So we have a plan…

This afternoon we had our appointment with Dr Alexander.

All round it was pretty good news.

  • My tumour markers had reduced to 43 on my last blood test which was just before my final chemo session.  For context they started at 171 and the top end of normal is 35.
  • The tumours in my liver have reduced in size, for example, the largest one has reduced in size from 54mm x 50mm to 43mm x 34mm.

This was all we could hope for, to have the tumours on the back foot.

There was also some other news.  Although the bone scan didn’t show it in April, there is evidence that the cancer is also in my bones but the chemo has done its work on that too.  The thing is now I have damage to my bones and I will have to have zoledronic acid given via an intravenous drip every 4 weeks going forward.

The thing is, we knew I would still have cancer, but we weren’t expecting this and we’re both feeling a bit strange.

We’ll soon get our heads around it I’m sure ?

Talk to you soon

Lots of love Mand xxx

The transition between seasons…

We have had a really lovely weekend with Dad and Chris.  We made the most of the beautiful sunshine sitting out on the deck, relaxing and walking with Dude.  It was a great tonic after the stress of last week.

I am beginning to feel a bit more comfortable with injecting myself and all the hints and tips have really helped.  I have managed to do the last two without leaving bruises although I’m not sure that walking around with an ice pack in the front of my pants is really my best look!!

I am so looking forward to our appointment with Dr Alexander on Wednesday. Just in case you hadn’t picked it up, I like to have a plan ?.

I have had a lot of time to think about it.  Although I want to be able to just switch into the next phase, I know that in reality it’s likely to be more like the transition between seasons.  We still have some of the sunshine and warmth of summer but we have cooler nights and earlier sunsets as well as the gradual changes in nature so although there are elements of the summer remaining, autumn is beginning to show itself.  On Wednesday afternoon I am not expecting to come away from the hospital fully transitioned into the new normal, I am however expecting to have a better understanding of what it will look like and how we’re going to get there.

If countryside folklore is to be believed; it is going to be a hard winter because there is an abundance of wild fruit and berries this year.  I think that as long as we are prepared for the next steps, it is not going to be a hard winter for us, just a different one.

Here are a few snaps of nature’s bounty that we took this afternoon on our walk with Dude.

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Talk to you soon

Lots of love Mand xxx

Another big thank you!

Thank you for all the supportive and helpful comments both on the blog and via email or text etc..

I can’t deny that it has been a scary couple of days.  It is so counterintuitive pushing a needle into your own body.  I have watched nurses do it to me countless times, even before this all happened I used to give blood regularly and it had never bothered me but this is a bit freaky!  Last night when we went to bed, I noticed that where I had injected yesterday I had left a sore lump that was also quite bruised.  This morning we were going to the Big C for a massage we had booked weeks ago and so I left Phil having his back massage and popped next door to the oncology unit just to check that I wasn’t doing anything wrong! Fortunately I’m not doing anything wrong; unfortunately, the bruising is not uncommon. I’m likely to have a purple belt by the end of this and I’m not talking about martial arts!!!

I have also learned from the messages some avoidance tactics such as applying gentle pressure and using ice amongst others so I will begin to apply those and as I get more confident I’m sure it will be better.

On a lighter note, I did have a really gentle foot rub after Phil had his massage.  Rachael was super gentle because of the clot but just the relaxing ambience and music did me the world of good ?

Recently, I have been struggling to switch my brain off when I go for my afternoon nap but if I don’t have one , I feel totally washed out in the evening.  At the Big C they have a library which also includes some relaxation CDs so I borrowed one this morning.

When I went for my nap after having a chat with Pat (my Red Arc nurse (which usually relaxes me anyway ☺️)), I put the CD on.  It was in two parts, the first was guided relaxation and the second was guided visualisation. I have to be honest, when the female voice began I thought oh dear, this isn’t going to be very good but I’ll give it a go!  Well she talked me through relaxing every muscle and joint in my body, and then told me I could get up or stay there and try the visualisation so feeling nicely relaxed I decided to carry on.  The first part had no accompaniment but now some gentle background music started and then it was an hour later!  I have no idea what the visualisation was but I felt great when I woke up!!  I’ll try that one again!

I hope you all have a fabulous weekend.  We have Dad and Chris coming for a pre birthday celebration so we’ll have fun!

Talk to you soon

Lots of love Mand xxx

Be careful what you wish for!

So here I am whingeing about being in limbo, waiting for something to happen and then it does… it really does!

We’re in Bungay with our neighbour Tom having a lovely lunch sitting outside the café in a sheltered garden.  (There is a story behind that maybe for another day but its late now and I need to go to bed!!) Anyway, we’ve finished eating and are getting through our second mug of tea putting the world to rights and my phone rings.  My personal phone hardly ever rings and when it does, it’s usually because I have been carefully selected to receive some valuable marketing information… this time was different.  There was no number available, that’s what comes up when the hospital calls.

It’s Dr Alexander the oncologist on the phone.  She tells me that she has the results of my scan and that it has shown something that we need to deal with.  There is evidence of a blood clot and I need to go into the hospital to see the acute oncology team to get some drugs to sort it out.  OK.  There is good news too, it shows that the lesions in my liver have got smaller.

‘Whoop whoop’ I say, ‘so when do I need to come in?’  ‘Now’ is the response.

Oh, that sounds serious I think.  I hang up and think about how I’m going to tell Phil.  As you will recall, he is very squeamish, particularly about anything to do with blood and I needed him to drive me to the hospital, calmly!  Luckily Tom had driven us to Bungay so he had a while to get his head around it before he actually had to drive.

I just said, ‘that was Dr Alexander, the scan has shown a blood clot so we have to go to the hospital to get some drugs to sort it out’.  ‘OK. says Phil ‘when?’  ‘Now’ I reply as casually as I can.  Poor Tom jumped to attention as if he’d had an electric shock!

Tom asked me a couple of questions about it as we were driving back but I told him I thought it was best that we didn’t talk about it until we got back home!

When we arrived at the hospital, we were checked in then waited what seemed like half an hour but was actually 5 minutes.  We are taken to a part of the wing we hadn’t been in before where it was explained that the way to disperse the clot is to inject a drug called Fragmin, that’s ok I think, I don’t have a problem with injections.  The nurse continues… daily, probably for up to 6 months!!  WHAT?!! inject myself?!! Then the nurse’s phone rang and she had to take the call.  I was thinking I’m not sure I can inject myself, I said to Phil ‘do you think you could inject me?’. He said ‘yes, if I can do it in the back of your neck whilst you’re eating!!’  (For a bit of background, Munch our cat has diabetes and we have to inject him with insulin twice a day, and that’s how we do it!)

Anyway, it turns out it comes in prefilled syringes and it just goes into a pinch of fat on my tummy (no lack of resource there 😉 ).  It is still a bit weird pushing a syringe into yourself, although that bit didn’t hurt, depressing the plunger was harder, you feel the drug going in like a wasp sting but it’s soon over.  You can opt to have a nurse come to the house to administer it on a daily basis but I think we’ll be ok.  We were packed off with our sharps bin and 10 filled syringes to get us started.

Once again, I had no symptoms!

When we got home, we stood in the kitchen and hugged.  ‘Wow, that was a bit scary’ I said, ‘that was terrifying’ Phil said.  I’m not going to complain about waiting; at least for a little while!

Talk to you soon

Lots of love Mand xxx

His n Hers Sharps bins (Munchie’s is the small one!)

his n hers sharps bins

 

Take the Green Pill…

Today I began taking the Tamoxifen

the green pill

It’s a green pill.  Not a blue pill that would allow me to wake up believing whatever I wanted to or a red pill that would allow me to stay in wonderland and find out how deep the rabbit hole is… a green one.  The green one should allow me to get back into a routine, establish a new normal and move forward.

The thing is we are feeling a bit in limbo.  The first round of treatment is complete, today I have started with the second round but we haven’t yet had the confirmation that the first round behaved totally as expected and we don’t yet know how we will know if the second phase is working and how we will monitor its progress.  We do know that we will have those questions answered on the 30th so we just have to be patient and keep busy until then.

Today has been day one of week one (aka chemo day) for the last several months.  As that I didn’t have to go for chemo today, we thought it should be a celebratory day but in reality it didn’t feel like that.  I am still struggling with fatigue and my eyes get sore really quickly when I am focusing on a book or a screen or a piece of paper or fabric and I think I expected to have shrugged off the side effects now – but I know it’s normal for them to hang around a bit.  Again, patience is required.

In just over a week we will have the plan and it will feel like I’m back in some sort of control…I just need a little patience to get me there – that’s not so hard surely!

Talk to you soon

Lots of love Mand xxx

The moment of truth

Tomorrow we are going to the hospital for the final CT scan.  We have done all we can do for now.  This one is to check that the tumours in my liver are not growing.  It would be nice if they have shrivelled up (thanks for that word Mum!) but its not necessary.  My body can obviously cope with the size and quantity of tumours that I have, we just need to stop them growing.  Of course, we won’t find out the results until the 30th when we see Dr Alexander and discuss the maintenance plan.

Today, I have spoken to the team at Big C about sponsorship for the 5k Phil and I are walking on the 17th of October.

I am reluctant to use the Just Giving site when it is possible to donate directly to Big C so the whole amount gets to them, so if you would like to sponsor us, please use this link .  You have to sign up, just like you do for just giving, and if you type ‘Sponsorship for Mand & Phil Black’ in the ‘reason for donating’ box they will be able to give us a total.

Big C Donation

As part of my preparation for the walk, I had a foot massage today 🙂 nice!

I hope you all have a fabulous weekend.

Talk to you soon

Lots of love Mand xxx

 

 

 

Shopping, making and catching up.

I have had three lovely days.

On Tuesday my friend Donna took me to Taverham Garden Centre.  It is however not quite as it sounds.  They have several units on the site housing a kitchen shop, a farm shop, a chocolate shop, a cafe, several other shops and a sewing shop.  Ooh la la!

We spent the majority of the morning browsing through the extensive selection of fabrics, buttons, ribbons… it is a treasure trove, they also have a huge range of craft products… Oh my!  Donna dragged me away and we had a lovely lunch in the cafe before coming home.  I was so excited about my purchases that I didn’t have a nap and started to plan what I was going to make for my niece Amelie for her first birthday next week. By 21:00 I was exhausted but I did have a great nights sleep ?

Yesterday, I spent the day making Amelie’s present.  In the past, a project like that would probably only have taken me a couple of hours.  I think I have mentioned before that my lack of confidence has made me spend a lot more time designing and planning my projects and I’m not sure that is really a bad thing! I’m really pleased with what I made but I can’t share it with you yet because I don’t want to spoil the surprise!  Oh dear, that is such a build up its bound to be a disappointment!

And then we have today.  My friend Mirfet came for lunch.  I met Mirfet in 1989, we started working at WH Smith in Lion Yard Cambridge on the same day and have been friends ever since! Today was the first time we had got together in almost 5 years but it didn’t matter.  I have seen a quote by Christy Evans a lot recently which is very relevant;

“Friends are like stars, you don’t have to see them to know they are there”

It was so lovely to see her, it won’t be that long before I see her again.

Whilst I have been having a lovely time keeping busy, Dude has been practicing his bored face!

Dude bored

He is very good at it I’m sure you’ll agree.

Talk to you soon

Lots of love Mand xxx

Getting back out there

As you all know, this final session of chemo really knocked me for six but I am delighted to say that I feel like I am coming out of the other side.

Yesterday morning I walked Dude for the first time in two weeks.  I have to say that I was grateful that Dude seemed to find even more things to sniff at and wee on than usual because I quickly began to sparkle and get out of breath.  I really felt it in my legs too.  I was amazed how quickly I have got out of shape.  Just two weeks of inactivity have really taken their toll.

In January this year Phil and I decided that we wanted to get fitter.  We decided that the best way to get the motivation to make the extra effort was to sign up for a 5k ‘fun run’.  Not wanting to over-stretch ourselves, we went for one in October.  In Aberdeen, several of my colleagues are runners and Duncan M,  put together a training plan for us as novices to get us up to 5k over a period of weeks.  I haven’t done any running training or Zumba since I stated the chemotherapy but I was still walking Dude pretty much at least once a day until the last session.   Duncan had also seen a run in Aberdeen called the Black Light run which has a bit of a party atmosphere, it’s run at night with neon pain dust and UV lights – like a rave run which he thought looked like fun!!  Well there was one in Norwich on October 17th and Phil and I signed up for it.

There are just 4 weeks until then and today we have decided that we will do it… although we are unlikely to run any of it, I hope to be back up to a comfortable brisk walk  by then rather than today’s plod!!

If anyone would like to sponsor us, we are going to set up something with Big C like a just giving site but without having to pay a fee for admin and will post the link once we’ve got it organised.  Please don’t feel obliged to sponsor us, we are planning to have fun but thought it would be a waste to do it without giving you the option!

Talk to you soon

Lots of love Mand xxx

 

Henna Update

The henna crust came off and has left different depths of stain.  As expected, the stain is much paler on my head and I’m thrilled with the delicate pattern it has left.  I’m still not brave enough to go out in public bald anyway 🙂  I know it doesn’t look like it but my hair is growing, honestly!

Henna Head

My hand took the stain much more deeply

Henna Hand

And Mum’s arm is beautiful

Mum's Henna

We have been working on the diet plan as well as having fun.  Today we experimented with a sugar free carrot cake.  We will not be making that again.  Who knew that no sugar would result in no flavour, not even just mediocre, totally bland!  I’m sure we’ll find other ways to make sweet treats without sugar.

Talk to you soon

Lots of love Mand xxx

Crowning Glory!

Today I made a new friend ?

You may remember way back when my hair started falling out I talked about researching henna crowns.  Well I did, and today, we went into Norwich and met Hajira Ben Moussa.  (Henna BY Hajira on FB) We spent two and a half hour in her gorgeous henna hut talking about life, the universe and everything (remember I am my mother’s daughter!) and enjoying moments of silence, totally absorbed in the magic of the process.

And this is the result

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I feel very lucky to have experienced this with Phil, Mum and Richie, a most excellent way to spend a morning!  I have flowers, butterflies, hearts and even a ladybird dancing on my head, it is amazing.  I am also really happy to have met Hajira, she is an awesome person with a fascinating life, I’m looking forward to getting to know her better.

Talk to you soon

Lots of love Mand xxx