Scared of losing my rock

10 replies
36 subscribers
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Hey everyone,

I'm not entirely sure I should be doing this, it's my husband who is going through it and I know he needs me to be strong, but I don't feel strong at the minute, so I wait until I'm alone to let the fears and the tears flow.

My husband had a cystoscopy on Tuesday, a more in-depth CT scan on Wednesday and is waiting for a TURBT procedure. His first symptoms were lower back pain, then blood and clots in his wee and lower tummy and groin pain. He hasn't slept properly for weeks as he is up and down to the loo every hour, if not more.

I made the mistake of looking online and it's totally freaked me out. I'm someone who needs to know what I'm dealing with, I don't cope well with the not knowing, and I know everyone is different and the results online are all generalisations but I'm scared. Am I being silly to be scared before we have a formal diagnosis? The surgeon at the cystoscopy said they found a mass, he didn't call it a cancer, so maybe I should be clinging to that instead?

The problem is, I convinced myself that my husbands symptoms were kidney stones, so I was floored by the 'mass' diagnosis. My husband was told he may need a permanent catheter, which frightened him.

I don't know that there's anything anyone can do, I just needed to tell someone everything. Our family and friends are too close, too scared themselves to pile my fears on to them.

If you've managed to read all of this, thank you for sticking with me, and thank you for letting me get it all out.

rily 23 days ago

Hi neatie46 and welcome to the community although sorry to hear of the fears for your husband. The early days of uncertainty and not knowing can be the worst. Could I suggest you join us in the bladder group where many of us have been through this. Click the link to get to the group and create a new thread there where we will help you understand what is going on. Best wishes.

Best wishes to All, rily.

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eddiel 22 days ago

Hi neatie46, and a warm welcome from me, it's normal to be scared of the unknown, and Dr Google will certainly add to those fears, so please keep away from him. Your heading, scared of losing my rock, is something I can relate to and hopefully give you a little comfort.

My rock is my eldest daughter, she's 52yo, has twice been diagnosed with cancer lung then sarcoma, and was told both times it was incurable, only for her to defy her prognosees and make a full recovery both times. Non of us knows what the mass may be, cancer is only one possibility, but the one we are drawn to. I'm not going to tell you not to worry, as we all did, and the waiting is awful, so if you can, keep busy, do something you enjoy and it's ok to cry, we do it for a reason, best wishes for your results.

Eddie xx

B2theC 22 days ago

Hi Neati46

I TOTALLY understand where you are coming from! My husband is unaware I have joined this online forum - only because I can only imagine what he is feeling, without adding my own weight to his shoulders. I can still hear what he said after his initial ultrasound scan and I think these words will haunt me forever. The way you hear words but feel you are outside your body looking at what's happening around you. The sudden cold feeling and the shakes.

I still randomly cry - though that too, I've become a master of hiding (I hope!)

However, I had an epiphany the other day. Two weeks ago, we were going about our daily lives, totally unaware. Today, we are in a far better place - we now know something unwanted is loitering around and we can do something about it. Forearmed! Had we not found out, this little (insert chosen expletive) would be left to its own devices!

So far, I've found this forum helpful and please, feel free to vent to me! I'm new to this too and I know this is going to be an emotional whirlwind.

cja 18 days ago in reply to B2theC

my husband doesnt know im with this group for a few years he was having stomach problems drs kept saying he had gall stones then on 31st october 24 he had a diabetic episode where he was took to hospital after some scans we was told he had metastic lung and bowel cancer it is uncurable he is having treatment for lung cancer they not started treatment on the bowels i wake up every few hours to make sure he is still breathing im trying to be strong but its hard

B2theC 18 days ago in reply to cja

Wow! Sorry for your experience cja. Infuriates me when I hear of people not being taken seriously by Drs. Two experiences of this - my brother in law (bowel cancer symptoms passed as IBS for a year) and a close friend the exact same as brother in law. It is hard to stay strong but we are not alone. This site shows that xxxx

neatie46 17 days ago in reply to B2theC

Hi B2 the C,

I 100% get how you feel. We've got a date now for the TURBT, in just under 3 weeks and I'm trying to stay hopeful for good news without setting myself up for a shock again. Yes, absolutely, we need to know so we can start fighting whatever it is together.

My husband doesn't know I'm on this forum either.

I'll keep everything crossed for your hubby and you, and am happy to be an ear for you too.

neatie46 17 days ago in reply to eddiel

Hi Eddiel,

Oh my goodness I can't begin to imagine what your daughter and you have been through. Your daughter is amazing, a real life wonder woman.

Thank you so much, you have truly given me hope.

Sending hugs and very best wishes to you both.

Neat. Xx

eddiel 17 days ago in reply to neatie46

Thank you so much Neat, and I will have everything crossed for the best news possible from your Husband's TURBT, as rily has suggested joining the bladder group, would hopefully ease your mind, put you in contact with many wonderful people with a wealth of knowledge to share, and help you both prepare for his procedure

Eddie xx

Dog lover 10 17 days ago

Hi neatie46 I found out yesterday (after months of back and forth) that my dad has stage 4 lung cancer which has spread to the bones and lymph nodes. I totally understand where to tie coming from, that need to be strong for them and to help them through their emotions and all the practical things that needs to be done too. I’m finding it overwhelming.

im glad you’re reached out here because you matter too and I hope you’re able to take some time for yourself

neatie46 17 days ago in reply to Dog lover 10

Hi Dog lover 10

I'm so sorry to hear about your dad, and I hope that you too can find some time for yourself while you are undoubtedly a huge support for your Dad.

I don't have first hand experience of what you both, and your family, are going through. I already have those days of feeling overwhelmed and my hubby hasn't even had all of his tests yet, so I can't begin to presume that I know how you all are feeling. BUT I'm here to listen if you need to vent.