So where do I start?
More hospital appointments this month – all ok – muga scan was 64% which is still great, considering, and I also had a scan of my ovaries and yes they are there. Starting to shrink which is good as they are shutting down. More bloods, more needles etc. It gets to be normal after a while.
This week I’ve had my number 17 Herceptin! Wow. I am so nearly to the end of this treatment phase which is an amazing feeling. I wish I could bottle that feeling and give it out! But as you all know each treatment is hitting me harder each time. And yes, this was no exception – I feel rough! Every bit of me hurts and I feel like I’ve been buried under rubble! Good thing is I haven’t actually been buried under rubble and I hope I don’t have to actually experience that – but I am here – albeit laid up resting most of the day – needs must sometimes!
It’s like a catch 22 situation – if I rest which is what I need (I think) then my body seizes up. I am totally like a very old person now. My mind thinks I can bounce and cartwheel down a corridor but when I get up to move my body literally doesn’t co-operate. It’s a very strange feeling when I’m only 44. I know it’s not the same but it must be a similar feeling when you’ve been paralysed in an accident – your brain thinks you can do stuff but your body just doesn’t – so there’s always a worse situation. Anyway I am lucky because after a while my body kicks in – it’s just a bit slow and painful to start with, but then my joints and muscles warm up and off I go – bit like an old car on a cold day! To help I try and keep moving continually – I am such a fidget arse. Do you remember as a child when you were asked if you had “ants in your pants?” – well that’s me! So I make sure I sit for a bit and then rest a bit but also keep moving every 10/15 minutes. Yoga stretches work too before I try and leap – especially in the mornings! Takes a bit of planning though! I have leapt out of bed in the middle of the night for a wee and ended up crashing into the wardrobe as my legs didn’t coordinate – quite funny I suppose when I’m melting like an ice lolly from a night sweat too – I need to think before I leap up now!
I am honestly trying everything to help myself cope with the pain but without turning to the drugs – they zone me out too much to do anything!
So I’ve been rubbing a mixture of oil with a few drops of eucalyptus, peppermint and lavender essential oils into my joints every day – this is like a natural deep heat ointment. I’ve also been bathing in epsom salts and some drops of essential oils (rosemary, thyme and camomile are also really good so I alternate sometimes). It feels so good, I think if I was to be put in cryostasis (probably watched too much si-fi!), then this is how I would like to be preserved – in a hot bath with a lovely aroma just floating! I think a floatation tank would be quite good to try too or just to float in the dead sea! – I must add this to the list of ‘to do’s’.
My breast nurse thinks that the pain I’m in could be Arthralgia caused by the medication (exemestane) – I think she is right. So long as I can prevent my joints from inflaming it should be manageable as this will be in for the long term (10 years of meds!). I feel for everyone suffering with chronic pain! It’s draining!
I’ve also been tweaking my meals to help with joint and bone pain – this includes turmeric and ginger tea and added to foods. Magnesium – which is naturally in greens (I eat a whole bunch of raw spinach every single day!) and apple cider vinegar (which is amazing in itself so worth a try for so many conditions – check it out). And of course I’ve been trying my best to exercise and work through the pain – it’s been taking a lot of mind over matter but I must make myself – it works by strengthening the muscles to support and warm my joints – plus keep my bones supported too and protect them. But at the moment I’m not managing much more than a gentle yoga class or a swim. Swimming is one of the only things that really helps with the pain – so a little fishy I will be!
I’m also going to try dandelion leaves in a tea or in salads – they are meant to have great anti-inflammatory properties – I know the bunnies love them and we seem to be cultivating them well in our garden – just need to make sure Basil hasn’t done a wee on them!
Although it’s great that the big cancer has been cut away – there is so much more to this cancer recovery. It feels like it goes on and on for so long – it’s been a year and a half nearly now and I’m bored so you all must be! It’s not like you can just lay in bed for a week or so and then ‘ta da’ you’re all better – I’m in for this for a long while yet, and some more operations thrown in too that I will need to recover from. But getting to the end of each stage helps and it’s also great that people see me up and around doing stuff and looking good – thank you for telling me (even if you’re just saying it) as it does help – it’s good for my mind to have a purpose to make an effort to look ok and go to work, for myself and everyone around me. If I actually looked how I felt most days I’d be really scary! But just because I ‘look’ much better doesn’t mean I am better – there is no point in me resting in bed for weeks – I need to keep going! Although recently I have had to succumb to some time off work to recoup and we’ve not been able to socialise with many of our friends and family – it just takes it out of me far too much – sorry all – I am trying! And Bear Grylls and his quotes are still helping!
As for my stage of repair and recovery – I have just one more Herceptin to go – yay! Number 18 on the 15th June, monthly Zoladex injections (next one tomorrow). Over the summer I’ll have time to recover before I have an Oophorectomy (removal of ovaries and tubes). I’ve already had a phone call to see if I could have now as they had a free slot! The secretary that called me said the surgeon went through her list and jumped at the chance to do me! So it’s true! I really thought my surgeon was joking when he said his team would be fighting over my op! But it has to wait until at least end of September as I need to get over the Herceptin.
Also, the ball has started to roll for my risk reducing mastectomy too. This will probably be early next year so we have plenty of time. But I have to have some psychological counselling first. Will update more later as there is a long process for this.
So that’s where I’m at currently.
But we all know what life is like with it’s ups and downs – I’m sure we can all relate to the phrase “it never rains but it pours”. And just because I’m poorly myself doesn’t mean that I’m the only project. Oh no!
I know a lot of you will have seen from my Facebook posts but Lewis (my middle, 13 year old son) has been very poorly. All started by him either being bitten (maybe a spider) or catching his finger on something (maybe a thorn – who knows!) causing it to swell a few weeks ago – got seen by the docs but told not to give antibiotics if it went down after a day or so. It went down, so we didn’t, but then it swelled back up again very suddenly a few weeks later – very red and stiff. Went to doctors again and got antibiotics to cover him. Unfortunately they weren’t strong enough and the doctors were very busy so took 2 days for a call back. I felt such a bad parent for not taking him to the walk in centre but he didn’t have any other symptoms of a bad infection. Anyway rushed to A&E Colchester on the Thursday evening, given stronger antibiotics to cover until the morning. Then straight to children’s ward at Broomfield on the Friday, where
we saw the plastics team pretty much straight away. They were absolutely amazing! They said that the infection had gone through to the sheath of the tendon in his finger but they thought we had caught it early enough to avoid surgery. So poor Lewis was put straight on IV antibiotics for the next 3 days. And then home on Sunday with a week of strong oral antibiotics. The finger has gone down to almost normal but his stomach is so not good! Bless him. What a worry. So I am hanging! So exhausted – as us mum’s know – it is not a ‘rest’ being in hospital with your sick child – whatever age!
But to find a positive of all this – Lewis has reacted well to antibiotics so far and the infection seems to have cleared. Fingers crossed! – he can nearly do that now! But most importantly it’s his ‘trigger finger’ for gaming! He has to go back for a check up so just hope it doesn’t flare up again otherwise that would mean surgery.
Our time in hospital together also gave us lots of time to chat. When we’re at home we are all in different rooms, doing different things – like most families with teenagers I suppose – in and out crossing paths. We only chat and get together over dinner time really.
But Lewis and I had lots of laughs even in hospital – we are both chatterboxes! He got a bit sad as the cannula hurt more than he thought (he was ok though – because of his Reflex Anoxic Seizures he coped with the pain well and just went a bit pale). But it upset him the amount of needles I’ve had to endure and the point he hadn’t realised what it was like until now (and seriously I don’t think he has any idea really how many – I am a human pincushion!) Bless him – he was so sick and thinking of me! Emotional mum moment! But hey, I’m an adult – it’s not so bad and as a mum I’d go though it all again not to have my kids sick. That’s what has helped keep me going through everything – I’d rather it was me than any of them ever and this was a little reminder!
I managed to finish Lewis’ quilt – he loved it. So my children all have one each now…..
…. and while resting I’m into making pompoms….there is a resemblance to my hair! ha ha! I wonder how long until it stops growing outwards?
…. and with me being back at work part time we’ve managed to save up and get the Stag on the road and painted….I can relate to the stag – slowly getting sorted and put back together….
This is our ‘sunshine day out to the beach, rowing on the river, pub lunch or just out for a drive’ car. It’s happiness all in a car (when it’s working) – I still want a picnic rack on the back! Phil has worked so hard over the years (about 6!) to get it sorted – he is a happy husband! We just need some sunshine now!
….. and don’t you just love springtime….. it’s like a scene from Bambi at our house – we have chicks! so cute (until they all grow up to be boys and they start cockle-doodle-doling and annoying everyone!)
…. it helps!