stay positive, which helps with the healing immensely.
I hope this answers some of your questions and if you are about to undergo Chemo or any other form of treatment for what ever type of cancer you may have, or have just finished… don’t stress… give it time…you WILL be normal again.
When I arrived home after finishing my treatment and having the PIC line removed I stepped into a shower without tubes in my arm and took a very… long… shower, on stepping out I knew there was a new life in front of me, which I was going to enjoy, along with Lois…every new day.
If its any consolation the Chemo also took care of the splits in my finger nails, however I wouldn’t recommend the treatment just for split nails.
Thanks to the following
Doctors and staff, Alice St Medical Centre
Cairns Haematology & Oncology Clinic, Dr Munas
Dr Shearer, Technicians & staff
Leukemia Foundation Cairns
CWA Holiday Units Owners
Australian Red Cross
Atherton Hospital Oncology Unit
Sullivan Nicolaides Atherton
Marlin Coast Surgical Atherton
Wednesday Bakery Support Group
The Firewood Suppliers
& Lois Moffat, who was with me all the way
(and must say while on chemo he was a very good patient and did everything he was asked which made
caring for him much easier..Lois)
My Regards To You All
Merv