Liposarcoma - have moved from Pre-diagnosis

My operation is called Resection retroperitoneal sarcoma left nephrectomy left hemicolectomy splenectomy? Distal pancreatectomy.

  • Hi Mary,

    That's quite a mouthful! I hope that everything has been explained to you  and that you understand exactly what is going to be done. Do you have a date for surgery now and how are you feeling about it, now that you've had some time for it to sink in? 

    I shall be thinking of you and I sincerely hope that it all goes well? As you know, we are always here for you.

    Kind regards,

    Jolamine xx

  • Thank you.The intention is to remove the sarcoma, the left kidney, the spleen, the left bowel and possibly part of the pancreas.  It seems strange no longer being in pre-diagnosis. I still feel well, no pain, eating the same as usual, and went for a one mile walk this afternoon.  I am unsure that it has completely sunk in, still feels like writing a story about someone else. When reality does occasionally sink in, then I cry. The operation is due to be 21st November. I don't want all that taken away from me, but deep inside I know it has to be done, well that's the logical thinking sometimes.There's an outpatients pre-op appointment on the 15th.

  • Oh Mary,

    Bless you - you sound as if you are dealing with it all quite stoically, on the whole.  I felt as if I was writing about someone else at the start of both of my cancer journeys too. Don't worry about shedding those tears, You are entitled to cry with all of that going on. Besides, crying is a good way to relieve stress. It is great news that you are still keeping well and eating as normal, as the fitter you are, the better you should be able to cope with this. 

    I can fully understand that you don't want all of that taken away, but sometimes we just have to bite the bullet and get on with it. I am glad to see that your pre-med appointment has already been booked and that your surgery is not long after that. I have had various parts of my body removed throughout the years and I am not as fit as I used to be, but I still enjoy my life, despite the limitations and I sincerely hope that you will too.

    Please keep in touch and let us know how you get on. As I'm sure you know by now, we are always here for you.

    Kind regards,

    Jolamine xx

  • Thank you for your ongoing support. It still feels quite unreal. I suppose after waiting so long and then revceiving a bombshell, it's not surprissing.

  • Hi Mary,

    I suspect that to have been hit with so much, this diagnosis would have felt quite unreal, no matter how soon you heard. I am sure that you feel in trepidation of so much surgery. It sounds as if you'll have the most experienced surgeons in the country in your corner, so place your trust in them and let them do the necessary. The sooner your operation is over, the sooner you can start your recovery.

    I am always here for you - on the bad days, as well as the good.

    Kind regards,

    Jolamine xx

  • Thank you. Before just a short time ago, I used to forget about the whole thing quite a lot. But now it's just here and won't go away. I can't say that I have the word beginning in c. I can say, not without difficulty sometimes though, the word sarcoma - maybe because I'd not heard of it before? It is a Professor at the cancer hospital in London that will be doing the operation, I should just trust him to do it but I am very, very scared. If only it could be done tomorrow. and get it done with. Thank you for appreciating and understanding.

  • Hi Mary,

    I fully understand how you feel. As your date draws closer, this is all you can think of and although you are naturally frightened, you just want it over and done with, instead of looming over you.

    I have been through gall bladder surgery for a 3" gallstone. This appeared just as I was losing my mum to her battle with breast cancer, which had spread to her liver, lungs, bone and brain. Three weeks after her funeral I saw my GP, as I was having difficulty in breathing and couldn't sleep. I was still working in my own practice and seeing patients at the time. My GP picked up the phone there and then and spoke to the surgeon at the hospital and I was sent straight in to see him. The surgeon informed me that he was admitting me there and then, as I had Empyema (A pustular pleurisy) and that he would have to put me on intravenous antibiotics for 2 weeks, before he could operate. He then hit me with the fact that it was touch and go, as to whether they could pull me through or not.  At the first attempt of surgery 2 weeks later, I stopped breathing on the operating table and no surgery was carried out. After another 2 weeks of IV antibiotics, I'm pleased to say, that the second attempt was more successful and they were able to remove my appendix at the same time. Needless to say, this couldn't be done by keyhole surgery. It meant a full open Cholecystectomy and almost 3 months in hospital to recuperate.

    The reason that they lost me the first time was, that I apparently have a very narrow gullet and I now need fibre-optic intubation for any surgical procedure. This has made any further operations a bit more challenging and worrying. Again I have been fortunate so far, as I've had a further 9 operations since then.

    I felt like you about the c word at first, but this has changed over the years. One of the legacies of treatment for me has been Lymphoedema in both arms. I attend a Lymphoedema clinic regularly for monitoring of this. Initially I had to wear compression bandages on both arms, from shoulder to fingertips and I looked a bit like the man from the Milk Tray advert. It looked as if I had 2 broken arms, so everywhere I went, people asked what had happened to me. I eventually got so fed up with answering these questions, that I used to say that it was as a result of my Cancer treatment. I began to look on them as my badges of honour for coming through it all. I still wear compression sleeves on both arms and hands, but they don't look quite as dramatic, as the actual 5 layers of bandaging were.

    When my mum was diagnosed,  "the big C" was whispered about in hushed tones . Hardly anyone uttered the word. Perhaps this is why we, the public, know so little about it, despite the fact that it affects so many people? I hope that one day you will be able to talk about this openly and increase awareness of the disease. Diagnosis, treatment and after care have improved dramatically in recent years and more people are living with the disease, instead of dying with it.

    You have one of the most eminent surgeons in the country doing your surgery. He is fighting your corner. Put your faith in him and let him win this fight for you.

    I am always here if you want to chat.

    Kind regards,

    Jolamine xx

  • Hi Mary I just saw your message about moving to here so I thought I'd say hello I've been wondering how you were getting on, as Jolamine said that's quite a mouthful to write never mind repeat ,anyway reading your comments I picked up that you're feeling fine in yourself and keeping yourself busy going for a walk and eating well its good to hear ,as you say its a pity you can't be having the operation tomorrow instead of just thinking about it ,still the good thing is they can operate and you have top surgeons looking after you ,you're bound to be nervous who wouldn't be ,I hope the time goes fast for you and you recover well so that by Christmas you will be on the road to full recovery ,anyway Mary its good to speak to you again as Jolamine said we are here for you to chat with whenever you want to so stay positive it will help and take good care whilst you await your next appointment x

  • You have lived through traumatic times! I don't know how you coped.

  • Thank you. Do you know, I actually forgot about the sarcoma for a while day. It all felt quite normal, then I remembered again and, because I feel so well, I wondered if they were looking at someone else's biopsy and scans!