Pseudomyxoma peritonei

Pseudomyxoma Peritonei is a rare cancer of the appendix. If you're suffering from PMP, or know someone who is, join this support group.

Familiar feeling of shock & numbness

Sallyrose
Posted by
Hello.I'm a care giver  for my husband  who had cytoreduction plus HIPEC in 2013 at Basingstoke.
Monday we were given bleak news , on seeing our local consultant who has also kept a weathered eye on him for 6 yrs.After an  ultrasound  because of a new protrusion of PMP under his skin, plus carrying 9 LBs of mucous tumour again , The consultant is referring us back to Tom Cecil ( original surgeon/consult. ). Means a new trip to Basingstoke to wait for a free bed & probably another  huge op again.
We both remember feeling  this awful bleakness after the  first diagnosis , but we then managed  to get through that first MOAS plus 1, week, month , year of recovery.He is more poorly this time around , so I hope  for his sake that something can be  done  to help relieve his pain .
Just here  to join fellow PMP'ers & carers .Thank you for reading
pmpsurvivor
Posted by

Hello ,

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

Sallyrose
Posted by

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.

x

pmpsurvivor
Posted by

It's great that there's a plan and also to see that NHS resources are being used to the full ()

Angela
Pseudomyxoma peritonei survivor and trustee of Pseudomyxoma Survivor

Cassie78
Posted by

Hi Sallyrose

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. 

Take care

Cassie

Cassie xx
The brave may not live forever but the cautious do not live at all.  Remember to live each day, the best you can.  
Sallyrose
Posted by

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 .

Kind regards 

SallyRose

Cassie78
Posted by

SallyRose

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 

Cassie xx

Cassie xx
The brave may not live forever but the cautious do not live at all.  Remember to live each day, the best you can.  
Sallyrose
Posted by

Hellooo Cassie,

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 ?

Fond regards 

Sally

Cassie78
Posted by

Hi Sally

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.

Cassie xx
The brave may not live forever but the cautious do not live at all.  Remember to live each day, the best you can.  
Sallyrose
Posted by

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.

Fond regards

Sally

Cassie78
Posted by

Hi Sally

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

Cassie xx
The brave may not live forever but the cautious do not live at all.  Remember to live each day, the best you can.  
Sallyrose
Posted by

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

Sally x

Cassie78
Posted by

Hi Sally

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. 

Cassie xx
The brave may not live forever but the cautious do not live at all.  Remember to live each day, the best you can.