Cyclophosamide priming

Just catching up on all the preparation and very understandable nerves that are being felt prior to these latest treatment steps that you’re taking @Byrnebaby and @Spangleystar and wanted to second what dear @2DB said about loving the support you both offer. It’s invaluable, although I imagine it can feel rather raw too, like today.

I find what you both share personally helpful, as I’m sure other current forum members and future ones will too, as it’s an incredible real-time record of just how much effort it can take to live with these sorts of illnesses and tolerate their treatments. Emotional effort can also be exhausting and use up a lot of our limited energy, as I’m sure you’re finding.

Sometimes the forum reminds me of a large therapy group where we can pop in and out and drop some emotional stuff and then look at it or not within the group, with the Blood Cancer UK team stepping in with boundaries and words of wisdom. We’re all forum members here and we all have this space to share how our blood disorders affect us. That includes the difficult feelings that accompany us and how they make us react, tough as those can be.

May I just say that I hope these difficult raw feelings and anxiety don’t keep you from sharing more around the forum @Byrnebaby, no matter what was said on Facebook. Maybe a good time to consider how public even these private spaces can be.

And I hope @Spangleystar that you feel okay in having challenged what was shared, it can be hard to assert our needs at the best of times, let alone just before going into hospital. Might be the time to save your energy for yourself and your immediate next steps, which you sound super organised for.

Perhaps right now it’s okay to retreat a little so you both can focus on your own individual needs and to conserve some energy for this week’s travails.

It’s not my place to say so I hope you don’t mind me saying but I kind of see you both as siblings on a similar path whilst facing it in your own ways. Not all ‘families’ can agree or get along all the time, but you have those shared experiences that you can come back to when you’re ready.

Also, just a reminder that the Blood Cancer UK team, including Ceri and specialist nurses, should be back tomorrow.

Thinking fondly of you @Byrnebaby and @Spangleystar, you’ll be kept in mind this week as these next steps in treatment occur.

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It’s good advice @Duncan thank you for supporting us xx

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Aww you’re more than welcome, I just wish it was easier right now for all.

I hope your roast dinner is lush, totally made my mouth water thinking about a proper British Sunday roast!!! Missing pubs today weirdly :thinking:

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I’m sorry everyone, I’ve had a beast of a day, I have had no one to talk to about how I’m feeling, and was struggling to process the thought of all these processes, interventions, meds, side effects, loss of immunity etc, and contemplating a life , however long/short of struggle, I don’t know wether it’s the comedown from Tuesdays dex, cyclophosamide and the growth hormone jabs, but it all pushed me to the brink of needing reassurance, and it’s reassurance no one can give me, ever, this is a nasty, beast of a disorder, and I know not everyone in the little group we have here, has it, I do appreciate each and every single one of you, and I’m so sorry @Spangleystar :glowing_star: , I’m a baby, a wimp and just struggle on some days, I’ve been suppporting people on fb, but when I need help/guidance there is no one, I’m so sorry all x @Duncan @2DB @DuncanB @Spangleystar i do try to keep it together, I can’t do the counselling thing, way too much has happened to me in the last 12 months, love to you all and my little :glowing_star: good luck and please know, there is nothing now that you can post about the forthcoming weeks that I don’t know about, so please, please post way if you are up to it xx

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0h @Byrnebaby
We need a ‘safe’ word, to indicate our level of vulnerability or tolerance on a given day, to avoid anything like this in future! Let’s not make the word ‘Facebook’ though :rofl: is that too soon?! :face_with_peeking_eye:

Please do know - I have and will always come with pure heart. This is tough enough, I’d never in a million years intentionally do anything to add to the load

Glad you’re staying- we are all here for you xx

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No need to say sorry @Byrnebaby

We are all here to support in any way we can and all understand just how tough it can be.

Take care

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:weary_face::glowing_star: @Spangleystar not too soon at all ‘Facebook’ or 'willyhead ’ Will do :grimacing::woman_facepalming: just as a constant reminder of my stupidness

:sweat_smile::sweat_smile::sweat_smile: it wouldn’t let me post the proper word :sweat_smile::sweat_smile::sweat_smile:

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@DuncanB of course there was, I messed up big time

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Not from my point of view @Byrnebaby and if saying sorry helps that’s okay with me :folded_hands:

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No way would I ever :rofl::rofl::rofl: we don’t need to talk about it again @Byrnebaby

We leave the past in the past and move forward positively my lovely.

Let’s go with ‘softer’, so that we know one of us is feeling wobbly and we should tread carefully xx

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@Duncan
It was a lovely roast pork with crackling! Terribly unhealthy with duck fat roast potatoes, but it was a lovely bit of family time xx

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Just wanted to say @Spangleystar and @Byrnebaby I am thinking of you both very much at this time. “Softer” is a great word choice @Spangleystar. Are either of you familiar with the artist Charlie Mackesy? He produces these incredible pen and ink drawings of the boy, the mole, the fox and the horse with inspirational words of wisdom. He has produced two books. One of his sayings is “When life is hard go softly with yourself.” Willow x

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No need for any apologies @Byrnebaby, the stress you must be under is bound to emerge in its own way. From a certain angle anxiety can even be helpful, or at least for me it can show what I’m feeling vulnerable or ruminating about in the background. Like I say around the forum, if we didn’t feel anxious about severe situations like these illnesses then our survival instincts are probably not entirely working!

Also I want to acknowledge what you said about our medicines also affecting our moods and how for me that can feel pretty scary, like where do I end and the illness begins? To feel one’s emotions changed by a treatment can feel a little out of control. Not pleasant, on top of the more physical aspects, right?!

PS - just edited this as I used an automatically blocked word so there may be a second similar post at some point

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Totally agree @Willow, to be softer can also be strengthening, or at least not so tiring to ourselves when energy is limited. Thank you for mentioning that author, your recommendations are always so helpful and emotive!

My tummy was rumbling so much at the thought of your roasted delights that we went out for Californian Sunday lunch AKA breakfast burritos and tacos :drooling_face:

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@Duncan @DuncanB @Spangleystar @Byrnebaby and everyone who needs to hear this today. Willow x

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Lovely to see your dog @Duncan and the food looks good too! I do like dogs. Thanks for sharing the photo.
Willow x

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Yes @Willow I have that book, it is absolutely beautiful. Thanks for your support as always xx

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@Duncan
That looks delicious! Your lovely dog looks very keen to try it :heart_eyes: xx

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Softer is definitely the word for me today. I’m all a jangle…

I’m listening to this on repeat until it sinks in:

Xx

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