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! 

  • 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.

  • I did only just a very little weeding - that was enough :-)

    Golden wedding - congratulations in advance.

    I'm sorry about your husband's skin cancer and hope he will be okay.

    Independence is very important, I'd like to see you on your scooter.

    Christmas is just the two of us. Last year I was far away.

    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

  • Hi Mary,

    I'm glad to hear that you're learning not to overdo the weeding and hope that you were happy with the result of the CT scan you recently had on your chest. 

    We are really looking forward to spending our Golden Wedding Anniversary with our family. It's not often that we all manage to get together, so this will be a rare treat. My poor hubby has so many medical problems, that his skin cancer is just one more to add to a long list. However, we're certainly hoping that he will be ok. As far as we can see, there's not much to recommend this ageing process!

    My scooter really is an absolute boon to my independence. Hubby has one too. We managed to get to a weekly meeting this afternoon and the theatre tonight. This morning, I used the car, as we had an appointment at the hospital.

    As I 've said before Mary, you always have my support and I sincerely hope that you'll still have it for a long time to come.

    Kind regards,

    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 :-)

  • Have you had your anniversary? Hope you are both okay?

    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 :-)

Reply Children
  • Hi Mary,

    I am delighted to hear that no changes were shown on your chest CT and I'm sure that this was a great relief for you. I hope that you both enjoyed your liver and bacon - that is one of my husband's favourite meals.

    We celebrated our golden wedding anniversary on Saturday and had a really lovely day with all of the family. We were extremely fortunate with the weather too, as it remained dry all day and only started to rain shortly after we arrived home, after our evening meal - I don't think that it has stopped since!

    Kind regards,

    Jolamine xx

  • I am so glad that your anniversary celebrations went so well. How is your husband?

    During my operation a vein was nicked which caused the blood to flow the wrong way in the liver. Luckily it righted itself. So, looking at the liver in the frying pan - hmm :-) Also, bacon I am supposed to either cut down on or not eat it at all, so I ate just a little of both the liver and the bacon.

    My birthday next month, that will be so different from last year's in hospital.

  • Hi Mary,

    We had a really special day from start to finish. We coped with the day by letting the younger family members head off on a country walk for a few hours, while hubby and I had a rest. He's not been great this week, but I suspect that this is just the after effect of our celebrations. He's got a CT scan this week and is having further blood tests, so we'll see what these show. 

    I now understand why you looked  at your liver in the pan askew and hope that you enjoyed your little bit  you had - a little of what you fancy does you good! I am sure that your birthday next month will be considerably better than it was last year, when you were in hospital.

    Kind regards,

    Jolamine xx

  • Hi Mary,

    I'm so sorry that I haven't replied to you sooner. I have just come across your post and I don't believe that I got an notification of this. Neither hubby nor I have been great for the past 3 months. We have both had recurrent respiratory infections, then my Diabetic blood glucose levels went haywire. Fortunately, additional medication seems to be helping, so we hope that we are picking up. Hubby has a lot of co-morbidities and we know that time is limited, so we try to make the most of the time we have left.

    How are you keeping? I hope that all is well with you and that you are enjoying the start of the better weather this week.

    Kind regards,

    Jolamine xx

  • I have just realised that I haven't replied to you, I'm so sorry. So far, so good, treasuring each day, until I forget to do so.
    How are you and your husband now?

  • Hi Mary,

    It's great to hear that you are making the most of each day.

    My hubby has had a rough ride since last November, when he collapsed. He was in hospital for a month with 5 broken ribs, a collapsed lung and Pneumonia. He was very frail after this and he tripped over a box when we were putting away the Christmas decorations and broke his collar bone.

    I haven't been able to get holiday insurance for him in the past 7 years. I finally managed to get him covered this year, so we set off on holiday to Madeira in March. The restaurant floor was highly polished marble, which created a lot of static and he had another fall. This time he broke his nose and couldn't put any weight on his leg. The nose is fine, but his leg is still very sore and not improving much. This was complicated by the fact that he has end stage heart failure and is taking a lot of blood thinning medication. We have attended hospitals in Portugal and the UK for this. At present, we are playing a game of "wait and see". If it doesn't settle soon, we have been advised to have a CT scan to see if he has an occult fracture of the hip. This doesn't show up on x-ray.

    They say that these things come in threes, so I'm hoping that we are about to turn a corner and start on a healthier phase!

    Take care.

    Jolamine xx

  • Oh dear! what dreadfully worrying times!

    Yes, indeed, let's hope the corner is turning for better times.