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Oh sh*t, what if our new nephew, baby N arrives on the same day I get diagnosed? Simon 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 Si 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 Si!!!), 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 Si. 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 Si 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. Si 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.
Si 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 Simon 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 Simon 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
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