Hello Sallyrose,Sorry that you have to find yourself here and that your husband has been identified with a recurrence. I had my original surgery at Basingstoke in 2011 and have been on watch and wait with a recurrence for a number of years now. Those thoughts are never far from the back of my mind.If it helps, there's lots of patients who have been through a second surgery and understand how it feels.xx
Angela Pseudomyxoma peritonei survivor and trustee of Pseudomyxoma Survivor
Thanks for your reply pmpsurvivor,it helped. Watch & wait is a land we are very familiar with also, because he has always had recurrence from his first scan. I can sympathise with you very much so.Stay as fit as you can in your now "normal " way, & distraction techniques are always useful we have found.
Oh & we have heard that his new urgent Ct scan is for a week on Sunday ( madness !) so I'm just keeping everything crossed that Mr Cecil or Mr Mohammed can offer another surgery.
It's great that there's a plan and also to see that NHS resources are being used to the full ()
Will be thinking of you both on Sunday. Hope you don’t have to wait too long for an appointment at Basingstoke.
I am just shy of a year since my surgery so my first yearly scan will be in the next few months.
Sending you the very best and fingers crossed for you both.
Thank you so much for your good wishes Cassie . I have just gotten off the phone to my husband's surgery to ask about a prescription for "ensure" supplement drinks, because he really can't face even small meals now. I feel exhausted & have to fight for any help with his condition.Sunday can not come too soon.I am now thinking is it because we are in Wilts. health authority & Basingstoke is of course Hants. authority .Hmmm.
Don't be too apprehensive Cassie , if scanxiety sets in when you get your first scan date.Many do feel this way, it's where everything to do with your diagnosis & past treatment suddenly comes to the front of your thoughts ,whereas up till then you have been merrily getting on with your life.I'll be thinking of you & your results too .
It sounds like you’re doing a great job at advocating for your husband and I expect you’ll be there asking all the questions at his Basingstoke appointment. I’m really sorry to hear that he is struggling with food, it must be difficult for you both.
I can’t say if location has anything to do with time scales and waiting. I’m from Coventry in the Midlands. I think I waited a couple of months for my first appointment after local diagnosis and referral.
Trying not to think too much about the what ifs and scans. It’s exhausting dealing with the day to day without the stresses I could let my mind get in to. I’m waiting on an echocardiogram for a murmur the gp has just discovered. One thing at a time.
Best wishes to you both
You probably thought we had fallen off the ends of the Earth after not hearing anything from me.Well 7 weeks later we are finally home from Amazingstoke.
Those weeks are still very raw & scarey for both of us, suffice to say that after his emergency CT scan on the Sunday, we were phoned on the Wednesday after , by specialist nurse Sian, & there was a bed waiting for Andy on C2 that afternoon.The consultants had discussed his scan in a weekly meeting & his case was considered as an emergency.
After a hasty lunch & packing ( there was a room also booked for me ) he was in bed in room 3 by 3:30 pm, supported by O2 ( the cystic mucosa mass had pushed his diaphrane & lungs upwards) immediate blood transfusions ( Dr yana told me his blood work was " deranged " ) & booked in for central line & TPN bag on the Thursday.The idea being to get him as good as he could be to stand another MOAS & HIPEC. I knew how ill he had become prior to this, but to be told how seriously ill he was,numbing is the word I think of.
Thankfully Andy being so ill & resigned took everything Mr Moran & Mr Mohammed prescribed, & the operation ( another 10 hour one ) took place 9th April.
Nothing came easy for Andy, he heamorraged during surgery, & was still being transfused up to 3 weeks after wards. Bless every blood donor out there !
He acquired a new friend - stoma , which misbehaved & took vital nutrients away from his starved body, lengthening our stay even more,having electrolyte infusions every other day, plus fluid restrictions & the dreaded ST Mark's solution... if anyone reading this has been threatened with it,they'll know how ghastly it tastes. It is supposed to make the stoma output more solid , but oh no Andy's stoma was more like a naughty child, gurgling away & sticking it's tongue out to us.
On the plus side , there were 4 other male patients that were going through similar adventures as Andy , & stayed in the extra weeks also, I made some life friends amongst their wives .Without one anothers support , laughter & tears we would have been on the next floor in the psych unit together.
This last week at home has not been easy either, this nursing lark isn't what it's cut out to be . He's lost 4 stone , & I'm trying every tactic to get food/ supplements / any nutrition into him, as he hasn't regained his appetite yet, early days.
We do feel out on a limb, but have already been to visit the local stoma unit & they are supportive, so onwards & upwards.Thank you so much for reading this,& your earlier support. I didn't mean to ramble on, but it's helped me get some perspective , & I managed to bring him home , not even daring to hope the team could do their magic again.
How are things going in your world ? Have you had your echo or scan yet ?
So good to hear from you. Even better that you and Andy are out the other side of moas no. 2 and home.
It sounds like it was some 7wks. I can only imagine what you have been through. Hopefully Andy will regain his appetite soon and make feeding him up a little easier. I lost quite a lot of weight and at the start when my appetite wasn't really up to much I went for high calorie anything I fancied. My go to was mashed potato and gravy; easy to digest with the salts from the gravy and a bit of butter in the mash. Still go to it now when I can't be bothered with a real meal.
How's Andy getting on with his stoma now? I too have one and if there's anything he wants to ask then feel free. I'll do my best to help.
I got the results of my echo and it seems I was probably born with a hole, that they can't locate, and that is what's causing the murmur. The consultant told me to go away and forget they found anything. If it were going to cause a problem it would have done it before now. I was happy with that. I have my 1yr CT scan on 7th July. Trying to ignore it until it happens and then ignore the wait for the results, although I think this may be harder to do! Thank you for asking.
You can ramble away whenever you need, I'm glad you can come here to do that, I'll be here.
Wishing you both the very best.
Thanks for your warm reply, it seems that Andy's weight has stabilised at 9 stone 5 pounds ( I know, worrying on a 6'1'' frame ) but he's eating slightly more ( my w/k was made when he actually requested bubbly cheese on toast Sunday ) & walking a little further round the garden daily, so hopefully it's all a plus.I did smile at your go to, of buttery mash & gravy, because that's what he tends to try too when all suggestions fail.
We have found a fermented yogurt drink called kefir ( comes in different flavours ), which certainly is helping his good gut bacteria to grow again , & has no ill effects on his "production"
He did want to ask you, does it matter how often the bag is emptied ? He feels he must empty it even when it's not really necessary, during or last thing at night ? He has had a few leakage problems in the night , so it does affect his confidence .
So pleased about the cardio consultants words, it must have been such a relief for you after the consult.One less health worry .
Likewise for yourself, with your scan a month away , drop me a line if scanxiety demons come calling.
So good to here that things are on the up. It’s a gradual process and Andy need to listen to what his body tells him. I was napping all the time for what felt like ages just to have the energy to eat and potter about.
As for the bag, I tend to empty almost every time I go to the loo. It’s more of a habit than anything else and it gives me the opportunity to have a look at the seal and see if there’s anything trying to leak under the sticky plate. I find they stick better after a shower when the skin has been dried but had moisture in it. I always empty before bed but quite often have to get up in the night. The time I eat in the evening will dictate this usually. Also, if I have too much fibre in the evening it is more likely to leak due to pancaking and gravity not having the same affect it does on the output when I’m sitting or standing. When I say fibre it can just be normal veg or fruit, nothing special. I try to remove the skins in the evening especially, for this reason.
Once my weight settle and eating become easier I did put weight back on it just took a bit of time. I’m now worried I won’t stop putting weight on!
Hopefully this will make you both laugh. On leaks, you haven’t had a good one until you have done it in front of not one but two classes of teenagers in the same day after eating a pot of naked rice for lunch. Moral of the story is, if you’re going to try new food don’t do it in the middle of a work day and always carry spare clothes (I did have this one sorted thankfully !)
wishing you both the very best
Hello again cassie 78
Sorry for the delay in my reply post.Just life catching up again & finding some " new " normality whilst Andy finds his daily routine.
Stoma output is still high, stoma nurse doesn't want to reduce loperimide or codeine yet, but he is coping with his technique much better , & touch wood ... fewer night time accidents. In her words he is doing well.We worked out it's to do with the wrinkly crinkles in his tummy skin ( due to weight loss) , just doesn't sit right against adhesive , so we have tried to work around that.
Best news is he has gained 3 lbs in last two weeks , his walking distance is improving & he is eating more snacks. I am thrilled !
I'm doing surprisingly ok, once I accepted he could n't ( not wouldn't ) eat more than small snacks , I left him to pick at the fridge himself, leaving little tasty things in there. I'm much more calmer & less anxious , plus sleeping better.
So, now for you . How are things after my 3 weeks away fr the boards ? Have you had your scan yet ? I can't remember which date it was ...
Anyway hope you are enjoying this lovely summery weekend & best regards
Good to hear from you and so glad to hear things are progressing. It does take time and there will be good and not so good days but just remember how far you’ve both come.
I’m good thank you. My 1st scan is next week and follow up at my local hospital at ten start of August so a bit of wait. Heart scan was all fine.
I see you’ve joined the ileostomy group too. Plenty of different experiences there for you to tap into.
So pleased to hear your good news.
Sending you both the very best.
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