Week of reflection

It’s been a while! For the first time in quite a while I’ve had quite a week of reflection. So I was asked to go and talk to a bunch of teenagers about what happened, Beth one of the mums at school wanted inspirational women to go and talk! It started with me agreeing because I seem to now agree to anything (well things I’d have definitely declined once upon a time), at the beginning of the week I realised I needed some pictures or at least something I couldn’t just go and talk at them. So this is what I put together

Mum thought it was safe enough to share so I bravely put it on Facebook, I wonder how people take my posts & insights into surviving a blood cancer. What I don’t expect are the comments which are amazingly supportive.

Then today I went to the Bloodwise Impact North day, which really cements what I’m part of now, an illness that I’ll never be free from as it has shaped me and who I am. I look back at who I’ve become and I’m a happier person with a far different outlook on life.

So what’s new? I have been working on The Craft Channel for Bead House demo-ing our beads and kits. I never thought I’d accept going on TV but as I said above I’ve vowed to do what I wouldn’t have before. We generally do things rather than thinking of why we can’t do them.

I’m now on 6 monthly appointments! I’ve nearly finished my baby inoculations I think I’ve one I still need to go for. My chimerism never reached 100% (percentage of donor blood) it hangs around 98-99% I think. I need to check, I commented on a previous post that I was at 87% but that’s incorrect, I’d not understood fully the overall value.

I was invited to The calendar girls musical in Leeds, Mum came with me, we made a day of it and we had fantastic seats but no Gary Barlow appearance. A month later I was asked again if I wanted tickets for the Lowry theatre, I mentioned it to Christine at work, who was very eager to go and thank god I did, we were at the back but were treated to a live performance by Gary this time!! There are small perks to this thing I’ve endured. Bizarrely Leah my best friend was at the same performance after booking tickets to take her mum, found out a few days later!

We had a Bloodwise fundraising Christmas shopping day before Christmas raising £1500, no idea yet what this years fundraiser will be.

I’ve realised my 40th will be the same year as I’m 5 years old, so we’re thinking of planning something special for then.

My stamina is not as it used to be, the sofa is a special friend of mine and doing anything stressful or energetic leaves me whacked! When I go to film in London it’s shattering! I also get colds which can floor me, sometimes I’m down for 3 weeks with them and end up retreating to bed for a good week or so. But they are few and far between! My last one turned into pleurisy, nothing like an 18th century disease to remind me I still need to be careful!

But so far so good, everything is going well!


No news is good news!!

I referred someone to my blog the other day, it resulted in me coming for a quick peep! Firstly for some reason it republished a blog from early last year, so thank you for the lovely comments but it was an old post named ‘Angels on Earth’.

Anyway having a quick read took me back to a place that felt very familiar, scary and unknowing. I’ve kind of been back there for other reasons in the last week too. Last Tuesday I had a PET scan, the trial I’m on had stated from the beginning scans at 3, 6, 12, 24 & 36 months. My 3 month scan was clear and for some reason my 6 month mark passed without mention of a scan, until a registrar got hold of my notes and reading through spotted this omission! At first we debated and declared no more scans (I worry the health effects of 9 radioactive scans is having on me). 3 weeks of worrying whether I had made the right decision or not, till my last appointment with Dr Gilleece and we decided better safe than sorry!

Despite having had a clear scan the whole process is still knee knocking-ly anxiety producing stress!!! In fact this time was worse as I’m negative – well until a scan says differently. Am I? Aren’t I? Am I?? Aren’t I?? And round and round it goes!

Well I’m a week after scan and I’ve not heard a peep, they would have rung me if SOS, as it says on my notes! So the stress is subsiding, there’s no message on the answer phone, no missed calls on my mobile, no text message off my nurse. I’ll get my results at my next appointment in 6 weeks time if all was ok! (Oh yeah my appointments at clinic have been lengthened to 6 weeks!!)

Life wise things are very normal, a cold this week has knocked me, I’m back at work a few hours each day, working on a BIG project for Pippin which is very exciting. I’ve started going to Yoga with DAD!! It’s much needed I do ache in a morning and can be seen staggering out of bed like I’m 90! I’ve gained over a stone and have been enjoying a cream egg addiction!

I’m generally just coming alive again, clothes shopping and even decided it was time for a new handbag! Well if three years of cancer isn’t deserving enough I don’t know what is!

So I just wanted to say I’m here, doing well and starting to believe I DONT HAVE CANCER!

The time has come….

to step back from my blog!
Would you believe it’s 2 years since my diagnosis next week, it’s been a tough journey with some real eye openers for me but it generally just became how my life was! Dad and I realised the other day that it was 19months from start to finish in treatment with some months off in between!
Anyway the news from today is that I’m doing really well, my bloods are ok, not normal yet, but good for me. But other readings, which were out or slightly off scale, are normal now. My stamina is improving, my hair is growing, I’m gaining weight slowly, I’m working again, I picked Oscar up from school on his 7th birthday (with some help!). There will be a continuation of my clinic visits, now fortnightly! Repeat PET scans, baby vaccinations, but I think the time has come to say I’m fine and doing really well.
I’m sure I may pop back on at some point to round up all the treatment I had or update about anything relevant to my transplant follow up. But for now I need to get back to being me and not the poorly mum I’ve been!

Also I must say I feel very lucky, firstly to Rich for doing something very special for me! For my lovely family & knackered husband! Mum and dad need a massive thanks for putting their life on hold to help Me, Andy and the kids to survive and have a somewhat normalish life! Everyone at work for keeping things running and finally all my friends!! Love you all x

Day +133

It’s Wednesday and I’ve had a clinic appointment as they are struggling to fit everyone in on the Friday and there was no clinic last week.

I got out of hospital a week last Sunday after requiring a 5 day course of nebuliser for RSV a childhood cold/virus. The treatment truly whacked me and last week I was sleeping lots when I got home!

My bloods are holding up well especially seeing as I’ve had a virus & heavy treatment for it. The best is my hb is 102, this has increased from 88 on its own, this is unheard of with me, I’ve normally needed a transfusion. The fact it’s improving on it is own shows my new blood is working. Other counts are Platelets 146, neuts 1.37.

So everything is as well as expected, just got to stay out of hospital and get some weight on this skinny bum of mine! I’m presently 5st 8lbs! Not very attractive really. But although I’m slowly doing more I’m reminded at clinic that really we’re looking at 12 months recovery! So I should stop being so hard on myself!

Day +118

I’m back in Jimmy’s, my temp hit 38 on Sunday and I spent the day in rigours. I came in was admitted straight away no 8 hour wait for a bed! Within an hour of starting antibiotics felt much better and hopefully will be home within a couple of days all being well.
This is totally expected please don’t read this post as a failure or backward step, it is part of the transplant process. My bloods have stayed strong despite trying to clear a virus for 10 days (neuts 1.42, hb 87, WBC 2.42, platelets 149).
Transplant consultant Charlotte saw me this morning and the general consensus is I’m doing well, I’m at a good stable point, get rid of this infection and I can resume my general rebuilding of strength at home!
Hopefully my next post will be from Green Cottage!

Day +114

I am struggling with a cold still, only problems are my temperature floating around the 37’s, shivers and headache, all are rectified by a dose of paracetamol. Jimmy’s don’t want me in unless I go above 38 degrees as they wouldn’t prescribe antibiotics below this and I don’t believe I have any bacterial infection, just the harsh reality of a mild cold after transplant.

I now spend my life wondering what my bloods are doing, I feel slightly lost as no clinic appointment today and usually I get a weekly update on my bloods, and they would be able to give me a shot if my neuts were low and help me get rid of this cold. Anyway I’ve not got out of bed yet, I’ve got a pain au raisin and apple juice and I’m attempting to answer work emails, so I’m obviously not that ill! But scared to do much in case I am very neutropenic and at risk of other problems.

Also I’ve been encouraging people to donate blood as I’ve had so many units, and ideally I’d love to find as many donors as units I’ve used. But I discovered last night one of uk bone marrow registers allows donations up to age 55 (Anthony Nolan has reduced their age limits to 30 – which is no good for the majority of my friends) but deletebloodcancer.org.uk accept donors up 55, all you have to do is register and do a swab of your cheek. So anyone who fancies doing something amazing, here’s your chance! Did you know only a third of transplant patients will have a sibling match, the rest rely on worldwide donor banks and at present 30,000 (trying to find source of this) patients worldwide are without a donor!

Day +112

Well we’ve had a quiet Christmas and new year really. I’ve picked up a cold and it’s starting to worry me that it may put me back in Jimmy’s. I’ve not felt too great at points over the last few days.

The biggest crisis has been we ran out of hot chocolate, we like a French one, so I’ve ordered some online and we’re making do for now, but the UK hot chocolate choice leaves a lot to be desired!

I’m missing being able to interact with normal life, no shopping trips I’m finding the hardest! I know I’m not strong enough yet and the risks are too high, but normal life has not just resumed with a clear scan and it’s upsetting. The nurse I saw last week said expect another hospital admittance and you’ll probably be quite down in this next 100 days. She’s actually quite right!

I think it’s time to start reading, watching box sets and find some hobbies! I could attempt to make jewellery using all my home supplies, we’ll see! But it’s what to do with them after, I have no sales outlet anymore!

Day +107 Friday updates now!

As I’m passed 100 days my clinic day has moved to Friday. But today’s was a little special as I had a bone marrow aspiration booked for 9.30, we were there before 9 so I could get my bloods done.

We were promptly round to outpatients where they called me through and left me sat waiting over an hour! Just got to love the delays, but today’s wasn’t too bad as Leah & Martins step dad walked round the corner, he’s had myeloma and has a monthly infusion, so it was lovely to have a catch up!

Then Suzanne came to find me to get my clinic appointment out of the way, my bloods are lower this week hb 90, neuts 1.08, platelets 188, WBC 2.09. Last weeks seem a little blip and have dropped back to where they usually sit. But I’ve had a bit of stress and the starting to eat again at first no weight went on as though my body was grabbing all it could. I’ve also started with the kids cold which tends to whack my neuts.

I also got my chimerism results which detail how much of my blood is donor and if any of me still exists, I’m at 87% donor, which means I’ve got some of me still left, so I have to hope now that this automatically continues to increase if it goes the wrong direction I’ll need DLI (donor lymphocyte infusions) they’ve already got these cells as Richard gave so many stem cells they were able to make some up from his donation. They’d like me to get to 100% but said sometimes people don’t and it’s fine, so trying not to worry.

I’ve also gone to fortnightly appointments another great step forward!

Then after clinic I went round for my bone marrow test, to have another wait for a nurse who seemed to be juggling too many jobs, in the end Mandy the sister came round and next thing I know I’m waking up and it’s done!

Dad suggested TGI Fridays at birstall, but after several circuits of a packed car park we left and headed to Eric’s for lunch, which was the best idea after I fear TGI’s would be too busy, instead we had the upstairs nearly to ourselves and far nicer lunch, ham with rosti and pineapple chutney then brownie and ice cream.

Anyway think I’ll be in bed early tonight!

Happy Christmas! +104

How it’s got to Christmas Eve I’m not quite sure? But more importantly how on earth we’ve managed to get everything bought, delivered and wrapped I’ve no idea! I’m hiding in the lounge whilst Andy builds the big stuff! Kids are at mum & dads.

I’m just relishing being at home, things could be so different and I feel incredibly lucky to be here with my family, feeling a bit better day by day! Nell has a cold so keeping some distance! But please spare a thought or prayer for a friend of mine who is spending Xmas in intensive care after problems with her transplant, she has young kids too! It has really brought home how lucky I’ve been and how well I’m doing.

Anyway Happy Christmas!!

Day +100

I just wanted to post to mark I’m past day 100, I thought it fell on the21st but I was a day out, so a day earlier.

The one thing being clear has done is make me eager to get back to full health quicker so I can enjoy things again!

Yesterday dad, I and nell made it to Da Sandro’s and work, that alone left me asleep on the sofa for an hour by 6pm.

Today I knew I had an invitation to Carmen’s tonight for the girls secret Santa, so the plan was to keep the day quiet. I wrapped Andy’s pressies, had my nails done and slept for an hour and a half at teatime!

I had a lovely phonecall from my hudds consultant Kate to congratulate me on my scan results. Apparently the radiologist who reported on the scan had rung Rod my Leeds consultant to tell him it was clear! Anyway it was a lovely phonecall and confirmed all we had been told, phew it actually is true!

Tonight I’ve had my first glass of bubbly in a long time and a lovely evening with the girls at Carmen’s!