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.

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About Jet Black

I began blogging because having been diagnosed with Multiple Myeloma, I wanted to share my experiences of living with an incurable cancer. Through blogging, I discovered that I enjoy writing. I have always chosen to live life for the journey, more than the destination. This is as true for the act of writing as it is for living with myeloma, so these are two things I do: I live and I write!
This entry was posted in * Myeloma, Emotional health and tagged , , , , , , , , , , . Bookmark the permalink.

15 Responses to Devastated!

  1. Lorna says:

    WTF! I am so very sorry to read your terrible news. I know it sounds so bloody hollow, but I don’t have the words to express how I feel, how we both feel, when we read about another relapse after such a very short time. Not fair just doesn’t cover it.

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  2. Jet, you know I am devastated for you and it seems so unfair that you seem to have relapsed after such a short time. Hopefully you will be able to carry on with activities or at least the ones that are important to you whilst on treatment without too many side effects.

    Lots of love

    Wendy

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  3. Mal Dexter says:

    so sorry. sending you lots of love and light xx

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  4. Natasha says:

    Big Hug!!! Denk aan je!

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  5. Snip says:

    “Devastated” must be exactly the right word for it… I am feeling that way myself reading your post. Particularly given that I am at the front end of ‘remission’ myself (they still need to fully confirm that, but the biopsy came back with ‘normal’ plasma levels). The big fear for me, just as it was for you and is now being confirmed, is that I don’t get the 6 years I am hoping for…

    So very sorry to read the above, Jet. But: they have lots of options. Keep the faith… your fight isn’t over. Sad that the fight has to continue currently, for sure, but nonetheless, stay positive. It’s your biggest weapon against this a-hole cancer…

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  6. Mavis Nevill says:

    HI Jet

    It feels so cruel that you got this devastating news just when you have were embracing a changed future so positively. Please, please don’t give up hope of a future to enjoy. You are not at the end of the road, just at the beginning of a different one. I know you will continue to show the courage you have got through these past months with and I know you have good friends to walk it with you.

    Rooting for you. Much love. Mavis x

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  7. Keep fighting Jet. You have more in you to give to this godawful struggle. Your humanity shines on and on and I have absolute faith in your continued determination to LIVE through this. Please trust me when I say that I have an understanding of the complete disbelief and outrage. This feel futile writing on here. I need to SEE you. R x

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    • Thanks Rhiannon
      I know you’re going through very similar stuff too, so I know you know all about how it feels. Not quite sure where you’re up to with your treatment, but if you’d like to meet up halfway again, visit me here, or I can come to Leeds, let’s arrange a date. Text or email me. I’m thinking of you too. x

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  8. magnumlady says:

    Aw Jet, I’m sorry. Thinking of you x

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  9. Jet I am so sorry that you are going through this. Unfortunately, I know what you are going through. For me, it’s the feeling of disappointment, frustration, sadness, anger. We were told that a transplant was the best option for us and that we would probably get years out of it and here we are, less than a year post-transplant and bam! Relapse. It sucks royally! We’re told it might or might not work, might or might not last, but when this happens, it doesn’t make it easier to accept. In fact, “accepting” is not a point I’m at right now.

    Sorry girl! Hopefully there are more options but it sucks to be going through this.

    Big virtual hug!

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    • Thanks MC. I know that you know all about this and now with a definite possibility of an allo transplant on my horizon, I’m much more aware of your journey. I may have to go back and read through some posts again. I so appreciate what you’ve shared and pleased to know you’re following my journey too. Wishing us both good responses to whatever else they decide to try on us, eh? Big hug back at you. x

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  10. Meg Williams says:

    Oh Jet……….I don’t know what to say. How utterly devastating for you, it seems it must be unbearable. But I know that somehow you will bear it. This news has really, really upset me. It’s silly because I don’t know you that well but I can’t stop crying! I think it’s because I understand your disappointment in that my own illness has progressed far faster than is usual and it feels very unfair. So what happens for you now, will you go through the whole process again? Will you be able to carry on with your teaching?
    I’m sorry for not keeping up with your Blog but I stupidly thought you’d stopped doing it, as I hadn’t seen any reference to it on facebook….it used to come up as a highlighted link. I will keep up with it from now on. Lots and lots of love to you Jet. XXX

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    • Hi Meg

      Thank you for sharing so honestly how my story is affecting you. I’m sorry it’s making you cry, but I figure it’s ok to be sad, angry, scared about all this. I hope you never stop having your feelings. I often cry when I read other people’s blogs Like you, it’s when their story stirs up feelings about my own journey, but it also feels good to know I’m not alone. I’m so sorry to hear that your illness is progressing quicker than usual.

      As for the blog, the link is still coming up on FB, so maybe you just missed it. I didn’t post much during the last few months. If you want to subscribe, you’ll get an email each time I post a new update. I’ll be writing about what next, so don’t want to include a ‘spoiler’ here. Just watch this space! x

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  11. Colin and Barbara says:

    Sorry to hear your awful news .
    Your constantly in our thoughts,
    Lots of love,
    Barbara and Colin

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  12. Catriona Yule. says:

    That is just so shit Jet, so pissed off to hear your news. Cant think of anything i can say that dosent sound trite; but you aint finished yet girl!

    Like

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