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I often feel guilty browsing the Mac site and wondering if I trully belong here, but have no where else to vent my thoughts and frustations at a condition cancer that isn't a cancer - if that makes any sense - given that the tumor's are agressive and invasive; can recur; but the big plus is that do not spread; and certainly where mine was located, is not life threatening. So before I proceed I apologise in advance if you feel I shouldn't be blogging here, simply press your 'Back' button and browse to the next blog post.
My recovery is going well, but I am so inpatient and can't wait to be up and about and getting on with life - quite literally I want to run before I can walk! After I'd overcome the vertigo and became stonger on my feet I was getting up and about a bit more (just around the house) but this caused increased swelling and pain; but I talked sense into myself stopped getting dressed in the morning and have had two duvet days with some great DVDs. I'm feeling the benefits already as there's only a small amount of swelling now and I've been able to cut back on the pain killers too. So I've presecribed two more days of the same, which may seem extremely indulgent, but I have the most wonderful and supportive husband who's happy to keep everything ticking over and children amused - as long as I don't boss (not easy for me).
My appointment on Tuesday went very well and the scar (although long) looks very tidy and is healing well. He feels that the tumor has been removed completely and he should have the final results back from histology next week, and will write to me confirming this as he doesn't think the original diagnosis to change. In relation to the future, recurrence of these tumors are common but given that they are rare it's difficult to say when they will or will not recur so it's 50/50.
Therefore he's suggesting that there won't be routine screening but if at any time I feel a lump then we can investigate it at that point. I think I am happy with this action plan but have decided that as he is an orthopaedic surgeon, not oncology, I'll discuss with my GP and see whether he agrees. I don't think I want to pursue another action, i.e. referral to oncoloy unless it recurs (which it still may not!). I think not least because the prognosis and treatment is not going to change at this stage, although in the US I know with recurrent tumors radio, chemo and/or hormone therapy has been used to manage them.
Other than that I've decided as soon as I can (probably another 4 weeks) I'll book some physiotherapy to build up the muscles this beast of a tumor destoyed followed by getting back into my normal exercise routines. I'm really missing the simple plesaures of walks along the shore in the sunshine, running club and zumba.
So thank you for sticking with me, tonight I'm simply putting my thoughts into writing - I may be able to get off to sleep now! I truly appreciate all the support I've had from my Mac pals here, I only hope you don't mind my interloping when many of your conditions are truly life limiting / threatening yet you have proved so generous with your time and kind words of advice and encouragement.
Thank you. Sian x
Another milestone on this journey has now been reached as my tumor was removed last Tuesday. The surgery took a little longer than they'd hoped due to adhesions in some areas; the areas around the the blood vesels were particularly tricky as it began to break apart and it had reached the sciatic nerve too which prolonged things a little. Certainly my main question at my post op appt tomorrow is whether they actually mangaged to remove it all as I wasn't confident given their description and was too 'whoozy' imediately after the surgery to ask then.
Despite being booked in for up to 3 nights, I fortunately only needed to stay one in the end which has been nicer for my family as it's a good 40 min drive to the hospital (each way) and it meant I got more sleep at night! The pain's not too bad as long as I take my various meds on time - separating them out to ensure I have a good coverage during my waking hours - paracetemol, diclofenic, tramadol. And as long as I don't do anything more than 'pottering' during the day then it doesn't get too sore, which is helped by the fact that any longer a couple of minutes on my feet causes me to feel dizzy and nauseous still - I think this is question number 2 for tomorrow!
It's nice to see the sun outside again but my 'classy' T.E.D.s make me feel particularly hot and sweaty and given that I developed a DVT last time I had orthopaedic surgery I daren't risk going against medical advice and stop wearing them too soon - especially as I have my daily dose of Clexane to remind me of why.
Trying to avoid sleeping during the day, so that I continue to sleep well at night but around 4pm I reach a stage where my body absolutely refuses to stay awake whatever I try and fall into a really deep sleep. I think today I'll smply go with the flow but set my alarm so that I don't sleep later than 5pm. I'm trying to keep my brain active (and positive) by keeping myself busy with a variety of things like reading, writing, puzzles, TV but find I don't have the attention span for doing anything for too long!
Oh well, I know all I need is time to let my body recover from the anaesthetic and the surgery itself, but I'm a very inpatient patient!
Other questions for tomorrow:
Despite the rain - and there was a lot of it - me and a few hundred others (maybe more) turned up in Winchester for the Race for Life; and it was amazing. My wonderful husband and kids got kitted out in full wet weather gear to be able to cheer me along. I ran all but 2 mins and finished (with a sprint) in 34 minutes 23 seconds (a PB by almost 2 mins). When the going got tough I made a mantra in my head of all my wonderful friends and families who have battled cancer, including all of you guys here - so thank you for your tremendous support, even if you didn't know you were giving it. As I sprinted to the finish line over it I felt a huge sense of emotion, a sense of achievement and satisfaction for many reasons.
So this afternoon I've enjoyed a very lazy afternoon on the sofa because during this next week I have a tremendous amount to get done before my operation on the 21st. In between work and family things I've squeezed in a few things for myself including a night out with my friends.
Yet this afternoon reality has also hit, in a large way as to why I chose to run the Race for Life. My nan hasn't been well over the last few weeks, and following initial blood tests there are anomalies which would indicate cancer maybe of the cervix, bowel or bladder (not sure if that meant one or combination). But even she says at 85yrs there's always something wrong with you! I love her dearly and she knows we'll be there with her every step of the way whichever way that battle will go. We'll know more when she's had further tests later this week.
Well Dr's confident about how to proceed in removing the mass. It's not near any major blood vessels and has well defined margins. He talked about the possibility it could grow back so will need follow-up MRIs in the future to monitor it and as time passes the likelihood for regrowth will decrease.
Some Drs have previously tried to reduce the potential for regrowth with wide area excisions, chemo and radiotherapy but it's proved inconclusive about whether this would actually make a difference or not. However his feeling is that it either will grow back or it won't and as it's benign in nature, i.e. only grows locally and won't spread, it would be a nuisance but is not life threatening, so will escape more invasive procedures to battle 'my beast'.
Planning surgery for four weeks time, with time to get things in order at work, run the Race for Life (12th June) and plan my daughters 8th birthday & party. Will need a 3-4 days in hospital and then home for R&R for a few weeks off - hope the sun shines!
Thank you to everyone here for sharing in my journey and providing me with comfort, knowledge and support in those first few terrifying and uncertain weeks; but I am pleased to share my positive story that it may offer hope for someone else should they find themselves in the same position as I was four weeks ago.
In the last hour I've felt such an enormous sense of relief - I hadn't apprecitated how much stress had built up over the last four weeks. After my walk yesterday I called the Dr's secretary who confirmed my results were in but as he was in theatre for the rest of the afternoon was unlikely to call me before Tuesday. So one more restless night and a long morning but I eventually received his call just before 1pm.
The tumor is benign - of which he is confident - called a fibromatosis, which more commonly develops in the abdominal area, but mine has grown in the muscle over my left hip - possibly related to my previous hip surgery (I have hip dysplasia). It needs to be removed as will continue to grow. Even excised there is a possibility that it could grow again in the same region. He couldn't reiterate enough that it was benign and not cancerous and therefore not life threatening.
He's now going to look at all the data and decide whether he can excise it himself or if he should refer me to someone with greater experience in dealing with tumors of this nature. So I will be seeing him Thursday morning to go through the detail and plan the next steps.
Just spent the last hour calling, texting, emailing and facebooking my wonderful friends and neighbours who have been so supportive over the last few weeks. Thank you to everyone here too, who has been sharing in my journey and have offered, love, hugs, thoughts and/or prayers - they have always been greatly appreciated and received.
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