Dom’s Cancer is Back

Well, gang-  after complete remission for over 7 years, his MM has returned.

His blood work and bone marrow biopsy showed absolutely nothing alarming.  His hip had really been bothering him, so Dr. Safah ordered an MRI.

We went to see her on Thursday, fully expecting yet another clean bill of health.

NOPE.

The MRI showed a 9.3-centimeter lesion on his left hip.  (Measures 3.66 inches in diameter).

So, she calmly announced that he was to stay off of his tractor, watch how he sits down, etc.  She’s afraid that he would suffer a broken hip.

Then went on to say that she was ordering 10 radiation treatments, 2 months of Chemo and ANOTHER Stem Cell Transplant.

Needless to say, my eyes filled with tears.  She smiled and sweetly said that she wasn’t the least bit concerned.  He did so well last time and remained clean for so many years….. that he would breeze right through this.  She said that this time it would be much easier on his body.

We met with a Slidell Radiologist doctor and our Slidell Oncologist on Monday and Tuesday.  The Radiology department did a CT Scan and tattooed his hip.

Our Slidell Oncologist said that he suspects that this is a Plasmacytoma, as his bone marrow and blood wasn’t the least bit alarming to them.

Radiation begins tomorrow.

This time around his Chemo will consist of Revlimid, Velcade, and Dexamethasone.

My tears have ceased and we’re both very confident with our new team.  Dr. S. from Tulane told both of these Slidell doctors that he would zip right through this process.

After Radiation and Chemo, they’ll gather his Stem Cells and the transplant will be done in New Orleans at Tulane.

This is all happening very quickly.  We walked around in a daze all weekend but hit the ground running on Monday.

Understanding Multiple Myeloma

NAPSI)—You may be surprised to learn that multiple myeloma is the second most common cancer of the blood, after leukemia. It starts in plasma cells, a type of white blood cell. In time, myeloma cells collect in the bone marrow and may damage the solid part of the bone and eventually harm other tissues and organs, such as the skeleton and the kidneys.

In fact, there are approximately 114,000 new cases diagnosed every year. If you or a loved one is among the 230,000 people living with multiple myeloma worldwide there are a few facts you should know.

What Can Be Done

For many people with the disease, an autologous stem cell transplant may be an answer for eligible patients. This involves collecting the patient’s own blood-forming stem cells and storing them. He or she is then treated with high doses of chemotherapy or a combination of chemotherapy and radiation. This kills cancer cells but also eliminates the remaining blood-producing stem cells in the bone marrow. Afterward, the collected stem cells are transplanted back into the patient, so the bone marrow can produce new blood cells.

To help people learn more about the disease and its treatments, the Multiple Myeloma Journey Partners Program was created.

This peer-to-peer education program for patients, caregivers and health care providers leverages storytelling as a tool to improve the patient experience. Journey Partners are multiple myeloma patients who have experienced similar emotions, faced the same challenges and asked the same questions about living with the disease. A Multiple Myeloma Journey Partner will come to any community in which 10 or more people would like to attend the free one-hour educational seminar. The main benefit is that multiple myeloma patients know they’re not alone, and the program provides educational resources and services that help patients and families navigate their journey to achieve the best possible outcomes.

As John Killip, a Multiple Myeloma Journey Partner, puts it, “It was conversations with my support group, family and health care providers that influenced my decision to have a stem cell transplant in 2008, when I was first diagnosed with multiple myeloma, at the age of 65. Mentoring other multiple myeloma patients is one of the highlights of my life. I became a Journey Partner to share my story and help others with the disease make sense of the diagnosis and overcome the fear of the unknown.”

Learn More

For more information or to request a program, you can visit www.mmjourneypartners.com. Anyone interested in becoming a Multiple Myeloma Journey Partner can contact the program coordinator listed on the website. The program is sponsored by Sanofi Genzyme, the specialty care global business unit of Sanofi focused on rare diseases, multiple sclerosis, immunology, and oncology.

http://www.caswellmessenger.com/online_features/health_and_wellness/article_388d11ff-d51b-5f54-a633-460f11e3122b.html

Stem Cell Transplant for Multiple Myeloma

Stem Cell Transplant for Multiple Myeloma
In a stem cell transplant, the patient gets high-dose chemotherapy (sometimes with radiation to the whole body) to kill the cells in the bone marrow (including the myeloma cells). Then the patient receives new, healthy blood-forming stem cells. When stem cell transplants were first developed, the new stem cells came from bone marrow, and so this was known as a bone marrow transplant. Now, stem cells are more often gathered from the blood (a peripheral blood stem cell transplant).

Stem cell transplant is commonly used to treat multiple myeloma. Before the transplant, drug treatment is used to reduce the number of myeloma cells in the patient’s body. (See Chemotherapy and Other Drugs for Multiple Myeloma.)

Stem cell transplants (SCT) are autologous and allogeneic.

Autologous transplants

For an autologous stem cell transplant, the patient’s own stem cells are removed from his or her bone marrow or peripheral blood before the transplant. The cells are stored until they are needed for the transplant. Then, the person with myeloma gets treatment such as high-dose chemotherapy, sometimes with radiation, to kill the cancer cells. When this is complete, the stored stem cells are infused back into the patient’s blood.

This type of transplant is a standard treatment for patients with multiple myeloma. Still, while an autologous transplant can make the myeloma go away for a time (even years), it doesn’t cure the cancer, and eventually the myeloma returns.

Some doctors recommend that patients with multiple myeloma have 2 autologous transplants, 6 to 12 months apart. This approach is called tandem transplant. Studies show that this may help some patients more than a single transplant. The drawback is that it causes more side effects and so is riskier.

Allogeneic transplants

In an allogeneic stem cell transplant, the patient gets blood-forming stem cells from another person – the donor. The best treatment results occur when the donor’s cells are closely matched to the patient’s cell type and the donor is closely related to the patient, such as a brother or sister. Allogeneic transplants are much riskier than autologous transplants, but they may be better at fighting the cancer. That’s because transplanted (donor) cells may actually help destroy myeloma cells. This is called a graft vs. tumor effect. Still, in studies of multiple myeloma patients, those who got allogeneic transplants often did worse in the short term than those who got autologous transplants. At this time, allogeneic transplants are not considered a standard treatment for myeloma, but may be done as a part of a clinical trial.

Side effects

The early side effects from a stem cell transplant (SCT) are similar to those from chemotherapy and radiation, only more severe. One of the most serious side effects is low blood counts, which can lead to risks of serious infections and bleeding.

The most serious side effect from allogeneic transplants is graft-versus-host disease (or GVHD). This occurs when the new immune cells (from the donor) see the patient’s tissues as foreign and so attack them. GVHD can affect any part of the body and can be life threatening.

For more information about stem cell transplants, including details about the processes and side effects, see Stem Cell Transplant for Cancer.

LINKS HERE

Living with multiple myeloma

In 2008, Traver Hutchins was the president of his own health care education company. Strong and athletic, he did not hesitate when a financial backer asked him to have a check-up as part of the insurance process. It was, after all, a standard and routine request.

What happened next was anything but routine.

“I found out I have a disease I had never heard of before,” Hutchins says, “and that it was ‘smoldering,’ meaning there were no symptoms.”1

The disease, multiple myeloma, is a rare, fatal cancer of the blood plasma cells.1 It affects 30,000 people each year.1

Hutchins was profoundly affected by the diagnosis. “My father died young of a blood cancer, non-Hodgkin lymphoma, when I was a teenager,” he says. Remembering the effect of that tragedy on the rest of his family, he re-evaluated many of his own life choices.

Despite being asymptomatic, Hutchins scaled back his activity at work and handed over the company to a new president—a decision he now considers premature. “In retrospect, that was a big mistake,” Hutchins says. “I should have soldiered on.”

Hutchins waited for four years after the initial diagnosis before he experienced his first symptom: back pain he attributed, mistakenly, to a hockey injury. After months of physical therapy, an MRI revealed that he had a compressed vertebra and bone lesions, the result of an accumulation of plasma in his spine.

Following the MRI, Hutchins underwent his first treatment: kyphoplasty to restore the vertebra and a combination of medicines. His cancer went into remission. But given the current state of myeloma treatment, relapse is inevitable.1 He bided his time.

For three years Hutchins monitored his blood levels diligently but they did not register his relapse, not even when he experienced more back pain and a return of the cancer in early 2016.

“The pain increased much quicker this time and the cancer was further along by the time we detected it,” Hutchins says. “I take full responsibility for not moving on the pain sooner, but I would have moved faster if the blood tests had indicated anything.”

After two rounds of radiation, another kyphoplasty procedure, and a laminectomy to relieve spinal pressure, Hutchins chose to undergo a more invasive treatment which involved the replacement of bone marrow with stem cells. To induce a remission in advance of the transplant, he underwent two rounds of induction therapy. The first round failed, but the second round was successful.  Hutchins received a stem cell transplant two weeks later.

“I am now in the post-stem cell replacement phase,” he says, “waiting for my batteries to power up as well as my immunities.”

“I have about a month of being hypersensitive to avoid any potential infection,” he says.

Hutchins hopes that he will be ready to go back to work in three months and resume a relatively normal schedule. But he also knows that his fight is not over and that his long-term prognosis diminishes with every relapse.2-4

He looks forward to the day when multiple myeloma is considered chronic and manageable, rather than incurable.

“The research groups and clinicians have expanded the lifetime expectancy massively from fifteen years ago, and even from when I was diagnosed,” he says. “But we really need to break through and figure out how to get to the right medicines for the right type of myeloma.”5

Link and References

Transplant Still Top Therapy in Multiple Myeloma

Newly diagnosed patients treated with drugs alone more likely to progress

SAN DIEGO — Despite the success of novel targeted agents in newly diagnosed multiple myeloma, an upfront stem cell transplant remains the best treatment choice, a researcher said here.

In a large randomized clinical trial, European investigators compared two forms of intensification therapy: high-dose melphalan (HMD) plus an autologous stem cell transplant or standard-dose bortezomib-melphalan-prednisone (VMP), according to Michele Cavo, MD, PhD, of the Bologna University School of Medicine in Italy.

After a median follow-up of nearly 32 months, the median progression-free survival (PFS) had not been reached for those getting a transplant but was 42.5 months for those getting the VMP regimen, Cavo reported at the American Society of Hematology (ASH) annual meeting.

Jump HERE for more

One big muddle

It’s been a while since I last wrote (hmmm…..a common theme to this blog!) so I thought I would try to find half an hour to write a new post.

Things have been absolutely manic here; Nick took a new job, Nick left aforementioned job and took 3 months off work to enjoy the summer, Rebecca started secondary school, Sam has had exams for his secondary school, we bought a house, we redid the house and we put the house back on the market! In addition, I have started working for myself in an attempt to revive some sort of career in the charity sector and/or HR (whilst still being available for the kids). And the result…..one very tired me, and life turning into a big muddle!

In many ways, I’m not really surprised. It’s a lot to keep on top of at the best of times, but when your memory is shot like mine has become, it becomes even harder. I used to pride myself on my organisation skills and my ability to do ten things well at the same time. And my ability to remember names and what those people told me. Now…..not a chance. I don’t really know why. It could just be getting older. I know my older family also struggle a bit with their memory. Or it could be ‘chemo brain’ that everyone talks about. My body went through a fair whack when I went through my Stem Cell transplant in 2011, and in reality, I am still on a mild chemo drug for my maintenance now.

Whichever it is, it can be remarkably frustrating though. I tend to be someone who has lots and lots of ideas.I’m sure it drives people round the bend as I always have something that could be done better! My issue isn’t coming up with the ideas though, it is actually managing to remember them through to fruition. The number of great presents I’ve thought about, and then before I know it, it is 2 days before I need it and I have no way of sorting it out! Or birthday cards that I get a month before the date and then forget to send and so I look like we don’t care! Or friends I think about regularly but don’t call because I or they will be busy, and then I forget until it is again, impractical (thank god most of my friends forgive me my lack of calls!)

I definitely need to come up with a plan. Lists are one thing, but I often forget to write it down before it is forgotten….or I end up with lists in places that I forget about….so very frustrating. When we, one day, get our new home (yup, still in rented!), I hope that I can set up a system with a great big whiteboard to use! It could well be the answer.

Anyway, let’s forget that for now (no pun intended). One great thing that has happened this month is seeing our 12 year old start secondary school. I look back to when I was diagnosed with myeloma in 2009 and remember how convinced I was, that this wouldn’t ever happen. I don’t even think the consultants wanted to put my mind at rest on that one. It is hard to put into words how it felt to see her walk away from primary school and start on her new journey….and how proud I am to see her do it all with such happiness. Sam will do the same next year and I don’t have to worry if I will see him off which is amazing. Of course I still worry a bit about the future. I’d be lying if I said there is never any concern about that but I do feel like the concept of seeing them off to University is a realistic one now. I’m not wishing their lives away, but I need things to keep focusing on and looking forward to…they help to keep me positive!

It’s also why work is so important to me. I’ve now set up (through necessity!) as a sole trader so that I can do corporate fundraising for a Birmingham based orchestra that helps the local community. I’m hoping, that if I can work well with them, it may lead to more work and help me to have a role within the house as well as being a mum and wife. Oh, and if anyone out there needs help with their social media, minute taking, internet research etc, I’m happy to take on roles like that alongside what I’m already doing!

Right, talking of work, I probably  ought to go and do some now! I have my monthly hospital trip tomorrow, and my niece’s hen weekend on Friday so as always, life is very busy!

Happy 5th Anniversary

Every year I write this post…..and I make no apologies. This is an amazing day for me to remember as it is the 5 year anniversary of when I had my Stem Cell Transplant…the point at which my myeloma was put into remission, and, thank god, has pretty much stayed there ever since.

This year, it has felt even more emotional and even more special, as this week, our oldest is leaving primary school and will be off to ‘Big School’ in September. I am so excited for her and all that it will bring. We have a raft of special events lined up for her in the run up to her leaving her primary school and it included her ‘Leavers Performance’ last week. Now Rebecca and Sam only joined the school last September due to us relocating up to the Midlands. So when she told me there was a song in it that would make the parents cry, I warned her that I wouldn’t be ‘that parent’ as she hadn’t been there long enough for me to feel emotional about it. Her friendships, whilst really good, aren’t the ones she has had for 7 years and basically it just wasn’t going to happen.

Yes, you’ve guessed it….before the song even started, I had tears rolling as I realised that we had made it….we had got her to secondary school and I was here to see it. Not only that but I will see Sam go next year. And I also strongly believe now that I will get to wave them both off to University in 7 years times.

It has been a rollercoaster of a 7 years. Some of it has been incredibly difficult for all four of us but I am so proud of how the children, Nick, and I, have coped. We have got through my diagnosis, survived my treatment programme, and dealt with the awful reality of saying goodbye to many ‘myeloma’ friends who have not had the luck of the draw that I have had. Even now, as we watch my figures, month after month, we manage to keep living our life fairly normally, and I hope most of our family and friends would agree, fairly positively.

As we go into this next year, Nick is looking at a new role with new responsibilities, we have just had an offer accepted on a run down house in our local area, and Rebecca starts her new adventure…. who knows what I’ll be writing about this time next year!

 

Picking Blueberries

Blueberries

Blueberries

Recently, my wife and I visited a U-pick blueberry farm in the upper Hood River Valley. Mourning doves crooned in the surrounding forest. A smear of clouds waltzed across the summer’s sky. We expected our son and granddaughter to join us. Acres of mature bushes, loaded with ripe fruit, beckoned. 

The farm is located on Dee Flats, near our old stomping grounds adjacent to the Mt. Hood National Forest. This plateau of volcanic rock is noted for the depth of its topsoil. Fruit orchards prosper in the fertile sediment deposited over time by winds that scour the Lost Lake Canyon.

U pick and the honor system. Weigh the berries and put your money in the box.

U pick and the honor system. Weigh the berries and put your money in the box.

We live in town now, 15 miles downriver, but for over 35 years had a small house within a mile of the berry patch. In years past, I ran the roads of this plateau to alleviate the stress of work and parenting. Later, when recovering from a stem cell transplant for my cancer, multiple myeloma, I recuperated with daily walks around the cultivated blocks of pear orchards. Often, my youngest son and his goofy dogs accompanied me on the circuit of farms.

This visit to the former neighborhood evoked memories of family history. It was here that we sank roots deep into a mountain community and made a small Oregon town our home. One son, Noah, has moved away, yet it was he who pined most for the homestead of his youth when we sold the house.

The other son, Isaac, the aforementioned youngest, chose to remain in the valley. His family resides close to Dee, along the east fork of the Hood River. Within moments of he and Savannah joining us, blue streaks from the irresitible fruit colored her cheeks. 

Me, my wife Marilyn, Savannah, and her Daddy, Isaac.

Me, my wife Marilyn, Savannah, and her Daddy, Isaac.

Our buckets filled quickly. Soon, 43 pounds tipped the scales at the pay station. So too, my heart felt the sweet weight of reminiscence on what we’ve known together: the joys, the hopes, love and pain, the investment into and profit from nurturing, the confidence instilled, the fear and missteps, the forgiveness, and, most of all, the shared trust for the journey, not the destination.

Savannah gobbled the berries like a famished bear cub. Uncertainties lay ahead for her as they do for any child. And, given my age, I can never know what solutions she will choose. Yet, I am consoled. She has excellent guides.

Before leaving, we posed for photos in the morning light. Doves continued their serenade. More pickers arrived carrying bags and buckets. Though it’s risky to predict the future, I think it likely that the winter of 2016 -2017 will be blessed with blueberries for our pancakes.

Tagged: blueberries, cancer, family, Hood River, Hood River Valley, Marilyn, multiple myeloma, nature, parenting, stem cell transplant, writing

Back to the Future

My sensei, Spanky, taking a break to reassess things.

My sensei, Spanky, taking a break to reassess things.

I enjoyed two full months of recovery from the latest attempt to control my cancer, multiple myeloma. At first, that drug worked well. The harsh side effects, however, made me question whether it was worthwhile. When its effectiveness waned, I took a break to reassess things.

I have lived eight years since diagnosis. Each year I delve deeper into the trough of wonder drugs. Initially, neurotoxins stunned the cancer and numbed my feet. Then, the blunt club of alkylating chemo, in concert with a stem cell transplant, staggered the disease. When it righted itself, I tried sophisticated novel agents. A mandatory side dish of steroids scrambled my brain while helping these therapies suppress the myeloma. The disease, nonetheless, sputtered back to life.

The long infusions allow me to catch up on my reading.

The long infusions allow me to catch up on my reading.

Now, new concepts push aside the old standards. The drug holiday for my cancer ended in May. At that time, I started receiving a monoclonal antibody. MABs target a specific feature on the surface of MM cells. In addition to killing cancer cells, the MAB alerts the immune system to these intruders. Most side effects occur at the moment of infusion. Consequently, the IV drips go slow. If respiratory reactions occur, the feed is stopped until symptoms resolve. Fortunately, I don’t react to the infusions, but each visit still takes five to six hours.

Clinical trials demonstrate that the particular MAB I receive can be effective on its own. The FDA awarded it fast track approval in October of 2015. MABs work for many, but not all. They are not the Cure. Subsequent trials that combine the MAB with a novel agent show unparalleled response rates. For some individuals, the length of progression free survival remains undetermined. Such immunotherapies portend hope.

Savannah, my granddaughter, marching confidently into the future.

Savannah, my granddaughter, marching confidently into the future.

I continue to be free of serious symptoms associated with myeloma. Most of my issues derive from the side effects of treatment. The current regimen has a modest effect on my quality of life. Yet, I must resist jumping to conclusions. This is biology; these are trials. My future relies upon matching the cancer’s resilience with patience and persistence.

The latest numbers can be found in The Drill.

Tagged: cancer, cats, chemotherapy, melphalan, monoclonal antibodies, multiple myeloma, Providence Hood River Memorial Hospital, relapse, remission, revlimid, stem cell transplant, steroids, writing

The Sweet Spot

I was tempted to entitle this blog ‘My Life Lived in Fear’, but after some reflection, I decided that some could perceive that to be melodramatic. That said, I am prone to a dash of daily sensationalism, so I couldn’t not tell you. The blog’s working title concisely and accurately summarises this current stage of my life. I am left in no doubt that if somebody were to make a mediocre biopic about my life, it would be described as a paranoid melodrama. I am constantly, metaphorically, looking over my shoulder readying myself for when the other shoe drops. Since August 2012 so many shoes have fallen out of sky, walloping me on the head during their decent that not expecting another dreaded, earth shattering wallop is impossible. Unlike the previous shoes, the next one will be the last one and most dreaded. The next one will to be steel capped. 

Wait, I am getting ahead of myself… 

March and April seem to have past me by in a post flu, get my life back on track sort of haze. March was taken up with such intense fatigue that I really did not notice the month passing. I felt things improve in April, celebrating when I realised that I had managed to spend nine consecutive hours not in my flat, and survived. Progress, I thought. 

Medically, as far as I am aware, I could not have asked for a better response to the transplant. It is difficult for me to write those words, as they are words that really ought not to be uttered.  I do not want to tempt fate. Five weeks ago, after inspecting my results and my mouth, a Medically Trained Person said that I was in a “Sweet Spot”. For those of you not in the know, this means that I have just the right about of Graft vs Host Disease and my results are good. My initial thought at his diagnosis, was panic. He’s labelled it in such positive terms that he has invited things to go wrong. 

Two days later, I pain in my left ribs suddenly appeared. A familiar pain, one that I wished I would never feel again and one that interrupted every possible human activity. I’m not ashamed to say that I panicked at this development. My active imagination was half in denial and half reconciling myself to the inevitable. Except, it was not the inevitable. It was not a broken rib caused by the return of My Myeloma; it was a suspected pulmonary embolism. Two nights in the hospital, two x-rays and a CT scan later, the Medically Trained People found that I had a chest infection. Another infection! Another week and a course of antibiotics later came with the diagnosis of pleurisy, which they say, was probably brought on my February’s bout of influenza. 

A reprieve. 

A reprieve and a lesson to me not to always think the worst. And yet, those thoughts are never really far away. It’s a daily battle. I do not want these thoughts to be so readily available to me. I do not want self pity to be my constant companion. 

I am working on it. 
In an ideal world, I would be able to enjoy the Now and not worry about a depressing future. My world is not ideal and there is another side of me that feels torn.  I do not want to be underprepared. I described it to my counsellor as a form of self preservation. Before my last relapse, I let my guard drop. I was back at work, I had planned something more than a month ahead and I did not see it coming. I was devasted. My relapse was life changing and it’s consequences went far beyond the physical. Devastated.

Like I said, I am working on it. I do not want this to become I self fulfilling prophecy. I dread the idea of somebody telling me that I brought it on myself by not thinking positively. To people who may think that or have other pearls of wisdom, I say to you, live it. Live the past four years of my life and then tell me how I should feel. Evidently, this is a touchy subject. Even these imaginary conversations make me see red.

Relapse is my main concern but it is not my only hurdle. I went for over three years only being hospitalised for diagnosis and transplants. Sure, there were a few trips to A&E in between but my overnight stays were limited. Now, I have been admitted to hospital twice in a six week period. How will this develop? Will I end up missing more birthdays and Tuesdays in my future because I have a weak immune system? You betcha. It’s an unpredictability that means that my immune system is not the only thing about me that is weak. 

In an attempt to turn my frown upside down and reduce my worry lines, I spent two weeks trying to get as comfortable as the bed of nails allows. I really did, and then there was another incident that irritated my paranoia. Enrage my paranoia more like… It was an incident that led to me vocalising my worst fears and led to my family revealing to me that my worst fears are theirs also. 

On a Wednesday, I attended my now three weekly appointment at St Bartholomew’s Hospital. At these appointments, they take my blood and my pee and chat to me about my previous results. At this specific appointment, I explained that I could now move without experiencing horrific pain and the Medically Trained Person reduced my dose of steroids; drugs I am given to keep my GVHD at bay. It was a positive 15 minutes, despite the frantic worry I experienced before it when I was told that my appointment would not be cancelled as a result of the Junior Doctor’s Strike. My pre appointment fuss went something along the lines of why didn’t they cancel this appointment when they cancelled a previous appointment when the doctors were striking.* Why? Clearly there is  something in my results that they need to discuss with me. Then cue, no constipation worries or sleep the day prior to my appointment.

I left St Bart’s  happy. The next day, a Thursday, I had my three monthly appointment at UCLH. A cause for excitement if ever there was one. Approximately an hour before my appointment, I received a phone call from a secretary at the hospital telling me that I had to go in for an appointment. In her confusion, she said I had to come in because my doctor at Bart’s had phoned to speak to my doctor at UCLH to discuss my results and those results had to be discussed with me that day. I took a deep breath and all those thoughts I had been fighting to not have, pounded out from the rock I had hidden them under and sheer, all consuming panic set in. It was a sweaty, shaky, two and a half hours of utter dread. This is it. 

When I eventually saw the Medically Trained Person, I had already explained to another how I felt. I was almost manic. I discovered that the Medically Trained Person from Bart’s had indeed phoned the head of UCLH’s Myeloma department to discuss my results. He had phoned to tell her how happy he was with my results. In short, he had phoned her to boast about my results. To boast! It took more than one exhale to get over that. In fact, nearly two weeks on and I still think I am recovering from it. 

Never in my wildest dreams did I imagine that the reason behind that phone call was to boast. I thought the worst, like I apparently always seem to do. A revelation that brought along it’s own set of neuroses. 

According to my counsellor, all my feelings are normal. I take some comfort in that. Remission does not mean that I am free, but I know that it also means that I should be able to let my hair down occasionally. It’s not long enough for that yet; I’m not a superhero. All I can do is try and my sanity needs that. My new management technique involves scheduling in time for the bad thoughts and then to banish them until the following scheduled time. I have chosen to do this on my commute. This is my commute. 

And this is my Sweet Spot. It’s a chemotherapy free, work in progress.
EJB x