“We have been living with Multiple Myeloma since 2005.”

Like an uninvited house guest that refuses to leave, this cancer rapidly wore out its welcome.

Our comfortable sensation of certainty was stripped away in an instant and replaced with fear.


But as well as the burdens it brought challenges that, it turns out, have greatly enriched our lives.


Once the dust settled we realised that our “taking for granted” was also gone, replaced with a deep sense of gratitude for each moment and the opportunities that they hold.

We’re telling our story in a book called “personal chemistry”. It’s well under way and if you want to follow our progress, email me to join our mailing list or hook up with us on facebook. Also feel free to email us via the link at the bottom of this page.

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Peter Webb & Ruth Williams’

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I've spoken of the physical stuff often enough. My feet are increasingly numb now with that extending up my calves as well, which only bothers me at odd times during the day, in the shower, in the evenings. Ruth is kind enough to massage my feet each night which helps a lot. It worries me a bit in that it is most likely irreversable but given that there is not really any alternative to this drug for me right now, I don't indulge that worry too much. I get a lot of headaches in the days after velcade, which I treat with asprin if mild, panadeine forte for the more extreme. The oesophageal spasms seem to come regardless of my precautions and last for two days, sometimes I get a lot, sometimes only two or three. I often get mouth ulcers, this month I have a gigantic one on my tongue that stings annoyingly, I am using salt water mouthwash to hopefully shorten it's tenancy. I am constantly feeling exhausted, but after velcade that ramps up to whatever is beyond that. Thanks to my emmy nom, I have a stack of DVD's of US tv shows that I can fall asleep to on the couch to. It's winter time now so I do that to the gentle hiss of our gas heater which stays on all day next to me in the lounge room. Sounds cosy but given that I am fairly driven to "get things done", it takes a conscious act of surrender for me to ride out the exhaustion.


The fourth week of each month is my "week off", I really look forward to these and my physical and emotional wellbeing increases hugely. I start to feel happy which in itself helps me remain bouyant. Ruth and I often head to Wonyip for a long weekend which really helps us cope with the other three weeks. Ruth has dropped her work commitments back so she only accepts days when I am also at work. This has meant that we spend a lot more time together and we both really enjoy that. Even when it's traipsing out to Box Hill Hospital again, it's so much better to do that together.


The big upside of velcade is that it's really working to control the myeloma. First couple of months it halved my PP levels, 32 to 16, then 16 to 8. That slowed as it encountered MM cells with a bit more resistance but it's now down to 4. I am really very happy about this, if you look at my PP levels graph, you can see why. ( http://www.personalchemistry.org ) The long slow climb up to 32 made me nervous and concerned so it's great to have it down so low again. When Rowan feels confident it has "bottomed out", we will reduce the dose to find the maintenance level, what is required to keep it down low. He also suggested that I have another stem cell harvest soon so I'll have a store in case I need another transplant. As you can imagine, I am not hugely keen to go back there, but if I make sure I am in the best possible condition it may not be as bad as the first one I had. 

Journal 20th June 2012



Tomorrow is dose 2 of cycle 6 of Velcade. That means I'm half way through my sixth month on this treatment, I've been to the day ward at Box Hill sixteen times now, three weeks out of four each month. My official comment on this, when asked is "well, it's starting to wear me down a bit ..." which is a big understatement, really.


Physical side effects start each Thursday and last until mid Sunday when I start to feel a bit more normal. That's four days out of seven that are kind of a write off for me, and to some extent, Ruth too as she is definitely by my side when I am down. Psychological side effects last the whole week, most often. I can be anywhere, at home, at work or out shopping and if I catch the slightest scent of a cleaning product that is like the hand steriliser that the nurses use at the day ward, I feel immediately nauseous. If I accidentally remember the sensation of the cannula being inserted into my arm, again - immediate nausea. It's not that I think about the chemo, or remember feeling sick, it's an involuntary physical reaction that I don't have any control over. 

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writing and images done pending edit



writing continues, images under way



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just started

July 12, 2012 -


Just a quick update ... if you check out my PP graph, it now includes July’s results which are much better than expected. PP level is down below 2, clearly the Velcade is doing it’s job and my other blood results show my body is dealing with it quite well despite the side effects noted in my journal entry below.


This good results mean that Rowan has dropped my chemo regime from 3 weeks per month to 2. That is wonderful as I have not been recovering fully between chemo doses, my condition has been slowly dropping. At least, it’s felt that way to me and it’s been harder to keep up with work and things that need to be done.


Also clear on the graph is that Revlimid was no longer working well in controlling the disease, we needed to take this step to get those levels down !

August 11, 2012 -


I am in month 8 of Velcade chemo treatment. Side effects continue as previously described but I am now reduced to two treatments per month giving me more recovery time - this is working out better for me. Myeloma levels are maintained at a low (just detectable) level <2.


Also I have started back at my TCM (Traditional Chinese Medicine) centre, doing acupuncture with Vlado who has been a fantastic support throughout my treatment.


TCM is not like taking an asprin, I have never found the cause and effect to be as easily measurable as western medicine but I have found both the treatment and the discussions I have with Vlado extremely helpful to me in a broader sense of dealing with the disease and my life.


One of the main things is the TCM approach to energy in the body and how to manage that. You will probably have heard of Tai Chi - and seen people doing the slow ballet type moves in the park. Chi refers to energy in the body and there is a medical version of Tai Chi called Chi Gung. Chi can be measured by TCM practitioners and, broadly, there are two kinds. The light passionate form is what draws us into activities. The denser kind is like stamina, it is what backs up the light energy and helps us get through those activities. The dense energy is very depleted by chemo and that shows in the exhaustion that we feel. It is also slow to replenish, it’s easy to be drawn into activity by the lighter chi and then be left unexpectedly exhausted when the dense energy quickly runs out. Managing that is a big part of maintaining quality of life.

February, 2013 -


It can be difficult to get a sense of the scale of something that occurs in small numbers daily so I thought I'd start collecting empty drug packs, to explore the quantities I am taking. This photo is about a month's worth for me and all of them are counteracting side effects of my main chemo therapy. It's a lot of pills ! I was surprised how many. In terms of results though, they're still good ... my PP levels are still undetectable, yay !


I have 5 months left of Govt. funding for Velcade, after which my Oncologist has suggested I take a break (no chemo) and see how that goes. I imagine I will still need the side effects drugs for a while but hopefully my "months worth" bag of pill packs will be a lot smaller by the end of the year.

late February, 2013 -


First pic is Ruth and I waiting in the hallway next to the Oncology Day Ward. It’s cycle 15, day 01, which means I’ve had 15 four week cycles of Velcade. I always feel nauseous sitting waiting to go in the ward. I do get some nausea from the drugs but what I’m feeling at that time is psychologically induced. The day ward nurses are great and I sincerely enjoy seeing them and sharing stories. I think my body is wise now and knows that the side effects will follow so that manifests in my anxiety and pre-nausea.


Second picture is the area of my tummy where the sub-cutaneous injections are delivered. I used to have a cannula in my arm each time, now we only do that every 8 weeks when I have the zometa as well as velcade. The “sub-cut” delivery of velcade is much more tolerable than the cannula, though it does hurt quite a lot when the drug is being injected. There was a possibility that sub-cut delivery would also cause less peripheral neuropathy - I’m not clear if that is improving yet. It’s still painful and requires drugs to mask the pain. It’s possibly a litte bit better ... maybe ? Otherwise I am doing well, particularly in how well the velcade is controlling the Myeloma. It’s been undetectable for 2 months now which is SO WONDERFUL, I never thought it would be at zero again.

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late February, 2013 -


You may have noticed that our “how finished is the book - o - meter” has crept up a little bit. This is due in part to the long stretch of hot days we’ve had here in Melbourne ... prompting Ruth and I to do quite a bit more work on “Personal Chemistry”.


We printed out a “laid out” version of the first 100 pages, to see if our general approach to writing was going to work. Hurrah ! Cheers from around the globe, it does seem to work quite well. We have quite a lot more written and in the manuscript, but not edited and laid out as a graphic work.


The book is a combination of material that Ruth and I have written throughout the seven years since I was diagnosed, observations and reflections written from present time, and more “narrative glue” that needed to be put in place to make it readable and navigable.


Pictured here is Ruth reading the second printed draft. Binding is of course temporary, good enough for drafts but our intention is that it will be printed and bound very very properly !


June, 2013 -


The winter sun was wonderful today, only mildly warm but so much more cheerful than a rainy day.


I have only three more Velcade treatments to go before I am officially “on a break”, meaning that the government funding for my Velcade is running out and we will go into a “watchful waiting” mode with my cancer.


I am officially in remission, meaning that the myeloma is undetectable in my blood tests, the Velcade has successfully suppressed it. Rowan has said how pleased he is with my progress, and that my remission may last 6 months, a year, we won’t know how long that will be until the cancer resurfaces.


I have mixed feelings about this all. I am happy to have the drug work so well, am disappointed that the funding is running out. I am angry that I seem to be at the mercy of the myeloma, it will decide when my break from treatment will end, I have no say in it. Is that true? Maybe there are ways other than the chemo that I can exert my influence and keep the myeloma down. Trad. chinese medicine is one, more focussed meditations is another. Many folk I have contacted online use curcumin (from turmeric) and say that works. I am hesitant to get on board with any of the many cancer curing ideas one sees online - but this one has a ring of truth to it and some studies have been done ... maybe I will try it.


And when the myeloma does come back, there is no certainty for me other than Rowan’s comment that I can probably get on a clinical trial of one of the new drugs. Is that comforting ? Not for me right now, I find that a difficult notion - clinical trials are often more onerous, have more tests, more hospital time and less certainty of success than proven drugs. I am actually scared of getting on a trial, I don’t want any treatment that is more damaging to our quality of life than the Velcade is. I have learned how to live with that. So, sometime in the future we will have to learn to live with a new regime.

October, 2013 -


Finished Velcade Chemo at the Box Hill Hospital in June. Yay ! Finished ! my long anticipated break ... much less medical “interference” in my life!


Can you sense a setup here ? Well - I felt liberated and decided to sand our rear deck down with a hand-held belt sander. Though it did a good job, it was a beast to handle and after two days of hard slog with my “probably shouldn’t be doing this” alarm going off - I had a big flare up in my neck pain that became excruciating and referred down my arms. My right arm lost a lot of it’s strength so I sought counsel from Peter Wilde - the orthopedic surgeon that originally diagnosed my Myeloma. Though we worked through a couple of months trying to settle the nerve pinching down we eventually opted for the surgical fix - getting rid of the squelched disc, reintroducing a large gap to free up the nerves then bonding the two adjacent vertebrae with a large plate and four bloody long screws.

First image on the extreme left shows a side view of my cervical vertebrae, C5 and C6 have virtually no disc left, it’s a nasty bone-on-bone thing which is constantly inflamed (osteo-arthritis) and is pinching the nerves that come out through the foramen (small gap) and also has bony growths called spurs that are adding to the squishyness. Second image shows after surgery, the plate that is holding the vertebrae fused together, three metal pins that are part of a device that separates the verts. creating a large gap that frees up the nerves. The gap is filled with synthetic bone substance that bonds with my vertebrae and recreates stable function in that part of my spine. Recovery has been painful and is not yet complete.

August, 2014 -


At the beginning of April this year, I started on a clinical trial of a new combination of chemo drugs - at the Alfred Hospital in Melbourne. The results have been really good so far. Big reduction in paraprotein levels, however the side effects have been more difficult to deal with than Velcade or other recent treatments. Nausea, headaches, fatigue and depression is the mix. Ruth and I are pretty good at dealing with these things and maintaining good quality of life. I just find it wearing me down a bit lately. It’s ok though, I am still able to get through most things that I want and need to do. It’s just disappointing and disheartening sometimes.

Today however is a lovely winter sun kind of day, we just got back from a walk - it’s Ruth’s birthday and we are going to Melissa and Philip’s for dinner.

The book is going well, we have found a good ending point for it and are working on the last few chapters in anticipation of having an editor do a read through and give us some guidance and feedback. It’s exciting !

December, 2014 -


We are almost done with the writing and draft layout of the book. Next is editing and though I don’t want it to be a polished piece of writing, I’d rather it be as authentic and first hand as possible - it could benefit from fresh eyes so we can mend any bits that just aren’t working.


Then - we approach publishers and see if it’s something they think they want to print and distribute. Nerve wracking prospect !

July, 2015 -


Progress on the book is good. We have been writing for a reflective chapter in an attempt to have an ending for the book that does not involve me ending!


Also a very dear old friend, Jeff, was recently diagnosed with Multiple Myeloma - a very big shock to him and us as well, still seems too strange to be true. We sent him and his wife a copy of the book and their response was:


Just finished second part of book and am so thankful you sent it to us. So many commonalities in experiences although your bone issues and the advances since your diagnosis have me feeling like I have it easy. The personal nature of the writings from both perspectives are so helpful and unique to anything else I have found. So many shared emotions, discoveries, observations... Kindred spirits for sure. A journey you have shared with us for such a long time, one I certainly never expected to join you on. Your insights help immensely.


We sent another copy to a friend of a friend who has also been recently diagnosed with MM, her response was:


Your book has been EXCELLENT in preparing Tom and I for it. A gold mine of information but more importantly it's helped us prepare emotionally and I feel in a strange way like it has 'held our hand' as we go through the ups and downs so far. Thank you!

Since then we have begun our new clinical trial at the Alfred Hospital. Each four week cycle is two weeks of long hospital infusion visits and feeling totally wiped out, then two weeks of less contact, blood tests, and feeling a little recovered. I found a cluster of new holes in my head that were confirmed by CT scan. It’s probably one of my least favourite things, having cancer melt a hole through my skull. Very presumptuous and unwelcome. The chemo so far seems to have been reducing the soft tissue in the holes so they are at least no longer growing !


Soon we will be handing the latest draft of our book over to a friend who will do a tech read and then after discussion and adjustment we will move on publishing.

March 2016 - Expect the unexpected !

Too much has been happening !!!! A second clinical trial, then suddenly LOTS of holes in my skull, right eye and ear stop working, oh dear - plasmacytomas inside my skull which gets radiated quite a bit and we move from the Alfred to the Olivia Newton John centre for a tandem transplant.

a few pix from the excellent clinical trials room at the Alfred hospital in Melbourne. Wonderful staff make a grueling experience less so.


below - two scans, one shows myeloma lesions in the vertebrae and chronic osteo arthritic damage to the lumbar disks as well as some older damage in my pelvis. The other scan shows lesions in the rear of my skull as well as in my jaw.

left image is me with my head strapped down ready to be flooded with radiation.


below two images -


Casting wisdom aside we played as opening act at a gig at the Hampton RSL two nights before going in for my second transplant. Ruth also decided to learn to play the bass two weeks prior to our performance.


We had a lot of help setting up and breaking down so all I had to do was be there and sing. It went well.

below is transplant #1 of the tandem, my loyal stem cells from 2006 still viable and ready to go. The ONJ centre has a grand piano that I have sneaked down and played a few times.

October/November 2016 - oh no, it’s back already !

Although my response to the tandem auto transplant was good, we recently discovered that the plasmacytoma site that was radiated last November has woken up again with a bit of a vengeance, so I am currently mid way through a two week course of radiation to the area shown in these scans. Not much fun, quite worrying as the MM has dissolved part of the roof of my mouth and further loosened the remaining molar on that side. Was bone, now a blob of cancer ! Don’t like that at all. The radiation should stop this bit progressing, then we will see if there are any other active sites that need either radio or chemo. Book however is going very well, and is off with the technical editor for his input.