Recurrence

Hi Sparky.

Sorry to hear that. I had a uterine leiomyosarcoma last year and had a full hysterectomy to remove a 19cm sarcoma. I had recurrence in January, and it was already 7cm, so I’m having radiotherapy at the moment, to hopefully shrink it. They won’t remove it as it’s too close to my bowel. 
Good luck with your surgeon, and hope it’s not as bad as you are thinking. 
jane x 

Thanks for your reply Jane. I'm sorry you are still going through so much. It seems like you have been going through one trauma after another. I think I was beginning to feel a bit hopeful that my six monthly scans might be coming to an end for perhaps yearly ones, I was becoming physically stronger again, coping much better with pain and dropping to very small dose of pain relief when wham!! Hey!! It's back to square one! I honestly feel like the past 2 and a half years of struggle to get back to some kind of fitness and a 'normal' life have been a complete waste of time! As far as I know surgery is the only option. I just hope the plan is to get it all out this time as long as my femoral nerve is ok. It got cut during my last surgery. What if they cant work on or near the nerve this time? Will I have to keep having surgeries? What about the potential for metastases? Uggggh, so many questions, what ifs etc. My head is driving me mad!

Hi Sparky

Yes, it’s not been easy, it feels never ending, and not much light at the end. 
That must feel terrible for you too, to get so far and then to feel you’re back to square one, when you thought it was going to get easier.

I hope you can have surgery, and find out soon, what your options are. I know how traumatising the waiting is. 
xx

Thanks so much Jane. I am hoping to get an action plan soon. Good luck with your radiotherapy. It will be good to get your treatment underway. I can't imagine what that sort of treatment is like but at least you are fighting, you are strong! Hugs

Sparky xx

Hi 

How’s your plan going, do you have one yet?

xx

Hi Jane, thank you for asking. I have seen my surgeon who agrees with me that surgery very soon is the best course of action. He is going to ask for advice about part of scan which might be showing a second area of recurrence or maybe that the clear recurrence  is actually bigger. The 2nd bit isn't as clear as the other bit. Does that make sense? So no biopsy, straight to surgery. It looks as though my femoral nerve/psoas muscle is going to be scraped and aggravated again meaning lots of pain and walking probs again. Very disappointing as I am nearly off all meds now and exercising lots. Also, the 2nd bit is very close to, possibly adhered to colon so theres a small chance of removal of colon and a lovely new bag! Woopie! I feel as though I'm in a nightmare I can't wake up from. Have started telling family, friends and while I'm gutted others are being cool about it, almost as if it's boring news! I don't want anyone to be upset but maybe a bit more caring? Is that a selfish thing to feel? Anyway I do hope you are coping ok. How's your treatment going? Hugs, Sparky xxxxx

Hi Sparky, it sounds like you're going through a horrible time. It's disappointing when your friends and loved ones aren't being supportive. Before my sarcoma diagnosis I'd never had a friend with cancer so I don't know how I'd have reacted to the news but I hope that I'd have been there for them. A couple of friends have fallen by the wayside but most have been supportive although I try not to talk about it too much. I hope that everything goes as well as possible for you. I'll be thinking of you. Deb

Hi Sparky. 
It’s good that you are getting surgery again, not good, but you know what I mean. 
I can imagine how upsetting it is, after recovering so well, then starting again. Hopefully recovery will be better this time, as you’d got yourself nice and fit beforehand, this will help massively. 
A bag is scary, I’d have to have that too if they would remove my tumour. My dad always jokes and says ‘but you can’t get the shoes to match’  He always makes a joke of everything to try and cheer me up. 
Are you married or in a relationship,  are they supporting you?  Sorry if that sounded nosey. 
Friends and family are a strange thing to deal with, as all react soooo differently. I’ve just told my closest two friends, but one wants to know everything and the other, just asks how I am every few weeks. It’s not selfish at all, we are going through such a lot, and emotions will overwhelm us sometimes, mine certainly do. 
My treatment has finished now and it was ok tbh, I feel ok, just have a dodgy tummy now and again. 
Just waiting to have a scan in a few weeks to see if it’s reacted at all. Blinking petrifying   

Hugs to you too. 
jane xx 

Thanks Deb. It's hard to think about anything else isn't it? It get overwhelmed quite regularly, have bit of a cry and then try to carry on. I have told my closest 2 friends and a couple of members of my family. Also my 3 grown up step children and of course my daughter. It's  been a mixed bag of reactions really, I guess everyone has their own problems. I have always kind of kept myself to myself in a lot of ways, always keeping emotions at bay until it's just me and my lovely husband alone at home. We are quite an independent couple and spend most of our time looking after everyone else, elderly in laws included. I suppose we always play our problems down a bit so maybe everyone thinks we're ok and getting on with it. I especially don't let on to my daughter (23 yrs old) how scared I am as I think that would really frighten her. She does know I'm a worrier though and she knows everything I know so far. I guess she is handling it in her own way. I am really proud of how strong she is. I need to be more like her! It is so hard waiting for news isnt it? I have always been a big 'planner' so I'm feeling a bit uncomfortable not being the one in charge of my life. I have been here before though so I need to get on and practice even more Mindfullness and just focus on each day as it comes. Thanks for your support Deb. Hope you're doing ok. Sparky xxxxxx

Hi Jane, tis horrible waiting isn't it? I'm just trying to keep busy, keep exercising when I can and thinking of lovely things to do when I'm over surgery. My Step-daughter is getting married in August, finally, after 2 covid related cancellations and I've promised her a beautiful wedding cake and to join in with the dancing at the reception! So I have a lot to look forward to and have to keep trying to get through every day whatever emotions pop up. I keep thinking about my own daughter and just so badly want to see her married too! She's amazing. I am lucky. I have the best hubby too. I really don't know what I'd have done without him these last 3 or so years. He's so patient! I do love what your Dad said about the bag and shoes, it made me chuckle, so thanks for sharing that. No, you didn't seem nosey! I don't have a huge wider family, which is sometimes a blessing and sometimes a bit lonely. Neither of my parents are in my life, haven't been for 20 and 30 years. They're horrid people so that's good. But I do envy friends with loving parents, even though I'm 52!! I do have a lovely Uncle, Sister and Nieces as well as 3 grown up step children, one with kids, and of course my fab daughter and husband. I am just a bit shocked still I suppose and a bit self absorbed. I guess everyone's  reactions are normal and I need to get a grip and stop being selfish. I do hope the next few weeks fly by for you so you can get your results and relax with some good news. Are you able to get about ok, work etc? I'm sure your family keeps you pretty occupied! Hugs to you. Sparky xxx