For a while I've had lower back pain, my oncologist and surgeon put it down to the treatment plan and my daily dose of tamoxifen coupled with good old age! On the 4th February each year, my original diagnosis day, DW and I have done something special. This year we went to The Pig in Studland Bay. The coastal paths are spectacular but steep. We decided to don our walking boots and walk over the cliffs to Swanage and back. On the way into the Swanage we slipped and glided through a steep mud bath until the inevitable happened...I fell straight onto my butt! But you know what this girl laughs and gets up and The Chubawamba song comes into my head..."I get knocked down but I get it up again, you're never gonna keep me down"....
We walked into Swanage and back to The Pig and I was absolutely fine. No damage done.
A week or so later I started to get bad back pain. I've never had this before and just put it down to the fall. Not being a fan of chemical cocktails in my body I tried to resist painkillers as much as possible but there got to a point where I had to crack and sink into the ibuprofen and also don heat pads to try and function.
Life needed to carry on..firstly buying trainers for the Moonwalk marathon walk in May....
Spending quality time with DW at Pizza East and The Jazz Cafe listening to the whole of Fleetwood Mac's album Rumours being played (my favourite album of all time)...
I also had a big work function that I had been organising so just needed to power through. Setting up at this event my movements looked like I was about 90. Bending over to pick up anything was laborious and robotic...something definitely wasn't right. But the stand looked pretty darn good....thanks to a great team set up effort. : )
Later that week I had a follow up with my surgeon. For those of you that don't know in November I had my original implant replaced as it had been cooked by radiotherapy and gone hard. Due to finding out about carrying the BRCA1 mutation, I decided to also have preventative surgery to my right breast. My surgeon was really pleased with how I was healing but this time I mentioned about my back being really painful. We did some simple movements like bending over and she felt it would be prudent to do a bone scan, adding a caveat that she really felt that nothing nasty would be found, it just was precautionary. I was glad that she had agreed to do this as this would give us peace of mind.
I also visited my GP, as I finally had succumbed to the fact that pain relief was needed to reduce the inflammation if nothing else. Sneezing caused my back to spasm and literally holler in pain so something was needed! She suggested an X-ray, so this coupled with the bone scan should provide two good views.
I chased and chased the bone scan results but given the fact that a normal result was expected it felt like an eternity for them to come. All looked normal apart from some deterioration but nothing out of the ordinary for a 35 year old. Phew...no cancer shit then! The x-ray reported a potential slipped disc so after waiting what was only a few weeks but felt much longer...pain is a bitch, it takes over everything, I finally got an appointment with a back specialist and a physio. Oh and to add insult to injury something pinged in my groin which made walking even harder..thanks!
It felt such a relief having my first physio session as finally something was being done to help my back. I knew an MRI would be needed for the back specialist to make a call, so another week's wait for that and then a week's wait to see him.....but progress was in sight so I could keep calm and carry on. Though I had stopped driving for a bit and worked from home so I could move more.
Monday 3rd April
Joint medicals for adoption done....signed and sealed by the GP.
Wednesday 5th April
This will now be a memorable date...not only is it my music man's birthday but it's the day I was diagnosed with secondary breast cancer. DW had flown to Moscow the previous day as due to the bone scan being normal, today's appointment should have been simply about fixing my back. Funnily enough a couple of days earlier, I had found myself thinking he should come to the appointment as I didn't want to make one of those phone calls but DW was positive and said it would all be fine.
Lesson learnt from treatment year 1, was always take someone with you to your appointments. So my Mum drove me over to Windsor as driving was still a challenge for me.
The back specialist invited us to sit down. I can't recall much that was said apart from there is something wrong with your back, you have a slipped disc but the MRI shows mets (metastases) in your bones. I stopped breathing...what...I can't explain the feeling it was more like an out of body sensation....Mr Ridgeway was extremely factual and showed me the scan...I could see these white patches...in the meantime my Mum was calm and saying everything was going to be ok...but you see...this time it's not ok...there is no cure for secondary breast cancer. It's ongoing treatment until the options run out. I felt numb and could hardly believe what I was hearing. The directive was clear. Speak to your oncologist as soon as possible. I somehow managed to ask about my back...again the news was not great an operation opening me up front and back to the fix the slipped disc...but there was no further discussion on this, getting to my oncologist was number one.
He shook my Mum's hand but grabbed and hugged me...this isn't the news that he has to give often, if at all, particularly to a spritely 35 year old who aside from back pain was feeling the best she had in a long time.
My Mum is an optimist or perhaps didn't understand what the words had meant....so on the way to the oncology unit she was saying reassuring things about how we can fix this....we can patch this but not fix it unless a miracle cure comes out in the next few weeks, which I have to say would be very welcome indeed.
Arriving into the oncology unit I saw Regina...my oncology nurse from before and literally melted into a lagoon of tears on her....trying to tell her what had happened as a child does when they're hurt with their chest heaving. I then coughed....big mistake....hey presto back goes into spasm...I scream...fall into a heap on the floor causing a good old commotion...oops!
I could hear people saying get her up, get her up...but my instinct was just don't touch me...I can do it myself in my own time.
We were swept into a room and I was introduced to someone called Lisa who manages all of the cancer cases. She calmed me down slowly and despite confirming it was terrible news, she mentioned that this could be treated and that she had ladies 15 years on and still managing their bone mets...slowly this was sinking in.
After a while we left and I had to make that phone call. Pacing up and down the car park I dialled DW's number. Thankfully he picked up....I'm not sure what I said but he reacted in his calm graceful way, 1500 miles away, all alone in Moscow. We knew this was a possibility but hoped it would never become a reality. It's strange as I've had quarterly checks and nothing has been picked up out of the ordinary. This bitch is sneaky, as my last checks had been in January and February with both an oncologist and surgeon confirming that all was ok. So much so, that we had been give the green light medically to proceed with adopting.
The main priority was for DW to see if he could get a flight home that day. So we said a tearful goodbye and hoped he'd be home later. Next on the 'that phone call' list was my best friend Kim...again the sense of shock and how the heck did this happen...
Finally I got back into the car with my Mum and made more calls, one to work to check out for a while and a few others....it was reminiscent of the cold, rainy February morning that I was originally diagnosed. Arriving home there was pacing....and phone calls...and pacing...The sun was shining but today it was not on me.
I then spoke to my breast care nurse who had just retired to get her view on this. Again, she concurred she knew ladies who had managed bone mets for 15-20 years......ok, so with the right treatment this might not be the imminent death sentence that it seemed. Armed with some thoughts to talk to my oncologist about we said we'd keep in touch.
One my saviours during 2014's treatment, was my neighbour Rachel and her then very newborn baby Maddie. Together we laughed a lot. Maddie is now a spritely 3 year old full of love and laughter. It's been amazing to see her grow. Once I reassured my Mum I was ok, I headed over to Rachel's....I just needed to get out of the house. Again another shocked response...how, why, what....all questions that are unlikely to be answered but we sat in the sunshine together and somehow I seemed ok.
My Mum headed home to tell my Dad....the telling part of this crap is the absolute worst part as you're unintentionally hurting people and you don't have the facts to back anything up at this stage.
I walked with Rachel to pick Maddie up from her childminders and then fielded numerous medical calls, including one confirming I would see my oncologist the next day. Then nurse Lars rang...he was due to arrive that evening and had put his detective hat on as had found out that Daniel had booked a cab with the same company for that evening which wasn't planned...I had wanted to tell him in person but we talked it through over the phone.
By the time we arrived home, both of my parents were back for more hugs. It's hard to know what to say or how to comfort them....
I had a planned physio session and decided I needed to go to get some relief in my back. One of my oldest friends, Eoin kindly agreed to be my chauffeur. Being rush hour the traffic was terrible so it gave me chance to read the MRI report that had been sent to me. The word mets appeared in pretty much every sentence....ok, I know this but this seems a lot.
Science wasn't my preferred area of study but there was a word on the report that I didn't know what it meant. Eoin is an anaesthetist, so I asked him what hepatic meant. He crumbled into tears....it's your liver....ah so the bitch has got there too....mmn this is a game changer....I felt numb again. Some of the earlier positivity being zapped and realising this was a different ball game...one in which the field was more unclear.
We carried onto my physio appointment...it was good to talk to Liz. We decided minimal treatment but a new back support was given that has really helped.
Ok...dinner time. Eoin stayed to keep me company. : )
Then I heard a key in the door...DW was home. He knew about the bone mets but not the liver so I slowly got up and went and hugged him and gently whispered into his ear...it's in my liver as well. How do you tell your soul mate and the person you've shared more than half your life with this stuff? It's cruel...we are meant to grow old together, sitting on benches in the countryside just listening to the birds sing and the sun on our backs....how dare this bitch take this simplicity away...I know, I know you're thinking be positive....and I will be but day 1 is a toughy. Eoin left to give us some space. What to say, what to do...it's so hard when you're in limbo land.
Lars arrived and injected some positivity back and then left us to our own space. I can't remember anymore of this day but needless to say, we've had better.
Thursday 6th March
The morning was spend in floods of tears, this limbo place makes you wonder if you have weeks, months or years....the good news was that we were seeing Dr Davis, my oncologist so perhaps a vague plan might be offered.
A sunny day, we took the roof down on the car and made our way to Reading to find out more. It was an unfamiliar environment and my legs had gone to stone...I wanted to go and talk to her but at the same time didn't want to know....
You could tell by her face that this was unexpected and she confirmed this by saying about giving us an adoption reference. It was good that Eoin had translated the MRI report for me the day before, so we went in fully prepared. This was a meeting of confirmation...yes it's in your spine and pelvis. Yes it's in your liver. And after a physical examination, yes there are a few dodgy lymph nodes...this bitch moves fast.
No real action plan was given, as with the last initial diagnosis more tests were required...so a CT/ MRI would be done the following Monday with a potential liver biopsy. The weird thing is that the daily dose of Tamoxifen I take should have helped to prevent this...so the biopsy was required to see if the biology of the tumour was the same or had morphed into a different beast. Ok, action being taken....feeling more positive. Bloods needed to check on my liver function and a bottle of oral morphine was given in case my back pain worsened.
Although having a great relationship with Dr Davis, I had been thinking for a while to change all of my care to the Marsden. My breast care nurse had suggested a couple of names there and so I mentioned this to Dr Davis, rather humbly as I always feel bad in these scenarios. Ironically, she uses Dr Parton as her sounding board, so I knew this was the right call. Plus Dr Davis was on hols, so this meant that things could keep moving in her absence.
Still shellshocked we left.....still no plan...still unsure of what we are really facing into but baby steps were being made. Then numerous phone calls to arrange appointments and update close family and friends....including calling the adoption agency to update them and stop any further work on our case. It seems we are not meant to have a family...I want to say for now...but in reality this is never.
Plus a much needed walk along the river...our favourite thing to do together. We talked and talked....difficult conversations, conversations that no one in their thirties should be having. Some of which I'll share but some of which remains between me and my soul mate....One thing is that when the time comes, I'll be made into a diamond. That way I can be with DW wherever he is in the world.
Dinner that evening was out with DW and Lars....they were talking about future projects that they might work on...I zoned out, as I had that surreal feeling of I might not be here....
Friday 7th April
Another tough morning filled with the outpouring of tears....today's agenda item was to get to Breast Cancer Haven and book in counselling for us both and gain the love and support we know they can offer. I've also gone back to music in the shower to keep me from melting into a pool of tears...Elton John's The Bitch is back is keeping me vaguely sane.
It was wonderful to walk into, Breast Cancer Haven our safe place on Friday afternoon and be greeted by friendly faces. DW booked his counselling and left for an all important haircut. I stayed to catch up with Nic and discuss what I knew so far....I know many of you will know how special this place is but it is simply incredible and does make a world of difference to many. Without being here and having met my friend Basia, my story would have been different. I'm very grateful to have this place.
Dinner this evening was with Kim and it was so wonderful to see her. She's the most incredible and supportive person I know. Plus we have so much fun! (remember the Legoland ride, Kim?!). She's not only amazing to me but DW loves her to bits so all in all a terrific dinner trio. : ) This is us waiting to go into Moulin Rouge Secret cinema in March...because we can, can, can!
Saturday 8th April
I'm now writing this on 29 April....so we'll see how much I can remember... : )
Another morning filled with tears and uncertainty....we then decided to do something we love and went for a walk in Hambleden...our place. It was during this walk, at a snail's pace walk it has to be said, that we sat on a bench in the sunshine. Again difficult conversation...but in addition to becoming a diamond, I'd like a bench with mine and DW's names on them to celebrate our love and commemorate our time together. I'd also like it if from time to time you'd stop by and have a chat with me...so we'll work on the location but it'll be around Hambleden or along the river opposite Temple Island where on 12 September 2009 we celebrated our marriage with close friends and family.
Hope this guy is ok?!
Sunday 9th April
We all know that Sunday, is mine and DW's day...unless a bank holiday falls...but today we wanted to see our close friends Luca and Moira with their girls, to make us smile. Plus a liver friendly lunch was made - thanks L!
Park life with the Achilli girls...
As we were in London we ended up buying Sunday supper at Whole Foods...it is my foodie paradise. I know, I know, I work for Waitrose but the fish counter at Whole Foods is another level...so it resulted in this Sunday supper...which I have to say was pretty darn good and resulted in me getting some appetite back.
BBQ Thai Monkfish with grilled baby gem lettuces...
I'm also alcohol free now, to add insult to injury, at a time when a drink would be helpful...sure my medical team are saying have a drink here and there but I want to make life as easy for liver as possible. Sparking l'eau it is. : )
The additional bitch about the bitch being back is that my back still hurts and until my treatment plan kicks in, I'm on daily doses of naproxen and co-codamol (with laxative sachets in for good measure!).
Monday 10th April
A day of scans...CT and more MRI scans...
Wednesday 12th April
For those of you who followed my blog last time, you'll remember one of the worst experiences was having a port inserted into my arm under local anaesthetic...well today we went up a notch...I had to have a liver biopsy without sedation under local...big girl pants were needed and my back up crew too with DW and Kim.
An amazing nurse called Carol, who had been there for the original port experience, coaxed me through the liver biopsy and Dr Gill was extremely calming and filled me with confidence...though the associated risks were terrifying...still deep calm breaths...
The biopsy gun was the same as the one I had had on my breast 3 years ago..it sounds like a staple. This time though I wanted to see what this bitch looked like...in fact it looked like a thick piece of a peachy coloured cotton...how can that possibly be causing this much chaos.
A while later, and hugely relieved it was over I was back in my room with my crew. No moving for 2 hours, due to risk of internal bleeding, and no eating/ drinking for a bit longer. So the R word, rest it was! I was tired...but my crew kept me and each other sane.
Later that afternoon I had another visitor, the ever wonderful Juliette...despite being in pain it was so good to see her and she must have brought some therapeutic power with her as after a while the pain died down...thanks also JT, the muffin you brought was a saviour when I was finally allowed to eat!!! : )
Finally we got to go home....another thing done.
Thursday 13th April
Today was a big day....I was meeting my new oncologist for the first time and knew she'd have the results from the CT/ MRI scans which would help with creating the treatment plan. We arrived at the Marsden and were informed she was running 30 mins late...ok that's ok...this turned into 90 minutes but on meeting her I was instilled with confidence and knew instantly that I was switching to be cared for by her.
So the results...have to say could have been better...bones mets (we knew), liver mets (we knew) but there is one 6.7cm...lung mets we didn't know but these are fairly small...and some additional lymph node involvement. The biopsy results were still outstanding but based on these I was given a plan...weekly chemo of Carboplatin and Paclitaxel....ok we have a plan. Crucially the words, "I'm not writing you off yet" were used which has given us the word I will be using a lot from now on. Hope.
Chemo planned to start the following Thursday...check. This is all going fast and it needs to but blimin heck what a whirlwind.
Next questions...can I fly to Sweden for Easter? Yes, go. Great. We needed a change of scenery.
Easter in Sweden
So we all know I love a lie...Kate Rider has donned it pillow surfing which I love...but bad backs and lie ins do not mix...plus I can't sleep on a standard bed...I have been sleeping on a sun lounger at home (whilst a bed with a remote control is on order), so the Welinder snrs kindly bought me a sun lounger to use as my bed...angled sleeping is required but not for more than 7-8 hours...sorry parents of small people I know this sounds like paradise!
Here's some photos of our wonderful but chilly Easter weekend with the Welinder snrs...we ate well, some drank well, saw the Rosengrens, we managed to walk out in nature and we did our favourite thing of playing Pictionary...and we laughed a lot...the best medicine...one day the Welinder snrs will beat us at Pictionary but until then we have clung onto our winning streak!
One very happy Swede...
Simply beautiful...
Giant Easter egg - it's hollow...so waiting to be filled! But look at that smile! : ))
My mother-in-law will kill me for this but she's doing some amazing photography of local nature...so much so that some of her pieces were on exhibit...so we had to go and have a look.
One very happy Swede amongst the flags flying high in the sky on Easter Sunday...
My favourite beach in the whole world...with my favourite person in the universe.
One girl and a boat...
Swedish sunset...
Walking in the woods...I'm so grateful to be able to have done this. Thank you back and body. : )
Up bark and personal...nature's beauty
We were both sad leaving Sweden as coming home we knew a tricky week ahead was upon us. But there had to be time for some nice things as well.
Tuesday 18 April
You know the story about my hair...devastated when it fell out last time, unsure what might happen this time...so I got in touch with the amazing Charlene for one final blow dry and I was so happy with the results!
The ever amazing and talented Charlene Busso...
Today was also our first day of counselling at Breast Cancer Haven...back to back appointments. I hadn't met Joan before but she said she felt like she knew me already from having talked to Daniel...this nearly sent me into a pool of tears....Whilst many are unsure of the merits of counselling, it is a helpful thing to do and we should all do more of it...in essence you're using an in partial third party to provide counsel to your worries or concerns. It can be a case of simply vocalising the worry that reduces the fear around it...if in doubt give it a try.
Thursday 20th April
Right firstly what do we know...I hate the 20th of the month, so what a great date to start chemo on!
And sure enough it started well with a lovely back spasm...thanks!
I was feeling a plethora (love that word) of emotions...numb, nauseous, angry, calm, resigned and most importantly up for the fight. Our journey up to the Marsden was quiet...I suspect both DW and I felt nervous about what the day would bring, including my liver biopsy results (these showed the same biology as my original breast tumour).
Another whirlwind day...starting with seeing Dr Parton once more. Due to my BRCA1 mutation the chemo plan had changed and Dr Parton wanted to kick off with just Carboplatin on a 3 weekly cycle basis. You can't change the history of time, but I so wish my cousin has told me about the possibility of being BRCA1 when she found out years ago...things could have been so different...or not.
The first thought that runs through your mind is just give me everything...but I trust, and have to trust, this lady so ok. We talked through the reams of questions that I had built up over the course of the week and also had a physical exam. Then I was asked if I would be part of a research trial...sure why not it's just some blood and if it will help me or someone in the future then why not. So more consent forms, chat with the research nurse. Then more chats with Laura my new breast care nurse....time was zooming by and we knew that it was not long before we would take the long walk to the chemo unit to kick things off...
You can imagine that without DW by my side I just don't know how I would do this. And I feel sad and endlessly guilty to the bottom of my heart having to observe the most caring person and the one I love the most having to endure this....and an endurance test this is.
Today was all about stopping the bitch in its track so eventually we got to the chemo unit...as my back was really bad I was given a side room with a GP style couch. Needless to say it wasn't the most comfortable, but I was grateful to be in my own room.
My other superstar support, Kim arrived and DW went to go and get something to eat and some air. Then the conundrum kicked in...to cold cap or not? As we know last time the cold cap didn't work for me and it does make a chemo session far more uncomfortable...coupled with a bad back it was not appealing....the nurses were indicating that as I was only having Carboplatin that they normally do not recommend the cold cap. They gave me the number of the machine manufacturer to ask them and they concurred that with Carboplatin on its own, they do not normally advocate using it. It was a difficult decision but in consultation with my support team we concluded no cold cap. So we'll see what happens...this one claims to cause hair thinning or may cause complete hair loss.
Time for the main event to kick off....here's an insight...
Drip machine...photo taken as it's called a Plum360 and my family call me Plum. : )
The Danicentre...after DW...
The afternoon got better as another very special lady came to see me...my wonderful friend Basia. We went through our primary treatment together and met at The Haven...it's so incredible to see her looking so, so, so well....Without her I'd have not had Fiona MacNeill as my surgeon and I therefore wouldn't have known about the BRCA1 mutation and in turn as it transpires with the current situation I wouldn't have been at this world leading hospital for the treatment I now need. Love you to the moon and back B.xxx
Two very special ladies.....
No red book this time...just a simple yellow card that gets you speedy entry into any A&E in the country!
As chemo was a late start...in part due to my deliberating over the cold cap, we finally left the hospital around 6ish...we dropped Kim in Chiswick and headed home. It's fair to say I wasn't feeling too bad...back pain aside...the constant thorn in my side.
Despite being generally a healthy eater, plus one of my Sahara walking buddies, the wonderful Tammy Hubble (www.d3lvein.com) has given me a nutritional guide on what's good to eat...sometimes you just have to go for a bit of what you fancy....in my case...pizza! : )
DW set up my bed for me...multiple layers of thin mattresses and pillows and one additional element this evening...a bucket by the side...luckily I didn't need it.
Friday 21st April
Well, no chemo hangover to wake up to this time, just a niggly back...no change there. I should have mentioned before but we're moving house. Time to escape these walls and head for a new start somewhere and that somewhere is Cookham...many of you will know it but for those of you who don't it's a small village full of restaurants and countryside about 10 minutes from where we are now. It's time for a change. As we're renting it's a speedy move, so I felt well enough to do some house move admin.
I also had to have a jab in the tummy to boost my white cell count...who knew this would prove to be my nemesis. But generally I was doing fine....red faced of course as that's the wonderful post chemo reaction many people get but I was ok.
We decided on a curry for dinner and just before ordering I received a text from one of my best friends saying she'd be in intensive care that week...it shook us both to the core so we were soon checking on her husband to add him into our order...friends stick together and it looks like we all need each other more than any time before...you guys know who you are and we love you from the bottom of our hearts.xxx
Gratitude plays a big part in our lives and sometimes we can neglect to be grateful for the simple things...mine today are DW, for all the love and support we've been receiving (please check in on DW as well as me), the smell of flowers on a dewy evening and of course friendship.
Saturday 22nd April
Bam I spoke to soon...I was awake all night with the most acute pain on my right side...I reached for extra diazepam, oral morphine but nothing seemed to work...I kept trying to tell myself that it was temporary but the pain just remained and it was different to my other back pain.
Awake at 6am I tried to write a positive statement to try and focus on something else...it went along the lines of this..the birds are singing, the sky is blue and there's a vibrancy of fresh green in the trees...when this pain goes it will be a great day...
What actually happened was ending up in the Marsden in room 17, enduring one of the most painful car rides of my life (DW of my life...Mike Wazowski).
Moira came speedily to meet us to give us both support. Many examinations later, including a finger up a passage where I'd prefer one not to go and the verdict was that it was probably a reaction to the white cell boost injection plus I'd been asked to stop taking anti-inflammtories for back as there was concern this would be too much for my kidney. Still my blood was a bit too acidic so it was decided to stay and be hooked up to fluids...the one saving grace...a comfy bed for the night.
Moira headed home to pick up some essentials for us and came back with Luca...the boys went off for dinner...DW needed to get out of the hospital...and Moira and I chatted. They returned with some takeaway noodles and a guava collins (non-alco!) for me. Grazie mille for everything you did this evening...we're so grateful to have you both in our lives. : )
Thankfully the pain subsided....but you know what it reminded me of how scary chemo is. In some ways it's easier this time...I know some things to expect...in other ways it's harder...there's no end in sight this time and the added complication of a bad back consisting of bone mets and a slipped disc...not an ideal combo. However, we were constantly being told that we had done the right thing to go in...so we're lucky that this amazing place is available.
Love is sleeping on a recliner all night next to me...he's the real champion in all of this.
Sunday 23rd April
Marathon day...and a very special day for someone I met during my modelling days (!), as the incredible Jackie Scully was getting married on the Cutty Sark and then running the London marathon...absolutely marvellous!
Aside from being woken in the night for observations, I slept fairly well. But it really had taken it out of me as all I wanted to do was sleep on and off all day...pillow surfing to the max.
After another blood check, I was able to go home...phew.
But it was Sunday and what's Sunday without a Sunday night supper...today my trusty sous chef had to take the reigns fully and this was his creation...
Roasted fennel, tomato, lemon and parsley with salmon. Go DW!
A tough couple of days and I knew the next day was going to be a tough one as well as I was back in hospital for a port to be inserted into my arm so that the medics always have a line in....and based on previous experience I was not looking forward to it.
Today's gratitude is all to DW....he's so amazing and does not deserve to go through this cruel ordeal again...hopefully next cycle will be easier.
Monday 24th April
Dodgy tummy all night, and felt terrible first thing...nauseous, aching etc....but somehow I pulled myself together and got to hospital in Windsor. Today was port insertion day and I think the above symptoms were physical manifestations of anxiety....
First step get a cannula in...I won't go into details but lets just say this was not fun and poked a few times...
Step 2...go down to essentially an operating theatre wide awake and lie on a table. Thanks to the ever wonderful Carol, it was agreed I could have sedation this time and boy was that welcome...
Step 3...be covered in drapes and lie back and think of England all the while trying to relax....all the while thinking when will this end.
Step 4...it did end and it was far better than last time. Phew...oh right now you want me to try and move from a flat position on the table to a flat bed to take me back to my room...hmmm.....thank god for sedation...
Step 5...return to room, to see my DW waiting for me....and then not move for 2 hours...right I really need the toilet. Bed pan...mmn this is not going to work...
Step 6...commode (now I'm feeling really old) wheeled in and go!
Step 7...back in bed and literally for the rest of the day I dozed on and off...probably sedation and probably relief of procedure having been down. No reading, no messaging, no TV...
Step 8...temperature decides to spike....finally calms down so we can go home and arrive back at 9pm.
This is too much for this little body...still I will start to feel better....please....
Tuesday 25th April
Rest day....no another MRI and this one had to be done at the Marsden....here we go again....in the car...let's go...but I really, really, really just wanted to be at home.
MRI's have become standard for me...the beat of the machine can melt into the background, so much so that I now tend to fall asleep. The error made here was not taking co-codamol just before the scan as having to get up from a laid flat position was hell...still it was done.
Exhaustion levels are high...so I napped as soon as I got home...woken by Regina calling to see how I was doing...she's a true angel and I'm sorry not to have her as my oncology nurse but the Marsden is the right place to be.
The most heartwarming thing happened today though...some of my team at work have signed up to do the Moonwalk...I feel truly humbled by this and am so touched by everyone's love and generosity. I had been due to do the full moon (26.2 miles) this May but for obvious reasons I'm not able to...pants!
Gold medal of the day for endurance goes to DW...he's doing everything for me due to exhaustion and back pain...there are no words to express my gratitude to him...a thank you is simply not good enough.
Wednesday 26th April
One step forward...two steps back...energy will be ok one second and then plummet the next.
Time for a rest day...well sort of...I needed to talk to a man about my hair and his location...Harley Street. I've been using his hair regrowth formula for a while but quite a few people have recommended him as one of the few people who may be able to minimise hair loss...as time is of the essence with this I had to go today even though I just wanted to hug my sofa...
Once home, it was rest, rest and more rest but my back was agony...think it needs more movement but it's so hard when you're super exhausted. I'm hoping for a minor miracle on the back front as if this could ease then the rest of this chemo game would be much, much easier.
Thursday 27th April
Finally...the day of being at home and no appointments! Hurrah...in myself I was feeling better but the bastard back was just feeling horrible...time to talk to my team and see what could be done, as this is just too much...I feel like a tin man in desperate need of some oiling....my legs are stiff...more movement needed!
You don't need anymore of the moany minny but today I was grateful for everything that DW is doing for me (I mean everything), laughing with Karen and then with Eoin and for the first time in a while sleeping in my own bed thanks to a new mattress topper we bought.
Friday 28th April
Pain really changes your personality...it's all consuming and I had had enough of this. Luckily Dr Parton called to discuss my pain and what could be done. As my kidney function was looking good, she gave permission to add naproxen back into the mix of my pain relief cocktail...finally an anti-inflammatory albeit a slightly lower dose....still...every little helps.
After lunch I took my first dose and around an hour later I felt like a whole new woman...amazing! Positivity restored even though I still was walking at a snail's pace...
Today I picked up my new hoodie...the wording seemed appropriate...and one I'll need...it's simple but it's hope...
Despite the smiles, this has been one of the toughest weeks of our lives....there have been times where the pain has been so bad I've not known what to do...all the while this amazing man has gently and quietly got on with everything...he's simply the most amazing human being and I love him more than he'll ever know...xxx
Saturday 29th April
I'm not a robot...though I do still feel like one first thing, especially with a spasm thrown in for good measure.
Today was my viva for a postgrad course that I've been doing in Autogenic Therapy (http://www.autogenic-therapy.org.uk)...all week I had been unsure if I would make it but given the anti-inflammatory boost I just wanted to get it done! And I did just that...thankfully it was more of a chat rather than an intense interrogation....I couldn't have lunch with my fellow course mates as today was a low immunity day so instead DW and I found somewhere quiet and then headed home.
I also got a chance to chat to my supervisor who summed up how I've been feeling....a cruel limbo. You don't know how well treatment will work...when you'll need to switch to something else....but you know what I'm up for the fight, so this might be a cruel limbo but I'm ready for it (just ease my back please!).
I was completely exhausted so slept the whole way home...but arriving home...something incredible had happened...I actually felt pretty good...whoop, whoop!
So I started writing my blog once more, called the ever delightful Laura Deutsch, caught up with always fabulous Kim and then dined Indian style with DW....
It's fair to say emotions are up and down for me...so it's good chatting to friends and escaping this wonderland world... a song may set me off with a lyric or something said in passing...as Debbie said last time...roll with the punches...
Sunday 30th April
I passed! I'm now a qualified Autogenic Therapist! A year of hard work has paid off...whoop, whoop! I'll post a pic of the certificate when it arrives!
My parents popped in to say hello and also receive their list of duties for the week ahead....some to chauffeur me around (when will I get my driving independence back?!) and some to make DW's life easier as it's just not sustainable for him to do everything.
There are limitations as to what I can do with my back in terms of physio/ pilates as my oncologist is concerned around it's fragility. However my Dad and I spoke about some of the physio exercises that have helped him in the past and actually I'm now doing them and perhaps they're helping as well...the classic is gently 'shagging the air'...no photo required!
Sundays are normally long walk days but not at the moment...I'm struggling and 30 minutes is the absolute maximum...even then I'm stopping to catch my breath at times and coughing....still baby steps VW you will get there.
As you know the official Sunday supper on a bank holiday weekend moves to a Monday, so tonight we invited Luca and Moira over for 'the chicken salad'...and stupidly I forgot to take a photo as I was too busy enjoying myself...d'oh! This is one of Moira's favourite suppers but DW and I have to make it together for the perfect result...we hope we it good M! Seeing you guys was the best tonic for us both. xxx
So despite still being in pain, this draws to a close my first instalment of this new world we find ourselves in. The last week has been one of the toughest I've ever experienced but I'm hoping my team and I have gained insight into how to make this better next time. Plus I'm seeing a neurosurgeon later this week so perhaps he has the much needed magic wand to curb the back pain.
My end of week gratitude list is of course DW and hearing the sound of him really laughing (imagine Dr Hibbert from The Simpsons), seeing and being with great friends, observing beauty in nature that's all around us and most importantly having hope...
Til next week....which I'm hoping will be calmer and less painful...
Vxxx
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