August 5th

August 4th

Another Glorious Day on Hampstead Heath.  Or as I call it my Green Prozac, although it is not so green at the moment.

Let’s go back to Tuesday, round 2 of Chemo.  Marc and Doramy, my brother and sister in law came with me and were great, kept me occupied and entertained.   Doramy brought me two books about how to tie head scarves and Marc became our model, which entertained the staff and at least one other visitor, who kept leaning over to see what we were up to.   And this what we were up to!

Back to the Chemo, without doing the Cold Cap it was a doddle.  It all takes time but really there is nothing to it.  I sit in my rather lovely recliner chair, make myself comfortable, give my order of coffee and croissant to the catering lady as do Marc and Doramy and the infusions begin.   I am going to list what exactly happens but you can skip this bit if you are not interested.

On arriving, the first thing they do is put a needle into the port on my RHS with a cannula in it.  They then draw out a syringe  of bloody, clearing the tube out before taking two viles of  blood out to be tested to check my levels.  Thankfully the results came back and my level was 1.3…… Thank god for that as it meant we could then begin the Chemo.  Now I am going to list all the infusions that take place…..

1.Saline infusion

2. Steroid infusion

3. Saline infusion

4. Drug “A” Chemo infusion.  This arrives as a large syringe with a red liquid in it that has to be infused by hand slowly over 15 mins.

5. Another saline  infusion

6. Drug “C” Chemo infusion.  This one just goes in through the port like all the others

7. Another Saline infusion

8. Finally 5ml of heparin is put into the port that stays in the line so that I don’t get any clots.  The heparin does  not go into my blood.   That’s it, that is what is entailed in my Chemo.

Although you would think having chemo is a scary thing, you know what, it isn’t.  It doesn’t hurt, have any sensation as it goes in and I am unaware of it happening.  It just takes about 3 and a half hours so company is a good thing.  I am very lucky I feel.

That all done it’s off to lunch at The Ivy Cafe in St Johns Wood.  That was Tuesday, all done and dusted.

Now lets talk hair and head wear.  With the help of Marc and Doramy I feel I have got my head around what I am going to do once all my hair has gone.  I have plain scarves and have purchased some amazing artificial flowers which I am going to make into brooches and have a floral look going.  As with the short hair cut, when it comes to seeing me with my new head gear on, as my mother taught us. If you can’t say anything nice please don’t say anything at all.  I don’t want to be referred to as other people or labled as something.  It’s just me making a statement and making the most of a situation most of us wouldn’t expect to be in.

I have now come to terms with having short hair and it falling out, and am at the stage now where it’s going to have to be shaved off.  I am fed up of finding it everywhere, even in my “Love Island” water bottle this week, in the bath, on the floor, on the table cloth and the worst of all is waking in the night with a mouth full from the pillow.  Every stage takes getting used to but you do get used to it and from that one there is always another one to get used to.  In some ways in this heat shaving my head might be rather nice but who do I let do it…….???????  Let’s not forget the plus side of hair loss and yes there are a few, armpit hair has gone so no shaving there for a while and those whiskers one gets when you hit a certain age on your chin have gone, now that really is a bonus.

I have said it before but I really can’t say it enough THANK YOUs to everyone for their kind words, cards, gifts, food and general love for us all.  The gifts and cards and food that keeps on coming really do keep my spirits up and on the odd day where I feel lonely reminds me you are all out there rooting for me.  I LOVE YOU ALL.

Glorious Day Badge latest photo, Costa Rica.

When there are large gaps in my posts it’s not that I don’t want to write it’s just the tiredness gets to me and my head space  is just not there for it.

Thank you all for following till next time have a great week end and enjoy the sunshine. Xxxxxx

 

 

Here’s me on Hampstead Heath on one of those barmy hot days last week letting Dolly cool off in the ponds.  I will be back soon!

July 31st.

Round 2 of Chemo.

I am partly writing this blog today to remind myself that as the next 10 days or so go horribly, it does get better and I will feel normal and get to have a week or so of normality again.

I had a great evening last night eating dinner outside with a friend I have know since I was 5 who I hadn’t seen in 20 years, my parents and my brother.  Lots of laughs, most probably a glass too many of wine and lovely memories.  I was up and down doing cooking, clearing up and fussing about, more like the normal me.  I was so happy.

I am now ready for round two, bring it on, i’m going to rock it this time and not let it get the better of me.  I am not going in there today with any nerves but positive thoughts and knowing what I have to do to prevent some symptoms and fight the others with knowledge this time.  See you all on the other side.

Xxxxx

July 29th.

Photo Thanks to Mel from Cornwall.  Glorious Day on Holiday. Let’s see how far afield Glorious Day to go! ( Badges can be sent on request for free)

The end of the week end and I hate to say it but i’m enjoying a bit of cool air and the fact I have not had to water my many tubs in the garden for the past three days.  I hope you all have had a nice week end what ever you were up to.

Drink of the week end, Gin and Tonic with Watermelon ice cubes (homemade by me)  Mighty tasty even if i say so myself.

I would like Thank everyone for their kind thoughts, messages, gifts, cards, flowers, food and Love that have flooded in since my diagnosis, they are all so so very much appriacated by us all at the Palmer Pad.  THANK YOU

Big week this week, Chemo on Tuesday and my hair is really coming out in handfuls now so god knows how much there will be by Friday.  Don’t be surprised when you next see me I might look like a boiled egg!  Well one with a dodgy suntan line!! Now that’s an odd thought that has just come to me.  Will have to discuss with those men with shaved heads questions like, Do you use shampoo? What factor sunscreen do you use? And how do I stop your head from shining like a Christmas bauble?  Over a pint in the put maybe…..

Until next time Keep Smile, hug those you love and smile everyday, Life is precious and make the most of it. Xxxxxxx

PS Happy Belated Birthday Marc. My fabulous Big brother whom some of you might know. Sorry i forgot yesterday, will make it up to you on Tuesday.  Big Love to a Big Brov. Xxxxxxxxxxx

 

July 27th.

Yet another Glorious Day.

Photo taken at 7.30 am this morning on Hampstead Heath.  Rather lovely to see some clouds, almost forgotten what they look like.

I know it’s been over a week since I last posted anything.  All has been calm and health-wise good (slight tiredness) but I now feel it’s time to write.

Yesterday I noticed the hair on my head has begun to fall out.  I didn’t and couldn’t know how I would feel when the time came and it has come!………Arrrrrrr! Oh My God it’s terrifying and I am shitting myself.  It’s a very scary time, no one, not even men want to lose their hair and when it happens it’s an emotional time.  At this time, I do not want to hear, “you have a great head shape”,        “you have great bone structure”, “it will grow back”, “ you’ll rock it” or any other similar comment.  Please do not mention it to me in any way shape or form unless I bring it up.  I really mean it, no text, calls, voice mails or emails on this matter.  If you do not see me, I cancel meeting up or do not answer calls please don’t take it personally.  I need to process this in my own way and I am not sure how that will be or what form it will take but I feel it’s not going to be a happy time.

Cancer is shit!  All the terrible stuff you have to go through to get rid of it and give yourself every chance of knocking it on the head.   I have my second Chemo on Tuesday which in some way feels a bit more scary than the first.  Going in for the first session you go in blind not knowing what to expect but now I know.  It’s not that having it is painful and knowing I am not doing the cold cap is such a relief and will make the whole process at lot quicker, it’s just knowing the hair loss with get worse and that al the side effects will return and maybe worse.  In some ways your mind blanks out your memory of session one, in the same way it does when having a baby.  Who the hell would have a second child if you remember what child birth was like the first time?

Doramy and Giles, my lovely friends are going to be my headgear helper to make interesting head wear.  I am not a pre bought turban kinda girl.  Expect to see plenty of flowers and colour going on.  Again please don’t bang on about how it looks unless I do.  I don’t mean to be rude but this is how i can deal with it all.

 A bit of silliness to lighten the mood coming up.

Here is me pre Op…….

Here is me Post Op!…..Much happier face ……

What else has happened in the last week?  One side effect of chemo can be either weak yellowing nails or stronger nails, and thankfully for once I have the better side effect.  I have never had all 10 nails so long and strong.  Better go get me some nail varnish.

Our lovely friends and neighbours are very kindly cooking meals for us on days when I am not feeling well.  These meals have been absolutly amazing and delicious and very much appreciated.  As an up shot of this I am going to try and put together a cook book of these delicious meals in the style of a scrap book with tips for those going through cancer and chemo, useful information i am discovering as i go along as well as tips for friends and family of how they can help, what to say and do at this tricky time.  I am not sure if it wil ever come off but I am having fun making notes, taking photos of the lovely food and it gives me something to focus on.  One of our NCT friends ( Kate aka Bobby) sent me a lovely pale Pink leather note book in a matching cover that at the time I was not sure what I would use it for as it is too nice just for everyday lists.  When the book idea came to mind I knew what to use this book for, it now has a brilliant use.

 Thank you Kate and “Be Golden”. who make the books. ( Check them out it’s a fab company)

Many of you will not know this but I love keeping a scrap book and have been keeping them since I was very young. I remember as a young child my Granmother showing a scrapbook she had done and that memory has stayed with me.  I loved all the colours and different style of pictures in it.  It, to me felt like a treasure trove of someone’s innner likes and emotions. My scrapbooking began with article written by Arthur Marshall cut out from the newspapers from the 70’s – 80’s ( he was a family friend), fashion pictures, article that interest me, exhibitions been to, interiors stuff and this years new one is a food diary of everything I cook, sometimes meals eaten out and new recipes that are tried and tested.  This food diary is looking rather good, although i say it myself,  and was/is my inspiration.

Until next time have a great week end and hope to be out the other side of this hair loss rollercoaster soon.

Love to you all. Xxxx

Today July 17th I woke up and for the first time in days felt more normal. I had energy. Got up made myself two fried eggs for breakfast on sourdough, ate them at the kitchen table while catching up on the Sunday papers and thought to myself, “ I remember this feeling”.  I then pottered around the kitchen , even made a banana and cinnamon cake for Hope, she loves that one, ordered a new microwave that I should have done 12 months ago ( great excitement, it’s being delivered Friday) and got around to measuring the garden gate that is completely rotten and almost hanging off it’s hinges and found a website that will custom make a new one and at a very reasonable price at that.

So, when I  metaphorically skipped to the hospital for 11.15  ( Hope, Huber drove me) to have my bloods taken and check my port was healing ok I was feeling chipper. The nice nurse took bloods using my port and it didn’t hurt one bit. I was amazed and thrilled how brilliant it was. So quick painless and clean. We, Hope and I, then sat around and around and around waiting for the results to come back. I had to add to the meter twice it was taking so long.

This is how dull it was waiting, this was our view!!

And this was Hope’s face at the wait!

By the third time of adding to the meter I was beginning to get like an antsy spoilt child who just wanted to go home and didn’t care. Funnily enough I think the staff caught onto this and all of a sudden my results appeared…… I was still full on energy and was expecting them to say all was looking good when what they said was my blood count was very low. “Really? How could that be?” But hey ho it was there in black and white. 0.3 when it should be 1.

So what next?  Well I have been given 4 preload syringes so that each day at 1 pm I have to inject my tummy with, to help my bones make more lovely blood cells. Don’t think I’ll be doing it to myself. No chance. No help from Hope either me thinks. Granny Annie or Nurse Annie on this occasion to the rescue. They gave me one before I left. What’s odd is I still feel so much less tired but have to watch out for bugs and germs. Need to do some exercise I am also told. Dog walk in the morning it is then.

It is now almost midnight and the bloody side effects of this drug has kicked in, low bloody back pain. Really? I need this like a hole in the head. Just got the number two situation under control, and now I have another issue. Let’s hope paracetamol help otherwise it’s going to be yet another long night.

Onto nicer issues as I feel I’ve done a lot of moaning of late. Doramy ( my sister in law) and Sabastian ( my nephew) came to lunch, arriving as we got home, and with them came a delicious lunch and a rather nice chilled bottle of white wine. We, including Hope, sat in the garden and had a very jolly time eating a scrummy salad followed by strawberries and macorons for pud.  My mind was taken off the bloody blood count and normality resumed for a short while. It was heaven.

Anyway that’s another day over and another day closer to the end.  Still got hair but expecting to find it on my pillow any day now!  Had a thought, might do a Boy George and paint patterns on my head. Note to self, find face paints in the morning!

 Night all! Xxx

 

 

So this is shit!  How do I feel? It’s a tricky one. Yes I feel unwell of course I have just been filled with poison. But it’s more than that. I’m tired, exhausted, frustrated as it’s lovely out there and I’m here lying on the bed not having the energy to do anything.

I feel sick, but is that nausea or just the fact that all the drugs give you constipation and even with all the laxitatives in the world (and boy I have taken everything with no luck) I’m  soooo bunged up. My tummy is bloated and sore. Is that nausea?, who knows.

I’m going to lose my hair. Yes we all know I’m going to and yes I had it all cut short so I get used to it but no one wants to lose their hair and yes everyone is very kind and says how it suits me but you know what, I wouldn’t have cut it short without chemo so no I don’t like it, don’t want to hear how it suits me or how I look like my brothers. I would rather have my pink hair and not be shit scared about going bald. I don’t know how I am going to feel when it comes out but I can’t believe I’m going to be “Wow I look amazing!” so let’s not even discuss it.

Then there’s the hunger, weight gain and all that shit. The drugs give you an appetite, do I really need one of those while lying in bed sedentary doing no excerise. No! And again the whole constipation malarkey doesn’t help. Hungry, feeling sick and uncomfortable. Fuck this is bollocks!

Let’s not forget the hot flushes. I of course thought this was normal for those of us going through breast cancer but NO it’s not. At least 10 flushes a day mostly at night finding yourself dripping, damp sometimes cold then needing to drink which then leads to getting up and having a pee. It’s relentless. What has my life come to. 4 litres of water a day, 20 visits to the loo, two baths a day, endless deodorant, mopping of the brow, sleep, awake for another flush not forgetting popping pills for all sorts of thing.  I feel like a hamster on a wheel. I’m going round and round in circles getting nowhere. And you know what, I can’t see it ending anytime soon. Plus trying to be human not just a lab rat!

Rant over. Enough said till another day.

July 13th.  3 Months to the day I found my lump.

It’s been quite a week.  I have tried to write a blog twice but my pesky iPad kept playing up so I am going to write the week up now in picture form…..

Monday, 9 am

Had to be at Princess Grace Hospital to have a Portacath put in. A Portacath is a small divice placed under the skin with a tube placed in a blood vessel so the drugs go straight into th blood.  This is so that I don’t have to have a cannula placed in my foot every time I have Chemo.  Dad dropped Mum and I off.  I hadn’t really thought about what the procedure would be but quickly once I noticed hospital gown, socks, stocking etc on the bed this was going to be a full on job.

Theatre ready!  All went very smoothly, although I was only sedated managed to sleep though the whole thing only to wake up. In recovery with a nice male nurse siting next to me.  God knows what I was wittering on about this time.  When I looked down this is what I saw,

 

Two bandages, the large one with a needle still in it and a thing hanging out of me. Interesting…..  Two hours later I was at home resting.  Thank was Monday over with.

Tuesday,  had to be at the Princess Grace Hospital for 11 so met Ash and Danny at 7am on Hampstead Heath for a fabulous walk, even managed a quick coffee while we were there.

This is 10am outside the Weelington Hospital about to go in for my first Chemo.  I was feeling so fit,well and happy.  Here’s me holding my Hospital bag given to me by Trash.  Filled with magazines, sweets, well to be more acuate gin and tonic gummy sweets!  A croissant, a packet of biscuits and crisps.  everything I might possibly need.  As soon as I entered it all began to happen but I did manage to eat my breakfast while they were flushing the dingly dangly thing out.

This really was the calm before the storm, after this photo the torture machine was placed on my head.

 

Here it is me being rigged up to the Cold Cap Mashine.  They start by wetting your hair before placing a thick rubber cap on your head followed by strap and so on.  Finally you are plugged in and the freezing of your brain begins.  Do I really need any of my few brain cells frozen like this??  All the while Nick was chuckling……  It really was torture and after an hour and a half at least and many tears, ( I’m not the sort of person who cries much) I gave up.  I couldn’t do it any longer, having nails driven into the side of my head for that long was toooooo much.  When they finally turned the machine off I wanted to rip the cap off but I was told I had to wait for 10 mins for it to de frost. What am I a tub of Ben and Jerry’s ice cream that needs to soften?  I must admit once it was off and I was warming up I knew I had done the right thing.  It’s only hair and it will grow back in 3 months. Lets embarrass the bald world for a while.  There are many of you out there and I’m coming to join you!!

One comment on the family watts app group that did make me chuckle but not enough to continue with the cold cap, was from William my nephew “ Only legends wear scull caps”

Once the chemo was over lunch at the ivy cafe in St John’s Wood, with Nick and Hope, if i’m going to feel shit let’s have a nice last lunch! Then headed straight to Dobney hairdressers in Highgate to have my hair cut. I thought I better get used to this no hair melarky so chop chop chop it went!

Ta da! Me and my new haircut. Takes a while to get used to it but i’m almost there now. That brings us almost to the end on Tuesday.  So much has happened in two days. That night while nick and Hope were next door having dinner I had a wee wobble, nausea kicked in, and I hate hate  hate that feeling. Not wanting to disturb them over dinner my friend Ash popped over cut me up some fruit and kept me company, then Giles called and joined the nursing staff, making me fresh ginger tea. I suddenly felt a lot better and realised with friends around I am going to be able to get through this.  It is going to be tough, horrid, emotional but that’s life.

Let’s move onto the rest of the week,  Wednesday, after having a better nights sleep than I was led to believe I would by he hospital staff Wednesday  was spent with Hope casually wondering up to Selfridges to try and find a wig for me to wear. Always like to be ready for every occasion. We found one, had lunch did some window shopping then came home. Rest time.

I walked Thursday morning as felt up to it but  then hit a wall while having a tea at kenwood so then came home and went to bed for the day. I mustn’t fight this I know, not like me to listen to my body, but I did and slept a lot. Similar Day on Thursday but no dog walk for me  rest and sleep. Friday followed a sililar pattern, some visitors which is alway lovely but now I have finished the 3 days of steroids which have been helping with the nausea and tiredness god knows what the week end will hold. Only time will tell.

I would like to take this chance to  Thank everybody who has sent cards, gifts, words of support, food, been to visit, read the blog or just send some love our way, it is all completely and utterly appreciated and without you all this would be a hell of a time. I’m sure it’s going to get worse before  better but there will be one hell of a party at the end of it. Mark my words.

Just wanted to finish on a happy photo, posy from my friend Giles, can never go wrong with mad colour  💕💕💕

July 7th.

This says it all!

Another  Glorious Day on Hampstead Heath

July 5th

I have been trying to write this blog for three days and have not finished it yet.  So much going on no time to sit quietly on my own and type, but here I am now so fingers crossed I don’t get disturbed.

So here goes what I have been up to this week.

Tuesday’s appointments were as follows, number 1 signing the consent form so I am now officially having Chemo. Once that was done I headed to see my GP for appointment number 2, I have a regular monthly appointment with her to check on how I am doing, feeling and if I have any questions. She gave me two prescriptions, hurray! One to help stop the hot flushes/sweats, yup still have them and they are dreadful, waking me every two hours in the night keeping me awake for far too long and the second prescription was for sleeping pills. I need some sleep, it’s getting beyond a joke.  Never taken a sleeping pill in my life before so that’s a new one on me. Final appointment of the day was to see Helen my Acupuncturist. I thought I would give Acupuncture ago to see if it will help.  You know what, I think it did.  I had the best nights sleep in ages.  Yes I still woke with a flush but only briefly and I think I got a solid 4 hours sleep without a flush.  I can see light at the end of the tunnel for the first time.

Wednesday’s appointments, I had an Echo-cardiogram so the hospital have a record of what my heart looks like pre-Chemo.  It was all ticketyboo.  It was like having  an ultrasound when you are pregnant but around my left boob not on my tummy.  All it did to me it was proved I am still alive!   This was followed by lunch with Hope as she came along to the appointment.  She headed home and off I went to appointment number 2.  My pre-treatment assessment at the Unit that will be doing the Chemo.  As I sat in the waiting room the realisation that this is really going to happen sank in.  A wee bit scary for a short while but then the Shit Happens kicked in and I was over it.  For the hundredth time I was talked though the drugs, how happens, what to expect, the what ifs and what to dos and finally shown around the place so I know what to expect on Tuesday morning. The whole procedure is going to take 4 to 5 hours so I might as well get used to it and know it.  As will all of you as I will have plenty of time to blog and include photos of me having treatment……

Today waking up it was great to know that I can now have the rest of the week and the week end to relax, get some jobs done and get prepared for Chemo.  How am I feeling about Chemo?  That is a tricky one.  Fine on the whole.  Nick and I have discussed it a lot and as we have said all along shit happens and you deal with it.  Yes I was upset and bloody cross when I found out last week but once I had absorbed the info and come to terms with it I just want to get started.  That is why I have had all these appointments this week. I am going to give the cold cap a go; basically if you don’t know what it is it’s a cap they put on your head while having the chemo and it freezes your head.  The idea is that it stops the chemo getting to the hair follicles and stopping the hair falling out.  If I don’t like it/ can’t get on with it the plan is to have my hair cut really short next week so when it does fall out it is not such a shocker. (That’s the advise from my GP, I trust her 100% on this one).

I am going to put this out there as I have not discussed this before.  I think if I do lose my hair and  it will be all of it, I might find that a head fuck!  (Sorry for the language, those who will be pulling a disapproving face right now)  But Hope assures me she will draw on nice eyebrows and will enjoy putting fake lashes on.  God help me, I might look like a drag queen or worse still someone from Love Island!!!!  I guess it’s all good practice for her before going to uni and doing her course.  You never expect to see yourself bald as a woman and as hard as you try when hair is wet it’s just doesn’t look like you’re bald.  The big up side is wigs.  I love a wig or a hat and have plenty of scarves so I will become a north London tribal warrior with a new headdress everyday, Bring it on!