A New Hope to return to work, help needed

I am filled with New Hope for a delightful future. I am at a New Beginning. I am at a gateway to New Life. Am I manic or tripping on psychedelics? No. Have I had a religious or philosophical epiphany? No. Did I win the lottery? No. I'm going through bowel cancer complicated by chronic lymphocytic leukemia, and I have a chance for long-term survival.

I’ve endured ten gruelling hours of robot-assisted TME procedure, followed by remaining colon mobilisation and hand-sewn anastomosis, with a construction of a temporary ileostomy. I’ve survived ten days of 40C+ fever without systemic infection (the high fever stemmed just from inflammation). The pathology report showed there were still live and proliferating cancer cells in the core of the radiation and chemo-treated primary tumor. Live cancer cells were captured in the three most proximal draining lymph nodes. However, all the margins of the removed tissue, all lymph ducts and distal lymph nodes were CLEAR. It seemed that this was a curative step in my treatment. Sadly, three weeks after that operation, some scepticism from the doctors delayed their response to my excruciating, growing pain without fever. The result was that they lost the new anastomosis to massive peritoneal infection, partial necrosis of the attached colon, a 7cm and a 2cm abscesses, occlusion and perforations. They admitted me back to the hospital on an emergency basis. After three more days of waiting for a spot in the operating theatres, a horrifying open abdomen surgery was performed to cut out all the rotting gut, clean the peritoneal cavity, close the ileostomy, and convert the anastomosis to a permanent colostomy on the other side of the belly. I was a day away from systemic sepsis and not being here anymore. I lost 16Kg of body mass and am still lucky to sleep longer than 4-5 hrs at a time due to post-traumatic stress.

And then I got the news no cancer patient wants to hear after a year of radiation, chemo and two life-altering surgeries. A lesion in my lung was discovered on a CT scan in May and was only barely discussed with me and dismissed in July as a 2mm probable nothing-to-worry-about; it grew to 5mm by the October CT scan to check the results of the emergency operation. It grew. Now what? Now we wait. It's too small to biopsy though it is close to the surface in the upper left lung, on the front, with a unobstructed way to access it between ribs.

There are three scenarios of how this could play out. Two OK, one bad.

If the lesion remains solitary and doesn't grow, it may be possible to leave it as is because it may be benign and unrelated.

If the lesion remains solitary and grows, it may be possible to first thin needle biopsy, then remove it with precision radiation (gamma knife) or ultrasound needle micro-ablation, or surgically.

Suppose the lesion grows and more lesions appear (because they are already there but undetectable with current technology). In that case, we have to return to long-term chemotherapy, and my five-year survival chances slide.

I'm terrified of this last scenario, though I've heard stories of people with stage IV (metastatic to distant organs) bowel cancer being cured and living many more years. Unfortunately, they are the exception to the statistics.

Anyway, statistics for me will always be 50/50. I will either get the spread out cancer or not. I will either make it through another eight months of chemo or not. I will survive to participate in my daughter's graduations from various schools and a wedding, or not.

However, I can’t know that with certainty. I feel that I won't do well filled with fear and anger, but I can be filled with Hope. This moment is a New Beginning of the rest of my New Life.

For those of you who don't know me, I work as a technical specialist and laboratory manager. I love my job, where I teach technologies and facilitate high throughput studies, high content, fast-paced discoveries and verifications in cancer research, single-cell genomics, cancer cell biology and immune response. There is an art to color coding, counting and sorting cells, and I’m proud to pass it on. I am especially delighted to have been part of building up The Netherlands Maxima Center for Paediatric Cancer and earned a permanent position there. I can’t wait to get back to work to continue the progress I’ve been making.

To make an effective return to work, I need a mode of transport. Maxima is located on the other side of some fields and a forest park of a former palace, so the commute is just a beautiful four-and-a-half-kilometer “bike ride in the country side”. Due to disability (removal of my pelvic floor muscles, ligaments and tendons and leaving just a thin layer of skin and transplanted filler fat), I won’t be able to use a regular bicycle for a very long time, if ever. The surgery made it impossible for me to sit on a narrow, hard saddle. A tricycle with a chair is very heavy and requires an electric assist motor, but including that motor costs upward of €6500. A similar seat-style lay-down bicycle has a comparable price. Also, there is nothing pleasant about using an open vehicle like this in the rainy season in the Netherlands when the wind drives cold rain to whip horizontally, and a 10-minute bike ride leaves you drenched to underwear. I'm not in the physical shape to endure the elements during my commute.

Public transport commute is not an option. It requires two crowded bus rides and takes twice the time to get to work one way than bicycling.

I need your help. As mundane as it sounds, my family are running out of savings. Mayor house renovation projects have to be put indefinitely on hold. Insurance has reached its limits for the ever-so-necessary extras like physiotherapy, mobility aids and returning-to-work help.

On top of this, due to prolonged absence, my salary and accrued benefits were reduced by 30% while it was just enough to make ends meet between my wife’s and my salary.

Already a year ago, I asked you to contribute to an electric micro-car GoFundMe and amazingly saved €980 of your contributions. But the least expensive version of Citroen AMI/ OPEL e-rocks costs €12,000. Similarly, the Carver S+ costs €15,000. I know these funds are unattainable with the rate of contributions I receive. Fortunately, I found a viable alternative in a used Citroen C-Zero (or Peugeot iOn, decal versions of Mitsubishi i-MiEV that make these electric cars and sell on to Peugeot-Citroen to re-decal for distribution in E.U.). It is a properly highway-certified and crash-tested EV capable of running at 120km/hr if necessary, four proper seats, airco and heating - none of the shortcomings of the Electric Micro-Cars and with a similar travel range of 80-120km. On a single battery charge, this EV would be perfect for local commuting, delivering my daughter to school, swimming lessons, after-school gym, horse-riding (she'll be mucking out a lot of stables to be able to afford those ;-), or just a ride out to the forest for a walk.

An Electric Vehicle subsidy from the dutch government may be possible in January 2023, even for a second-hand EV at €2000, but there is no guarantee of getting it. It's a bit like lottery. And the seller/ dealer would have to be very flexible and creative to deliver an EV to me at the end of November but create a purchase contract effective pending getting the subsidy sometime in 2023.

In my updates, you can read about my test drives of the Carver and OPEL electric micro-cars. And the Citroen C-Zero.

So it's a C-Zero or bust. For that, I still need Your HELP. Any contribution matters, and in the future, when I’m earning well again, I will try to make a similar contribution to KiKa, WCC, or KWF as a give-back. If I sell the EV because I can turn back to maybe a lay-down bike, any difference I will contribute to KiKa.

Thank You already for your consideration and potential contributions. Much LOVE, Tomasz