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

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 ()

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. 
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.