You go girl! That’s amazing! 
you are doing so well and being so strong! Hey, age is just a number right!!
yes Monday seems to be the dip day, a bit better today, so I’m definitely going to have to plan some Monday nicenesss x hope all goes well today for you x
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You’re lovely BB 
- I’ve had to be strong since I was a child, my inner strength is not ever something I question - but what is new for me is social anxiety. I really had to push myself through the shakes to go to that class. I tried to explain it to my friend of 40 years and just got the ‘you’ll be ok, you’re stronger than you think’. After all the times I’ve helped her through multiple mental health crises it felt like such a brush off. I wanted to talk it through, what was making me anxious and try and process it with someone. Love her dearly, but I think she is struggling with all of this too and doesn’t know how to deal with the temporary role reversal. I have to realise that the people you want the support from aren’t always the ones equipped to give it to you, and that’s ok, you just need to find who is. Anyway the reason I mention this is that yesterday at the hospital I had a couple of hours in between bloods and consultant - parking had been such a nightmare I didn’t dare go for the walk on the seafront I had planned (oh yes, and flooding and awful rain!), so I went into the macmillan centre at the hospital. I had a really helpful conversation about the new anxiety I was experiencing and it’s really helped me with some thinking to try and mitigate it. I find face to face conversation so important (all the body language and expressions that you miss on the phone) that it was just what I needed. I know you were thinking of patient transport next time so you’ll likely have some spare time, maybe this could be a good route for you? Hope you’re having a good day lovely xx
Oh star 
that can feel so depleting! I’m sorry you are feeling socially anxious, that’s really not nice, my daughter suffers with this, has done for years, and as she lives over an hour away, I have to hold her hand through the phone sometimes, to help get her through, I’m glad speaking to someone has helped a little, I was going to pop into our maggies next time I’m in, but I honestly don’t know where to start, and I feel sorry for the person listening 
I don’t actually think they can help? I’m more health anxious now, I’m worried if I get a clot, or a cut or in an accident what to do, because if all the meds, carrying the cancer alert card and blood thinners card is just so alien to me, everything I’m checking is weird as was only doing all of it for the last 5 years with dad so all just seems alien to me and as though I’ve aged and will now be forever patient and highly vigilant, I can’t switch off at all, you are very understanding of your friend 
telling my kids in 2 weeks, it’ll be half term, they can come and go as they please and hopefully I can reassure them, I truly don’t want to burden them, but mind (racing) is thinking , if something goes wrong during induction, they need to know before that 
will you go back for more chats? I really don’t know how that side of things work x I hope your consultant visit went well and you got some answers x
I would go back for sure, if I needed to. I also had a session with my exec coach who gave me a useful strategy. Think of your personal board of directors - who you go to for advice on all aspects of your life, basically these people or places serve you in achieving your goals. She told me mine needs a refresh! I should be thinking of the key areas/skills I need to access so the clinical team, someone knowledgeable about food and nutrition (my calcium is too low to start the zometa 
), this group as a source of support and information etc. My physio, something that provides emotional sanctuary or spiritual well being etc. All too often we have our go to people who aren’t equipped and that’s exhausting for all concerned.
In terms of not knowing where to start, I don’t think you need a plan. Just let it flow and brain dump - they’ll help you structure and organise your thoughts and feelings.
Onto the calcium, I cannot tell you how frustrating it is not to be able to start the z - it’s only dropped as a result of treatment and I eat so well, leafy greens, nuts, seeds, beans, oily fish, yogurt, cheese. I don’t like milk but aside from that I actually have no idea how to increase my intake through diet! So I’m going to have to take supplement 
- still I keep reminding myself if that’s the worst set back I’ll face then I’ll take it!
Starting cycle 3 today, my friend is taking me today so I’m looking forward to a lovely couple of hours in the car catching up and the best fish finger sandwich in the world for lunch after 
Hope you’re doing ok today BB and is it last chemo in c1 or start of c2 for you tomorrow? Xx
@Spangleystar that sounds like a good strategy! I totally broke down in front of hubby last night, well not in front, we were snuggled in a warm, dark room about to sleep, and I just couldn’t hold it all back any longer 
and now I feel rotten as it’s upset him and drained his will to live/ go to work, I think I will definitely have a chat next week as I’m just not doing well. Sorry you can’t get on the Z, when you work so hard on your intake naturally, it’s frustrating to have to turn to supplements, I feel the same about all these meds, and just had enough x zometa - I don’t rate it I’ve not felt right since having it on Friday, Saturday and Monday I had kaledescope vision , like an aural migraine, and Monday, Tuesday, I had my len at 6pm went to bed at 7, closed my eyes and all I could see was white and it was throbbing in time with my heart, even opened my eyes and it carried on , it was scary, I’m waiting for a call back from triage and not sure if I’m getting conjunctivitis yea, tomorrow is last day of 1st cycle- but not sure if they will change anything because of the side effects, I actually spoke to radaruk nurses at the hospital, and she said they don’t deal with that side of things, so that’s lost me a bit of faith in them.
Have a wonderful day with your friend x as Thursday is my ‘good’ day I’m getting my music on and cleaning the house 
fish finger butties sounds perfect to me
Oh no lovely, please don’t feel bad for needing to release everything that has been bottled up, you are allowed to feel how you feel and unfortunately it’s part of what they have to contend with. Of course it’s really hard for those who love us, but they can also talk to people at maggies/mcmillan etc and will need their own support.
I had a couple of aura migraines in cycle 1 - thankfully they have settled - I think mine were linked to dex and sleep issues but could have been the cyclo in terms of timing.
Re the Z, did you have any lesions at all on MRI/CT? Anything show through bone marrow biopsy? I’d ask the question if you even need it at this stage, because I’m swiss cheese and so know I need it, but it sounds like yours could be preventative and in which case is there any alternative to build bone strength. I don’t think Z is part of the trial protocol, it’s supporting meds so it can definitely be paused (as mine is!) I’ve been told that only the following cannot be changed under the protocol once started - Dex, Lena, Cyclo, Borte. Everything else can be swapped if side effects- I’m getting a different sleeping pill today because the Zopiclone doesn’t work for me. So definitely check, whilst the team can’t prescribe they can absolutely ask the question to the consultant for you, so don’t give up, try a different trial research nurse. There’s varying levels of experience in my team too, but the desire to help is strong with all of them. Perhaps they thought you were expecting an immediate response and couldn’t in the moment give it to you?
Yay, enjoy your music and dance around the house, get those endorphins flowing! I’m obsessed with the new Bruno Mars song - reminds me of Leo Sayers ‘you make me feel like dancing’ which has special memories for me
Have a wonderful day xx
@Spangleystar I’ll have to ask her next week ~ as when I initially saw her after the mri & biopsy, she said it was the FLC, that shocked them and pushed me into ‘active’ it was 275, not clearly stated anything about my bone marrow or bones, so just assumed they are ok, I will question it though,
Did they say ‘shocked’ 
No wonder you’ve been so worried, it’s all in the language. 275 isn’t high for myeloma so they shouldn’t be shocked as it can be symptomless for a long time. One of the doctors told me when mine were over 1k that he currently had someone with light chains at over 20k and that they had caught me at a good time as 1k is when it can start to impact renal function and aside from frothy wee I had no other concerning renal indicators.
All of my diagnostics risk profile, iss stage, FLC #, plasma %, sizing and location of all large lesions with a generic ‘multiple further lesions on pelvis, spine and ribs’ were written on the communication to my GP after my first consultation. If you have a copy that may be worth a check?
Did you get your results from cycle 1? Mine after cycle 2 are now in range! Remarkable really.
Blessed, today on a dex high! Made a ton of tapas for dinner -,got a new sleeping tablet so 
and let’s see what tomorrow brings, I banged all 20mg of dex in the hope that the sleeping tablet works so I could be crying into my granola in the morning
Hope all goes well for you tomorrow lovely xx
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Good morning @Spangleystar so glad your results are going the right way! 
hope your new sleeping tablets have helped you catch-up a bit on your sleep 
Yes, using the right language is helpful I guess, I’m still hoping everything is quite mild with me, but it makes me wonder, that after Stem cell transplant, aren’t we really all just at the same level and starting anew? Still struggling a bit to get my head around it all, but as I’m on my off Len week and feeling better mentally x good luck this week x
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Hey, my headspace is a bit off at the moment so please assume good intentions always from me. I don’t think we’re ever all in the same place on this journey. At an immunocompromised level we’ll all have to live the sheltered life for a while post ASCT, but that while could be different for all us based on our response to treatment. Bone lesions will never heal, but bones can be strengthened, so mobility issues and risk of fractures will be another differentiator. Renal issues may require further treatment or interventions etc. Because it’s so different for all of us comparison isn’t useful for me - I positively loathe comments from well intentioned people who ‘know someone who had the same thing as you and they’re doing great now’. Of course always happy that others are doing well, but it’s not helpful to me or my journey.
Am of course happy to hear of people’s lived experience (it’s the ‘friend of’ conversations I hate), so delighted to hear that you are on the up this week xxx
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@Spangleystar hope you are feeling better today lovely x
So I had a shock this morning, requested copies of any correspondence between hospital and gp, and found out I’m Stage 2?? This is worse than I thought-I thought I was Stage 1, I knew a few days of hope would jinx me again
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Hi @Byrnebaby,
I’m sorry, that must have been such a shock to see when you were expecting something different. Finding things out through paperwork like that rather than having it explained beforehand is really unsettling.
I can see you’ve shared your diagnosis information, but neither I nor anyone on the Forum other than the Blood Cancer UK nurses can offer medical advice or interpret your results. I know that’s not what you’re necessarily asking for, but I just wanted to clarify and tag them in (@BloodCancerUK_Nurses). You can also always ring them directly on 0808 2080 888 if you’d prefer to talk it through on the phone, or pop them an email on support@bloodcancer.org.uk.
On a more personal note, I remember receiving similar information the same way, and I found it very upsetting. Take extra care of yourself today after that shock,
Ceri - Blood Cancer UK Support Services
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It’s not a jinx caused by you hoping @Byrnebaby just previous bad comms. Please don’t look for reasons to lose hope. Look for reasons to have hope xx
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Dear @Byrnebaby ,
I am sorry that you have had a shock this morning when you looked at your hospital correspondence. Please do not lose hope, you are doing so well.
The staging systems used in Myeloma can be quite difficult to understand and are very different to staging systems used in other types of cancer. I would really encourage you to discuss them with your haematology team. I know we have offered to speak with you before but I would be happy to talk this through with you in more detail if you might find this helpful. Whilst I am unable to interpret your results, I would be very happy to talk them through with you.
Kind regards
Fiona (support services nurse)
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Hiya
You’re not jinxed.
Stage 11 doesn’t mean the end it’s just where your myeloma is at at the moment.
In my non medical opinion Staging gives your consultant all the results to look at and what treatment you may have. They can work out if your high or low risk.
For context when I was diagnosed IGGK light chain myeloma
My Paraprotein was 45
Light chains 1200
Plasma cells 75%
Many lytic bone lesions with a tumour on my T9 Kidneys on verge of collapse
Im still here nearly 9 years later hopefully that helps to lessen your fear a little
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@Byrnebaby I’m so sorry you had to find out such heavy news this way.
I know exactly how that feels, and it can be a lot to process. It is completely understandable that you feel like your “hope jinxed you,” but please try to be kind to yourself.
When my mum was diagnosed she was at Stage 2, but she went through the treatment, and is doing fine now. We were told that stage 2 is still considered an early stages and that gave us a lot of hope. Sometimes medical terms looks scarier than the clinical reality.
Sending strengths and blessings your way. Hope the treatment goes well!
Kriti
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