Chemo Wk 2 – I thought I had it handled. I didn’t.

Music: Where is the love (Black eyed peas), Beautiful (Christine Aguilera) Living On a prayer Bon Jovi, Me – I’m killing killing cancer, sorry good cells

Medical Update:
Full dose Chemo started (only half last week)
Glucose test: ‘Brilliant’ according to Dr L; normal=awesome pancreas
Dr L’s comment ‘I’m very happy’ with the way things are going

Blood summary (for normal levels see Chemo Wk 1 post):

Rollercoaster

I thought I had it handled: the meds, the new schedule of hospital appointments, new food regime, my admin. I’d written everything down: what to take, when; how to take it (with or without food, with or without gloves, morning, midday, night, once, twice or more times a day), listed things to get done, was recording my temperature twice daily and all experienced symptoms. I thought I was keeping on top of it all. I was feeling clever and calm. I was. Then I wasn’t. I felt angry and then a little stupid. I had missed a key drug.

It was Tuesday morning, I was waiting for my cannula to be inserted. A light bulb moment and then a wee bit of panic; I realised I had not taken cyclophosphamide yesterday. Why didn’t the nurse tell me to take it? Was I meant to take it as soon as my consultant gave the go ahead for Chemo? Yes I think I was, yet the instructions were to bring the drug up to hospital so I had expected the clinical team or nurse to tell me when to take it. Oh what a f**k up. I explained what had happened to the Nurse and she said there is no mention of Cyclophosphamide on her medication chart. Later she mentions there is usually a check box for that kind of thing. How much of a calamity was this? It’s a strict clinical trial protocol isn’t it? What happens If I don’t take the right med on the right day?

Nurse M had given me a table chart mapping out which med needed to be taken each day though it doesn’t account for daily frequency nor all of the supplements I’m having to take as well so I had written out a Janine version. Ha! Obviously I’m not quite as on top of everything after all. I spent the end of Chemo day 4 waiting for my consultant to advise the nurses what happens to me now and if and when I should take Cyclo. Dr L comes by about 4pm: “don’t panic, it’s fine, of all the meds to miss, this one was probably best”. He is such a sweetie and seems to say all the right things.

My heart rate (up to 90 bpm) began to return to normal. Dr L suggested I don’t take Cyclo straight away: “it’ll keep you up all night, take it in the morning if you don’t have an infection, fever or high temperature”. Phew. Not a complete disaster then. We talked about the email he’ll send, about it being ok for me to travel (hmmm, hoped he still trusted me to take the meds on time while I’m away) and he checks again that I WILL be back for the start of cycle two. I reassured him I would be.

I felt awesome on Wednesday; the sun was out drenching the garden, I felt pain free and full of energy. I thought; “This is good! I even feel a bit high”. I wondered what was causing the euphoria. Drugs, no doubt. Relief, probably.

A superb short piece of consulting work through a team I wanted to work with had been offered but the start date was yet to be confirmed. Wednesday ended up being a bonus day as I had thought I would be working. It was a cracker of a day. I sat in the garden with S, ate well, relaxed and revelled in not having to race off to a hospital appointment or have saline, glucose and meds shoved into my arm. However, the next door neighbour’s kitten, T, was driving me bonkers.

Psychology – Behavioural Training

I’m chilled out in the sun then out of the corner of my eye, on the garden wall, a flash of white and then another and then a flash of black and white; two paws and a head. A Kilroy moment. Here comes T. He must be dangling down on the other side of the wall, its so cute and funny. I sigh and laugh simultaneously knowing what is coming. I am trying to complete behavioural training with T as he and our cat, Mason, get on well and race around each others’ gardens but T is like a V8 4WD diesel vehicle (a right guzzler); he’s all paws and stomach, bounding around and eating everything in sight.

We like to leave our back door open when we are around. I was trying to enjoy the sun yet train T to stay in the garden and not go into the house (with our neighbour’s permission). The key to any behavioural training is consistency so I told myself I won’t have to do this forever and he’ll get it eventually. I took a deep breath and for the next two hours felt like a yoyo or space ball; up down, up down, up, in out, in out, chase, hiss, “back away from the cat food T”…eventually, though mostly when I WAS looking, he lay down outside, a foot from the door, making a pathetic though cute meowing sound. It could have been a request for Mase to go out to play though frankly, I suspect it was a master manipulator tugging heart strings saying “come on, you love me really, you don’t really mind if I eat you out of house and home”.

Metaphor for Crisis

The up and down with T seemed to be the metaphor for my rollercoaster week. Next thing I know its 3am, I’m awake with an awful thought. It’s always been in my head that we are flying back on the 2nd but I had better check. Sh*t, sh*t and triple sh*t. Yes we fly on the 2nd but we don’t get back in to London until the midday on the 3rd. This can not be happening. The 3rd is a Chemo day and midday does not allow enough time to get blood tests done, consultant review, pharmacy to make up the drug and to get the chemo done. Now what? I scramble around trying to see if the flight can be changed and sure enough it can – if you have a cool £6000. No I don’t think so. I check the site again; hold on, they are still showing as having economy flights back from Calgary as available, albeit for the full price around £900-1000 (a whole flight price again on top of what we have already paid). While not pleasant, it was an option. Si woke and asked me what was going on. I told him and he said “leave it to me”.

Si rang me later saying they can get us back on the 31st for a change fee. I said I can stomach losing one day of our holiday but two is too much; there must be another way and why can’t we get the flight that is showing on the website. Eventually Si gets it sorted and we fly back a day earlier, arriving in time for Chemo the next day. We pay an extra £300 plus for the change instead of £1000 thank goodness though it is for the privilege of flying back economy instead of the premier economy seats we had pre-paid for. I have my first “this is unfair” melt down. Though with the crisis averted I start feeling normal again. I had not been looking forward to saying to Dr L that I’d stuffed up again.

I’d been chatting away to Dr L by email in the evenings and early hours about various little things that needed sorting (who’d of thought an NHS service would include this?) and he pointed out the importance of getting more sleep. Apparently afternoon naps have been proven to “prolong survival”. With the week’s crises thus far overcome, I finally fell into a deep sleep on the couch in front of a random programme, Forensic Detectives (which I secretly like for watching as you don’t have to concentrate; everything is repeated multiple times and it often sends me to sleep).

I wake up with my clever clear and calm possibility renewed and the thought “I have done 4/6 days of Chemo for this month already”. I also wonder if Chemo is tanning me as my bright red cheeks and chest of the morning now looks tanned. Strange, made note to self to ask Dr L about it.

In the mean time, the work start date was still to be confirmed so it looked like Thursday may be free too. Life didn’t wait just because I have cancer or because I was trying to deal with loads of new information and activities; the house insurance renewal turned up, washing still needed doing, bedsheets needed changing…No further crises thankfully.

P.s. S nicknamed my intravenous drip holder C3PO so I gave him some headwear for his trips to the loo…and it kept my scarf clean while in the loo!

Acknowledgements

Images: Stephanie Kemp and with Nurse Amy’s and T’s parent’s permission
© 2017 Janine Hayward www.psychingoutcancer.com. All rights reserved.

Posted in Chemotherapy for Myeloma, Psychology for Cancer Tagged with: Behavioural Training, Cancer, Chemotherapy, Crises and Stress, Cyclophosphamide, Missed Medication, Myeloma, Psychology

Chemo Wk 1 – Part 2 – Piss Taker and Junkie

Medical Update:

FISH test – Myeloma cytogenetic analysis is an examination of the bone marrow cells to look for chromosome abnormalities.  It can be an indicator of likely worse response to treatment and lower life expectancy.

My result:  NORMAL (YIPPEEEEEEE!!!)

More low down:

Who knew cancer could be fun? Yes, it’s a whirlwind and it’s also a completely new project.  I always love the beginning of a project.  It’s the middle bit that’s hardest. Though somehow, I normally always find a way to deliver because non-delivery doesn’t really wash with me.  So, I have a new project: Understanding and Managing Multiple Myeloma.  I’m certainly not bored, there is so much to learn, do, research and action.  Using my brain and academic skills to work out a plan for handling this stuff feels great.  As Chemo continues, I add to my knowledge of how the clinical trial team works, how my Chemo works and how to get what I need from the hospital and hospital teams.

One of the questions that several friends have already asked is “how is Multiple Myeloma different from Leukemia?”.  Watch this space, I’ll do a separate post on this soon!

It’s been a funny old first week of treatment, especially trying to fill a ginormous container with my urine over a twenty-four-hour period and then, because I am not allowed to carry anything heavy, watching Steff literally ‘take the piss’ up to hospital for me!  Good to get rid of that, though urine seems to be a theme for the latter half of the week. I end up having to go to the loo every few minutes and begin to suspect I have a bladder infection. Oh yay.  Then when blood turns up in my urine too, I panic and think sh*t ‘this is not the start I wanted’; I said ‘smooth’ Universe please.  My first week of chemo is meant to be ‘smooth’!!

Thinking about the blood, I start to wonder if I had overdone the Tumeric.  After all, I had gone from barely using the stuff, to shoving it into everything because it is supposedly one of the best things you can do for yourself when fighting cancer.  (I’ll do a separate post re Nutrition later).  The previous day I’d added Tumeric to a green smoothie, drunk two Tumeric Almond Milk lattes and then had more in a curry.  I wasn’t in any pain when peeing, (phew) but the stream of red was rather disconcerting.

Anyway, it turned out Tumeric had nothing to do with it and I had managed to pick up an e-coli bug.  Lovely. Not.  Under instructions, I double my anti-biotic dose.  Still I was strangely relieved that Tumeric wasn’t the culprit.  The new Tumeric Almond lattes were meeting my need for a warm hot drink when out and about.  I have given up coffee and there are only so many mint teas you can drink before feeling like a herb.

I laughed when I got a Whatsapp message from Dad which was signed off ‘Live’ instead of ‘Love’.  Even good old auto text was getting in on this Cancer game.  Found myself singing to myself this morning, in a vaguely Nashville twang…”I’m killing cancer cells and saying sorry to the good cells that have to go with them”.

Discovered that two of my drugs are sitting in Lactose, something I’ve avoided for an age because I have been intolerant since a baby.  If I drink a glass of milk I end up with instant cold, phlegm and other nasties.  I talk to my consultant about alternatives but he’s keen for me to hang in there with them if I can; I resign myself to having a runny nose every day.  I do love some of the other drugs, especially the steroids.  Waking up with energy is such a novel experience for me.

Waiting to go into my second Chemo session, I send an email to a friend about all the great things to do and places to go in Italy near Naples and the Amalfi coast.  Fun reminiscing and good pre-Chemo therapy!

Psychology

I start thinking about the lessons I learnt from when I experienced a road traffic accident (RTA) years earlier (an unlicensed driver drove into me from behind, pinning me from the thigh down under his car while I was on my moped and stopped at a red light).  I had rushed back to work far too soon after the accident and worried about everything else except healing.  I decided that would not be the case this time.  This is the time for self-care, self-compassion, for allowing time to receive treatment and recover from it.  This is also the time to ask for help (another thing I did not do during recovery from the RTA).

Who do I want to be through this Cancer journey?  How might this change as the journey continues, gets harder?  I feel Psyched UP.  I don’t feel like a fighter or like I’m in a battle – I don’t really relate to or like those words.  I feel accepting, practical yet intolerant of anything other than managing this well and giving my body the best chance to overcome this challenge.  I reaffirm I want to be clever, clear and calm through this, for as many days as possible, for as long as I can, because right now that is what feels right.

I pick up the fantastic book Mindfulness for Health: A Practical Guide to Relieving Pain, Reducing Stress and Restoring Wellbeing by Dr. Danny Penman and Vidyamala Burch.  I have often used this successfully when working with my own clients.  I search for great visualisation and meditation tracks on you tube.  I download Headspace, the mindfulness app.

End of week one

A social end to the week.  Catch up with lots of lovelies from my psychology programme and receive an amazing goodie bag including a mermaid blanket!  I manage to go the gym.  Exercise feels good.  I feel good, happy; like a 70s hippy on Quaaludes.  Then I noticed the bruises and tracks on my arm and laugh.  Other gym goers who may have noticed me stretching left right and centre probably think I’m a junkie!

© 2017 Janine Hayward www.psychingoutcancer.com.  All rights reserved.

Posted in Chemotherapy for Myeloma, Psychology for Cancer Tagged with: Blood, Cancer, Chemotherapy, chromosome, cytogenetic, e-Coli, FISH, Mindfulness, Myeloma, Psychology, Tumeric

Chemo Wk 1 – Part 1 – Janine on Johnnies

Format for the update posts:

I plan to stick to a similar format each time for these update posts so you can find your way around easily.  The core aim is to let people know how I’m doing as the treatment for Myeloma unfolds, to talk about key medical milestones, challenges experienced and whether it has been a good or tough week overall. Other aims are to let you know what the experiences have been, how they have felt and how I’ve coped (or not) and the stuff I have done and used to keep going.

I’ll start with Music.  Music that has popped up over the week or that I’ve sought out to keep me going.  This will be followed by the medical update.  Then I’ll share the experiences, realities of the week and hopefully throw in a few funnies and highlights from beyond the cancer world.  Near the end, I’ll highlight the psychological strategies, techniques and psychoeducation I’ve drawn on to help me look after myself, manage what’s happening to me and helped me endeavour to maintain my resilience and psychological flexibility.  I may finish here or follow up on a point made earlier in the post or let you know what’s coming up next.  In between these update posts, I may share shorter posts in response to questions I’ve been asked or key events that warrant their own attention.

I hope this approach works for you.  All feedback is welcome.

So here goes, Chemo week one…

Music: 90s yeah! Rhythm is a Dancer, Snap: I’ve got the Power, Black Box, Music Sounds Better with You. Strike it Up. I Feel Love for the First Time.

Medical Update:

Week one, day one, up early to hospital for blood tests.

Met the fabulous Dr L and Nurse M.

Everyone happy with my blood test results so given green light to go ahead with Chemo.

Myeloma Presence (Baseline from 17^th Feb 17): 17% Plasma Cells, 60-70%infiltration on the trephine (bone marrow test).

Blood summary (for normal levels see picture below):

The low down:

Long and smooth day, started at 7.15 and done by 6pm. So relieved when Chemo could go ahead despite my possible bladder infection and need to pee every 15mins! Quite a juggling act.  Each time a bag of meds was detached I did a mad dash to the loo so I didn’t have to faff around with taking the drip line with me! I’ll explain how the chemo works another time for anyone who’s interested.

I have never been so understanding about someone’s pubes on a toilet seat before (people going through chemo often lose hair) though do wish they’d read the sign and improvise.  That is, wipe with antiseptic after use. Hard to do when no antiseptic wipes were provided and the sign saying to use them is in the wrong place on the back of the door instead of directly ahead of you as you move towards the loo.  This was my main bug bear of the day and I will feedback gently.  Yet the previous person could have used some soap in loo paper and that would have done the job!

This is turning into a lower bits focus. Felt so good after Chemo, Si and I went down to whoop and holler at our netball team (so hard to not play) and then went out to the pub. Fab people, loads of topics and lots of laughs. We found ourselves sharing our contraception irony…on the trial and when on chemo the last thing the medical team want is for a patient to get pregnant (they’d have to come off the trial, couldn’t get the trial meds wanted, big decisions for patient, birth abnormalities likely). So, even though Si and I have not used contraception since 2007 (!), and have only been pregnant twice very briefly (implant difficulties and a whole other blog needed) we now have to use multiple protection; condoms and a diaphragm with spermicide. Hilarious. Ironic. Oh and the trial team make you sign up to this!

Anyway, the discussion in the pub turned to condoms. The debate was on about who should carry them and when.  The males around the table were a firm “NO”, guys should never carry; condoms should always be available at whoever’s place the couple wanting sex end up. I asked “what about spontaneity?” and suggested both parties should carry two condoms. Then F and W pointed out that condoms have inevitably expired and gone manky by the time they are needed and if they are fresh … you wonder how much sex this person is getting?!

Which type to get also sparked a fever: don’t go for those “real life knobbly ones” was the cry – “they’re awful”. Si confessed to being bamboozled by the array of flavours (I thought you’d be so lucky mate!). I laughed about our different purchasing decisions – I’d come home with ‘reals’ and Si had come home with ‘super safe’. Now, he’d never been boring, so I’d clocked that up to him ‘doing the right thing’. The laughs were finally summed up by W saying “yeah, here’s your blog for today, Janine.  You should call it Janine on Johnnies; and podcast it!”

Psychology, two points:

1. When your energy is good I recommend you take all opportunities to be social; they are good for the soul. You may want to set some boundaries around the social time if you are feeling particularly hyper due to the steroid as I imagine talking quickly, jumping around a lot may be a wee bit draining for friends though highly entertaining! Seriously though, good social support is an immense healer and good friends will get that you are still you and some out of character behaviour is the meds.

2. Find your voice. Doctors and nurses are human too. They are wonderfully knowledgeable and yet they don’t know everything (medicine is an ongoing science after all). They don’t know your body and how you and your body are feeling as well as you do.

It is very, totally and always ok to ask any question and share any concerns with medical staff.  If they seem irritated or rushed, stay calm, be kind (they are working very hard, over very long hours and doing the best they can; they have bad days too). Then gently insist on their help to get questions answered and concerns aired and heard.  Even if they don’t know answers then and there, they may go away and come back with an answer and if they don’t come back, ask the next person. You are the expert in your body and feelings. It is your right to take the best care of your body possible.

If you find it hard to ask, consider asking a wonderfully calm yet confident friend to go with you. Make a list of queries and ask your friend to raise them for you, in front of you so you can hear all answers and ask more if needed. For example, ask if there is an alternative to the drug they have given you, if the drug is in a substance like lactose that you don’t get on with well. There may not be a viable alternative but at least you will know you have done the best thing you could to support yourself or there may be a great alternative and you have just helped your body have one less thing to deal with.

Feel free to ask a nurse why he/she isn’t putting gloves on before he/she puts a cannula in your arm. It’s ok. It’s your arm, your immune system you are trying to help. A good nurse will explain that they may have just washed their hands or go and do it again in front of you or put on the gloves (some nurses wash hands rather than wear gloves before inserting needles so that they have more fingertip control over the needle).

Don’t be afraid to chase up whether a test result is back, ask for copies of all results and make it clear whether you want to know a result now (subject to whether your doctors need you to know). For instance, my Chromosome test was taking ages to come back. I thought it had been lost and I would have to do it again (not fun as this would mean an extra bone marrow biopsy). As the result would not change the first round of treatment (but could have a bearing on prognosis and length of life outcome) I asked staff to make sure the test had come back but not to tell me the result at this stage (unless I needed to know for medical reasons). I did this because I really wanted to sit in ‘everything is going to go really well’ and ‘my first round of treatment is going to be a huge success’. I didn’t want a less than favourable result that I didn’t need to know at this time undermining that thought position. I explained this and the staff understood straight away.

Summary

I recommend you be social when you can (though don’t stay longer than you need if tired) and find your voice with your medical and friendship/family support teams or have a good friend be your voice for you, in front of you.

Ending as I began, talking about ‘lower bits’:

Getting hold of the diaphragm was a whole other saga. My consultant team didn’t know how to get one. The GP had to make a phone call and come back to me. After three hours in the sexual health and family planning clinic, the doc said “we really don’t offer these anymore as there are much more effective and easier forms of contraception”.  I said, “I know, I know but I have had to sign up for this”.  After hunting through the stock cupboard, she produced a diaphragm.  I sighed with relief – at least we can have a sex life now!

Well, thinking about it, sex might be classed as a contact sport, which I’ve been banned from doing!  Stuff that!  I’m not going the whole time of treatment, the better part of this year, without making love to my husband!  Bring on the double barriers!!!

Acknowledgements:

Copy Editor: Stephanie Kemp 

Images: Me & Hubby, FreeImages.com

© 2017 Janine Hayward www.psychingoutcancer.com.  All rights reserved.

Posted in Chemotherapy for Myeloma, Psychology for Cancer Tagged with: Cancer, Chemotherapy, Condoms, Contraception, Finding Your Voice, Johnnies, Myeloma, Psychology, Sex, Socialising

Treatment – We need to know NOW.

Most people take more time over choosing a new sofa or hairstyle than I was given to decide on my treatment pathway for Myeloma Cancer.  There was no time to waste; my back vertebrae were in danger of fracturing and causing cord compression so treatment needed to start asap.  I seal my fate within the week, a time frame Dr R and I could live with.  I frantically researched global treatment options versus UK treatment options, NHS versus private care, compared treatment side effects, managed queries in phone calls with Dr R in the evenings, spoke to experts, trawled the internet and discussed pros and cons lists with Hubby.

I had a flash of realisation that no one could make this choice except me.  All the other big choices in life recently had been joint decisions; which house to buy, whether to move to Cambridge, when to move back to London, whether we could afford for me to start a business, whether to get a cat, how each clinical psychology course could work for us if I was offered a place.  Joint decisions, because they impacted both of us.

Yet, here was the decision that could turn both of our lives completely upside down and I ultimately had to make it alone. A decision impacting my health, my body and what I was going to let someone else do to it. What if I chose the wrong thing and I shortened my life unnecessarily?  What if I chose something that turned out to have gruesome side effects for me?  What burden was my choice going to cause for Hubby?  How long will it be before I am in excruciating pain, breaking bones left, right and centre, paralysed or need full time care?

Pause, breath.  I remind myself that survival rates in myeloma are increasing at one of the fastest paces among all cancer types in the UK¹. Pause. Breath.

In the end four things kept zooming around my head:

1. There is some evidence (though better and more research is needed) that people have better outcomes when they participate in clinical trials^2,3.
2. Standard care involves Thalidomide. I know it has improved since the old days but the side effects can still be nasty and I just don’t like the sound of it.
3. The main trial drug Carfilzomib has had great results for people at relapse stage and it and its side kick Cyclophosphamide have been much better tolerated than Thalidomide.
4. I will be monitored like a hawk if I sign up to the trial so reactions and adjustments are likely to be more timely.
5. I can always withdraw if I feel the trial is no longer serving me and move to standard care. I don’t want to withdraw yet I can, if I feel it’s necessary.

You guessed it, in the end I chose the trial.  It’s called CARDAMON and is being overseen by a partnership between University College London (UCL), Cancer Research UK and Amgen Ltd (Pharmaceutical company).  Participant recruitment is taking place at UCL and Kings College Hospital (KCH) and several other UK hospitals.

So, what will be done to my body and its overzealous Myeloma para proteins?

For four months, in one month cycles, I will receive a chemotherapy cocktail of three drugs nicknamed KCD.  KCD comprises of:

Carfilzomib (Kyprolis)^4,5.  This has been used to treat over 4000 myeloma patients world-wide with both relapsed and newly diagnosed myeloma, is licensed for use in the US and approved by the Food and Drug administration (FDA) but is yet to be approved in the UK, hence the trial.  It is a proteasome inhibitor that prevents breakdown of abnormal proteins in cancer cells, causing the cells to die.  It has only rarely been reported to be linked with the side effect of peripheral neuropathy (pins/needles/numbness in extremities) which can be painful and which has been associated with the drug used in standard care, Velcade (Bortezomib).  I will get Carfilzomib by intravenous infusion, through a cannula in my vein on 6 days out of the month.  Doesn’t sound so bad…

Cyclophosphamide (Cyclo)⁶.   This drug belongs to a group of drugs called alkylating agents. It works by sticking to one of the cancer cell’s DNA strands. DNA is the genetic code that is in the heart of all animal and plant cells. It controls everything the cell does. The cell cannot then divide into 2 new cells.  I will get Cyclo orally by tablets on 3 days out of the month.  Doesn’t sound so bad…

Dexamethasone (Dex)⁷.  This is a strong steroid that can suppress inflammation and the immune response, kills cancer cells and usually induces a better response to the other chemotherapy drugs than when chemotherapy is used alone.  I will get Dex orally by tablets on 4 days out of the month.  Doesn’t sound so bad…

After three weeks in the month of going into hospital every Monday and Tuesday for the above, I get a week off the KCD and don’t have to go to hospital.

I do though have to take a bunch of other meds too, one to protect my kidneys, another to prevent/manage nausea, another to stop a virus outbreak, an antibiotic to prevent infection.  These continue during the non-chemo, no-hospital week.

I’ll also start another drug called Zometa⁸, a biophosphanate with good evidence that it reduces bone loss, fractures and helps to build bones. I will get Zometa by intravenous infusion, through a cannula in my vein on the same day as getting Carfilzomib I think.  I’m yet to understand how often this happens.

After four months, my response to the Chemo will be assessed and if my Myeloma para protein level has dropped by 50% or more, the Chemo will be considered a success.

I will then be scheduled for a heavy-duty med to induce stem cell production ahead of stem cell collection.

After recovering from the stem cell harvest, I will then be randomised to either the;

• branch of the trial that receives an autologous stem cell transplant (ASCT; meaning using my own harvested cells) in the same way I would have received one if I had chosen standard care or
• I will go into the branch that receives a further four months of the KCD cocktail

After this, participants in both branches of the trial receive maintenance medication.

So, what is hoped for from all this medication?  Short term, the hope is that the standard care response of a minimum of a three-year remission is achieved and for the patients in the continued KCD arm that this remission period is achieved without having to undergo an invasive stem cell transplant.  Longer term, the aim is that the treatments, even within the three years of my own remission, will have moved on so quickly (there are already exciting drugs coming down the line in trials) that Myeloma moves from an incurable illness to a chronic illness. A stem cell transplant would then become the final defense at the later stages of the illness.

If this all a lot to take in, I get it.  I thought so too and I’m still getting my head around it all.  There is a massive new language set that goes with moving in this world of cancer and Myeloma.

Have I done the right thing?  I hope so.  I feel that I have, with the research and time in which I had to make the decision.  Psychological cognitive science theory purports that usually you will choose your choice.  It is called choice–supportive bias or post-purchase rationalization⁹.  It is the tendency to retroactively ascribe positive attributes to an option one has selected and it’s a cognitive bias.  Therefore, I am highly likely to have a cognitive bias about my decision to choose the trial because not to do so would undermine my choice…and make it much harder to believe the trial treatment will be successful.  I usually try to avoid or at least be cognisant to my own biases.  In this case, I fully own and embrace my bias about my decision to go with CARDAMON.  BRING IT ON!

Acknowledgements and References:

¹Myeloma UK. www.myelomauk.org

² https://academic.oup.com/annonc/article/22/Suppl_7/vii10/214151/How-may-clinical-research-improve-healthcare

³ https://academic.oup.com/annonc/article/22/Suppl_7/vii2/214043/The-impact-of-the-process-of-clinical-research-on

⁴ CARDAMON Patient Information Sheet; Kings College Hospital; version 4.0; 07Nov16

⁵ https://www.themmrf.org/multiple-myeloma-knowledge-center/myeloma-drugs-guide/kyprolis/

⁶ http://www.myelomabeacon.com/resources/2008/10/15/cyclophosphamide/

⁷ http://www.myelomabeacon.com/resources/2008/10/15/dexamethasone/

⁸ http://www.myelomabeacon.com/news/2010/06/22/zometa-increases-overall-survival-and-slows-bone-disease-in-multiple-myeloma-patients-asco-2010/

⁹ http://changingminds.org/explanations/theories/choice-supportive_bias.htm

Copy Editor: Stephanie Kemp

Image: Photo by Angelo Pantazis on Unsplash

© 2017 Janine Hayward www.psychingoutcancer.com.  All rights reserved.

Posted in Chemotherapy for Myeloma, Psychology for Cancer Tagged with: Cancer, Carfilzomib, Chemotherapy, Choice Supportive Bias, Chronic Illness, Clinical Trial, Cognitive Bias, Cyclophosphamide, Dexamethazone, KCD, Myeloma, Para Protein, Post-Purchase Rationalisation, Response to Chemotherapy, Stem Cell Harvest, Stem Cell Transplant, Survival Rates, Treatment, Treatment options, Zometa

Diagnosis and Baby N

Oh sh*t, what if our new nephew, baby N arrives on the same day I get diagnosed?  Hubby and I agreed that would be awful!  My follow up appointment was booked for Friday 10th Feb and we willed the Universe that our Sister-in-law gave birth before then or after then.  Any day EXCEPT diagnosis day!

Second Consultation

It wasn’t Dr K this time which surprised me.  Instead Dr R calmly, again in a matter of fact way, confirmed I had Myeloma.  He explained it is incurable yet treatable.  I knew from experience that most people do not hear much of the consultation once they have a diagnosis confirmed.  Dr R reassured me it was fine to record our conversation and that we would have this conversation a number of times over the next week while I got my head around everything and asked any questions I may have.  Specialist Nurse D with the lovely reassuring smile was present also and he was going to be my point of contact throughout.  It was nice to meet him straight away.  I remember thinking I need to be a strong clear voice for myself without becoming someone nasty or someone I don’t recognise.

Dr R asked me about pain and I struggled to answer, I’ve lived with minor aches, pains and niggles for so long I can’t distinguish when, how long and how bad.  I couldn’t think more clearly about this until we were out of the appointment… and remembered I haven’t been able to sleep on my left hand side for ages, one to two years Hubby reckoned, I didn’t realise it was that long.   Dr R seemed to expect me to be in more pain as he explained the BM biopsy and pet scan confirmed that there is evidence of bone marrow damage in my left shoulder (ha- my creaking and clicking it that annoyed you so much Hubby!!!), my sternum, my middle back T7 and lower back L5 vertebrae.  L5 is the bit Dr B is most worried about – if it deteriorates it can damage my spinal cord (oh yay!). It’s not enough to have sucky cancer,  I have to have the risk of paralysis too.  Lovely.  So nice for Hubby.  Didn’t I read somewhere sarcasm is linked to intelligence? Then I am effing intelligent! However there are things to celebrate – my lungs and kidneys are not showing any damage and my anaemia was only slight.  All of these can be bad with this condition though most people are twenty years older when they get diagnosed.

Dr R wants me to start treatment asap to get the spinal damage under control which could apparently happen as early as tomorrow (!) so chemo here I come.  Treatment choices were either standard care (one set of drugs) or the clinical trial CARDAMON (another set of drugs).  I pushed Dr R for a prognosis, I’m quality over quantity kind of gal so wanted to know how much quality I could expect, hope for and create.  I heard him say first line care usually buys 3 years (gulp) of remission before relapse and then there are more sequences of drug treatments that buy more (though less than the first) remission time.  If treatment is successful I can live for another 8-10 years.  SO PRETTY SHIT REALLY.  In fact, the median shown in current evidenced based research is 7 years. I asked to be referred to a psychology-oncologist (thinking man I am going need one, not right now but sometime in the future when I feel less chilled about all of this) and he said yes straight away and that there were two working closely with their team.

Support and Due Diligence

I didn’t really react to the prognosis, I still felt strangely calm.  Not in denial. Just in the practical project manager zone of doing what needs to be done.  Went to Macmillan (awesome charity supporting people living with cancer) at KCH afterwards. I’m so grateful for my little bit of knowledge of this field.  I knew of Maggies, drop in centres for people with cancer, their families and those effected by the big C because as an assistant psychologist I had helped lead Mindfulness courses for people in remission (another irony?) and I have raised money for Macmillan in the past.  I knew there would be calm, info and friendly people there.  T was exactly that and very helpful.  I tried on a blond wig for kicks but Hubby wasn’t impressed!  I’ve also been talking about money all day – it’s weird but seems to be my fixation – worried about how we are going to get money for stuff…(covering my no income while I’m on Chemo, drug costs if wanting something NHS doesn’t offer, the eventual palliative care costs).  Anyway that’s a whole other post.

Spent my birthday and Valentine’s day doing the due diligence of getting second opinions and care options in the private sector.  Hubby was fantastic.  I’d google the care centres and he’d call them asking for an urgent appointment.  He was so awesome because he’d say what their attitude was like on the phone and not just the practicalities; we  dismissed some clinics very quickly! The one that was the best responder was the one I knew about already.  A friend J had been there for her breast cancer treatment and was positive about the experience.  It felt so containing that they had been amazing on the phone and had offered an appointment on Monday morning.  Felt even better when Nurse L emailed to confirm straight away and emailed me back later at 8.30pm (on a Friday)!! Not only saying the test results is sent we’re perfect for their needs but saying that she hoped I had enough pain management.  Awesome service which continued in the consultation where they endorsed the treatment options offered by KCH and offered another to be tried later.  They welcomed my staying in contact and asking any questions as needed. Which I have done and so far no charge has arisen other than for the initial meeting.  Safe hands me thinks.

J  said all the right things and was beyond supportive. I am intensely grateful to her especially when at this point I need help to make decisions and was yet to let my friends and family know.  I was on such a clock for a decision which I wanted to share with them and needed to keep my head clear while I made them which may not have been possible once speaking to all the others that I love.

We had champagne to celebrate catching the Cancer and the parts of me it hadn’t got to yet.  Watched a star trek movie, fell asleep during it exhausted and finally went to bed at 1am.

Hubby was very sad, teary, upset, practical, awesome awesome loving and awesome. We are talking about who to tell and when, working it all out. He said such a sweet sweet thing to me, It is unfair, ’You’re one of the kindest people I know’…I cried.

Baby N

Fortunately the Universe is simply amazing and Baby N arrived on the 9th Feb and we went to see family and Noah on Sunday 12th.  My father-in-law (very astute and I love him to bits) mentioned to his wife on their way home that something didn’t quite seem right about Hubby and I though they didn’t think it was about our past difficulties with having our own family.  He was on the money of course, as we had just spent two days away from home in a hotel trying to process the prognosis, pouring over all the Myeloma literature we had been given and wrapping our heads around treatment options.  Decisions were needed, fast.  I remember holding Baby N, thinking he was utterly adorable and that my Sis-in-Law was beautiful and amazing.  I also remember thinking my hands have been aching badly all day, I’m holding him very stiffly, god I hope I don’t drop him.  I need to hand him over but I can’t yet, a little while longer.  One dying young, one amazing arrival.  Cycle of life.  These were thoughts in my head.  I look back on the photos from that day and Hubby and I look happy yet extraordinarily tired.  We were so glad that we went though, met everyone and shared that fabulous moment.

Diagnosis

So unequivocally, I am now a person living with active (symptomatic) IgG Kappa Multiple Myeloma and produce an abnormal para protein which is normally there but has managed to over excite itself, not die when it should and has now bullied all the other cells out of the place.  I have damage throughout my bone including one to my spine that KCH are concerned about and one to my sternum that the private centre is particularly concerned about.  Urgent treatment is required so I don’t end up with breathing problems (sternum) or spinal cord compression, paralysis and frankly even earlier DEATH.

I found myself writing letters to friends based overseas in my head, saying ’Don’t come to the funeral, it’s such a long way….’

Acknowledgements:

Copy Editor: Stephanie Kemp

Image: Photo by DAVIDCOHEN on Unsplash

© 2017 Janine Hayward www.psychingoutcancer.com.  All rights reserved.

Posted in Diagnosis Tagged with: Anaemia, Blood Cancer, Bone Cancer, Bone Marrow Biopsy, Cancer, CARDAMON, Chemotherapy, Chronic Illness, Clinical Trial, IgG Kappa, Incurable, L5, Myeloma, Para Protein, Private Cancer Care, Prognosis, Relapse, Second Opinion, Spinal Cord Compression, Sternum, Survival Rates, T7, Wig