Well it’s now been over 6 weeks since my last update, so thought it about time I shared some more of my experiences.
I’ve recently completed my 3rd chemo cycle and am currently on a weeks break before I commence my 4th and final cycle. I am writing this blog from the Liverpool Hospital Haematology ward where I have been for the past 2 nights so my time since my last update has not been without incident.
In reading others stories on how they have coped with chemo, I still count myself lucky on the side effects that I have suffered or rather not suffered. After 3 months of chemo twice per week I have not lost any hair at all (although it has become a little fuzzy but no loss which if you saw me I can ill afford), I’ve had the standard nausea and sleepless nights from the steroids (dexamethasone), tiredness here and there and pain in my legs but nothing terribly debilitating (yet).
Where I have been very unlucky is that I am one of the 20% of Multiple Myeloma suffers who have also been diagnosed with Amyloidosis in my bowel, stomach and potentially heart. This has caused major complications in that I am breathless and really cannot do much in the way of cardio related activities. Prior to being diagnosed with Myeloma I was a very active person who walked extensively and spent lots of time in the gym. I can still spend time in the gym, however can only focus soley on non aerobic exercises which is better than nothing. This has to some degree put me back a little. I have spent a day here and there in hospital due to heart issues caused by the amyloid but such is life and you get on with it.
Work wise I am still working full time, however mainly work from home due to low energy levels. I am very fortunate that I have the support of my employer.
As I said at the beginning of this update I write this from my hospital bed. I was admitted 2 days ago because my blood pressure was so low that I was passing out constantly at home which became dangerous. This current development my doctor has put down to “autonomic neuropathy” caused by the amyloid. What this means is that we are not going to complete the last cycle of chemo, but go straight into a “stem cell transplant” which was always scheduled after chemo cycle 4.
This process will involve 2 days of high dose chemo, followed by stimulation of my stem cells before collection. Finally the transplant will take place some 8 weeks away where I will spend close to 1 month in hospital. This will give me some time to provide a further update.
After my current mishap (well that’s what I call it) of being in hospital again this week I feel so much better……funny that. It’s also given me strength and perspective to stop feeling sorry for myself and to get on with getting myself better. I remain more determined than ever that despite the hand I’ve been delt with I refuse to give up and will stay the course.
Remember when life serves you a lemon, make lemonade!!
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I know it's hard to believe you have cancer, but this is now the "new normal" or so I keep saying to myself. You will have your good days and your bad days, but most of all you must maintain your positive nature and the strength and support of those around you.
Thinking of you Kim, and all the best with your treatment ahead!!
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I think it would be pretty difficult to go to and from treatment by myself. Most days I'm feeling ok after treatment, however there have been times when I've been super tired and not capable of driving. Still trying to work out which drugs have that effect and which ones don't. When I was initially diagnosed i was at stage 3, so was pretty bad. My calcium levels in my blood were so high they were concerned I would have a heart attack or go into a coma. On that day I could not remember much because all I wanted to do was sleep. The next day I was diagnosed then started chemo the day after so I was pretty sick. As far as my chemo drugs they are Clycophosphamide, Dexamethasone, and Valcade. Am also taking a host of other drugs to counter the side effects.
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I am currently undergoing treatment for Myeloma. So far I've had 1 full 5 week cyle of chemo consisting of 2 days each week. I'm on a break at the moment and feel pretty good. Will start again next week. While the first couple of treatments mainly gave me chemo brain where I could not retain anything or appeared drunk (as my wife put it), it has become easier after each treatement. Oh, and the other side effect was not being able to sleep because the steroids. I will continue this treatment for the next 3 months, then finish with a stem cell transplant.
Hope this helps Maureen.
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I'm sending you lots of positive thoughts your way, so I do hope you feel an uplift in energy and motivation. I've read your journey so far, and while your 1st lot of chemo has been tough I do hope it becomes a little easier as you continue.
I know at times it's bloody tough to even get out of bed on some days, and believe me I've been there, but you can never give up. You have a wonderful wife and chldren to live for.
Best of luck, and I hope all goes well for you Paul.
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On 25th February 2015, my life changed forever when I was diagnosed with Multiple Myeloma at 49 years old. A month prior I noticed when on holiday that I just wasn’t feeling myself, nothing serious but enough to say to my wife that I felt out of sorts. The following week I started to notice that my energy levels were not the same, and I slowly started to deteriorate in strength, energy and motivation. I had no idea at the time what was going on, but also noticed that one of my ribs was quite painful (a classic myeloma sign). I also started noticing bruises starting to appear over my torso for no reason at all, and I am generally the sort of person you have to hit pretty hard in order to bruise (another sign). Over the next couple of weeks I started to lose my appetite and weight just started to fall off me (7 kilos in 1 week). My doctors started sending me for tests on my rib (xray, bone scan and CT scan) of which these identified a fractured rib to lytic lesions on my spine.
I still tried to work during this period however it was becoming more and more difficult as my energy levels waned and my overall body strength and weight just disappeared. I thought I had known tiredness, however I had never experienced fatigue like this before. I could barely life my arms above my head when getting dressed and also noticed that I was out of breath when walking 20 metres. It was a terrible time in my life, however I have the most wonderful wife who supported me through this.
On a Monday 24th Feb I went into work and apart from feeling extremely fatigued I was also nauseous. My wife called me to make sure I made it into the office OK, and I told her I could not do this as was nauseous. Anyway she came and picked me up and took me straight to Liverpool Hospital as directed by my doctor. After a 4 hour wait the hospital wanted to send me home because my symptoms were “unremarkable” and did not warrant being treated in emergency. My case was referred to a more senior doctor who tested my blood calcium levels. These subsequently came back as critical so I was admitted for the night to reduce my blood calcium levels. In the morning I was admitted to the “Haematology Ward” and a biopsy was subsequently completed. The results were then confirmed in 4 hours which were positive to Multiple Myeloma.
The telling of the news by my Haematologist to me was not the most positive experience. For such life changing news I wanted my wife to be there as well as she was 10 minutes away, and my Doctor could not wait. As such I had to be brave for the news, then had to sit there while I was told what the next steps were. This of course I did not retain because all I could think of was “F….. it’s Cancer!!!! My doctor left, then my wife came in with our 16 year old daughter. Not the easiest news to tell your wife then daughter at the same time. Needless to say we all broke down. An experience I believe could have been handled a lot better. After we took in the news and spoke to the staff again, I was told treatment would be via chemo starting the next day, and this would continue for 4 months. At this stage I was not sure what the hell I was in for, however the one thing I did know was that I had the most amazing support from my wife and her family. My family and support would come in later that day.
So much to think about, so many questions and no answers at this stage. It was a whirlwind couple of days.
It’s now been 5 weeks since that day changed not only my life, but the life of my immediate family. Within this time I have learnt much about myself as well as those around me. I have learned that this type of cancer is a 1 per centre, and is also incurable. I’m 49 so at the younger age of the spectrum of when this type of cancer is diagnosed. I’ve also been diagnosed with Amyloidosis just to top things off, so am feeling pretty special…..not.
When I reflect on the last month, chemo has not been as bad as I expected. There have been many times where I have been as “drunk” as my wife so delicately put it due to my reactions to the chemo drugs. I also suffered “chemo brain” so was not able to retain much memory of what was going on around me during this period. Thank god I have a wonderful wife who now became my nurse, my EA, and my brain. I was not able to even manage my appointments during the 1st couple of weeks such did I suffer “chemo brain”. My body before and after has wasted away to nothing. I dropped 12 kilos, and while I’ve put half back on I’m literally half the man I was before. I was quite a big and strong man previously, and am determined to get back to this. While I’ve been back in the gym for the past 3 weeks, I’m such a long way from where I use to be. That’s ok I keep telling myself I’ll be back there again. The 1st couple of weeks I hated walking in front of a mirror seeing what I’ve become. I’m now use to, and am happy that I’ve put some weight back on as did not want to continue with the emaciated cancer look. People now tell me I look good when I tell them I have cancer.
I’m now back at work full time, and work from home on the days that I attend chemo which is twice a week. I am fortunate in that I work for a large organisation, so was able to take a month off work while in hospital and working out the effects of chemo. By the way I’ve not lost any hair yet, so am hoping it continues this way. My employer has been absolutely incredible with the support they have provided so I did not have to worry about my job or income.
I’m nowhere near where I was before I became sick, however I’m feeling so much better and stronger 5 weeks later. I do know that I’ve got a long way to go, and it will be a hard road ahead. I have the most incredible support from my wife, her family, my family, my work, the hospital and their wonderful staff, and our local community. This has been an experience which my wife pointed out “it’s as though you’ve died, and you find out who really cares about you”. Finally, I have an incredibly positive attitude. How could I not be positive with the incredible support around me? I maintain that if I didn’t have a positive attitude then I may as well give up and die. I have far too much to live for, a beautiful wife and 16 year old daughter to live for.
So there you go, that’s my story so far. My intention is to share another instalment in the future of my progress. I’m also keen to hear other Multiple Myeloma suffers/survivors stories as I want this to inspire me.
Until next time.
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Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.