My Curved Ball

I’VE BEEN DISCHARGED..!!!!!

No more hospital, no more appointments…. and in case anyone is interested (and I promised I would tell you) ~ total length of all my scars = 127cm.

Oh, and Mum had her vaccination!

x

I’ve just received such a lovely message from someone who read my blog. I feel so honoured that someone who has gone through the same procedure and similar treatment plan as me feels that they are happy to share their story with me. So, Sophie, thank you.

When I was responding to her, telling her how my last op had gone I realised I hadn’t updated this. Apologies.

So, I had my last op on 9th October 2020 – it went really well except for a rockingly bad allergic reaction to all the internal stitches that were in me which lasted for about 10 days (itchy, scratchy doesn’t even cover it..). My theory is that after having them inside me on numerous occasions, my body had recognised them as the enemy and decided enough was enough!! 

After a few weeks of healing, the results of my op is a sparkling new left nipple and after the de-bulking (love that phrase!) I’ve gone down a couple of cup sizes (200gms to be precise) on the left hand side so now I am balanced.. Yay! It feels so good being able to wear a bra that actually fits both boobs properly. The scars are starting to fade and I actually do think that my confidence is starting to return, slowly, but I don’t mind looking at myself in the mirror now which is a pretty gigantic step forward for me.

I’d like to take a moment to say something…. THANK YOU from the bottom of my heart to Philippa Jackson and her team in the Breast Reconstruction department at Southmead and of course the heavenly ‘Caroline’s’ – Caroline Oates and Caroline Lewis – who have walked/supported/massaged me through my biggest procedures and lowest points over the last two years. Between you guys and Mr Raytor and the remarkable team in the Breast Care Centre at Southmead, the radiologists, research nurses, and the nurses at the Concord Medical Centre in Little Stoke where I had a lot of my chemo and PICC line maintenance, and of course Charles Comins and the Oncology team at the BRI – I owe you not just the physical rebuild and the treatment plan, but my life.  

So, where are we today… I’m still on the tamoxifen which has it’s ups and downs, I’ve only got two years to go but am not allowed to change to a different drug as my periods have made a reappearance after I thought the chemo had sorted out the menopause for me. Tamoxifen is the only drug which pre menopausal women can be on to continue the breast cancer treatment. It can make me feel a bit tired, bloated and constipated but I guess its a small price to pay for keeping the cancer away.

Do you know what, after a rather hotch-potch showing for the last three years, I have now had two proper periods on the trot, slightly heavy and marginally annoying as it was going to be the one good thing that the chemo was potentially going to halt, however, I do think that it’s my body sticking two fingers up to all the drugs which have been pumped into it, let alone the cancer and saying “Yep, is that all you’ve got..? Still here and still working…!”

Going forward, two things I must mention…

Firstly, I have done it, I’ve launched my dream, www.wevegotitcovered.co.uk – a website selling fun and comfy Head Coverings and PICC line covers and also Stoma bag covers.

Secondly, just for a laugh, I’m going to measure all my scars and see how many inches I’ve got… I’ll report back when I’ve found my tape measure…

Thank you for reading my waffle yet again…. Please do get in touch, I do love to have a chat/message/email with anyone who likes to compare notes or just needs a general download – I always say, a problem shared is a problem halved.

BIG HUGS to all and have a truly wonderful Christmas in whatever shape or form it takes.

xxx

Every cloud has a silver lining – even a huge, dark, brooding COVID cloud.

The Oxford Dictory Definition of A silver lining: “A sign of hope or a positive aspect in an otherwise negative situation. The phrase is often seen as part of the proverb “Every cloud has a silver lining”, meaning that there’s hope or something good to be found in every bad situation.“

The last few enforced months of peace and quiet have given me a chance to calm my mind and process all that has happened to me over the last three years.

I will admit now that I’ve been very absent from here as I didn’t particularly want to inflict the inner workings of my mind over the last 18 months. 

Weirdly, even just trying to organise my thoughts for this cathartic download to you all is already making me feel lighter and happy, I truly should have just done it sooner, could’ve saved myself a whole heap of angst. 

OK… So… Oh. My. Word.

I need to back track a little… I’ve just found some notes which I wrote on Tuesday 13 November 2018 – a bit telling about my frame of mind at that time methinks.  Again, weirdly, I say that I’m going to get down to business with some emotion and then don’t…

High time for an update – Hello Stranger, I hear you say. Aha, there she is I hear you say.

I’m Sorry..? Spot the question mark? Does just one word cut it for being such a shabby blogger? Last post was on the 20^th May… I had no idea that so much time had passed since I last put keyboard to screen.

Right, let’s do a quick six month summary and then get down to business with some emotion.

Had a wonderful week at Chelsea Flower Show – felt useful, clever, professional, smart and loved. I really do like working that venue.  And the fantastic news is that I’m booked for next year as well so I must’ve done something right.  I really didn’t have any obviously problems with stamina, energy levels stayed up, which I guess was helped with the adrenaline coursing through my system!

Goodness, I’m having to check my diary, very frustrating that I now don’t appear to have any capacity to retain memorable moments! Not sure I can put that down to chemo now, more like the fact that I am another year closer to 50!

• Mum got a new kitten ‘Lucy’.
• Special Day out at Harry Potter World.
• Herceptin sub cutaneous injections continued until mid August 2018.
• Joe and I tried to re-train Winston – still not worked… I’m a crap dog trainer.
• Joe’s SATS – done and passed with flying colours.
• Breast cancer and big boobs don’t go together. (2^nd Oct 2020: Quite clearly, I was still not happy with implants..)
• Hel’s 50^th birthday – such a lovely weekend, but marred for me by having a big, unexplainable bleed.
• Thought I was coming off all medical lists.. and then because of bleed got added to gynae for further investigations (2^nd Oct 2020: Had lots of tests as they wanted to be sure that the tamoxifen hadn’t caused womb cancer, all clear and fine)
• Big job working on Dublin medical meeting, got straight to work on that one – meeting scheduled for June 2019 (2^nd Oct 2020: went ahead successfully)
• Another job in Athens confirmed for September 2018, lots to do over the Summer of 2018.  Had to hit the ground running and had to shake off the chemo brain as quickly as possible…
• Joe finished primary school
• Had a couple of dreadful group post cancer counselling sessions – not going to mention which organisations they were but realised group sessions aren’t for me

WELL – Now I AM fifty (that happened with not much pomp and circumstance and just a rather lovely, COVID dictated small celebration)… and I am sure that my brain has gone a little bit more to mush. 

I now know that I WAS definitely avoiding putting my thoughts down on paper as I have spent the last year or so doubting myself, or to be correct, my body.  However, I do truly feel that I am out the other side, albeit slightly battered and bruised, with a patch work of scars (I no longer describe them as my cancer battle scars – to be absolutely honest they are just a bit of a mess)

So, to summarise what’s actually been going on…

Over the last year or so I felt as though it wouldn’t be the right thing to say that I’d been having some bad thoughts about my health and the future.  But I now realise that I shouldn’t have been ashamed of that.  I just didn’t and still don’t trust my body.  Because the word remission doesn’t seem to feature in cancer treatment programmes nowadays, when you’re discharged from oncology you live in a sort of constant flux of “Has it come back”, “Will it come back”, “When will it come back”, “How will I know whether it’s come back”…

So therefore I threw myself into work.  I had lots of lovely projects to work on and restocked the bank account.

Then there was the BIG op, I didn’t call it that beforehand as it was billed as a bit of a straightforward rebuild of the left boob.  Well, by heck… I think I can safely say this was the worst bit of all my treatment.  I had a Diep Flap reconstruction, I think I have probably mentioned it before, but goodness, it was a toughy. 

In short, on the 20^th August 2019 I had a 10 and a half hour op to take out the implant that my body never really accepted and move some of my tummy to rebuild my left boob.  I won’t go into details, but it hurt and took a long time to get over.

It meant that really up until Christmas time I was still feeling the effects, to be honest, I still have a bit of a struggle now locating my stomach muscles and general core strength.  But I have just started trying to pay a little more attention to myself and do some pilates to help that along.  It is very, very strange how after all that has happened to me, I seem to be incapable of helping myself.  That ‘Self Destruct’ button just sometimes won’t go away…

At this point my social life had pretty much ground to a halt.  Confidence was at an all-time low, it’s a pretty hard thing to hide that when you are known for being a social able being.  I managed to make a dear friend’s hen-do and wedding in June, another very dear friends 50^th Birthday celebrations in July and one more very special friend’s wedding in October but that was it.  For each one it was a case of…”Deep breath and hope no-one notices me or asks me too many questions..”.

By the end of October I started to throw myself into work and driving Joe around to various Tae Kwondo competitions and we managed to get into a good rhythm and routine.  Unfortunately, I seemed to have an undercurrent of “When is the cancer going to come back?”.  I think that this rather dismal way of thinking was actually normal, it’s just that no one tells you that it is.

I realise now that it doesn’t always have to be that way.  I know that not everyone is as lucky as me, and for some it does come back, but I have also realised that if you live in the shadow of cancer then you don’t move forward.  If it’s going to come and get me again, then so be it, I’ll fight that battle when it happens.  But I’ve got to get on with things in the here and now.  I KNOW I am high risk, I’ve bloody well had it, and for all I know it may still be lurking in my blood stream, but it’s not here NOW.  I became so paranoid about it over the last six months that I’ve requested extra CT scans, which they’ve done, and all is clear.  I need to trust the medics and all their whizzy machines and get on with life.

And then… Dah, Dahhhh… along came COVID, which I am definitely not going to go into here, except to say it took many attempts to get myself off the government “At Risk” register.  They were very happy to send me bumper packs of mushy peas and pasta, but heaven forbid I go and visit my mother…. 

One thing I will say though at this point, is that it is truly heart breaking to see the empty waiting rooms in the breast care centre.. Please, ladies… if you are reading this and you think there is one little teeny, tiny bit of women’s intuition that you think something may, possibly be wrong with your boobs, GO AND GET YOURSELF CHECKED…time is so important and all the clever people are there ready to check you over and help you.

So, after a few months of home schooling, an events business that tanked in 48 hours flat, some wonderfully special quality time with my two boys, one four legged one obvs.. – it was time to find something to do to fill my time and re-evaluate.

Enter Stage Left….Jolies Fleurs and Joanne Preece – in a moment of madness (and hysteria from not having enough to do), I phoned a local florist to see if there was anything I could do to help her out.  It was 10 days before load in for Chelsea Flower Show… I think subliminally I may have been missing flowers…

Well, in her I found a tranquil, inspiring, kind, creative, small business and it’s owner who has subsequently been teaching me about small business ownership and how to arrange and deliver a jolly good £35 hand tied bouquet.

Then, (via the flower shop) I met Katie, a local and rather brilliant seamstress, and now we are working on a little venture that I will tell you about soon… Something I wanted to do ever since my headscarves arrived from America back in 2017.  I wasn’t brave enough to do it before, but now enough time and reflection has passed.  I want to try to give people that wonderful feeling I experienced.  On a crappy day something arrived in the post which I put on my bald head which was bright and lovely and fun and made me feel a whole heap better.

One last little thing, and probably the thing that has made me want to come back to my blog… Next week (after the statutory COVID swab) I will be having my last bit of breast surgery…!  I am actually excited.  This is a bit of a tidy up, a ‘de-bulk’ as the professionals say… plus adding a nipple back on… and the last chapter of what has been a bit of a tedious and painful journey.

And so here we are, life is yet again coinciding with my Daddy. The 6^th October is the anniversary of when he died, I still have a little natter with him pretty much every day, I think he’s getting back at me for bothering him by making sure that someone stuffs a Q-tip up my nose just when I am supposed to be remembering him!

Well, in hindsight, that was never going to be a short, punchy post… that’ll teach me for leaving it so long

Big hugs

X

On Friday I arrived on site at Chelsea Flower Show.

This time last year I turned up knowing that I had a stonking big secret and I had just the best week of normality with my wonderful Chelsea family. They truly did set me up for my treatment plan and they didn’t even know they were doing it!

This time I walked on site with quite a feeling of trepidation… what would be the reaction of everyone to the curly, grey haired, cancer induced restyle?

Well, you know what, it just doesn’t matter. I’m here. That’s what matters.

There have been a few shocked faces, a few leaky eyes, many MANY hugs (of course, I’ve had a year to adjust, some people who I’ve seen in the last 48 hours have had about 5 minutes to prepare their faces and reactions for a suitable response).

There’s one thing that hasn’t changed… I’m still the same bossy, irritating cow – control freak/OCD mode is still functioning much to the dismay of many of the marvellous crew that are onsite!

Here’s to a great week!

xx

I have been very wary of posting my latest train of thoughts.

It’s been suggested to me that I shouldn’t formulate my recent random notes into a blog post as it’s too negative and not ‘me’.  That advice has been duly taken on board, but after much deliberation and procrastination (and a little nudge from someone who felt that I should continue with my general outpourings as the process makes me feel a whole lot better and lightens the load), I have decided that I have to go ahead anyway as, although it’s a step away from how I am usually, it IS how I am right now.

When I was going through treatment and all its trials and tribulations, I read about how hard it is to cope after chemo… What a load of twoddle, I thought!  Surely you just say one big “Hurrah!” and get back to normal..? Well, no… not quite.

Below is a copy and paste of something I jotted down on the 10^th February (a while ago I know, but I told you I had been procrastinating…).  It was another of those “sitting-on-the-edge-of-my-bed-about-to-go-to-sleep” moments.

I think this is where it really begins, this is the time for acceptance of the new me. What I now look like, what my future holds, my empathy towards others who have cancer, the lessons which I have learned and can pass on. The learning curve has been steep and has now plateaued but I don’t know whether I’m going up or down now.

Tonight I sat on my bed all at sixes and sevens… and the bizarre thing was, I’ve got no idea really what about, just a whole heap of muddled thoughts.

•  Work
• People’s perception of me
• Aching joints
• Cancer reoccurring
• Being a rubbish mum
• Find more work
• Having a crap left boob
• Constipation and flatulence
• Not replying to emails of support
• Secondaries
• Comparing my life to my Contempories 
• Pension
• More aching joints
• Savings for Joe
• Hot flushes
• When’s my next scan
• Rubbish hair do
• Flakey nails
• Money (or lack of it)
• Sort will
• Checking for lumps

 Can I still blame the above on chemo brain? Time to find a way to break the cycle…

 No one has mentioned the word ‘remission’ to me. I’m not even sure what it means, or whether the word has any substance at all, yet, even though I have had ‘curative treatment’ no one has said I’m cured. So where does that leave me?

Reading this back, the interesting thing is that I haven’t found a way to break the cycle.

The questioning thoughts have just become larger and bigger beasts.

The left boob is still annoying, painful and hampering normal movement and life.

Every joint ache is potential cancer, every blocked bowel movement is potential cancer, every sore gum is potential cancer and every headache is, yes, you’ve guessed it… cancer.

What’s tough is this – I’ve finished my treatment, I’m done. I know, it doesn’t make sense, I should be the happiest person alive.

I’ve been cocooned in the most amazing bubble of clever doctors and nurses treating me, wonderful caring family, amazingly patient and kind friends, and now…. I have to deal with this on my own.  Everyone around me is happy for me, and quite rightly so, to all intents and purposes I strolled through my treatment and came out the other end relatively unscathed.

The smile is still on because I’ve learnt to fix it there.

But you know what, now is when the heavy mental work begins – THAT is what I’ve realised.  I have to do this alone. There are huge sighs of relief all around me because I’ve finished my treatment and everyone can get back to normal and can move on.

When I named this blog ‘My Curved Ball’ I didn’t realise quite how apt that would be – I feel as though I’ve been drop kicked out of the park. I am now that ball. I’ve been carried along as part of a team and now I’ve got to get back on side but I’ve got a bit stuck in the bleachers and have to find someone to toss me back into play.

I think that this is a time thing. I think that the huge feelings of mistrust that I have about my body will start to ease.  My body has let me down but I have to somehow or other find a way to forgive it and move on.

I hope that should any relevant people who may by chance be reading this, understand and believe my next statement to be true; my current state of mind does not affect my day to day life, or more importantly, my ability to work.  In fact, day to day life and work keeps me just that little bit more positive, normal and sane.

You will know by now how I like my little “Next Steps”:

On Tuesday I see my surgeon and lovely clinical nurse. We are talking about when my boob is going to feel better and then hopefully book me in for reconstruction. I know… that sounds like I am being very greedy as I have had recon already with my implant. There is nothing, however, in my life right now that I dislike more than my left boob. An implant is a horrid, painful sensation that is just a big, solid lump stuck on your body. Why in God’s name anyone would pay to have breast implants is completely beyond me. I have decided that I would rather go through the pain of more surgery and try the DIEP flap recon than stay like this forever.

Need to get the dratted Herceptin injections finished as there’s a chance that they could be what are blocking up the digestive system and numbing my finger tips.  Got a bit of a wait, the last one is scheduled for 6^th August. In the meantime, this week I’ve decided to start to make some adjustments to my diet to try and help things along.  Time for a detox…!

This week Joe is back to school and I am looking to try and get a lovely, normal daily routine up and running. We’ve had a cracking Easter holidays but it’s time to get back to the lists and structure.  Right now, quite frankly, that really suits me as then I have the chance to assert a certain amount of control over some things!

It’s payback time.  I want to be there for friends and family who are having tough times right now.  There’s nothing like receiving a whole heap of care and compassion to want to give it back in bucketful’s.

To keep walking my five miles a day with my heavenly four legged therapist (look at him – all grown up now!).

Hope that my hair grows quickly enough to create a smashingly, fashionable ‘elfin’ hair-do before I go on site for Chelsea Flower Show in May.

 

 

PS.

I’ve realised I didn’t share the photos from our second Chemo Collection which we did in December.  Here they are…!  A bit out of date as I have a smidge more hair than that now as can be seen in the quick selfie that I’ve just taken.

There you are I hear you say… where have you been?

Yesterday a member of staff in WHSmith uttered the remarkable words, “It must be your lucky day?”.  Granted, this was only due to the fact that I managed to buy the last Beano Annual 2018 which they had in the shop (and incidentally, The Mall, therefore potentially the whole of North Bristol) – but you know what, after the 10 weeks which I’ve had – I’ll take that.

There have been two reasons as to why I’ve been so quiet.

Firstly, my Dear Daddy passed away on 6^th October. It goes without saying that when someone who is so important to you is suddenly not there, it really does feel as though your whole world is knocked of its axis.

This is the first time I’ve felt nearly able to write again since that date. Yesterday was his birthday, he should have been 84. Maybe we should have told funny stories and celebrated his life, but actually all day I felt terribly sad and it just proved to me that the Papa shaped hole is still there and I desperately miss him.

Last night I sat on the edge of my bed for quite some time, trying to figure out why life was so rubbish right now and the only conclusion that I could come to is that that hole will never, ever be filled.  It must be re-shaped, re-modelled so that we can all move forward. Papa would be bloody furious with me for not picking myself up and dusting myself off sooner, but then he never did find out what the other reason was as to why I’ve been quiet. I chose not to tell him. I hope that he can forgive me for not knuckling down and getting on with life sooner.

So secondly, a week or so before Dad died, I found out that my chemo was not working. Lump 1, 2 and 3 were still present and not shrinking.

To cut a long and rather tedious story short, after seven chemo sessions, the mastectomy was back on the cards as the lumps were too large and spread out to do anything else.  The clever surgeons suggested some very complex surgery which involved taking my stomach and rebuilding my left breast with it, in the same operation as when they chopped the cancer out (a DIEP Flap micro surgical breast reconstruction for those in know). At the time, the opportunity to have no cancer, a new natural boob made only from me and a tummy tuck seemed too good to pass up, but after an hour spent with a rather challenging Russian plastic surgeon at Southmead, that was taken off the table.  This was due to a combination of her suggesting that the fact I had smoked a cigarette in the last 12 months, drink wine and was emotionally unstable (her words, not mine), that the operation was not viable. Oh, and for the first time ever, I didn’t have enough tummy fat for her to work with – who knew? All that and then me finding out that the one operation that I was expecting with an 8 week recovery turned into three operations with a 12 week recovery for the middle one. Not an option when we were desperately trying to be appointment and hospital free in 2018.

So, I was called back to the Breast Care Centre for option number two which seemed perfectly acceptable; left breast mastectomy with immediate implant reconstruction and saving the nipple at the same time (crazy Russian lady didn’t offer to save my nipple did she, yah boo sucks to her).

That happened four weeks ago and my God, this has been the worst four weeks of treatment so far. Just as I was stolidly bedding down for recovering from major surgery, and let me tell you, it bloody well hurts, I then get hit with the double whammy – when they stuck my removed mammary gland under the microscope they found Lump No. 4… Who knows whether it was there before or is a new guest to the party, but it was in a lymph node near my armpit.  I received the letter today from Oncology confirming the details with more medical mumbo-jumbo than I have seen for quite some time.

Reading between the lines, this means that the chemo has worked. A bit. It’s checked the cancer but not provided the magical cure which was hoped for. The special HER2 receptors which were going assist the Herceptin in blasting the cancer are being overshadowed by some very strong Oestrogen receptors which are muddling everything up and making a nuisance of themselves.

Next steps – Herceptin injections once every three weeks for a year are to continue, Tamoxifen tablets start tomorrow, one a day for five years, and I’m back on the list for three weeks of radiotherapy starting ASAP.  General consensus is that the Tamoxifen could be the one to do the job, but all other treatment is being thrown at it as well.

I pride myself on being able to dig deep and find the positives in the face of adversity, but I’ve got to hold my hands up to this one – I was beaten, just one more kick in the teeth too many for this year. My boob currently looks like a very large, swollen blueberry, but that’s nothing compared to the battering my emotions have taken.

Anyway…

Last week I was able to get out and about with my gorgeous four legged friend Winston. That has made me feel a lot more positive and cleared my mind a little.

Joe and I went for our second Chemo Collection photo shoot. Nice to do something fun with my boy. No pics yet, they’ll follow.

Joe is bearing up, he is angry that we are not all done before Christmas.  He’d never admit this, but I see it coming out in different ways.

I’m angry as well. Very angry.

I am so very , very sorry that my Mummy and Sisters are still having to tread this path with me, it’s just not fair.

I am fed up with being poked and prodded, but I know I have to accept all forms of treatment offered so that I can say to Joe with all my heart that I am fighting this as hard as I possibly can.

I haven’t got around to writing any Christmas cards yet, I’m sorry. I’ve no excuse. I have had plenty of time, stuck in the house for the last three weeks, but have had a huge motivation issue – Shoddy, I know.

I started my Christmas shopping two days ago and have finished it.

I’m going to a business meeting with some very wonderful and patient people tomorrow who are putting up with the ‘HypochondriaChick’ as they have renamed me – thank you L and crew for bearing with me. The sanity of talking food and wine rather than chemo and painkillers will be heavenly.

Merry Christmas to all – I promise, I won’t leave it so long next time.

BIG hugs

x

That’s quite an understatement.

Sitting in my comfy chair in the Oncology Centre at the BRI, waiting for next drug to be delivered from pharmacy. Passing the time talking to the caterer about final arrangements for Dad’s memorial service, taking notes on the back of a packet of steroid tablets.

Last chemo today, so PICC line will be coming out thank god. Should be feeling happy but it’s all a bit bitter sweet. Dad and I were fighting this battle together, but I know that what is currently being pumped into my body ultimately was what weakened him so much that he couldn’t come back from it.

I love him so much for taking that risk to try and get better as that is what he wanted more than anything.

Having a special quiet session for my last as Dad is with me every step of the way today, it’s been macaroons with my coffee (one of his favourites) and his bangle is firmly in place with all my other good luck charms.

Right, off I go to Tesco online to order some booze for his send off next Tuesday… We know he wouldn’t have wanted it any other way.

This ones for you Daddy – My guiding light, my rock, my sense of reason and calmness in every storm.

x

This is all just a little bit crappy right now. Why Dad and I at the same time?

Not fair.

Can you believe it takes a couple of doses of pre-chemo steroids to get the Shabby Blogger typing again…  Thank the lord I still only have to take them for three days, trouble is they’ve doubled the dose for cycle nos 4-7 and my brain is now whirring like a mad thing!

I’ve been told off by four people for ‘being shabby’ and not updating my blog – I am now feeling suitably chastised so here we go.

This manic mind happened last time actually, no proper sleep for three nights – doesn’t really help sustain the positive thoughts that are required to get through chemo when you are completely knackered.  Off like a lamb to the slaughter for Chemo Numero 5 tomorrow.  I know it is going to make me better in the long run, however, it still doesn’t ease the inevitability of feeling like crap for a week after I’ve been pinned to a chair for five hours hooked up to bags of poison as they are drip fed into my veins via my current arch enemy… The. PICC. Line.

On that note, a couple of wonderful nurses at the Oncology Centre became my heroes pretty much exactly three weeks ago, when they agreed to take the fish hooks bit of my PICC line out – I think it was the pathetic face that I pulled whilst telling them that I could no longer hug my son properly without shooting pain in my right arm.  Apparently they had shifted a bit anyway, the pain had become a constant reminder that I am “ill”, even when I could forget about everything else in my good weeks.  Therefore, from that moment it has become more manageable (still a blooming hindrance, but so very much better!). Those little bits of metal above the orange and blue clip which held the line in place were the culprits – sorry for the grim pic, but I like to share my pain with all!  Anyway, back to the old method of holding the line in place with a bit of double-sided sticky tape so it stays exactly 5cms from my heart…

Moving on to the last three weeks. In summary; it’s been a game of two halves.

The Good Half

I have had the most wonderful Summer holibobs with my son.  No work apart from one 2 hour conference call in the whole 6 weeks. This has been a major silver lining moment, only made possible by quite remarkable friends and family who stepped in exactly when required to help with son and dog, and then stepped out with incredible sensitivity when not needed so Joe and I could have our time together. I am still trying to work out how on earth I am going to repay everyone when all this rubbish and faff is finished with.

We discovered the best way to treat mouth ulcers… Marshfields icecream parlour for a late lunch after a walk at Westonbirt – works a treat!

Got to see the Kent posse again (AKA Sarah and Ben, thank you honey for enduring the M25 yet again!) as they made their second visit of the Summer West bound to us, always means a couple of days of normality, ridiculous chat and few glasses of Prosecco (Yes Mum, she DOES lead me astray!!)

I’m loving my time spent at the Concord Centre in Little Stoke with Charity and Debbie. It’s like turning up somewhere where I am normal (well, I am when I’m there as we’re all in the same boat at the Chemo Clubhouse!) Those ladies are dealing with people in dreadful circumstances with constant smiles and delicate emotional support, I honestly do not know how they do it. I consider them my safety net and comfort blanket now. I know if I ask them a question they will give it to me straight and be completely honest with me (thank you Debbie for the Cycle No.4 run down – I was completely unfazed when I got there as I knew exactly what to expect – forewarned is forearmed), they are the ones who see what this treatment is doing to us Cancer peeps at the coal face, on the front line, and they can tell it as it is. Charity just exudes this serene calm which makes you feel completely at ease and actually really very happy with life – you can’t teach that sort of skill.

Had a complete unintended re-evaluation of priorities which I am so sure meant slightly less nagging for Joe as I didn’t get so hung up on the detail. Having dinner on time and making the beds just didn’t seem quite so important. Note to self: must get back on track and snap out of slovenly ways…

General timekeeping of morning routines are much quicker nowadays as Joe tends to wave a flannel in the vague vicinity of his face for a nanosecond, I have no hair to condition and the hair dryer is redundant, and tracking down the 8 eyelashes I have left with the mascara doesn’t really seem to be worth it unless it’s a special occasion.

We’ve had some lovely time with Auntie Ali, Gaggy and Papa over the last couple of weeks, even managed a family curry night (out at a restaurant) last week with G & P and H & J – now that would’ve been unheard of a couple of months ago.

The four miles of walking a day is continuing – finished off with 4.6 today so still on track.

The Bad Half

Let’s just rattle though these quickly – as ever, I like to share the grisly details…

The Consultants’s time line and predication’s were spookily correct. Exactly on cue at 10.00pm on Thursday night (Chemo was on the Tuesday), the aches and flu symptoms started – don’t think there was a muscle or joint in my body that didn’t hurt.

Like a wimp, went to bed this time for three days, I am sure this was because I could as Joe was in London with his Dad, and Ma and Ali were in charge of Winston.  So much of this bloody procedure is mental, a real mind over matter.  Felt cross and frustrated that it seemed more debilitating than the other cycles, even though there was no sickness or nausea at all.

The ‘Eat.Talk.Breathe’ choice procedure had started before the aches so I can only presume that the steroids have something to do with that.  (I noticed it this evening actually when on the phone so never fear dear friends, I think you’ll have a quiet few days from now!).  This is when my oesophagus seems to cease up and just gets too painful to swallow and air doesn’t flow as efficiently as it should.

No proper eating for four or five days, didn’t once feel hungry so it totally killed the appetite (as soon as any liquids or solids hit my stomach the reflux started as well which was a smidge off putting when it came to consuming anything). Nearly went down to pre-teenager weight which was a very strange concept for me… but this time eating kicked back in pretty much immediately when we got to 7/8 days and had no problem stacking it back on again within a week!

The promised reversing of bowel functions never did happen….until last night….a relief in a perverse sort of way after being blocked up for about 3 months.

The Friday night in the first week wasn’t a barrel of laughs. Had a small SVT episode (very small, not a big drama, just enough for me to call in a wonderful friend and neighbour (thank you Nic) for a bit of monitoring). For those who weren’t aware SVT is ‘Supraventriculartacicardia’ when your heart misfires a bit and decides to run a little marathon and goes too fast. I had an episode a couple of years back and ended up in hospital over night, so I could spot the signs and not panic too much as it does pass. I think this has always been a little niggling worry in the back of my mind as the drugs put a strain on the heart.  Anyway, my standard echo cardiogram check up is due on the 14th September so it’ll be checked then.  I am completely fine now so I don’t expect any back lash from this.

Also on the same Friday I found another lump in my right boob – now, that was a surprise. Made a call to the Breast Care Centre to check whether I should just wait for my assessment which I am having with them on the 12th September, but they had me in the next week and it turned out to be a cheeky cyst that had decided to appear just to keep us all on our toes – drained and dealt with within 30 seconds. Could really have done with out that. I sort of knew that it would be a particularly stupid lump to appear at this stage of the annihilation process if it was a nasty one, but it was nice to be reassured that it was nothing other than a bit of fluid.

What else? Oh, got very excited by a small chance that was raised that I might’ve only been booked for 6 cycles and therefore only need 6 cycles. It’s bizarre how the difference between 6 and 7 suddenly became so important, it just meant that all the yukky treatment would have been ticked off the list by the end of this month, operation therefore sooner, radiotherapy therefore sooner and done with three weeks to spare for Christmas shopping. Anyway, The Boss (ie. clever oncology consultant) scuppered that plan last Thursday and confirmed, albeit very apologetically, that I need 7 cycles as they like to do at least four rounds of the hormones to catch all the HER2 bits and bobs. Big disappointment, but I’ve got over that now. What has to happen will happen, I’m not going to quibble over three weeks when they are fixing me up for good.

Although I don’t have any significant numbness or tingling in my fingers, I think that my nails maybe revving themselves up to fall out as the cuticles have disappeared and I have lines across my nails. Apparently you have one white line for every chemo session, which is what I have, another interesting fact I have learnt this week. My squeamishness is going to be tested to the max if this does happen. Black, green, loose, flappy nails are not something that I am looking forward to…at all.

Right, the plan for the next few weeks:

• Chemo tomorrow, this one is NOT going to get me.  Consultant did say that after the first one of the HPT cycles chances are your body will acclimatise to these drugs and it may not be so bad – well I’m going run with that predication – he was right last time!
• 12th September – Assessment with Breast Care specialists.  This will be an important meeting. They’ll scan to see whether my little friends, Lump 1, 2 and 3, have done a runner and disappeared and then based on what they find (hopefully just some little metal clips), then we decide on type and style of operation and set a date.
• Today I started getting some work sorted out with some very patient and wonderful clients and friends. Now my little honey has gone back to school, and the routine of one bad week/two good weeks seems to be continuing, I can think about cranking the grey matter up which is in danger of festering away to nothing soon.

I think that’s quite enough for now!  Off to read my book, I think my drivel will have worked on you guys but unfortunately it hasn’t worked on me…

BIG hugs

x

PS.  A MASSIVE, HUGE thank you to the beautiful, caring messages that are still appearing from friends past and present.  They really do mean such a lot. It’s my mission next week to start to reply to them.

 

 

 

 

Well, firstly, many apologies – I had no idea that it has been nearly a month since I felt the need to empty my brain onto the keyboard and screen.

Tomorrow is Chemo No.4 and I have to admit that I am filled with a little trepidation as to what will happen as I am moving from ‘FEC’ to the ‘TH’ stage of proceedings. Just as I acclimatise to the side effects of one cocktail of drugs, it’s all change.

Now for the science bit – Fluorouracil, Epirubicin, Cyclophosphamide have finished their 3 cycles. Now Docetaxel (otherwise known as Taxotere, hence the ‘T’), Herceptin and an extra one called Pertuzumab take over to do their stuff – pretty exciting really as we’ve reached the business end of treatment now.  The H and P are the ones which are targeting the HER2 gene which is making such a particular nuisance of itself.

Panicked a little on Thursday when the consultant took my super strength anti-sickness tablets away from me with a jolly little, “You won’t be needing these anymore” comment. She has reassured me that sickness is VERY rare with the new drugs, heaven help her if she’s wrong… That’s being replaced with severe flu-like symptoms from day 3-7 (a tad on the precise side methinks, best get prepared from that one as until now its always be a bit more general with various loopholes and personal variations), aching joints, fatigue, flaky/falling off nails, etc, etc.  Those are the main ones anyway.  To be honest, I’ll be happy if the dizziness, sore eyes and runny nose stops.

Lets cheer ourselves up with a few Silver Lining Moments:

• Priorities – having cancer really sorts these out. The last two weeks have been heaven, totally orientated to Joe and having fun.  Completely took advantage of my ‘Good’ two weeks.  Sod housework, cleaning the car, filling up the bank account – that can all wait.
• Skin – I’ve been having the most effective facial peel every three weeks – thanks chemo, you can send the bill later! OK, so this is aided by four days of super itchy, sore and red skin towards the end of each cycle, but then the itching stops, top layer of skin flakes off and ta dah! lovely new shiny face emerges – maybe if it continues it will erode away the wrinkles as well.
• Bowels – constipation has been a real pain.  Anyone who has spent any time with me which has involved walking and bending over slightly will have realised this (sorry to some of my nearest and dearest who will have experienced this very gracefully, or with great amusement!). Joe has now admitted defeat in the battle-of-the-farts.  I am reigning supreme. What is the silver lining bit here you say? Well, the TH section we are moving onto apparently will take my inner workings the other way – therefore, I am assuming I will ‘break even’ and am hoping the breaking wind will subside.

So, what else has gone on over the last four weeks?

Chemo No.3 went as planned on Monday 24th July – followed by two days of slight nausea, six days of slightly under the weather and total eyeball disconnect again.

Day 3 had 47th birthday. Perfect day of relaxing in amongst the dizzy spells and providing great amusement for ‘Ickle Sis Ali and Joe as they gave me a new haircut.  Then drank half a glass of prosecco with the family, very happy as Papa made it up to ours in the evening.

Day 8 snapped out of yukky, dizzy Chemo Brain as suddenly as before.

Day 9 drove to Kent with Joe and Winston to see BFF Sarah and family, drank prosecco properly (yippee yey!), walked dogs and lay around like a lazy toad while Sarah took over – love her to bits ♥

Day 12 drove home

Day 13 unpacking, washing, repacking

Day 14 went camping with friends for two nights in South Wales. The sun dances worked and we had perfect weather in our own little sunny micro climate, perfect sunsets, perfect coastline, perfect marshmallows and fire-pits, perfect company and this time even ventured into the realms of wine and beer – thank you ladies and boys for again letting me have my moments of downtime ♥ (Glad you enjoyed the charades so much C-A and L… 😉 )

Day 18 canned the booze in preparation for next weeks cycle, I’ve found it really helps if my body is only working on expelling one poison at a time.  I’m sure I’ve read somewhere that I shouldn’t be drinking at all as it gives you cancer. Apparently I shouldn’t be drinking tea or eating chocolate either – yeah, right… I’ll do some more reading before I make a definitive decision on my new diet regime.

Papa update – he is slowly building strength and completed three weeks of daily radiotherapy last Friday (enjoyed ringing ‘the bell’ and getting a cheer from all staff and everyone in the waiting room to signal the end of his course of radiotherapy!).  Doesn’t seem to have knocked him too much right now except for more fatigue. He now has to let it do it’s stuff over the next two weeks and then will have a review with the Haematology team at Southmead to see if it’s been successful on his stubborn lump which is still drifting about the 6.9cm size.  Go Papa! Very proud of you as you are blazing the trail for me and kindly giving me the heads up on what is to come – Forewarned is forearmed.

Gaggy update – love you so much. Just don’t know how you are staying so chipper with two grumpy-arse hypochondriacs in the family.

Joe update – my little star. Love you to the moon and back. Such a brave, loving, sensible, mature, pragmatic boy. I am the luckiest Mummy alive. No tears, just laughter and cuddles. BIG hugs darling.  ♥♥

Ickle and Big Sisters – Couldn’t do this without you both, really needing and loving your VERY broad shoulders and gardening/cooking skills.  Hope you have had fun with your “Joe” time over the Summer holidays. He has adored his time with you. xx

Finally, you’ll be pleased to hear that Joe and I have managed to hit the target of walking 4 plus miles nearly everyday this week.  We even snuck in a cheeky 5.3 miles one day in the second week.  Been eating like a horse and weight is back up by 4lbs. Feeling on top of things and up to full strength.

Come on then Chemo No.4 – NOW I’m ready for you!

xx