Sorry I’ve not been able to update everyone sooner. It’s been a busy month!
Firstly I’ve managed to get back to work which is brilliant! For me mentally anyway! Physically I am absolutely shattered – I can only compare this to the fatigue you get in pregnancy when you could actually fall asleep standing up anywhere! It doesn’t help that I don’t sleep well anyway due to the hot flushes on and off all night long due to super induced medical menopause and the bone and joint pain I’m in! But luckily my work colleagues are very supportive and tolerant – can’t thank you all enough. Working is really important to me – I’ve always been a worker – I like work. It helps us as a family financially – which means we can do nice things and treat the kids which in turn makes me feel good. But it most importantly gives me a sense of some sort of normality – it helps me forget my ‘cancer’ life for a bit each day and focus on helping others. I’m trying to look better than I feel but my friends are beginning to see though this now – I try my best not to let them see the pain but it’s been really difficult this month. I will not give up though! No way!
It’s also helping that I get some Personal Independence Payments (PIP) now. As a lot of you know we fall into a loop hole where Phil earns that little bit too much (but not really enough – but what is ever enough eh?), and because I worked part time I hadn’t paid national insurance for the 2 years previous as I didn’t earn enough so we haven’t been entitled to any financial help when we really needed it. Luckily my friends and family have all helped us out through the really tough times. But as I’ve been poorly for quite a while now and with the side effects of the medication and more operations I now get a few hundred pounds extra a month – this makes such a difference as it takes the pressure off me and means I can continue to work part time without feeling guilty that I’m not – if that makes sense?
I had my hair cut, although it’s grown loads already since….
Nathan got some brilliant GCSE grades which has enabled him to do the courses he wanted at sixth form college – maths, applied science, biology and media A levels – he’s happy and seems to be enjoying college much more than school. And I am the proudest mum EVER! For him to do so well while also dealing with our home life is just amazing. Well done Nathan x.
Lewis and Freya are at Honywood and both seem very happy and working hard – again proud mum moment! I couldn’t ask for more from my kids and I find myself overflowing with emotions sometimes – I think this could be the hormones too!
We’ve managed to clear out lots of ‘stuff’ in our loft which I’ve wanted to do for ages – it’s amazing what you can get rid of when it’s for FREE! Feels good too and I’m slowly getting things sorted.
Our caravan has gone to some lovely new owners which makes it all a bit better. And Freya and I made a beach in our garden to remind us of Cornwall. Our banana tree we bought in Cornwall is happy and growing!
My mum’s house continues to be built in Colchester – this is my main ‘happy’ focus at the moment – I literally can’t wait to have my mum nearer to me – I am so excited! She’s going to be equidistance between us and my sister which is perfect! My brother can’t be persuaded to move to Essex but he’ll visit lots I’m sure!
We celebrated Lewis’ 14th birthday at Chimichanga’s restaurant. Unfortunately I didn’t feel very well but it was still nice to go out with my family.
My boys have such a great sense of humour – as you can see Nathan bought Lewis a great birthday card and some long socks! So funny.
Poor Willow has had to have an operation on a huge abscess on her neck – yuk! and a cut leg! She’s been in the wars but she’s getting there and she’s super brave! Never a dull moment in our house.
So for me medically……
It’s been busy and a juggle – I am like my own Project Manager for my medical care. Departments in the NHS don’t tend to cross very well – and definitely not between hospitals! So I spend a lot of time rescheduling appointments that now have to fit around work as well as family life. I am busy – my ‘rest’ day off every Wednesday should be renamed ‘super-busy-cram-everything-in-day’. This week I have especially felt lucky to have such wonderful friends and family that help me out. Although it frustrates me that there is never enough time to actually organise to see everyone – thank goodness for Facebook eh?
Just one example though – I needed to get my bloods taken for my upcoming surgery but the GPs was fully booked (they can usually sneak me in somewhere and they are really good but they just couldn’t this week). But it has to be done before 11 to get to the hospital and I only had Wednesday or Thursday and I really didn’t want to have to go to Colchester General AGAIN! So I cheekily asked if any of my nurse friends could do for me. Wonderful village people came up trumps and volunteered to help! Just overwhelming. I could write a book of all the good stuff people have done for us – really helps to outweigh the bad stuff I’m going through! So my mobile ‘Vampire’ phlebotomist did me a home visit.
I’ve been having physio and acupuncture to help with the pain. This has all come about from the car accident a few months ago. My neck and upper back were fine before but since the accident I’ve been in loads more pain due to whiplash but worse for me as I’m already a bit delicate. They have said that it has added to everything else so they are paying for me to have some treatment to help me heal. Not quite sure yet – I think it’s helping a bit. As in reflexology, usually you feel worse before you feel better….. I’m holding on to this! Here’s me as a human pin cushion!
So, I’ve been in a lot more pain for the last few months. It’s getting very draining. I’m a strong willed person but I’ve been finding it really hard so I went to get checked out.
My oncologist, Dr Loo has taken me off my hormone inhibitors (exemestane) to see if the new pain I have been having in my chest and neck area is due to side effects caused by this drug (there’s a long list of side effects!) It worries me to come off it, but she promised it was safe to do for a short time and that it’s a good time to do as I’ve been on it a year and to have a break now will help me recovery from my surgery. Plus to be honest I can’t continue like this so needs must. She says the pain I am in is unusual which worries me a little too – in the cancer world you really want to be ‘common’. But it’s very widespread pain and not excruciating so I think that’s a good sign. Unfortunately no better yet. But she has arranged for some urgent diagnostic tests to see what we can find out. It’s like playing Cluedo! All about logical deduction!
So today off I went for my nuclear bone scan – I’ve been radioactive! I always expect my wee to be luminous green or something but it isn’t. I actually like seeing the nuclear radiologists – I am a regular to them now so we are like friends (except I can never remember their names!) It’s better because it’s a small department (just 2 medical staff at each hospital), and they treat me like a person – not just the ‘next patient’. This is so important! It helps a lot! Thank you for doing this as you make me laugh when I’m meant to keep still! Although I’m getting to know a lot of people at the hospital now – I tend to hang out there a lot!
My poor veins are taking a battering though!
I’ve also got to have a CT scan with contrast – this always worries me as I’m allergic to the contrast dye – I came out in itchy red lumps all over in a matter of minutes and apparently every time is worse! I think they have another type they can use on me but it’s still something else to worry about! Grrrr. This isn’t scheduled until next Friday though. I won’t worry until then.
So of course I’ve got the dreaded WAIT – I really really hope nothing shows up. I suppose the FEAR of cancer coming back or spreading will always be with me for every pain and every test. Half of me knows there is no point in worrying as there is nothing you can do about it, but half of me just can’t help it. It’s horrible – I don’t want to be sick any more!
I need to focus and go back to one day and one thing at a time – just when I’d got to a few days of planning and looking to the future a bit more! Oh well – I should be used to this now. So hopefully no news is good news – I think if there’s anything bad I’ll hear sooner rather than later.
In between my tests I have my surgery. I went for my pre op assessment on Tuesday – at this you get everything explained about the op, you basically get checked over that you are fit enough for the op, blood pressure, weight, height etc. My file is huge now, we had a bit of a laugh about it!
I’ve also watched similar operations on youtube. It helps me – I know it’s strange. So at 10am on Monday I am scheduled for a bilateral oophorectomy (both my ovaries and tubes removed). This is so I don’t have to have the monthly zoladex injections to shut my ovaries down and put me into a medical menopause. It’s also for precautionary measures as the tubes and ovaries are of the same tissue as breast tissue – hence ovarian and breast cancer being closely linked. It’s a good idea in my case! And another positive is that I will then be classed as post-menopause and I’ll have more options of other medication to help prevent the cancer returning. I may have the option of going onto zoledronic acid (zometa) injections or a bisphosphonate tablet – these are what have been on the news a lot lately to help strengthen and protect the bones against breast cancer spreading – but not without their own list of side effects too! Will let you know on this one!
So for the operation they are going to make 3 (may be 4) incisions, blow my stomach up with air (joy!), cauterise and suction out the tubes and ovaries, and sew up. Ta da! I hope they are neat! And gentle with me as I already hurt so much. More scars to cover with a tattoo at some point!
So until then…..wish me luck, I’ll keep you all informed via Facebook. I suppose it will make me rest and give me some time to drink tea, eat cake and catch up with everyone – not sure how much cake I’ll be able to eat though as apparently this op messes with your bowels, great.