Liposarcoma - have moved from Pre-diagnosis

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

Parents
  • Hi Mary I just wanted to say "Happy Christmas"  and to wish you all the very best on your recovery and for the new year ahead , as Jolamine said we think about you often wondering how you are doing ,Best Wishes to you and your husband  

    Jenny xxx

  • Thank you. I was told that, although the operation (7 hours) was successful, there were complications afterwards. I was in clinical care twice with dialysis the second time for a while. Was there for five and a half weeks. Back home now, full recovery 3 - 4 months. I had no idea how weak and tired I would be. Thank God for good surgeons! 

  • Thank you very much and for sharing my journey.

  • Thank you. I have been trying to do gentle gardening but sometimes forget. Thank you for being with me on my journey.

  • Thank you for being with me along my journey. You, Jenny and others have been reading and posting and watching and waiting. It has meant so much to me.

  • Thank you very much for your support.

  • Hi Mary its so lovely to hear from you , it seems like a life time away from when I first saw your posts but I'm really glad I was able to follow your story from beginning to end ,its strange how you just click with some people and realise you would like to know how certain people get on and keep wishing  them the best and after all the waiting and ups and downs you ended up with the Top Surgeon in the Country and he did you and himself proud ,I'm so glad it was a good outcome for you despite the long long recovery and I hope you are still getting stronger every week Mary and are able to do a few more things by now ,keep pushing ahead and I hope you stay as well as you possibly can ,take care Best Wishes and please stay in touch I love hearing you are doing well x

  • Hi Mary,

    You are always in my thoughts. I know just how difficult it is to keep up with your mail, when you're not feeling 100%, which is why I try not to pester you too often.

    You have had a long and difficult journey, but It sounds as if you are recuperating well. I am delighted to hear that you are managing to do some gentle gardening, but do be careful not to overdo things!

    Please continue to keep in touch and remember that I am always here for you.

    Kind regards,

    Jolamine xx

  • Thank you. Yes, I am so, so lucky that I was referred to that top surgeon. I had my routine blood test today, for my one kidney. The poor nurse couldn't get enough blood and had to have a try in three different places!
    I tire more than I realise I will, then rest until I feel like standing up again :-)

  • Thank you. I try to listen to my body and not overdo things, but my body doesn't always tell me when it's had enough! I think I am being more sensible and not trying to jump before I can walk.

    I planted two little white geraniums the other day, ones that Chris had grown in the greenhouse. That was enough. There are five more to be planted, in due course. One day at a time.

  • Hi Mary,

    You sound like I was - desperate to do things, but I’m glad to hear that you are listening to your body - or at least trying to! 

    It’s always a joy to plant flowers which have been home grown and I’m sure that you will both enjoy the end result. Your geraniums should thrive in this good weather. As for the other five plants - tomorrow is another day. 

    l’m glad to hear that the nurse eventually found some blood and hope that the results are good. I have to have all of my bloods taken from my foot, as a result of my bilateral lymphoedema. It’s unusual for the nurses to get any blood until they’ve had 4 or 5 attempts - I’ve even had to return on another day, when they’ve failed to get any blood at all the first time - it can be a sore and frustrating experience!

    Kind regards,

    Jolamine xx

  • Hi yes quite remarkable the way it turned out ,it had to be, if there hadn't been delays you might have gotten someone else but its great to know you're enjoying life and planting flowers in this lovely weather,  the way the months are going it will be Christmas before we know it ( groans ) lol  ,here's hoping your blood test is good I'm sure it will be , as Jolamine says enjoy the little things but rest when you have to onwards and upwards for us all  take good care Mary will speak soon no doubt x

Reply
  • Hi yes quite remarkable the way it turned out ,it had to be, if there hadn't been delays you might have gotten someone else but its great to know you're enjoying life and planting flowers in this lovely weather,  the way the months are going it will be Christmas before we know it ( groans ) lol  ,here's hoping your blood test is good I'm sure it will be , as Jolamine says enjoy the little things but rest when you have to onwards and upwards for us all  take good care Mary will speak soon no doubt x

Children
  • Christmas this year will be so different for me! Lovely sunshine today.

    I posted again here, in a way, to let people know I am still here and, perhaps, to give people hope.

  • Hello Mary its lovely to hear from you again and that you are already looking forward to Christmas ,mind you this year has gone so fast it'll be here before we know it ,it sounds like you are enjoying the lovely sunshine we are abroad at the minute getting some sunshine ,you can't beat it for making you feel great ,its really thoughtful to keep posting how well your recovery is going considering what you went through ,like you say it does give people hope when they read peoples stories ,I see you posted a little message for  Jolamine as well ,no doubt she'll see it soon, anyway Mary its lovely to speak to you keep going with the improvements every day and we'll speak again soon xx

  • Hi Jenny,

    I'm delighted to hear that you managed to get away on holiday and I hope that you haven't been affected by some of the flooding across Europe.

    Kind regards,

    Jolamine xx

  • Hi Jolamine its good to hear you've found ways of getting out and about , there's always a way ,some of these motor scooters you see advertised on the TV look really good , we're in Majorca and I've seen quite a few people using them here , I think we have dodged the weather that's forecast for here from Saturday as we go home tomorrow but there's a lot of thunder and lightening forecast ,anyway Jolamine take care and enjoy the remains of the Summer xx

  • Hope you are having a lovely holiday. My recovery is my holiday, I tell people :-)

    I had a CT scan on my chest recently to check the nodules.
    I wanted to send a message saying thank you for your ongoing support but couldn't find a way to do it.

  • Hi Jenny,

    I'm glad to hear that you're enjoying your holiday and escaping the wet weather. We've certainly had more than our fair share of rain, while you've been away. I have used a mobility scooter for the past 10 years or so. Although I felt very reluctant to use one at first, it has given me back my independence and opened up a whole new world to me. In fact, we've just returned from the theatre tonight and even use it for that.

    Jolamine xx

  • Hello Mary its lovely keeping in touch ,yes we had a lovely holiday thanks ,it wasn't so nice coming back to none stop rain but at least the garden doesn't need watering ha ha ,you must be glad to have gotten the CT scan over and done with and found the results favourable ,long may it continue , a good friend of mine has a scan every 3 months she goes again next week I'm hoping everything is good for her again this time ,

    Its a pleasure supporting you Mary ,its been a long journey for you and an interesting one I imagine ,from all those delays at first ,to being treated by the finest surgeons in the Country ,its strange how things work out , as you say Christmas will be very different this year than last and I hope its a very happy one for you and your husband , enjoy the sunny days fingers crossed we get a few more ,the sun is very good for everyone in many ways ,look after yourselves and stay in touch ,

    Best Wishes Mary  Jenny x

  • Hello Jolamine we had a good holiday with plenty of hot sunny days ,soaking up vitamin D to last throughout the winter , I was saying to Mary we came back to a full day of rain what a contrast ,Its great to hear you and your husband get around on the scooters and that you can visit places more easily ,I thought you'd just started using a scooter recently I didn't realise its been many years but they are very helpful for many people even to do shopping and visit places of interest and I'm sure it was great to get to the theatre comfortably and safely ,Best Wishes to you and your Husband Jolamine x

  • The chest CT showed no change in the nodules so that was a relief!

    My husband said I was brave yesterday because I cooked liver and bacon :-)

  • Hello Mary I'm so happy to hear there were no changes showing on your scan it must have made you feel on top of the world you and your husband , Liver and bacon sounds lovely although I've never tried it but I can almost smell it cooking ,I love bacon but it has to be crispy ,it sounds like you are starting to get back to normal with cooking etc by the time Christmas comes around you'll be really looking forward to cooking Christmas dinner ,it will be a lot different to last year you've come a long way and I don't know about you but for me the year has flown over ,lets hope the weather stays mild ,if only the rain would take a break lol ...x