Devastated!

Tuesday morning rolled in with a new, faint sense of excitement as finally I was going to my first counselling appointment with Mandy at the Maggies Centre that morning, and that afternoon I would be starting a PTLLS course (Preparing to Teach in the Lifelong Learning Sector) at a local college.

Already partway through January, I was feeling frustrated still not to have heard anything from Maggies, so the previous Monday I’d called them. I spoke to Mandy, the psychologist and centre manager, who said that she didn’t have any contact details for me. More frustration… I had given them my details when I attended the community opening back in November. I’d watched while Kate wrote my details on a contact card and made a note that I wanted counselling ASAP, I’d called in a couple of times and been told they weren’t ready yet, so I had been waiting respectfully but with growing need for them to contact me. It’s a good job I called or I’d still be waiting. Anyway, we made an appointment for this Tuesday.

To get on the PTLLS course, I had to produce proof of literacy at level 2 (equivalent to a GCSE or ‘O’ level). Over 34 years ago I gained an English Language ‘O’ level but somewhere in that time, I lost the certificate. The college refused to take my word for it and insisted on seeing a valid certificate. So, during the previous week, I had been phoning and running around to various colleges and training providers in Nottingham without much success. Eventually on Monday though, I managed to take an online test (at a cost of £25) and passed with 95%. I took care with the precious results paper, which would be acceptable proof until the actual certificate arrives.

I decided to take the PTLLS course as it seems a useful way to update and gain a qualification in skills I already have and enjoy using. Having limited energy, I thought that when I do start to consider working again, the idea of delivering training on a sessional basis, rather than full-time, might be quite a good option.

Prior to the counselling appointment, I called in to the Haematology unit to collect my prescription from the day before. When I first arrived, I called Sarah, the specialist nurse to find out where the drugs should be waiting. She said to go to Daycase, where surprise, surprise… the drugs had yet again not come down. This is the third time they’ve told me I could collect the drugs from the unit and they’ve not been there. The system is really not working and of course, I complained. But I didn’t have time then to go up to Pharmacy so I decided to come back later.

My session with Mandy went well, if rather briefly – I only had enough time to tell her about the background and lead-up to diagnosis… the fatigue, back aches, loss of appetite, driving up and back to Liverpool to care for my mother the previous summer, the illness over Christmas, the blood tests, the diagnosis of kidney failure and subsequent hospital admittance and further tests, etc. I hadn’t even started on the shock of diagnosis, telling my family I have cancer, the treatment, side effects, feelings, the weight loss and hair loss, the friends who have surprisingly shown up for me and those who’ve badly let me down, the ordeal of the transplant and more recent depression, the “what to do with my life now?”, how to live with the uncertainty and anxiety, not to mention other things I’m not even aware that I want to speak about yet.

I’d forgotten to turn off my phone, so when Sarah called during the session, I took the call. She asked if I’d managed to pick up the drugs and I told her they’d not been there and I’d have to get them later. She offered to fetch them for me, but I said there was no need, I’d get them myself. We said goodbye, I put my phone on silent and continued talking to Mandy.

Once the counselling session was over, we made another appointment for next week and I dashed off to college for the first day of my new course, forgetting about but also not having time to collect my drugs.

I enjoyed the first class… a lively, inspiring tutor; friendly and enthusiastic fellow students; well-prepared and impressive IT used in teaching methods and materials. It felt good to be out in the world again and using my brain. I left feeling excited about the forthcoming nine weeks and beginning to think about future possibilities, maybe continuing on to take the one year Certificate course?

I found myself thinking that, in my new, altered self, I could maybe approach studying with a different attitude to that of my previous life. You see, there’s my life before cancer, there’s the blurry bit of treatment in the middle and then there’s this newly emerged me, post-stem cell transplant – irrevocably changed. Although I like learning, I’ve never enjoyed studying, particularly writing assignments. But now I sensed a flicker of possibility… maybe I could enjoy writing…? Perhaps writing this blog and the resultant positive comments have helped me feel more enthusiastic.

I had to go down to Reception to complete the enrolment process and while I was waiting, I checked my silent phone. Two missed calls and a voicemail message from Sarah. She needed to speak to me quite urgently. I began to feel concerned but needed to wait till I’d finished there and returned to my car to call her back. I didn’t really have time or head space to consider why she was calling. Actually, to quell the slight anxiety that was looming, I think I had a flippant thought about her calling to tell me I’d failed the pregnancy test – another immaculate conception!

So, I’m sitting in my car, in the college car park, hearing Sarah reluctantly telling me that the blood results (the ones she’d had to chase up yesterday) showed an increase in the kappa free light chains from 7.48 in September to 73.2 in December. That’s a 10x increase! She didn’t like giving this news over the phone. She was so sorry.

I was devastated. I am devastated. I couldn’t continue the conversation, I was distraught, in tears. I just had to get home, six miles through rush hour traffic on the ring road, furious at every car and traffic light in my way, already grieving for the loss of the new life I’d only just begun to anticipate, desperate to get home, share it with my friend, crying and wanting to howl, “it’s not fair!”

Much of the next day and night I cried on and off. Now I am a little calmer, only bursting into tears at odd moments during the day. I still had to tell my mum, which is one of the hardest things to do – almost as hard as telling her the initial diagnosis – and then the rest of my family too.

Simply put, in September the cancer was in complete remission but it has now relapsed. As the stem cell transplant was less than a year ago, they consider it to have failed. This means that the first line of remission has gone… I didn’t get the 15 years that Prof had dangled before me as a possibility, I didn’t even get 15 months, I barely got 5 months.

My life will be even shorter than I might have expected. I haven’t really got my head around that yet. I hadn’t truly believed I would get 15 years of remission, but I certainly didn’t consider anything as short as this. I imagined it would be somewhere between one and fifteen years. I hadn’t reached the point of getting anxious about consultant appointments. I was in remission! In fact I was just beginning to get my head around the idea that I might have quite some time to live, after all the shock and fears and nasty treatment of this past year, even while I knew the threat of relapse was always hanging in the air.

As a friend pointed out, getting news of a relapse is a bit like being diagnosed all over again – shock, sadness, grief, fear, anger, feeling it’s not fair. Actually, possibly due to the steroids I had to take within hours of the diagnosis, I don’t think I had some of those feelings at the beginning – shock yes, but I don’t think I felt it wasn’t fair. Now it feels really unfair.

The reason I’ve written in so much detail about the activities of the previous week and the early part of the day, the same reason I entitled my last update ‘Glimmers of Hope’ is to show how particularly cruel and unfair it feels to have received this news now… just as I was beginning to tentatively reach out and start planning, hoping and participating in life again. It feels as though I’d pushed out tender pale green shoots from the dark, cold winter earth into pale sunlight, only to have a giant foot step down and crush them.

Sarah asked me to come in for another bone marrow biopsy on Thursday and to return to clinic next Monday to discuss the next treatment options.

The next day, I called to ask whether I needed to collect and take the forgotten Revlimid. I can’t even recall whether I spoke to Sarah or Jenny. Whoever I spoke to said not to worry – it wasn’t worth coming in again this week – that would make it four days in a row. If the doctors want me to continue taking Revlimid, missing a few days won’t be a problem, so I can collect the drugs on Monday if necessary.

At some point in the conversation, they confirmed that the kappa:lambda ratio had been 1.2 (within the normal range) and was now 2.9. The normal range is between 0.26 and 2.0. It seems so shocking that the levels have shot up so quickly in such a short space of time.

On Thursday, my friend accompanied me to see Amy, a registrar I’d not met before. Amy carried out my fourth bone marrow biopsy with great care, skill and kindness – it was one of the least unpleasant, but nonetheless painful. Like the very first biopsy in February last year, it wasn’t just an aspiration, she also took a piece of marrow, which would be sent off for analysis, the results of which won’t come back for a couple of weeks.

On Thursdays, Jenny works as a clinical nurse in Daycase to maintain her practice. When she saw me, she came straight up to me and gave me a warm hug. I’d been quite together till that point but that made me cry again.

I don’t know if they get additional information from a biopsy, or if it just confirms the blood results, but I shall ask. I imagine it’s required for the trial if nothing else. They will only have the results from the aspiration on Monday, but that must be sufficient to confirm the relapse. From what Jenny said they were considering, I think it’s unlikely they’ll want me to continue on Revlimid, but I’ll write more about the proposed treatment after I’ve seen Dr Williams again.