Month: November 2015

So here I am, in the Weybourne unit having my third bone strengthening treatment feeling much better than I have done for the last few weeks ?

We had a lovely relaxing time with Joan and Penny last week, we even ventured out for lunch one day!  It was the first time I had been out of the house for anything other than to visit a doctor or hospital for nearly three weeks! I am happy to say I am really feeling better.  The infection has gone and I am no longer experiencing any pain from the clot which I think it’s safe to assume means that it is dispersing nicely ?

This is me and Phil waiting for our food, as you can see, we went nice and early so I didn’t reach the point of ‘hangry’ before it arrived!!

Sharon is my nurse today, she administered my treatment the last time I came.  She is very down to earth and easy to talk to.  She tells it like it is and I like that ❤️ Thank you Sharon – sending you lots of love

This treatment is not the big event of the week this week though… On Wednesday afternoon we have a progress meeting with Dr Alexander – I am hoping that she will be able to tell us if the hormone suppressant is working ?  You know that saying that ignorance is bliss is partially true… I know that if it isn’t working there are alternatives but I would really like it to be working so that we can relax for a while.

My treatment has finished and I am now at the Big C with Phil to meet up with Hajira. You may remember that when I was in hospital she came to visit and decorated my foot with beautiful henna and in the background of the picture was a fabulous pink heart that I said I’d tell you more about one day and that day has arrived.

Hajira runs a sewing club on Monday mornings and they have spent a couple of their sessions making the hearts for people with breast cancer.  They can be of great comfort to offer support under the armpit or under a seat belt etc. and Hajira is coming to donate them to the Big C so that they can make them available for people who could benefit from them.

It is such an amazing thing for Hajira and her group of like minded sewing friends to have done – thank you ❤️  They made two big bags full so there are enough to share with some of the other Big C centres.

We’ll let you know how the visit to the oncologist goes.  Mum and Richie are coming down this week to ‘have a look at us’! which will be lovely ?

Talk to you soon

Lots of love Mand xxx

 

…well the broadband is!

I am feeling much better, I had a bit of a panic on Saturday morning.  After a pain-free day on Friday and an encouraging chat with my doctor about the new potential alternatives to the daily injections of blood thinners, I woke at around 04:00 with pain in my side again.  The painkillers had worn off but I could also feel some rattling which made me think that the infection was still there.  I knew that I was due to take my last antibiotic that morning and was concerned that if the infection had not cleared up I may end up in the state I was in last Saturday and I really didn’t want to go there again!

I called the acute oncology team and luckily, I spoke to Hannah who had admitted me last week.  She said that it sounded like I may need some more antibiotics and could come into the hospital but would have to go through the protracted weekend admissions process again and it may be easier to see the out of hours GP.  I said I’d give it a go.

Our GP surgery is part of a group for out of hours support.  We had never used the service before but it was very efficient and I was in Long Stratton seeing a doctor by 10am.  He was excellent, asked loads of question to understand my history and listened to my rattling lung.  He concluded that the rattle was not infection but associated with the clot and it was just the pain from the clot that needed a bit more control.  I had explained that the orimorph I have was not getting rid of the pain, so he prescribed tramadol one or two tablets that can be taken every 4 hours to fill in the gaps where the ibuprofen is wearing off before I can take another.

As I said before, the anti-inflammatory action of the ibuprofen is what seems to really help with the pain.  The doctor did warn me that the tramadol could cause nausea… he wasn’t kidding!  I was not concerned about nausea because I have a well established method for dealing with that… eating!  I had not counted on this nausea being different.  It is somehow more bilious and eating does not help, in fact yesterday I threw up again.  I hate throwing up.  I’m not taking any more tramadol!

Yesterday morning I had a lovely and very timely call from Pat my Red Arc nurse.  We hadn’t spoken for a while and as always she actively listened and helped me rearrange my thoughts 🙂  She also gave me some advice about the pain relief and suggested I could have a go with paracetamol instead of the tramadol in the gaps which seems to be working.  I did have some pain when I woke this morning but I slept until about 06:00 so that was awesome!

I do have nausea again this morning though and I don’t know why.  I expect it will be gone tomorrow 😉  I had stopped eating too much citrus as someone had told me that was a good thing to do.  I couldn’t find out why and had assumed that it was to do with sensitivity in the stomach as I went through chemo so I started eating them again this week – they really are at their best at this time of year and I had been craving the freshness of flavour… I think I’ll take a couple of days without eating one and see if that makes a difference.  I can’t think of any other changes  I’ve made to my diet.

I have been taking it really easy to allow my body to recover.  Phil’s Mum and Sister are coming to stay today having recovered from their ‘flu’ bug so we will have a nice relaxed few days with them.

At last, it seems that the weather had finally caught up with itself; we had a splattering of snow on Saturday night and it remained cold on Sunday although it has warmed up a bit now – I took this photo on Sunday morning.

In other news, I am getting in touch with my inner primate.  My hair regrowth is coming on apace and I have ‘fur’ for want of a better word, growing all over, nice!

Talk to you soon

Lots of love Mand xxx

Once again we have been left without broadband as a result of the storms, I can’t say it’s that bad for me because since I came home on Tuesday I have been mainly sleeping! I am now in the doctors surgery waiting for my checkup and taking advantage of their wifi!!

There is so much I would like to talk about from my observations while I was in hospital, I am struggling again with my energy at the moment but hope to come back to it at some point in time.

The most important thing is that I am getting so much better every day and I know now that I will make a full recovery I did however have some dark moments in the hospital.

In my optimism I had left myself completely unprepared for another setback, particularly one that came out of nowhere. When I had that initial pain a week ago it didn’t even cross my mind that it could be a blood clot or even an infection. I was sure it was just muscular where I had been sitting for too long or at a funny angle, you know, just how anyone would in the days where cancer was just something a bit scary that you hoped you would never have to deal with.

The thing about being in hospital is that it takes away all the distractions of everyday life and home and leaves you with far too much time with your own thoughts and, especially when you are in the company of people having to imminently face their own mortality; your own thoughts are naturally drawn to that. The thing is that whilst I know I have cancer that is incurable so it will most probably be my cause of death, we still have no idea how I will die, just like everybody else. It’s a different perspective to be looking at life from and one that I haven’t got my head around just yet. I will keep on pondering it here and may ultimately figure it out but somehow I doubt it ?

I hope you have a fabulous weekend

Lots of love Mand xxx

Last night we had the Hazel and Liz tag team to usher us safely and suitably drugged up through the night. They did a fabulous job. The new computerised prescription system was going live today so there were a load of pharmacy staff pinching our drug charts every 5 minutes to get all the up to date detail into the system which didn’t help much.  We were also quite a demanding 6… It’s not called acute oncology for nothing that’s for sure.

Any project like that I have worked on in the past we have at least had a weekend to upload live/ current data (sometimes more) without anyone updating or amending it but there are no such luxuries in a 24/7 frantic operation like the NHS!

Anyway I made it and was sent home this afternoon along with enough drugs to open my own pharmacy!  I will probably tell you more about the experience soon but for now I am just going to bed ?

I am so looking forward to going to bed!

Talk to you soon

Lots of love Mand xxx

Had I written this post this morning the tone would have been very different.  I had a really bad night last night. I was in so much pain, it felt as if I had a knife stuck into my ribs on my left hand side.  I could not get comfortable, laying down was not an option at all. I had the bed as upright as it could be but no position gave me any relief from the pain.  Eventually at about 3am the nurses were able to get the on-call doctor to prescribe an injection of a stronger morphine based drug.  It did not stop the pain but it knocked me out and I got 3 hours of sleep which was bliss! I woke the exact position I had received the injection – upright with my shoulder against the plastic control panel of the bed (which left attractive dents in my skin) and the sheet and blanket on the bed next to me, not over me!  I was afraid to move when I opened my eyes because I didn’t want to do anything to make the pain worse but of course I had to get up… nature calls and all that ? I washed my face and brushed my teeth because my mum always told me that would make me feel better!  It didn’t work! At about 20 past 6 the tea trolley came and I had a cup of coffee, then I waited for the nurse doing her drugs round to get to me.  I had a glass of water and threw up, then I waited for the nurse doing her drugs round to get to me.  I was again in so much pain that I went to the nurse doing her drugs round and asked if I could jump the queue not because I consciously thought that my need was any greater than anyone else, simply because I had to do something.   She could see my distress and got me the oral morphine, I drank it greedily and within 2 minutes I threw up again! Noooooo! Poor Anna the lovely drug issuing nurse;  ‘oh no, I just puked out my morphine’ I wailed!  I’m sure I sounded like a drug addict!

I was beside myself with pain and in a pretty poor place mentally.  I was not ready to be sick with this cancer.  I cried a lot, more than I have for a long time and at about 09:00 I was given another morphine injection. Phil came in to see me, Anna had said it would be ok for him to come outside visiting times, I think she just wanted to stop me crying!!  When he arrived I was instantly more relaxed and the morphine was kicking in so within half an hour I was beginning to feel sleepy so he stayed with me until I was asleep and went home again!!

At some point during the morning the doctor did his rounds and asked me how I was feeling. I simply said ‘like shit’. I am not proud of myself but it was all I could manage.  He suggested a different approach to pain relief and an additional antibiotic. Oh my, that was amazing!   A different antibiotic and ibuprofen instead of morphine (yes you read that right!) and I was a changed woman.  At 2 a man with a wheelchair arrived to take me for my scan and my spirits were lifted enough for me to have a laugh with the radiologists. I really am sorry for the way I spoke to that awesome doctor!!!

Unfortunately, my fab friend Donna was on her way to see me when I was collected for my scan so although a quick message exchange wasn’t timely enough to save her the drive into Norwich, it did save her a pointless parking fee ? I’m looking forward to seeing you tomorrow Donna x

Hajira however  lives much closer to the hospital and so she popped in to see me with her lovely Mum for what was left of afternoon visiting slot when I got back from the scan.  It was lovely to see them and she brought some henna with her to give me a beautiful henna foot!  I am so lucky!

I’ll tell you about the beautiful heart behind my foot in another post!

Phil came back for the evening visiting slot and my gorgeous friend Tina came too, she has crocheted me a beautiful hat and also brought me a ball of wool and a crochet hook to keep me busy making more.  Although you know I never get bored, especially when there are people to watch! I am surrounded by older women who are all completely different but have one thing in common, they take their hearing aids out at night.  This results in any exchanges with the nurses (and there are many!) having to be at high volume to be understood… there are some conversations you just don’t want to hear!

Both Phil and Tina were amazed to see me looking so well! Phil had obviously seen me at my worst and Tina had called me at lunch time to see if I was still in the hospital when I was short of breath and obviously uncomfortable – I honestly can’t believe how much better I feel.

I have just had my night time medication (not from Anna, she’s gone home now) and apparently the initial antibiotic can take a couple of days to be effective so it could just be that kicking in but whatever the reason I am grateful!  As I write I am almost pain free ?

India the gorgeous doctor came to see me while Hajira and her mum were here to give me the results of the scan.  I do have a clot in my lung right where my pain has been and that’s ok, if it were just that I could go home as we know with my fragmin DIY blood thinning injections.  She wants me to stay in however to get on top of the infection and to determine if I have infection or infarction in my lung around the clot.  I’d like to think I’ll be going home tomorrow but we’ll see.

Thank you for all your well wishes – talk to you soon

Lots of love Mand xxx

Last friday night when i finished writing the blog as i got up to go to bed I felt a pain on my left side, under my ribs. It felt a bit like a stitch, but a really bad one! I had taken a nap in the afternoon because i felt really tired but thought it was just because I’d had a busy few days rather than anything to do with coming down with something so I went to bed expecting to feel better when I woke up in the morning.

I didn’t! In fact, I didn’t get much sleep at all. It was my friend Kerry`s baby shower on Saturday so I had a soak in the bath in an attempt to get over it but when it came to it, I realised I really couldn’t and I had to send my apologies. Phil, as always the sensible one… asked me if I had taken my temperature! You may remember that when I was going through the chemo I had to take my temperature twice a day th check that I hadn’t got an infection, I got out of that habit very quickly but he uses it as a first point of reference. So of course I hadn’t, but I did and it was 37·8. Anything over 37·5 should be reported to the acute oncology team so I gave them a call and got the dreaded phrase… I think you should come in!

So, we went in, and I haven’t come out yet!! I had a chest x-ray at 23:00 Saturday night and I am waiting for a CT scan. Currently, it could be a clot (really!) Or it could just be an infection. I am receiving intravenous antibiotics 3 times a day to target the infection, intravenous paracetamol to bring down my temperature and morphine for the pain. They are building up the dose gradually as I’ve never had it before so nothing too exciting to report yet 🙂

As with all my other experiences of the oncology team, those on the Mulbarton ward are equally fabulous. Dr India admitted me onto the ward, she is gorgeous with fabulous clothes and she told me that my oncologist, Dr Alexander was on call so I would see her today which was great. Im in the best place to be waiting to find out what’s going on and how we’ll fix it.

So I have decided that planning is old hat and and I’m just going to wing it from now (I think if I really focus on it, I might last a week!!)

Talk to you soon

Lots of love Mand xxx

Happy World Kindness Day!

The ‘Random Acts Of Kindness’ team have posted a helpful link to a list of ideas  7 ways to save the world (from your couch)

Last Saturday evening I met a lovely group of ladies at the Norwich NEESA group.  Hajira invited me to go along and share my cancer experience with the group.  I was a bit nervous but excited too.  I would really like to be able to use this experience to help other people understand the importance of being aware of changes in and on your body and doing regular self examinations.

I keep talking about it but the absolute worst thing about this situation is the effect that it has on everyone around me.  Having to tell people that I have stage 4 breast cancer is really hard.  But it would have been much harder if I had not regularly done self exams or worse still had been invited to have a mammogram and had chosen not to go.  I don’t think I would be able to look people in the eye and that is what I want to share with the world!

Those of you that know me well will know that I don’t usually have any problem talking about myself, in fact it is my specialist subject 🙂 so you may be surprised that I was a little nervous.  They were such a lovely group of ladies and quickly put me at ease.  It was actually quite therapeutic talking to a group of new people about our experience during the last six months.  The best thing was the great sense of achievement that I felt once I’d finished, I really felt as if my story had connected with that group and that it may make a difference to one of them.  I really hope it did.

This week my old friend Pernilla came to visit. (Old in terms of the length of friendship rather than years of age… she is 2 months younger than me!) Pernilla brought a sewing project and her sewing machine with her and we spent the best part of 3 days sewing.  I had a really lovely time, I enjoyed sewing with a companion far more than I had expected, it was really fun.  I can’t tell you what I made because they will be Christmas presents for people who read this blog, but I was very pleased with them.

I hope you have a fabulous weekend

Talk to you soon

Lots of love Mand xx

I can’t believe it’s Friday night already!  This week has just disappeared in a flash.  We were expecting Phil’s Mum and Sister (Joan and Penny) to visit this week but they were struck down by a horrible cold so have postponed for a couple of weeks which left us with unexpected time on our hands!

I hope you’re both feeling much better 🙂

As you know, recently I have been struggling to come to terms with my ‘new normal’.  It has felt a bit like every time I get my head around what I think is going to happen, something has happened to change that.  Without a plan I have no focus and my mind races around all over the place resulting in what feels like achieving nothing but quickly using up what energy I have!

On FB I have ‘liked’ a group called Project Happiness.  They are all about ‘Offering programs to spread happiness through classrooms and communities globally.’ They post a few words of wisdom (or often common sense in my opinion but I know I’m lucky to have a naturally sunny disposition!) every day on their FB site around finding your own happiness by practicing gratitude and using the power of positive thought etc.

On Monday they posted an article entitled ‘When the Google Search Fails: 5 Ways to Navigate Uncertainty’ .  I think there are some lessons to be learned in there! I will let you know how I get on…

On Wednesday we went to the Big C for another complimentary therapy massage session which was fabulous as always.  I had the (super gentle) reflexology again and enjoyed it so much more than the last one knowing that there are no issues with my blood!!

Yesterday I went to the dentist.  I know this is a visit that many people dread but I don’t mind it.  I was really pleased that even though I had a few weeks of not being able to use my electric toothbrush when my mouth was sore with the chemo and no flossing, I had no plaque   whoop whoop!!

My dentist also noticed that I am experiencing ‘dry mouth’ which is uncomfortable (and impacts the freshness of my breath!) and she prescribed me a mouth spray.  I was thrilled!  I collected it from the chemist and eagerly tried it…. oh my goodness.  It is lemon flavoured, and on the can it says ‘synthetic saliva’, well all I can say is I really don’t think it was entirely necessary to make the texture so like actual saliva!  It is not pleasant but I’ll get used to it.

Today we took Dude for a walk in the woods to get a little relief from the rain.  Autumn has really kicked in at last and Dude was loving all the leaves!

And more good news; my hair is really starting to grow now.  Although from the front I still look pretty much bald still:

From the top and back it could almost look like a fashion statement!

 

It seems to be growing faster on my crown, at this rate my first new style will be reminiscent of Attila the Hun!

I hope you have a fabulous weekend 🙂

Talk to you soon

Lots of love Mand xxx

Well, I am delighted to report that I had my second bone strengthening treatment this morning and so far I’m feeling OK.

The nurse used my port which all worked properly but even she was unable to remove the steri trips from my larger incision – she said that I can soak it a bit in the shower… It would be good to look a little less like Frankenstein however, the timing was appropriate ?

Fortunately, they weren’t in the way and it made the process much easier and more speedy without having to play hunt the vein.

Talk to you soon

Lots of love Mand xxx