Honesty is such a lonely Word May 2019

We have been in two minds about writing this blog. When I commenced this blog over two years ago I promised to be completely honest about everything and I intend keeping that promise. Always been a big Billy Joel fan so couldn’t resist using the opening words to his song Honesty

As regular readers to my blog you will know that my last Oncologist meeting was in Early April 2019. My Oncologist remained under the impression that I was still cancer clear but he was concerned about my continued issues with fatigue and the sudden paralysis to hands, feet and pains to my right pelvis and right leg. So he ordered an in-depth blood screen along with ultrasounds. This has increased to include a dermatologist and other medical professionals like physiotherapist and occupational therapist.

The ultrasound… still waiting for some of the results but the ultrasound to my hands raised alarm bells. The normal aging issues showed up but the were “unexplained” shadows around my knuckles hence the occupational therapy.

The blood screening.. this covered 7 major areas outside of my normal screening- one of theses included my autoimmune system unfortunately the markers came back as zero (normal would be 15 to 30) I am awaiting what they intended to do about this. My red blood cell count is also “abnormally low” which may explain the fatigue issues.

Unlike most of my previous pages I have commenced this one prior to publishing it, so really what is below had not commenced when I started writing this article. Readers should take note that I have to be very careful about how I write some of my blogs. WordPress is quiet unique when you pay for the professional levels, it allows you to see who reads the pages and how long they stay on the pages. There is a tiny number of people reading this who are very much against us, they want me to fail in business, they would prefer to see my decline in health and so on but I don’t care about those individuals so I ignore them however I also need to be mindful that with the slightest opportunity they would sue me hence the “can’t name to shame” approach. The Psychology diplomas really pay themselves off here. So to those negative narrow minded idiots please feel free to fuck off, you will never understand empathy as you do not have the ability to understand and share the feelings of another

Anyway back to the task at hand or really the multiple tasks

Blood Test results: 

As above the blood test showed low red blood cell count and zero immune markers. Both are a big concern however they do not indicate any form of relapse or re-occurrence of Lymphoma, which is great. But they do need to investigate why the RBC count is so low and what the issue with my immune system is. The immune defect places me completely open to infections and colds etc, so to anyone who sneezes in the same room as me please do not be offended if I suddenly leave the room.  In real terms the doctors warned me to stay away from crowds and confined spaces where colds tend to be airborne. I have become accustomed to the whole immune issue warnings and we have been on the guard end of this for years. Still feel like a RoadRunner – Looney Tunes – you can’t beat it.

One of the big concerns is the fatigue and we are looking at a work/life snapshot including low red blood cell count. Low blood count “If the number of RBCs is lower than normal, it may be caused by: anemia. … erythropoietin deficiency, which is the primary cause of anemia in patients with chronic kidney disease. hemolysis, or RBC destruction caused by transfusions and blood vessel injury” as defined by healthline.com this points towards the blood transfusions following my Stem Cell Transplant and yes it can take years to become an issue. It also points towards some of the aggressive chemotherapy drugs used that basically killed anything in their path.So on this end I am waiting for the team to decide how to tackle this medically, they also want me to reduce my working week to 24 hours but I have also taken matters into my own hands and commenced taking a multi vitamin aimed at fatigue and low immune system. I never really responded well to vitamin tablets but let’s see how this goes. They are slow release so I should feel more alert throughout the day. I’ve not reduced my working hours yet but doctors are starting to push this.

Occupational Therapist

Occupational Therapy helps people to do the everyday things that they want to do and need to do when faced with illness, injury, disability or challenging life events. Occupational therapy is a client centred health profession concerned with promoting health and well being through occupation. Okay little bit to explain on this. The extreme levels of chemotherapy and radiotherapy caused Peripheral Neuropathy this is not unusual and has lingering effects for months and years (peripheral neuropathy affects the nerves, which can cause numb, tingling or painful hands or feet) The numbness caused is like a paralyses that last for a few minutes but is quiet painful. The suck it up and get on with it attitude has to be applied to this one. However if it gets worse or spreads then it needs to be looked at closer –  in my case it has spread to my right leg and pelvis.

But this could be the Sciatica Nerve – sciatica refers to back pain caused by a problem with the sciatic nerve. This is a large nerve that runs from the lower back down the back of each leg. When something injures or puts pressure on the sciatic nerve, it can cause pain in the lower back that spreads to the hip, buttocks, and leg. If it is then it may not even be related to the treatment I have had, this is also an aging process and I am most definitely not getting any younger.

Update: This is unlikely to be the sciatic nerve

Physiotherapist

A physiotherapist a person qualified to treat disease, injury, or deformity by physical methods such as massage, heat treatment, and exercise. I attended a physio following a car crash in 2010 and found them great. However this time it is really to follow up on the Occupational Therapy and to see if they can jointly find a solution. Maybe the use of the word “joint” in this case is a bad idea from me.

Update: They believe the issues relateD to the lumbar region close to where I had the biopsy 2 years ago

Dermatologist 

A dermatologist is a medical practitioner qualified to diagnose and treat skin disorders. I have not had one on my team in the past so this is a whole new area for me. Basically one of the signs of Lymphoma is a consistent skin rash that can come and go in the same location. Mainly neck and lower legs. I never real had this issue until January and I ignored it. The rash is on my left lower leg and ankle. So enter the dermatologist..  I have been quiet repetitive about been open with your medical team, in a lot of cases meeting with oncologist are stressful as you never know what news the Oncologist presents & you could easily forget to point something out. After the Stem Cell Transplant I started asking Anita to come to the oncologist meeting so that basically if I miss something Anita might remember it and likewise if I miss something that the oncologist says then the chances are that Anita will pick up on it.

But back to the dermatologist or as my Oncologist calls her “the skin doctor” I have now taken the page to real time. The dermatologist done a full body exam and some good news on this. The rash is caused by dry skin, I never had this issue with my legs before but it’s basically dermatitis and I have a steroid cream to take care of this. So it’s not an issue.

Updates: 15th May 2019

Occupational Therapist- I’m been referred back to the Oncologist because the paralyses problem is unexplainable. Tingling in toes and fingers is as expected a direct result of chemotherapy & Radiotherapy so no surprises on that. But the occupational therapist has sent her report to the rheumatologist as well so I may see the rheumatologist soon. I really need answers on this.

Physiotherapist: extensive examinations done by this person. She check all movements and preformed a lot of physical exams. She could pinpoint exactly where the pains were and worked he way back to what she considered to be the source. This is the lumbar

In tetrapod anatomy, lumbar is an adjective that means of or pertaining to the abdominal segment of the torso, between the diaphragm and the sacrum. The lumbar region is sometimes referred to as the lower spine, or as an area of the back in its proximity. (ps the image is not me, I look a lot sexier than that)

This is the area that I had a biopsy on just before I relapsed in 2017. So they are been extra cautious. There appears to be no Lymphoma activity but I will be having an MRI on my lower back. In 2017 the team were very concerned about the speed that the cancer was spreading and even with the lung and liver been hit they were more concerned about the cancer spreading to the spine in particular the lumbar area.

So even with the initial exam suggesting sciatica they eliminated this and consider it a lumbar issue– they are doing physio to try and stop the pain but it’s back to the oncologist to make a call after the MRI.

I reread the page and meant to update about fatigue. The multi plus are classed as a “slow release” they must be very slow as I feel no difference. Going to give them a little longer but the war with fatigue is still raging

Waiting Time

I know a lot of this seems to be dragged out and all Cancer victims will tell you that we properly spend more time waiting for test and results than actually getting chemotherapy or radiotherapy. Once diagnosed & staged The oncology teams work fast to get treatment started but once the treatment is completed they need to wait and see if the treatment works. A great example of this is Radiotherapy– after high levels of radiotherapy the patient will be radioactive for months, in my case it took over 3 months after completing to scan me. That’s a long wait. I commenced relapse in Nov 2016 but was only declared fully relapsed in late March 2017, that’s over 4 months – some biopsies take 8 to 12 weeks for results to come back.

I have become accustomed to this and to be honest I don’t mind waiting. Waiting implies that your going to live long enough to get the results. My super weird humor again…. but the waiting can create stress our minds are geared towards “worst case” and it takes a lot of strength to get your mindset right. I went with the “plan for the worst and hope for the best” attitude and it really worked for me.

Si vis pacem, para bellum.

is a Latin adage translated as

“If you want peace, prepare for war“. 

If really do love these quotes

Anyway it’s waiting time, I don’t expect much to happen in the next few weeks health wise. I suspect that I will get a call next week about a date for MRI, so I will do a fresh page when that happens