The Parapet Breast Clinic

Two friends in the last eighteen months have been diagnosed with breast cancer, both have dealt with it in very different ways and I’m not sure now I would feel if it were to happen to me.

How often do you check your breasts?  Do you know how often you should check them?  



Being super skinny it’s easy for me to notice any changes and I check myself monthly, despite the fact that I don’t have a monthly cycle. I’m in the surgical menopause and using HRT.

Sunday 8th March as I was laying in bed I noticed a lump, it was small but it was there, I wasn’t going to panic, I went to sleep.  Next morning when Andrew woke up I asked him to check for me, without being rude if there is anyone who knows your boobs better than you, it’s your partner.  He agreed there was definitely a lump there, I called the doctor and was given an appointment for an hours time.  Along we went and she thought I was there for my usual health issues but I had to stop her in her tracks.  I explained the lump and she then asked to examine me, after a thorough check she agreed yes I needed an urgent referral.

Within the week I had an appointment to be seen at the local Breast Clinic, the appointment was the day after my Botox treatment!  My headache was already ramped up and of course with no sleep I went off to the appointment feeling like a zombie.  

Now to anyone who’s not been to a Breast Clinic before first off, don’t worry the staff are lovely and supportive.  This is probably the nicest side of the NHS you will ever come across, after booking in, it was explained that I would be having a mammogram followed by an ultrasound, then finally I would meet the consultant.  That all sounded very straightforward.

After a short wait I was called through for my mammogram, I’ve never had one before and being in my chair Andrew came along just in case.  If I needed to stand for the test and had a syncope attack at least he could help. We shouldn’t have worried, the machines are so clever they didn’t even require me to get out of my chair, I stripped to the waist and then the contorting to get my non existent boobs into the best position for imaging.  It didn’t take too long and finally the four images were done.  I got redressed and headed back to the waiting room, another short wait and then it was in to see the radiologist.  She scanned me and found the lump immediately, she asked if there had been any changes I told her it has already got bigger, she checked around it and then up into my armpit (ie the lymph nodes). It really didn’t take long, Andrew was by my side throughout, holding my hand.  Finally she explained she had seen a small lump approximately 7mm in size at this stage, I had caught it early due to my lack of subcutaneous fat.  She believed it was benign and a lymph node that had enlarged but she wanted to aspirate some cells for testing to be sure, if I was happy with that.  Well after 30 ish needles in the head, one needle in the boob would have to be tolerated.  So they got me prepped for the procedure, I was now clinging to Andrews hand, he was watching the screen fascinated by what was going on, I was in agony.  Eventually they had enough cells and the needle was removed, thank goodness for that !!  Again I was allowed to redress and back to the waiting room.

Our final wait, by now the waiting room was packed out, I was called through immediately.  The consultant was lovely she chatted through my medical history, was aware of Ehlers-Danlos, was kind and compassionate, once again I was asked to remove my clothes and she examined me.  She agreed with the radiologist that it was probably benign and the results could be posted to me, however if there was anything wrong they would call next week.  We said our goodbyes and left, my experience at the Parapet Clinic had been very good.

Now it’s just a waiting game, I know I shouldn’t worry but it’s natural for me, I was a born worrier, until I get it in black and white “all clear” then I won’t fully heave that sigh of relief.

All I can ask ladies and gents (and yes it can happen to you too) is make sure you check your breasts, it could save your life !!

Botox Treatment

As I said I had been expecting to wait months not two weeks, so it was a bit of a shock to the system.  It didn’t really give me time to get too worried or upset about it, however the night before I posted on the NPDH forum about everyone’s personal experiences with Botox treatment.  The replies I received were quite encouraging and settled my mind.  However I didn’t sleep to well, normal for me.

We headed off to the hospital at 10am, after the three hour journey to the Royal London the last thing we wanted was to get caught in traffic and end up stressed out.  Of course the law of sod stated the motorway was clear and we made it to the Charing Cross in about 40 minutes.  It took quite a while to get parked but once again we weren’t going to get stressed.  

Once we finally parked up and got into the hospital, we headed up to the 10th floor, Neurosciences.  By now I was quivering like a leaf, we got to the ward and a lovely nurse checked me in.  She copied my headache diary which I had been asked to keep since my consultation, I was then asked to keep recording my headaches for the next few months.  Directions were given to the day room and I was told I was first on the list so as soon as Dr Weatherall arrived I would be taken in.

The room started filling up with lots of patients and my nerves were really kicking in.  I’m not great with needles or maybe it’s just fear of the unknown, but it was a good job I was in my wheelchair because my poor heart rate was sky high.  When Dr Weatherall called my name I’m sure the colour drained out of my face, thankfully Andrew was allowed to come in with me, I had been worried I would be alone.

This is where the explanations started …. This would be the first round of two to see how I respond to Botox therapy, it is successful in 25% of patients and hopefully I should see some kind of improvement in about ten days.  Sometimes there is no response to the first round, hence the second treatment which happens three months later.  The risks and side effects were explained but I wasn’t concerned, I will be honest I trust Dr W implicitly, he is the best neurologist I’ve ever met.  That is why I’ve waited patiently for ten months for this referral, I didn’t want any old neurologist I wanted the best and thankfully I got him.

So I laid down as he prepared the syringes full of solution and then it was all systems go.  There was no messing around, forehead, scalp, both sides of head, I won’t lie it was painful but this needed to be done.  Dr W asked me to sit in my chair and for a split second I thought we were done, oh no, hair up, neck, scalp again and what almost felt like my shoulders, as he did one of the final shots on my right neck/shoulder area the pain seared through me, that wasn’t good.  However it was all over, thank goodness for that.  He reiterated a few points and then we said our goodbyes, we would see each other in three months for the next round of Botox.

I got into the corridor, round the corner before we stopped and I just needed to take a few deep breaths, swear a bit and have a hug.  I’d done it, this needle phobic, wuss had got through 20+ injections in my head, I felt weird, my headache wasn’t great but I was going to have a positive attitude to this treatment.



Before we left the hospital and as I had been so “brave” Andrew bought me a slice of carrot cake and a latte from Costa in the hospital.  As we chatted I agreed that it was time we had some hope and a positive outcome in my treatment and maybe today was a turning point for me.  I know this will never ever go away but to learn to manage part of the symptoms better would be a massive help.

So thank you Dr Weatherall for giving me that hope, when I first met you I knew you were the man for the job and you haven’t let me down yet.

Silent Sunday – 29th March

  

Visiting the Royal London Hospital

Accepting an appointment at 9am in East London was not a good idea, but it was either that or wait until May/June time.  So we got up ridiculously early and left the house at 7am to join the commuters heading into the big smoke, we set the sat nav so we couldn’t get lost, but the worst thing about that was watching the arrival time getting later and later.  It went from 8:45, to a final arrival time of 9:50am, we ran the risk of not being seen but by 9am, my appointment time we had already hit the congestion zone and I was willing to beg to be seen or hang around all day.

When we arrived there were no disabled spaces so Andrew got my chair out and sent me off to find my clinic, he would wait for a space.  I whizzed around the corridors and lifts and got to a desk, explained my predicament and  was told I was in the wrong place.  Once they had pointed me in the right direction I soon found the correct clinic.  The receptionist was lovely and I explained what had happened, she told me not to worry of course I would be seen, the relief waved over me.  I text Andrew immediately so he wouldn’t worry or think there would be a fight on his hands when he got to the clinic.  

Laura, the clinic’s support nurse came to meet me and gave me a questionaire to complete, this bought us a bit more time for Andrew to find a parking space.  The questionaire was very detailed and related to not only my GI issues but my Hypermobility, this is why I was here, these people were the specialists.  Andrew had got parked and arrived just as I finished the form, not long later I was called in.

I was met by a junior doctor and two students, however this junior doctor had more knowledge than any doctor I had seen in my local hospital.  He didn’t rush us to explain my story, we went through my medication list, my current state and what had caused the referral.  Then he asked to examine me, he knew I had been diagnosed with EDS by the Stanmore but wanted to check my Beighton, I think the students were currently studying it from what I could see if their notes.

He started on my hands and worked down, I got a 6, historical 7.  Exactly what the Stanmore had said, I dropped points on my knees as they are only 5 degrees hypermobile, so I didn’t get points for either of those.  Then he checked my abdomen, I had various tender points and he was very worried with how wasted I was.  He checked my pulse as I laid down and then asked me to stand, of course it started racing and he agreed to the PoTs.  So I fulfilled every criteria.  After a few thoughts he decided I needed some tests he left the room to confirm this with the lead consultant.

Next thing they both came back in the room, this startled me a little.  The lead consultant allowed the junior doctor to go through everything in front of us, including the tests he was recommending.  These involved 1) a gastric emptying test 2) a breath test to check for infections in the small intestines and 3) nasogastric tube that will check the oesophageal muscles.  These all sounded really daunting and he agreed some weren’t pleasant but they needed to be carried out as my weight was at a dangerous level.

The final point to talk about was nutrition, I explained I had plateaued with regards weight loss, but he explained that was because my body no longer had any subcutaneous fat to lose, my weight was now just what was left of me.  I was to try my best to gain weight, eat chocolate, cake, anything high in calories, he admitted he would be the only doctor to ever prescribe Galaxy chocolate bars a day.  The question was if I didn’t gain weight I might end up either on tube feeding or TPN, both of which put the fear of God in me.

As we left I was handed back to Laura, I was asked if I would like to be part of some medical research at UCLH for Professor Aziz and the team.  Of course if I can help raise awareness and make life easier for any EDSer I would do anything I could.  Laura asked if I had any questions, the Junior Dr explained that she herself was hypermobile, so I asked if she could recommend a PoTs consultant in the London hospitals as I was looking to transfer my care.  Her first suggestion was Dr Gall who I had heard about via the forums.  I thanked her and said I would look into getting a referral.  So after our short meeting we could leave, we had been with them for over two hours.  They hadn’t rushed us, they had been kind and supportive and most of all they admitted they didn’t have a wand to magic away they problem but they could give us both hope to improve the current situation.

How good is that “hope” two London hospital appointments, both having given us hope.  Maybe the tide is turning with my care.

Overdone It

Well after those few days it was inevitable, I crashed and hard.  Despite horrific pain levels I fell asleep and couldn’t stay awake, on the Tuesday after the Sam Hunt gig I probably slept 18 hours out of the 24.  Andrew would pop home and check on me, wake me up to make me drink an Ensure, take my tablets and then I was back into a deep sleep.  Wednesday I just felt so sleepy no matter how hard I tried I couldn’t shake off the fatigued feeling, I needed to be brighter for Thursday it was an important day, my appointment at the Royal London with Professor Aziz and his team.

Wednesday I had to get up and about, but I was struggling, we had another funeral to attend, a huge emotional roller coaster. After the funeral I had a scheduled medical assessment with the DWP, we left the funeral with plenty of time to spare and just as we were about to get onto the motorway my mobile rang, the medical assessment centre cancelled it.  I had been stressed and worrying about it, but it really did upset that it was just going to be dragged it out longer.

The rest of the day was spent laying down on the sofa again, trying to catch my breath.  Preparing myself for the next days appointment,  I got my pink medical file in order and everything was sitting on the side ready to go.  Again I was pretty zoned out, the fatigue was off the scale.

I was still in a great amount of pain and running on an empty tank, barely eating was having a huge impact on how much I could do.  This was what I needed to discuss at the Royal London, fingers crossed they could help me.



Sam Hunt @ The Borderline

I don’t think I got up all day on the Monday, I barely woke up, by now I was broken, my spoons were non existent but this was the last thing we had planned for a while and I was looking forward to it.  The last time I saw Sam Hunt was in Orlando at the House of Blues, on the same bill as Kip Moore, so to get another chance to see him was a gift and in such an intimate setting, even better.

Andrew came home and helped me get ready he knew I was struggling now, it was even debatable if I would actually make it.  His help was appreciated, so we took it slow and steady as we made our way into London for the fourth time in less than a week.  

As we arrived at the venue there was a small queue and it was chilly, Andrew left me in the car and went to speak to security.  The Borderline isn’t wheelchair accessible, but they let you in ten minutes early to help you downstairs.  When the time came Andrew came to get me, I went and said hello to some friends first and then security called me through, they didn’t want me in the cold, so placed me under a heater until I could go down.  Such kindness and consideration, soon it was time to go and very slowly I made my way down, security carried my chair, but they had reserved some seats for us and stored my chair away in case I needed it.

The warm up act came out and were a young band of five lads from Liverpool called Mic-Lowry, lots of harmonies and a beautiful sound about them, I really enjoyed their performance.  They did just what they were meant to do get us all wanting more, ready for Sam.

Finally Sam came out and the venue went wild I remembered all the songs from the first time I had heard him.  We were all singing along and when I say we, I mean the 300 capacity of the Borderline, we soon found out that Kip Moore was at the bar, this gave me a buzz.  The next piece of news Lady Antebellum were in the house too and The Shires.  Wow could this night get any better?  Sam was interacting well with the crowd, getting down in amongst the girls, then suddenly he climbed up in front of us, his whole act was pure energy.  By the end I was back to being drained but not ready to go home, I wanted to say hello to some Country Music stars.

Lady A sadly just disappeared so that’s one from my bucket list not ticked off, but I got to say hi to Ben and Chrissie from the Shires, congratulate them on their achievements and tell them we were coming to one of their upcoming gigs.  Then there was Kip, omg Kip flaming Moore, he was awesome, gave me a hug, had a photo and then as we were leaving so was he, he came back over to me in my chair this time and gave me another squeeze. My night was made!!

As we left London that night I couldn’t believe how much Country Music love had been poured out over the last few days and weeks, but for as long as I am able to it will never be over.  I will just keeping fulfilling my dreams and making memories.







The Gallery – Boys

This weeks topic is “boys” I was trying to work out which photos to share with you.  Of course there are lots of “boys” in my life my Singapore Stalker/Barca Buddies, the members of my F1 family and then there are the lads who are part of my Country Music family, these boys all mean so much to me.  

Then of course there are my favourite F1 drivers and Country Music bands/singers, I could bore you to death with photos of those.  Most importantly there are three boys in my life who I should share pictures of, my amazing hubby and two sons.

Here is hubby doing some of the things that make him happy, fishing in Florida, attending an F1 race and his newest hobby photography ❤️

  

Next up is my eldest son Christopher, he’s now 27.  We bumped into in Singapore last September randomly.  We’ve just found out he’s coming to the UK for a visit this summer, with his girlfriend Kim, so we are all really excited.  Next year health permitting we are hoping to get out to visit him, that will be a huge tick off the bucket list, but like I say it really will be health permitting.

 

Finally this is a picture of my last boy, my youngest child, James, he is 21 now.  We don’t see him very often but bumped into him and his new girlfriend recently.  This picture is really old and he has changed a lot, hopefully I will get an up to date shot soon.

  

So that’s my boys, I hope you like them 🙂

Chelsea Ladies Night

The reason we couldn’t go back to C2C was because Andrew had already booked us in for the annual Chelsea Freemason’s Ladies Night at the Lancaster Hotel.  It was decided that we would spend the whole day in bed resting as by now I was seriously flagging, I looked drawn and in pain, so despite not normally wearing make up this event would involve painting on a smile and hiding behind it.  

We left home at 4pm as the drinks reception was starting just after 5pm.  The boys we were meeting kept us posted that they were on their way and as we arrived they were waiting outside to get me, so Andrew could go and park.  All the boys looked after me beautifully checking I was ok every few moments and finding out how I was going to get downstairs to the function room.  Once Andrew returned we got some champagne and all grouped together for our annual photograph.



We were soon being asked to go down for dinner and the night began, the Worshipful Master this year is Rick Wakeman so after a few words of grace everyone sat down.  The food was nice but the boys got extras from my plate, the only bit I really liked was the pudding I enjoy chocolate more than anything at the moment.  Peppered throughout the night was lots of entertainment, the Chelsea Lodge is the entertainment section of the Masons.

Every year they have the children from The Sylvia Young Theatre School perform, they truly are amazing.  Then a 14 year old singer called Emmy Beckett who blew everyone’s socks off and got a standing ovation.  The comedy act this year was Mick Miller, very old school and really funny.  However by the time the band came on to finish the night off I was too tired to enjoy myself, Andrew asked if I wanted to call it a night and I did.  We said our goodnights and headed off.  Two of the boys walked us to the car and made sure we were ok, once we dropped them back to the hotel, it was time to get home as soon as possible.

I really enjoyed the night but by the end of the weekend I realised I was worn out and it wasn’t over yet.

C2C 2015

Our annual pilgrimage to the O2 for Country 2 Country took place a few days after seeing Dr Weatherall, we were travelling in and out of London regularly now.  Once again we had booked last minute tickets due to my health issues, things had been so rough that it had been pointless buying resale tickets for hundreds of pounds.  The day before the concert I went online and found two tickets for less than one hundred, they were in the disabled aisle at the back of block 112 so this should have been perfect.

 

We left as early as we could have, bearing in mind it takes me a while to get up and organised.  Our DD was going to come up with us but had a last minute change of heart so stayed home, I was a bit sad as it really is a family love affair.  We fought our way through Saturday tourist traffic and finally made it to the O2, the disabled parking for the O2 if pre booked is really affordable in my opinion at only £14 for the whole day.

 



 

 We started doing the rounds of the pop up stages, this is where smaller acts, who are waiting to get noticed perform, now I think it is a tragedy they haven’t all been signed for record deals as they are all amazing.  I am a big advocate for the hours they put in rehearsing, travelling around the UK putting on gigs and then promoting their work hard to get themselves noticed.  Then we started finding members of our Country Music Family, people who we have spoken to on twitter for months and years but have never met.  There were hugs and kisses and tears, some of these people have been a huge support, sadly some people I knew were there and I never got to meet and for that I am so sorry.  The day was exhausting but fun, we tried to pace it out so I didn’t flag too soon.

 

A small group of us decided to go and grab some food, a couple of the pop up acts wanted to get food as well, so I suggested they join us, so our small group became a big fun group and we laughed and enjoyed one anothers company.  Once again it proved how easily the Country Music Family get along, they are so important to me.  We finished off, got ourselves organised and that was it, time to head to the main arena, the big show was already on.  I wanted to see Sam Palladio, from Nashville fame before the big names of Florida Georgia Line and Luke Bryan came on.  Well none of them disappointed me, FGL blew me away I couldn’t get up and dance but I could jig around in my seat, sing to my hearts content and for a second EDS was at the back of my mind and I was thinking of sunny Florida days which is what this music reminds me of.

 

Finally Luke Bryan came on, both he and FGL are on my bucket list, I had tears streaming down my face as he burst out.  It didn’t matter what happened from now on I had ticked boxes, I had seen Luke live, he had sung the songs that meant so much to us and as the show ended despite being spent and exhausted I had loved every second.

 

What I didn’t know was Andrew had won tickets to the Aftershow Party, we were going to see Sam Palladio again with another band called the Striking Matches.  It was absolutely awesome, we didn’t stay too long as Andrew could tell I was struggling but by the time we left my C2C 2015 was complete.  Sadly we weren’t going to make the Sunday despite me desperately wanting to go but that is another blog post



Silent Sunday – 22nd March