Update on me (Lemongrove)

I understand a few people have enquired about me, so thought I would post to avoid repeating things.
Just before Christmas, the seroma that I have had for the last three years since my MX, became infected after yet another aspiration at the Princess Royal. Anyway, amazingly they sent an ambulance from Sevenoaks in Kent, all the way out to Sussex, which then took me up to Charing Cross Hospital. Unfortunately once in hospital the infected seroma ruptured, leaving an enormous puss filled hole in my chest, and because all the tissue had dissolved they told me it would never heal on it’s own, and that plastic surgery was the only option.

In addition to this, because I had passed out at home, they did an MRI of my head, and discovered that I have 5 brain mets - so repair of the seroma became an emergency, because it’s not possible to have chemo if you have an open wound. Consequently, having gone in with an infected seroma, I suddenly found I had serious progression and required emergency surgery (so off I went to theatre, where they performed a trans flap op (muscle from the back was posted into the hole).
Unfortunately, when I went to theatre, the anaesthetist couldn’t find a vein, so had to put the anaesthetic through my portacath. That was fine, accept that it seemed to then block my port, and which necessitated another op to replace the port. The problem then was that as they couldn’t find a vein to put a general anaesthetic in, and my port was faulty, I had to have the replacement done by local. Thankfully I was so drugged up and delirious from the infection, I wasn’t really too aware of things.

Anyway, after 3 weeks in hospital with continuous IV antibiotics, 2 operations, and 5 blood transfusions, I’m home and feeling fine (thank you Charing Cross you’re fantastic). My wonderful Prof, has now got funding approval for Lapatanib for the brain mets (as it’s one of the few drugs that can cross the blood brain barrier), and I’ve been on this with Capecitabine for four weeks now. They are also doing MRI’s every few weeks to check what’s happening with the brain mets, and if the Lap/Cap combo hasn’t stabilised things, or shrunk them, they are going to do stereotactic rads. Initially they were going to do whole brain RT, because they thought it was in the dura as well (membrane), biut it isn’t, so stereotactic is the way to go, because it spares healthy tissue and so can be given at a potentially curative dose. I hope I can now have a break from all this. Better still, I hope God see’s fit to heal me and all of those who are suffering from this cruel disease.

Posting as this thread won’t appear in latest posts otherwise. So while I’m at it, love and best wishes to all of those with secondary BC

Hi you certainly have been through a tough time, I hope now spring might have finally sprung you will start to feel much better and mend. You are a real inspiration to so many in here with your posts and knowledge x

((hugs)). Glad you are feeling so much better now. Pamx

Goodness Lemongrove what a terrible time you have had. The Charing Cross do sound like they are on top of things though so hopefully you will see some improvement… Hope you can get plenty of rest and heal and enjoy the start of spring when it eventually arrives.
best wishes

I’m so sorry to read your news Lemongrove but I hope you will get some great results from the Lap/Cap combo and not need the stereotactic rads. And some stable, peaceful times are just around the corner for you. Take Care, Good Luck, Belinda…x

We were in Charing Cross together over Christmas/new Year and I so admired your courage and ‘can do’ attitude. It was good to catch up on your latest (I phoned John last week and he told me you were out, sorting things as usual. Typical!) I agree, you are in excellent hands at this hospital. I am dismayed that the A and E is under threat of closure as it was through that Department I was admitted.
Thanks for your good advice. As you can see, I have joined this Forum and feel supported by the many members who contribute. For some people like me, secondary breast cancer is a total shock and a steep learning curve. To hear that others are bashing on, making the most of their lives and sharing experiences is a wonderful thing.
i hope the better weather will help you get stronger and keep the updates coming.
x Susan

Huge Welcome back Lesley ,We have ALL missed you! , like carrie says , you are a real inspiration to so many on here with your posts and knowledge , youve realy had an awfull time of things of late, but you are a fighter pet and fighting is what you do best so keep on sticking those 2 fingers up to this horrible vile desease. We are all behind you lesley and wishing you all the very best.
Love and hugs to you, Linda x

Great to see you posting again Lesley. Sorry to hear you’ve had such a tough time. Glad to hear you are feeling better. Very best wishes for your treatment. Della x

hello Lemongrove, glad to see you back. Have not been on here much myself till recently.Sorry to hear of the seroma issue and also the brain mets, but glad that you have had such good care and that you are in good spirits. Hope all goes well with the chemo. Love and hugs, xxx

Good to see you posting again - you were missed. Not so good abouth the brain mets but if Cyberknife does them like it did your skull you’ll be a very happy lady I’m sure. It’s a bit frustrating that the seroma had to get so bad before it got a proper fix - they’ve been B’ing about with that for as long as I can remember. But at least its hopefully behind you now.


Thanks for the update on your treatment Lesley. You have been through the mill. I have had 18 months of relentless treatments operations and scans and blood transfusions etc and I could do with some good news for a change. So glad that you are back posting.Hope your health continues to improve. A hug from Val.

No wonder you have been quiet!! Keep battling on as you normally do and hopefully things will take a big turn for the better. Good to know that you are under a great oncology team x
Suzanne x

What an awful time you have had,you certainly deserve a break from this crappy disease.Sending you my best wishes and cyber hugs,love and best wishes,

Broomsticklady, you’re right. The Princess Royal in Haywards Heath did my MX almost three and a half years ago, and I have had a seroma ever since. My feeling is that the PR should have referred me for plastics when it became apparent that the seroma wasn’t resolving, but instead they carried on aspirating. I do feel let down by them, but then the reason I transferred my Oncology treatment to Charing Cross in the first place was that I had no confidence in the PR ( I always felt - rightly or wrongly - that being a patient with secondaries, I was regarded as a waste of limited resources). That may be grossly unfair, and others may have had a completely different eperience, but that’s how I feel. Anyway, it doesn’t matter now, because Charing Cross have sorted everything out, and I never have to go back to the PR.

Ponsmuir (Susan), I have just read your post - how wonderful to hear from you, and what a small world. You did so much to keep my spirits up when we were both in 6 South ward at Charing Cross over Christmas, and I have been thinking about you. I had no idea that you phoned recently (just mentioned it to John, and he said oh yes - sorry I forgot). I will send you a pm with my email address, and perhaps if our appointments converge, we can meet up for a coffee at Charing Cross. Hope you are doing well. You’re in great hands.

It’s good to see you back Lemongrove. I’m sorry to hear about what you’ve been through recently but glad that your team at Charing Cross are doing a good job and that you’re feeling better. All the best with the Capecitabine and Lapatanib combination - hope it means you can keep rads in reserve for a long time.

Tournesol x

Dear Lemongrove
i have followed your posts for many months (years). Hmm what a fecking iatrogenic epsiode you’ve been having. I’m so pleased you’re still with us and still fighting (not that I personally like the fighting metaphor - I prefer to think that we ‘am’, what we ‘am’). I am very seroma-prone like you. Your post has made me think that I shouldn’t indulge in the sort of cheery exchange I have with the surgeon at the moment of ‘betting’ how many mls the next aspiration is going to be - it was 480mls last week, after 400 the week before. Next week I shall ask him what the bluddly hell is he goin to do about it.
Truly, I am rootin for you sister,

Welcome back Lemongrove. Sorry to hear about the hard time you’ve had recently and the discovery of brain mets but glad to hear that you are on the road to recovery and that you have much confidence in your oncology team. Such an important factor when we are faced with ever changing treatment decisions in this ongoing battle. Sending you my good wishes and cyber (( hugs)).
Liz x

Lesley I am just catching up on posts from my hospital room at Kings College and am shocked to read what you have been trhough these past few weeks. It is indeed, as you say, a cruel disease attacking us without warning or notice! Glad to hear you have been put onto a good chemo regime and pray that this combined with the stereotactic treatment will bring you some stability in your life and time to enjoy the grandchild/