Newly diagnosed

Hi

I am not sure what to ask after being told on Thursday that I have PMP and have had a referral made to Christie’s in Manchester. I am 4 weeks 3 days post op for a sub total hysterectomy with the removal of my appendix which was enveloped by huge rugby sized cyst that had mucin and leaked. I was on my own during the consultation as didn’t know what the appointment was for and naive I know but though it was a wound check. My husband has skimmed through the information I was given and just says let’s wait and see what they say. I’ve done a bit of reading and to say I am scared is an understatement- I’m not yet recovered from  this op and the thought of another is just draining. 

is it usual to feel so weepy? Bearing in mind I was pre menopausal and now am thrown into surgical menopause. It hasn’t been two days since my consultation by the gynae surgeon who did the op but feels like forever. Before the op I was told there was a high risk of needing a stoma, I had practice kits and counselling- was devastated- but didn’t need one so was ecstatic and now plummeted into this - I’m so confused and can’t make sense of it. 

thank you for any support any of you might give. 

  • Hi There,

       My username is Saxon.
       I have just read your message and would like to say how brave I think you are to reach out for help and support.
       I've not been diagnosed with PMP but I do have a very similar cancer known as mucinous adenocarcinoma - which also began in my appendix.

       I can understand how you feel at this time, particularly that sense of news and events throwing you up and about, as if being on a roller-coaster. Life's been very much like that for me of late, especially these last few weeks.

       I'm not sure if you have been to Christies before or know much about the people there but I should like to reassure you that, to the best of my knowledge, they are one of only two hospitals in the UK which specialise in the treatment of PMP - and they provide excellent care. I was there for my big op early last year. Everyone was so caring and kind. In my opinion, you couldn't be in better hands.

       Being so up and down emotionally, comes with the territory, I find, with a cancer diagnosis. One minute I'm shedding tears of joy and the next tears of despair as thoughts and feelings, powered by that underlying fear of not knowing how things will turn out, run amok.

       You've got a lot to take in and it will take time for things to assimilate. Your world has been upended in one of the most brutal ways but I would like to reassure you that you will find some level of equilibrium and no doubt strengths in yourself that you perhaps didn't know you'd got.

       I'm relatively new to this website myself but already I've found a lovely, supportive and caring community of fellow suffers and, of course, professional help and advice is at hand, too, as you've no doubt discovered.

       When you feel ready to explore the net a bit more, you may like to take a look at - www.pseudomyxomasurvivor.org

       Please don't hesitate to ask if anything is troubling you. There's a wealth of experience on the site.

       Wishing you a more peaceful and relaxed weekend, Saxon.

      

  • Hi Saxon

    thank you for your reply it was a great help not to feel alone. I just feel a bit lost and confused-but so good that there is the support if and when I need it is very reassuring

     I’m glad there is a community of people willing to support others and share their experiences- it’s such a personal and scary experience- I hope that I can explore more when I’m up to it so thank you ffor the recommended site. 

    the weekend was a rollercoaster with Friday in denial Saturday was tearful and yesterday was ok but tiring - I hope yours was busy with nice things. Thank you you’ve made a huge difference.

    MrsT 

  • Hi Mrs.T,

       Thank you for your reply.

       How has your week been? I do hope that you have been able to find some degree of clarity amidst all the confusion that cancer presents and that things are becoming that little bit more stable for you.

       I've had a good few days since last in touch, thank you. There have been times of tiredness, doubt and uncertainty but, on the whole, it's been a positive time for me. I've been struggling with almost constant exhaustion until quite  recently but my energy levels have started to return so I've been able to start enjoy doing some of my favourite things again.

       Please do let me know how your are getting on and, of course, if you have any concerns that you feel you would like to share, then I will do my best to share my experiences with you in the hope that they may encourage and support.

       Wishing you a wonderful weekend - despite the struggles we face,

       My best, Saxon.

      

      

  • Hi Mrs.T,

       Just a quick line or two to see how things are progressing for you. I do trust that you are beginning to find your feet amidst all the upheaval that cancer presents.

       I had a visit to Christies last week to see what, if anything, they could do for me and, after an informative discussion with one of the very top oncologists there, it was decided to put me forward for clinical trials. It's all a bit tentative at present but, even so, as I'm sure you can imagine, my wife and my family and I are thrilled to bits to have this possibility of help/hope extended towards me. I should hear something more in a few weeks' time.

       Hope you are in a good place and that I may hear from you soon.

       All best wishes, Saxon.