Had my appointment yesterday as a whole two weeks had flown by since I was taken off the trial drug for a while (see here for the post) Anyone would think we've had Christmas or something since then.
Well the good news is, the head honcho of the trial and my oncology consultant, doesn't believe the trial is the problem. If it was, I would also be suffering with similar symptoms in my hands. I'm pleased to say I'm not, I think I would find that quite distressing. I can ignore toes, but fingers? Nah, I don't think so.
So, what is it?
Well, regular twitter and Facebook friends and readers of the blog, do you remember the saga of #BrokenBum? You know, the one I whinged about for months to anyone who would listen (and plenty who didn't!) The one I visited my GP about several times and would told it would just get better? Well, it did actually get better, after 15 months, so they were right on that score (although it pains me to say it) However, it might also be the cause of the numbness. As it healed, resulting scar tissue may be pressing on nerves which run through the coccyx, making the tootsies feel like pin wielding fairies having a field day.
Simples! And I may not have been a hypochondriac after all!
And even better, he's prepared to investigate why, so I'm now waiting for an MRI scan. When asked if I had any metal anywhere I replied with "no, and no homemade prison tattoos either". He laughed, so must be a House fan. Either that or he was just being polite........
Either way, I'm to start back on the drug next week, so happy days. Now all I've got to do it find a way to keep the fairies at bay........
18 Month All Clear
Fabulous words to hear at my appointment today! Great news, I'm very happy. It even helped when I went to Slimming World weigh in and I'd put on five pounds. Just didn't care, didn't give a flying f*ck. The good news today was, I've had the all clear. Again.
It's not without some reservations.
I'm part of the Sorce Drug Trial (click link for details. In my eyes it's a wonder drug!) which means I get regular check ups and looked after really, really well. I've actually been told to stop taking the drug for a couple of weeks, due to concerns with magnesium and potassium levels (aren't they the two elements which in Chemistry lessons we'd set fire to with glee and bright flames??? No idea what they're needed for in the human body, hope I won't be going up in flames anytime soon....)
But also because of damage in my feet. My toes and balls of my feet are numb, they don't feel like they belong to me. And you'd think being numb, you'd feel no pain and be able to wear those killer heels with no problems. Wrong! Heels are killers, but not in a good way.
And although numb, they hurt as well. It's hard to explain, but imagine the start of pins and needles, combined with frozen toes. And remember how it felt to come inside from throwing snow balls and your hands start to thaw out? They smart a bit as they warm through. It's that. But add onto that breathe taking cramps. You know the ones, which make you sound like a plumber giving you a quote "Shffffff, that's going to cost you ....' All of that on bits of your body which don't feel like they belong to you when touched to actually check they aren't on fire, frozen in ice and/or with tiny fairies sticking pins in them.
Did I mention a 'favourite' time for this is 4 in the morning? You getting the picture?
Well, that's my tootsies. Most of the time.
Regularly I walk out of my shoes without realising it. Not so bad in the middle of the hallway. Not recommended in the middle of the High Street. And it's very annoying climbing into the shower still wearing the socks I couldn't feel! Not a great look
Also had to explain to my Danish Doctor what ' No shit Sherlock' meant when he said I may have some damage, which caused a few giggles.
Back in two weeks, more blood tests and decisions as to wether the damage is permanent or not and if I can carry on with the drug.
However, that's ok. I got the all clear and that's what matters.
It's been far to long since I last linked up with Michelle from Mummy From The Heart and her wonderfully inspiring Reasons to be Cheerful. I couldn't have gotten through the last couple of years without a positive outlook and silver lining thinking. Reflecting on the past week is a great exercise in keeping sunny and powerful.
I haven't stopped keeping topped up with positivity, just the recording of it. For some reason I felt compelled this week, and I usually go with my gut ( keep the comments about the size to yourself, those of you at the back!)
The weather has lifted everyone's mood I think. My internal temperature control is way off at the moment (its the drugs is my usual lament) Normally I'd be a sweaty Betty (not pretty) but as I'm usually cold, the heatwave is making me just right. I still can't go out in it, still too high risk for skin cancer from the drugs, however it makes me want to start walking again.
Had a fabulous couple of weeks at work, a simply brilliant work conference which has inspired and lifted me. I'm full of ideas to implement and make some changes. It's wonderful to spend time with like minded people and make connections.
I've been told I know everyone, it's not true by the way, however I was surprised by how many familiar faces were there. Plus plenty of new friends to make. All helped by the fact it was held at Alton Towers!
I indulged in my love of exciting rides with wild abandon, forgetting the fact I'm a middle aged woman, getting over cancer! There's life in the old dog yet.
I was also proud of myself on Monday, when it became evident I'd made a big mistake a work. The old me, would have beaten myself up, made myself feel terrible for the rest of the day. However, I sucked it up, and gave myself a talking to. I literally said, forget about it and move on, don't let it ruin anything else. And went on to have a productive, fruitful day and was happy and chipper once home (which certainly pleased MrC who does get the brunt in bad days. But then I think that's in the job description, you're there for your partner no matter what)
And the real reason, the heart of the cheerfullness? It's plainly obvious I'm on the placebo. My drugs trial was designed with three groups, group one which are on the placebo for three years, group two on the drug for three years and group three on the drug for a year and placebo for two.
I'm guessing I'm group three ( I won't know for definite for eight years when the study concludes, but to me it's obvious)
My hair is growing back, my feet are less sore and the feeling of fatigue is lessening. It all means I feel better. There's a part of me, a little bit sat in the corner worried that I won't have the same cover of the cancer coming back now I'm not taking it. But. And it's a big but. I CAN'T CHANGE THAT. So I can't let that dominate.
What will be, will be and the meantime enjoy the good times.
I've decided for this post to turn things around, examine the stuff going on and take a look at things from another point of view. Following my post about having to stop taking soranifeb (I'm on the Sorce drugs trial) for a couple of weeks, I thought it was only fair to flex my glass half full side of myself. The Me which reframe's and looks at the brighter side of situations.
If you don't know what's be going on you can take a look at the post by clicking here
- Firstly I've always known what a wonderful bunch of people I hang out with on Twitter and Facebook, but the positive comments, page views and tweets have blown me away. Sometimes I forget how absolutely fabulous you all are, and take you for granted. You really made a difference and made my feel so lucky and loved.
- I also got a chance to chuckle at the sensible, bizarre and funny comment from brother too (let me know what you think!)
- Okay, so I can't take the tablets for a couple of weeks, but there are benefits to that too! No need to stress about taking them out with me.
- They have to be taken on an empty stomach, so two hours after food or one hour before, as close to 12 hours apart as you can. Sounds so easy doesn't it? I love my food, I've found it hard. Say no more. But for the next two weeks, if I want a snack before bed, or a hot milky drink I can!
- No more alarms on my phone to remind me to take the morning dose at 11am. Excellent!
- Hopefully by giving my body a break from the drug, the side effects will subside too. My feet won't hurt anymore and I can go for a long walk. I enjoyed them so much when I was recuperating after my hysterectomy. The dog is going to love me again :)
- My swollen tummy will go down and trousers will fit again (just in time for the Christmas party too!)
- No more stomach grumbling noises and anxious looks to make sure the toilet is free.
- No more mad dashes to the loo at all times of the day. Maybe I can attend a whole meeting without excusing myself (the worst meeting I had to leave twice in hour)
- I can unpack my 'in an emergency replacement clothes' bag for a while too!
- Maybe my energy levels will increase; I can give the gym a visit or two and stay awake past 10.30pm
- Also the pins and needles in my feet at night will subside, no more wiggling to wake them up.
- I can post and link up with Michelle's reasons to be cheerful linky, I've missed you!
And the best reason? It's given me the chance to look properly at the situation; it's not the end of the world and do what I do best and see the silver linings.
