Update on re occurring Cancer before 1st mri after treatment.

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Hi All 

I've posted previously with my story. 

Post treatment which was Dual therapy Radiotherapy with chemo tablets. Ended 27th Feb.

During the 4 month wait for MRI to see if treatment worked I noticed another growth. MrI and more biopsies Confirmated  

Told i need urgent APR surgery  (16th Aug  )

I rang my CSN. to ask who I'd be hearing from in prep - she didn't know But will ask surgeon cns to ring me ! 

24th aug Pet scan done. 

26th Stoma practice kit arrived in post 

31st CT scan done 

1st Sept pre assessment clinic

5th Sept stoma nurse rang asked if I had kit. I expressed my anxiety and disappointment in having this just posted to me with No contact. 

6th Plastic surgeon rand. He went though his part in the surgery. What is due to be removed as APR but could be hysterectomy as well.   Frightening or what ! 

9th Sept pre assessment nurse rand asking if I've heard from Colorectal nurses yet for support prior to surgery. NO  she gave me my blood results and ferritin little low but ok for surgery. She is going to ring Colorectal nurses to contact me ASAP. 

12th Sept stoma nurses due to ring to go through kit ? 

13th RESULTS WITH CONSULTANT  with how much are they going to remove ? 

Some support through last month would of been good. Thankfully we have a Maggies centre and I've made contact and seen someone, who can't believe I've been left like this !  

 

 

  • It's not like it's a friggin' bunion. 

    I'm so sorry, Jinnie, but so glad that Maggie's has come through for you.

    Sending you patience and support. 

  • Jinnie

    I'm horrified at the lack of one-to-one care in your case; a telephone call to go through a stoma kit?  It beggars belief, truly.  It wouldn't be so bad if it were just a one-off but it's not; you seem to have been left dangling throughout the run-up to what will be major surgery.  I hope you have a more productive talk with the consultant on Wednesday, I will be thinking of you, we all are.  I'm glad you found support at Maggie's.

    Irene xx

  • This is awful  , you’re facing major surgery & everyone concerned is contacting you by phone? This is disgraceful! You need to have face to face appointments with these people, it really does make me angry, it’s not as if you’re going to have a minor op! 

    I’m so pleased you’ve made good use of your local Maggie’s Centre, but it shouldn’t have been left up to you to search for the support you need elsewhere this should be being offered by your medical team! 

    Know that we’re here to support you however we can. 

    Nicola 

  • Thank you Niki and Irene

    I feel so let down on my whole cancer journey treatment. I've spoken up and verbally complained about my radiotherapy journey, I had a written response last week and it was addressed to the wrong surname..they cant even get that right. 

    Do you think I should of heard from Colorectal nurse team to support me since being told of this pending major surgery. 

    Jinnie x 

  • Hi again  , it’s only my personal opinion but I think you should have been given face to face appointments with everyone that will be involved in your care considering the surgery you’re facing! It’s disgraceful that they’ve not even got your name correct in response to your complaint either! 

    Nicola 

  • Jinnie

    You could visit the PALS department (located in the hospital) who deal with patient complaints and give them an account of what has happened to you.  But I know that you have so much on your plate at the moment that that is maybe the last thing you want to do, and I completely understand that.  But unless people point out how bad their experience has been, all the staff you have seen are just cogs in a wheel and probably have no idea how disjointed and neglectful the overall care has been.

    I am so sorry you feel so let down, and with good reason.  You could let the staff know today that a telephone appointment doesn't cover all the things you need to know in dealing with a stoma, and ask for a face-to-face appointment.  And we will be waiting to hear how things go tomorrow.

    Sending you a huge hug, Jinnie.

    Irene xx

  • Hi  

    Oh my goodness, this is a very poor level of communication with you, and in my opinion having been through similar major surgery, telephone calls just don’t cut it. You need to see people face to face. 

    I had 3 surgeons and had face to face appointments with all of them in advance. I never saw any colorectal nurses, just the surgeon but did meet with an urology CNS who was lovely and gave me his details. Each surgery, being from a different specialism, wanted different things in terms of scans etc, but they seemed pretty joined up as it were. 

    However, I completely identify with not having any support in advance to help prepare me for what was going to happen. My gynae surgeon was the lead due to my cancer being cervical, but she didn’t go through everything that would be removed or how much. To be fair, I didn’t really ask questions in case I didn’t like the answers and scared myself so all I asked was would I look the same afterwards externally apart from the stomas. Seems a ridiculously vain question now, but I wasn’t clear on what removing my vagina would involve and no-one had explained! Surgeons talk about removing these major body parts as if it’s having an ingrowing toenail dealt with rather than a life changing experience. 

    The urology surgeon just told me I’d feel afterwards like I’d been kicked by a horse and told me to get walking a lot in advance of the op-I couldn’t really do as much of that as I’d have liked as I’d just been had a large vertical incision for my attempt at a salvage hysterectomy which had only just healed, and I was in a great deal of relentless daily pain from the cancer spreading.

    The colorectal surgeon wanted to save my bowel, but I asked him not to, and to please just take it, so that was the focus of our single discussion. I saw the stoma nurse to be handed the practice kit, got marked for the best stoma sites on my tummy, and nothing else. No advice on what it would be like, how to care for stomas, nothing. 

    I went into that surgery basically clueless when I think back. I had no idea what my life would be like afterwards and basically just muddled through. I remember reading my discharge letter and seeing the words “rectal and vaginal stump” and being horrified! 

    On the other side of surgery I can see how much was lacking, and the fact there is no mental health support/counselling offered is a huge failing in the system. It’s a massive issue and there should be psychological help provided as part of the standard preparation for this kind of surgery.

    It doesn’t inspire confidence when you feel so unsupported, and you need to feel a bond of trust to go through this. I hope your consultant appointment will give you the information you need,

    Sarah xx


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  • Thank you All so much for your views on my situation and sharing your journeys. This helps me immensely. 

    I've had phone call from stoma nurse this morning, I shared my feelings about lack of support. she was very nice and reassuring asked if opened practice kit. Um No ! She replied some patients find it helpful to take a look, perhaps stick one of bags onto my skin to see what it feels like on my body. I'll think about it. 

    Told me stoma nurses will be seeing me on operation day and every day whilst on ward.

    Im intending to speak to surgeon and oncologist again tomorrow about emotional support as I was told they would request this a month ago. 

    I agree all concerned should be seeing me face to face appointments and I will be expressing this too. 

    Thank you All hugs gratefully recieved

    Jinnie xx 

  • Results day for PET and CT yesterday,  I'm hoping I'll be seeing surgeon and consultant for a date for surgery. 

    The consultant rang 2 hours before my appointment, will I be happy to discuss over phone. I replied No I need to come in. 

    Attending No surgeon there today and No date for surgery. I expressed my disappointment in having phone xalls and not face to face over last month. 

    SOME GOOD NEWS THOUGH ! 

    Scans show cancer hasn't spread to organs FANTASTIC news !

     Cancer in anal canal and anus.  I do have a suspicious looking lymph node which they will take. Plus I have extra large uterus with big  fibroid. So maybe hysterectomy too. Consultant said he is going to contact surgeon for me to discuss, also ask if surgery scheduled yet and get back to me. 

  • Jinnie

    That really is wonderful news about your scans, you must be so relieved!

    But...to get a phone call two hours before your appointment?  What on earth is going on there?  I am glad you stuck to your guns about having a face-to-face.  I am so frustrated on your behalf!  It makes one wonder if they use snail mail to communicate with each other.

    As a matter of interest I had a hysterectomy in my early forties because of fibroids, and afterwards the surgeon told me that one of the fibroids was 'on the cusp' of turning into something more serious.  So I was relieved that I had had it done when they had been talking about alternatives.

    I hope they get back to you VERY soon.

    Irene xx