What a year! I turned 48, I was diagnosed with cancer and I’ve completed 48 chemo sessions. I love the number 48; it seems so symmetrical to me (I love a bit of symmetry). Now ‘48’ has a WHOLE new world of associations!
Warning…I have happy news, and, I’m going to talk about toilet rituals.
First, the rituals.
This may seem very strange to those of you who have always been super careful about hygiene when using public loos. In my defence, I have rarely worried about these things because my childhood in New Zealand was filled with non-traditional toilet arrangements. When you are fortunate enough to spend all day at the beach or walking in the bush or driving long stretches of deserted road or camping in remote sites you tend to get over yourself quite quickly about going to the loo wherever and however.
Doing your business quickly behind a tree, rock, or in a smelly long drop with minimal paper or alternatively leaves or seaweed, is not that unusual. Worrying about being seen was always a bit more bothersome than worrying about bugs, microbes or possible infections! The upshot is; I have never worried about using public loos, ‘catching anything’ or having to use disinfectant. I just focussed on washing my hands well.
Now that my immune system is compromised it’s another story completely….though maybe I’m being a bit anal? (pun intended)
In the Chemo Day Unit, patients are asked to ‘wipe the loo’ with anti-bacterial wipes before and after use. I recently discovered I had developed a wee ritual…Take a wipe, clean toilet seat, fold dirty side in, use clean side to wipe toilet handle, tap, hand wash dispenser, door lock, door handle. Dispose of wipe in bin. Use loo. Wash and dry hands properly – you know the 8-10 step process (depending on the poster). Take new wipe and clean toilet. Goodness knows what bugs I could pick up if I didn’t do this; don’t tell me!
Anyway, this is a new ritual in my life and once again one that seems to consume a little more of my available time and life though hopefully is worth it. It seems so, so far, as I have yet to pick up any major nasties despite lower immunity and chemotherapy for 9 months now. This ritual has now made its way out of the hospital and into public conveniences. AM I being anal? I’ll let you be the judge!
…is happy, positive and hope-FULL…I’m very grateful for it and its effect; a reaffirmation of my faith in my medical team, the drugs and my health and life choices. The Myeloma presence in my body has decreased further in the last few months… It’s down to 1 g/l (42 g/l at its peak) and a may be yet to plateau. Yee ha! Not only that, the serum kappa light chain results are 1.75 mg/l, backing up this great news and described as ‘excellent’ by Dr L. On top of that my liver is doing well. My Hb (Haemoglobin, the protein found in the red blood cells that carries oxygen around) level is back up to 121 g/l so I no longer need to consider taking EPO (yes, the cheaty cyclists’ drug of choice! I’m a tad disappointed. I had wanted to experience how energised I’d feel!) While 121 g/l is lower than the desired normal levels (125 g/l plus) it is great for someone with Myeloma. My kidneys are also doing OK for someone with Myeloma, my Creatinine is 69 umol/L and normal level for women is approx. 45 -90 umol/L (I think; there seems to be some debate!). Lots of good, great news, here. Dr L delivered these details and then reminded me to keep drinking 2-3 litres of water today for kidney care. I imagined my kidneys; bloated, water-logged, bean-shaped balloons, wrapped up in clouds of cotton wool, floating about, relaxed and without a worry in the world.
I’ve had yet another bone marrow biopsy and pet scan (what effect does three doses of radioactive sugar chasing gunk in a year have on one’s body? I guess I’ll find out!). I have an ear numbing full body MRI coming up in a fortnight.
Let’s hope they show (or don’t show lesions at all) that lesions are further dissolved and there are no new uninvited guests!!
What a year.
One number I’ll never forget.
Images: Me (graphs va KCH), Long Drop – Sarang (public domain use permission granted)
© 2017 Janine Hayward www.psychingoutcancer.com. All rights reserved.
Posted in Chemotherapy for Myeloma, Myeloma Treatment, Results Tagged with: Bone Marrow Biopsy, Chemotherapy, Myeloma, Results, Tests, Treatment
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!
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.
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.
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….’
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
The last ten days have been a whirlwind of hospital appointments, even on a Sunday (and people moan about the NHS!). A bone marrow biopsy, a comedic event with four people in a tiny room, a lot of over-heating, Simon nearly fainting, the student nurse almost fainting, the blood aspiration having to be done twice, my counting the stitches on Si’s jeans around his crotch as that was where my eye line was and I needed a distraction from the drilling going on in my hip, the word ‘bitch’ slipping out accidentally and the nurse laughing her head off, her having to put her leg up and brace to get enough traction as I pulled against her to get a tiny piece of bone and some bone marrow out of me. Phew. All exhausted but amused. I was pleased that was done. Yes, it was painful but not too bad. I’m not going to volunteer for one every week.
Then a pet scan where I willingly allowed a stranger to inject me with radioactive glucose, so radioactive that they suggest you don’t go near pregnant women or children for 6-8 hours. I LET THEM DO THAT! Anyway, you wait for an hour, you’re not allowed to do anything, even read a book as every muscle movement attracts the glucose. The point of the pet scan is that the glucose settles where the most bone damage is and then shows up in the scanner. I wondered what the grandmother on the tube thought later that day when I sat down next to her on the tube, opposite her daughter who was bouncing a toddler on her knee – then I remembered and quickly moved away. She caught my eye, seemingly wondering why I had moved to stand when there were so many empty seats. I don’t think she needed to hear ‘Hey, I’m radioactive!’ It’s ironic after all the years that Simon worked on a Nuclear Power Plant site and had to wear a full protective suit down to pink knickers when he went near the remaining radioactive rods and waste – I’m the one that is essentially poisoned with the stuff! Still all in a good cause and the Pet Scan was nothing compared to the MRI.
Next up for my sins on a Sunday, a full spine and head MRI and then a full body MRI. Man alive, those things are loud, even the music through headphones had minimal effect and it stopped at times. Need to remember to take my own ear plugs next time to wear as well. Hopefully (or I’ll ask) the music and noise will be turned off when the staff need to speak with me. Seriously though it was like having an angle grinder and a jackhammer going full tilt inside your head for 30 minutes plus. Not pleasant and almost unbearable. Come on amazing medical scientists; you’re clever enough to design better and better MRIs now make them silent please!!
The ECG and Echocardiogram looking at my heart were much tamer affairs. I was in and out within 15 minutes with no more than cold patches with electronic nodes in them attached to my chest and cold Ultra Sound gel there too. So, all good. The results too. Nothing wrong with my ticker.
Over the 10 days of tests I met up and spoke with friends. It was so hard not to say anything. One of my values is to be open and honest, so much so, that I probably provide ‘too much information at times’. This though, felt like ‘an elephant in the room’. I felt like I was lying and to relieve the feeling on two occasions I mentioned I was helping a friend with cancer at the moment. That friend was ME! It was strange when they asked how my friend was feeling yet strangely helpful too because I could answer truthfully. Being a friend to myself is an image I like and will try to remember and come back to as this journey zooms along. I don’t want to burden my friends yet if the shoe was on the other foot I would hope my friends would tell me, and let me know how I might help. I still hope that even when they will know I have my own big stuff going on. Unsurprisingly, friends responded brilliantly when I did find the courage to let others know. More about that in another post.
Next step – second consultation and understanding what these tests were saying. I resolved to channel my long-term possibility of being clever, clear and calm as we went in to hear the diagnosis.
Illustrations: Sapphire Weerakone
© 2017 Janine Hayward www.psychingoutcancer.com. All rights reserved.
Posted in Pre Diagnosis Tagged with: Blood Cancer, Bone Cancer, Bone Marrow Biopsy, ECG, Echocardiagram, MRI, Myeloma, Pet Scan, Radioactive