The inevitable has happened, I am relapsing. I knew it would happen but had hoped it wouldnt be so soon. After I posted last month the good news that my hip pain wasn’t caused by myeloma (see my last post The Nightmare before Christmas) the bad news this month was that it is coming back. I wish my life wasn’t quite such a rollercoaster. I won’t bore you with the technical details, suffice to say that I have had 3 successive rises in my kappa light chains which have doubled each time and are now considerably out of normal range but not perhaps high enough to start treatment yet, all else being well. And that is the irony, I am feeling really well.
Being so well and strong this past year I had dared to hope for a long remission, maybe 5 years plus, I had already booked three holidays for this year (unusually for me as I always used to leave this to the last minute), started training for a triathlon in June, had a work plan for the future and hopes of perhaps finding a partner too, thinking that my life would be long and healthy enough for all that to happen. I was almost complacent about my remission. I thought I was invincible. How the mighty have fallen! Now the future seems as bleak as it did when I was diagnosed in December 2010.
I have talked the talk in my blog about living in the moment and banged on about the merits of living day to day but now I can only see a gloomy future, a life on treatment until the options run out and myeloma becomes resistant to the drugs. I am categorising myself as one of the unlucky ones, reading grim statistics about survival rates after relapse. I am unlikely to get a donor match to have an allogeneic transplant, see more on this in a previous post (Clinic appointment on Friday the 13th ) which relates in part to the Anthony Nolan Trust and my search for a donor last time around.
And oddly enough I feel anger too, not an emotion I am usually inclined to, being of a fairly calm and cool disposition. I feel non directed anger about how my life has panned out, , the unfairness of it all, anger with myself for not always making the right choices, anger with the NHS for not funding Revlimid maintenance therapy which might have doubled my remission, anger with my haematology medical team for not supporting me enough and angry that I have to live like this, with uncertainty, illness and death.
I also confess to feeling envy, yes envy of my fit and healthy peers planning their gentle third age, envy of people who are just getting on with their lives, envy of people out walking their dog in the park, happy families, joggers, couch potatoes…. the list is endless, in other words, NORMAL PEOPLE who don’t have to live with a life limiting illness. I’m not saying that they are “normal” or that I cant do the things that normal people do, (except plan for old age and worry about pensions which is actually quite liberating!), I’m saying that I always carry with me that consciousness of my own mortality, it is ever present, even permeating my unconscious mind now (in a lot of my dreams I have cancer). I no longer have the luxury of being able to take things for granted even though that is not necessarily a good way to live, just now and then it would be nice.
I even feel jealous of fellow myeloma sufferers who are enjoying longer remissions than I had. How awful is that? I mean I wish them well and a very long remission of course but I just wish I was one of them.
I have told a few friends and family, they don’t know what to say. A common response is can you do anything to stop it coming back…. what like eating more fruit and vegetables, drinking green tea or taking a vitamin supplement??? Are they kidding, it’s cancer for fucks sake! It comes back of its own accord regardless of my lifestyle choices. If anything I should have plenty of brownie points stored up for the active and healthy lifestyle (apart from the odd cake and mojito now and again!) I have led in remission and prior to diagnosis. It makes not one jot of difference with myeloma. I could have slobbed out, smoked, drank and eaten fry ups everyday and still be where I am now. In fact it strikes me from the various forums I am on just how many people prior to diagnosis seem to be fit, health conscious and active people. As one friend said to me when I was diagnosed, we all try to live a healthy lifestyle, don’t smoke or drink too much and the shit happens anyway so why bother!
That brings me on to the subject of fighting talk, the people who would say ok its happened but you’re a fighter right? You’re going to fight this, beat it and win, yes? Well actually I am not going into battle with abnormal plasma cells in my bone marrow, I’m not going to obliterate my excess of Kappa Light chains (sounds like Star Wars!). When the time comes for treatment again, the chemotherapy will create a chemical reaction that I don’t understand (and that my doctors understand hopefully some more of than I do, that being their job) that may help on a temporary basis to stop the abnormal cells from producing, that’s it, that’s all there is to it. It is not a contest, a battle of endurance like Andy Murray v Roger Federer, smashing the cancer like a ball over the net, giving it my all. Cancer cells exist in my body whether I fight them or not. As a fellow myeloma blogger put it very well in his recent excellent post on the certainty of uncertainty…
“Disease biology is destiny. I am no match for the pathology of cancer. Nor should I expect to be. It is going to do what it is going to do.”
I cant beat my abnormal cells into submission and dont want to feel beaten by cancer now it is returning, like it is my fault for not putting up a good fight or not living the right way or come to think of it, another bugbear of mine, not being POSITIVE enough.
I have been told “you have got to stay positive”. Why, because that makes no difference either. I remember not long after diagnosis when I was in a very big black hole, I read a cancer supplement in the Times that had an article on whether there is a link between positive thinking and survival prospects in cancer patients. I didn’t keep the supplement unfortunately and now I cant find the link but there are plenty of studies out there which show that being positive has no effect on cancer and neither did being stressed or depressed mean a worse outcome. I was immensely relieved to read that at the time and still find it reassuring. Whilst being positive may make it easier to deal with the diagnosis and the treatment and certainly makes life easier for your medical team than a tearful and anxious patient as I was, it doesn’t affect the outcome.
For anyone interested in the pitfalls and politics of positive thinking, I recommend a book called Smile or Die by Barbara Ehrenreich, an American political writer and activist.
Cancer is not a problem or an illness – it’s a gift. Or so Barbara Ehrenreich was told repeatedly after her diagnosis. But the positive thinkers are wrong, she says: sugar-coating illnesses can exact a dreadful cost. She was told when diagnosed with breast cancer that having a positive attitude would help. That was like waving a red flag to a bull and she and others have thankfully debunked the myth of positive thinking.
Thank god I don’t have feel positive and maintain an upbeat demeanour or practice daily visualisation exercises of my good cells killing my bad nasty cells!
I am sorry if I have offended anyone with my anti positive talk, if it works for you then that is great. I also apologise for my rant. I won’t always feel this way, I just need time to get my head round it and to adjust. In fact I am already feeling more accepting and fatalistic. As my favourite fictional mobster and anti hero Tony Soprano often said…, rolling his eyes and shrugging his shoulders.
22 responses to “Hello relapse, goodbye remission”
Oh Wendy I am so gutted for you. As one of those people you probably don’t want to hear from at the moment, I am still going to write to say that, as much as you may not believe me, I feel so awful whenever I hear that someone has relapsed. Of course I don’t wish it were me, but I still don’t want it to happen to you.
And I am totally with you about the positive thinking bit. I am sure it is easier to walk through what you have when you are able to feel positive, but it is FAR easier said than done. And you’re right, I don’t think it influences whether life is longer or not for people. Like you, I talk the talk at times, but I still have many harder moments that I don’t always share! Living with myeloma isn’t bloody easy and so we are all, and especially you with the relapse, entitled to have black moments. It’s normal after all. People who are healthy and say that you should live life for the moment, should try living it with the news that we get given….and again, when you relapse. It’s not that goddamn easy is it!
Wendy, I know we haven’t spoken much for ages, but if it would be of any benefit, you know where I am….that’s if it’s not hard for you to speak to me.
Take care hon
Hi Debs, of course I want to hear from you and hope your remission continues for as long long time, thanks for your comments xx
Hi Wendy Shaun & I have read your latest entry together, and are so fucking pissed off for you. It is absolutely crap, and unfair. No wonder you feel angry! We feel angry for you! We knew, of course, that one day we would be reading this, but we hoped it would be a few years off. Certainly when we read about you playing tennis all afternoon in the summer, we thought, and hoped dreadfully, that you’d got a good period of remission. Indeed, you were clearly much more fit than we were, and we couldn’t imagine (as you couldn’t), that the rug would be pulled from under your feet so suddenly. Will you be considering / able to consider another auto-stem transplant, with the cells you have in the freezer? You told us a second remission is never as good as the first, but perhaps you could be playing tennis again (or equivalent) somewhere else this summer?? We certainly hope you will be able to go on your first hol, at least, before starting any more treatment. You might as well have the hol/ hols first, and be decadent and indulgent with yourself. I’m sure you are busy planning what’s best for you right now. It must have taken you ages to write your latest entry. It was superbly well written and ranted – excellently composed. I’m sure it must’ve gone through a few reviews, and has helped you get your head around this crap, if nothing else. It’s also a much simpler way of telling us all what’s happened – who wants to have to send all their friends and relations separate emails/phone calls about this – you’d be absolutely worn out!! We’ll phone you in a couple of days, and you can tell us what your plans are – hopefully which holiday you are STILL going on next! If you need to swear and cuss down the phone/via email at anyone, or would like a Roma-dog around your shoulders, get in touch. Our love and support, and fucking-pissed-off-ness Gilly & Shaun xxxxxxxxxxxxxxxxxxxxxxxxxxx
Thanks for your comments, Gilly and Shaun, I hope I can continue with my planned holiday to India but it could be risky if I get a bout of Delhi belly and cant deal with it, I need to see what the next test result is and speak to my consultant. As for tennis, I WILL NEVER GIVE THAT UP!
ps a cuddle with Roma dog would be lovely, hope your Burns night goes well
Hi Wendy, Mike gormley here, 3 years and 1 SCT into terminal Myeloma.
I am obviously very sad to hear your news, and I have a lot of respect for your stance on your situation. x. I went to my 3 month appointment yesterday and was told that I am doing ok with no discernable trace of return of light chains etc., and even an improvement in my kidney function, meaning they can now take the P out of me even more ;-).
But I still don’t know it won’t be back in the morning, so I adopt neither a positive nor a negative attitude to my supposed fight to extend my life. Instead, I personally prefer to imagin that I am better off than the bloke that got run over by a bus yesterday,JUST. So you will probably just have to squeeze as much nice in to a shit situation that you can muster, and on this note, if you fancy getting completely rats and scoffing fish, chips and mushy peas on a stupid night out dancing in somewhere like Wolverhampton or Birmingham with Lorna and myself, then just give us a shout!!!!!!!!!
Thanks Mike, I like your attitude, squeezing as much nice into a shit situation is exactly what I intend to do!
You speak many truths. I think some of us try to stay positive and hopeful for our friends and family. I don’t know that my children, grandchildren, or husband would be able to cope or learn to accept what will be inevetable one way or the other. I just pray that I have time for them to accept my eventual passing with some comfort and knowledge that when it happens it will be ok. They will be ok. I get angry, I cry, I refuse to die in the middle of a good book.
I am jealous sometimes as well. Every time I see some 300 lb. fat ass that probably has heart disease, etc. and will most likely live to see 90…. I waited 50 years to find a husband worth keeping, finally start getting my life in order, finished school and started planning a career and got hit with this. I want to leave a mark on the world. I want people to know I existed in 100 years.
Because some of the grands are still little and there are (I hope) some yet to be born I am writing a little book about where they come from. WHO they come from. What I have experienced, what has changed in the world since I was born. My hope is that each generation will add a little to it and future generations will know more than just a name on a geneaology chart or a picture in a frame. I am! I exist! I am loved and I am important! And most of all I have touched lives that are better because I passed through them.
I am so sorry you feel like there are things you can’t do now. Do them anyway. If you want a relationship and love then grab them and don’t let go. I ould not trade one single min., with those I love. NOT ONE. Even the ones I/we have lost leave important memories and other lessons I could not live without. I hope and pray that they find a match for you and I hope you get another remission. And I hope that it is a loooonnnnggg one. I give you credit for having the courage to write your thoughts and feelings down and share them with us. Thank you. It is a gift to know we are not alone in this even though it often feels like we are. ~hugs~
Thanks Toni, I like your comment * I refuse to die in the middle of a good book”, that is exactly what it feels like! Good luck with your little book.
Hi Wendy, I was diagnosed in August, 2011 with myeloma after routine blood tests showed my counts were off. I was one of those healthy guys who took care of themselves. Probably should have taken up smoking and binge drinking! I was was 49 when diagnosed with a wife and two kids in elementary school. I coached Little League baseball and was involved with my kids in the Boy Scouts. The whole thing sucked then and it sucks now. I just finishes 8 cycles of carfilzomib/rev/dex in a clinical trial at the US NIH near Washington. It worked great for me but every new blood test feels like I am walking to the gallows…..Anyway, I can appreciate first hand where you are coming from and we all need to vent and get pissed off. Big hug. Terry
Thanks Terry, good to hear your treatment is working and long may it continue
I am so sick of hearing “He/She fought the good fight; or lost the battle; or tried valiantly to overcome the disease…” when someone dies of cancer. You are so right… it’s an effin’ awful outcome to any life. No one deserves it, earned it, magnitized themselves for it, or nothing. It’s a crap shoot, a bad roll, a rotten deal of the cards. And I have been the cheerleader/supporter for some wonderful, special people as they have tried various combinations only to learn after a ghastly silence that they took that Last Train out of the station.
My heart breaks with each loss and I volunteer for fund-raising events, as if my paltry time contribution will change anything for those suffering. I feel frustration that if there are ‘cures’ that the Big Pharmas are suppressing, then that would be one group I feel deserves the opportunity to feel what the rest of us are experiencing.
I want this disease stopped, but it is like a swarm of angry African bees, just stinging everything until the subject is overwhelmed… and thinking positive thoughts in the middle of that situation is probably not very productive either. However, I continue to intend that your medical team is finding a combination that is working for you, for the highest and best good of all concerned, so be it and so it is!
Thanks for your comments Sandy, I don’t need to start treatment yet thankfully, just watching and waiting
It’s a bad situation we are in. I like what you wrote and the way you put it.
Thanks, I’m glad you liked it, we all need to vent sometimes!
Wendy: As a caregiver to my honey of 52+ years, I identified with so many of the things you said. I literally hold my breath, each month, as I look at his lab numbers ….. wondering “is this going to be the month that he relapses?” His response to the comment “you need to be positive” is….”I am, I’m positive I have cancer!” Hugs, and my only advice is….hang in there!!
Hi Sarah, I love your husband’s comment, its the only certainly we have isnt it! Thanks for commenting, I will hang in there and you too.
I am so sad to read that those stinkin’ light chain counts are rising again, Wendy. I hope you wil be able to carry out some of your plans before you have to start being treated again.
So do I Eliz, still going to Tromso in a couple of weeks to hopefully see the Northern lights, thanks for your comment.
Hello there! I found you through Lorna / Mike’s blog. I think I have been here before but I may not have commented because it felt like you were in such a different place from my husband and I think I was feeling some of those feelings you are having now about how lucky “other people” are. But now I can see it is actually the same cycle for everyone close to MM, the same rollercoaster. We’re just at different parts of the same damned loop-the-loop. I just want to offer my virtual support and wish you well. I don’t do much positive thinking, but I definitely believe in seizing the day – so you enjoy those holidays you have planned! All the best, Roo.
Hi Roo, glad you found my blog again, like you say, we are all on a rollercoaster, just on different seats. I’m now in Tromso in search of the northern lights and feeling well, so all good for now!
Hello Wendy. We have never made contact before and I came across your blog whilst searching for “frothy urine” charming isn’t it. I guess you can imagine why I was searching for this.
I was diagnosed with mm in November 2011 after a summer of limping with pain in my right leg. That turned out to be a fracture of the femur. I have IgA myeloma with t4;14 chromosome abnormality.
With 2 daughters aged 12 & 18 I have from that day of diagnosis to this point been unable to cope with what this shit will bring to them.
I Started in December 2011 with CDT and had a fantastic response achieving a complete response by March 2012. This w as followed by Autologus STC in May and still no sign of paraprotein or light chains. In September 2012 I started a clinical trial with velcade. All was looking good until January when BOOM!! I had an excruciating back pain and to cut to the point I have relapsed even through the velcade.
As I read your blog about your feelings it was as if you had put into words my exact feelings. I carry on every day pushing myself to appear as normal as possible. I work 3 days a week and try to do as much as possible with my children at the weekends. Underneath all of this facade I am terrified.
I feel as though my heart is being torn open every time I look at My beautiful girls and their ignorance to the fact that the myeloma has a life expectancy issue. They know I have myeloma and they know I will spend most of my life of treatment but at the moment they think that is a never ending situation. I just don’t know how or when I will have to break their hearts and tell them.
I am sorry to hijack your blog but I finally found someone who has been able to express how I am feeling. I am only sorry that you are in this situation to have to write it.
I read Deb Gascoynes article in myeloma Uk and that too had a lot of feelings from my heart, especially regarding the children.
I can just about see what I am typing now as the tears are flowing so I will sign off for now. I would like to keep in touch so I have clicked on the link to follow your blog. I wish you some kind of miracle as I do for all of us in the mm world. Much love. Jacqui. X
Hi Jacqui, thanks for taking the time to reply, I hope you can find some joy in each day and as we all have to do, try not to think too far ahead