Happy 46th wedding anniversary to my parents!
It's a bank holiday...I want to lie in...realistically I know this is not an option for my back. So up and at them! Well not quite so fast.
I'm trying to not wash my hair that often in order to preserve it for as long as possible but today was hair wash day so it felt so good to do this! It made me feel a whole heap better plus I got to take all of the dressings off from the port insertion so I was starting to feel freer again. The magic potion hair man has said I can wash it every day, as if it's going to fall out it will fall out...but I'm feeling somewhere in the middle is the right approach for me.
This afternoon, I also relaunched my blog....I was utterly speechless by the sheer amount of love, support and care that this generated....to everyone who has made contact with me or DW...thank you...it gave us a real boost to know we've got so many people sending so much love to us. Apologies if I've not replied back yet...but with moving house and being my own comms director...plus needing to rest here and there I've fallen behind but I will be in touch. I promise. : )
On Sundays or whenever we get the chance DW and I take long walks, generally a few hours. This has been a frustrating element of recent shenanigans...I know I need to be patient and let the chemo do its stuff and perhaps some radiotherapy...but I really miss these long walk...where I switch my phone off and just walk. However, today I managed a snail's pace one hour stroll...and along the river bank was treated to seeing this delightful chap...
Despite a great walk, I've noticed that some numbness in my hands and feet is appearing once more...this a chemo side effect and is manageable but just another joy to add to the list. On the way home we laughed and laughed as Sweet Caroline by Neil Diamond came on the radio...as you'll gather we love The Big Bang Theory and there's one episode where this song features...here's a taster https://www.youtube.com/watch?v=W03g0HZwEzQ.... DW even did the so good, so good bit!
With a little help from my friend Rachel, I even cooked a Sunday night style supper.....I think moving more and doing some of the physio exercises have really helped my back loosen up a bit. Don't get me wrong, I have to brace myself to sit up and down...but it was better.
Herby feta cod with balsamic glazed cherry tomatoes and asparagus...I was pretty chuffed...
But then DW came downstairs looking terrible...he had a humdinger of a headache and felt sick...my heart sank...it was a build up of everything from the past weeks and even super troopers need a break...it's devastating seeing the effects on him. All I could do was look after him, try to get him to eat and relax...
Today I was so grateful for our walk together in the beautiful sunshine and for me to finally be back in the kitchen cooking for DW and looking after him.
Tuesday 2nd May
The sun finally appeared! Hurrah! I went to physio, even though it was a simple lower back massage it really felt good. I did some de-cluttering of the house with my mum...5 or so bags later we called it a day.
And this arrived in the mail.....from the Emily....I can't wait to try these non-alco drinks out with you! Thank you for such a thoughtful gift...will be amazing to drink them together on a summer's day....guaranteed no hangover!
Tomorrow DW is going to Luxembourg for work...I don't want him to go but know that this will give him a much needed break and some escapism from this...
Today's gratitude is for feeling the sunshine on my back, my parents for helping so much, the love and support we've received from friends and most of all the love that DW gives to me every day.
Wednesday 3rd May
I said a sleepy goodbye to DW at 6.30am.....
Today was a first for me...my first acupuncture session. As DW was away the amazing Rachel Regan offered to drive me to Fulham so that I could go to the Haven. Needless to say I was feeling apprehensive about this...I'm not a needle fan, well who is, and wasn't sure if it would help or hinder. Chris is a really experienced acupuncturist so I knew I was in safe hands...and as soon as the first needle went in pain free (no sharp scratches!), I immediately relaxed. It was so lovely to be back the Haven and see so many friendly and caring faces. You'll have to come sometime.
After the session, I met Rachel for lunch with this bundle of joy...may I introduce you to Amelie Regan. : )
On our way home we picked up Amelie's big sister Maddie...I know if I need a smile she's the girl to make me laugh. : ) Thanks Rach, for such an amazing day...it's the best I had felt in a while.
A short rest and then my parents arrived closely followed by Kim...a healthy supper was had by all and then Kim and I hit the sack...probably a bit later than planned as we had an early start to get me to see a neurosurgeon about my back...The reason we stayed up late was that I had found some old pics from our twenties....don't worry fellow friends, I'll be sending yours individually and not be posting them on here...but here is my favourite of DW....
As my back was feeling better...positivity level had been restored back to max strength!!!
Thursday 4th May
May the fourth be with you...honestly I'm watching too much Big Bang Theory!
6.25am alarm...eurgh....still needed to be on the road by 7am to get to St George's...A good amount of car karaoke was done en route...courtesy of Smooth FM's offerings.
Today's meeting was with a neurosurgeon to talk about my back. Like the never ending talking of hair, I think the word back is going to be used a lot...so here goes...
There were 3 areas of discussion:
1. My neck and the amount of damage the disease was doing to it and its stability. Dr Parton had been worried about this is, but Mr Crocker felt it was within a safe zone. Phew.
2. There was some evidence in my mid back of some deterioration...so much that he could effectively inject bone cement (there is a posh term for this) to make it more robust...not something I need to do urgently but something to consider...
3. My lumbar area...the area that has been causing the most pain! Well, this was an interesting one...it transpires this disc slipped when I was a kid and I guess as our bones and bodies are developing at that age I somehow compensated for it. I did have scans on my back during my ballet days and a specialist at the time had said potentially later in life that I might need surgery....well hello and what good timing!!! Realistically, surgery is not an option so a pain management plan is needed...ok something to go on the to do list.
The other good news is that he felt it is safe to do gentle pilates and up my physio...every little helps...Overall a positive appointment.
As it was only 10.30 by the time we left, Kim and I decided we deserved a treat so we stopped off in Putney and got our nails done and spied this...
Though by this point I was feeling exhausted...and started dozing whilst my nails were drying....mmn rest m'lady but first lunch...I'm so happy my appetite and taste buds are functioning...so a yummy halloumi and red pepper salad was the name of the game.
By the time we finally arrived home I felt exhausted...but had to stay awake for a bit as my parents and their friend Graham were dismantling our bed ready for the new bed to be delivered...they left fairly shortly...ok now nap time? No, the delivery people rang and needed directions....then they arrived and directed by Kim got the new bed assembled...ok now I can doze.....yes....phone rings...awake again...it's my nurse calling to see how I am....now sleep....yes...but then DW arrived home....DW made some pasta with pesto for dinner...by this stage I felt dreadful...thumping headache, exhausted and the eating was making me feel sick....I just needed peace and to sleep....so I kicked DW and Kim out of the lounge (sorry guys) and finally fell asleep....next thing I knew it was 1am and DW was waking me up to get into the new bed....and it was bliss....
Despite through the exhaustion today's gratitude goes to Kim for being an early bird super trooper to get me to St George's on time and looking after me, my parents & Graham for sorting the bed stuff...and of course to see DW's handsome face again. : ) xxx
Friday 5th May
Wow what a sleep in the new bed...it was definitely worth the investment. Thanks so much to Caitlin, Karen and Gordon for speeding this up for me...it made the world of difference.
After yesterday I wanted to stay at home...but no...I had to go to the Marsden for a lymphoedema check up and meet Dr John Williams, a pain management specialist. Still once we were on our way I was feeling much better.
Ria has been looking after my lymphoedema case for a while...for those of you who don't know when I had my lymph nodes removed from the left side at the time of my original surgery there's a risk you get some swelling essentially as the lymphatic fluid can't drain away as easily...I've got this mildly thank goodness but still something on the list...it means no blood pressure/ needles can go into my left arm as well as its more prone to injection...good news was that it's stable and had in fact reduced slightly since last time...despite me not wearing the highly unattractive sleeves that can help....It's probably due to the surgery that I had in November where my surgeon cleared some scar tissue so all good on this appointment front. Ria did make my day by saying that I had the most beautiful hands of any patient she's ever seen... : ))
Next up to talk pain management with Dr John Williams...why is it always on the days when you're feeling better that you have these appointments. Still I gave him the low down on the back situation, the good, the bad and the really ugly and it was agreed I needed to be stepped up a notch in the pain relief area to something called Oxycodone...which like when buying alcohol I had to show ID for the pharmacist to give it to me...It's an opiate...so yes, I'm now on the drug taking phase of my life! I've also been given some patches containing local anaesthetic to ease pain when needed....and will now be monitored by him and his team and adjust this accordingly. Caroline, the lovely specialist nurse was super helpful as well giving great advise. Naproxen is now off the table due to its impact on kidney function and some other things....but should any inflammation arise after the white cell boost injection the day after chemo, then I'm allowed to take them for a couple of days.
DW and I left feeling like we had a much better game plan....let's hope this works...
The life saving place that is looking after me...
My new drug mix...Oxycodone, Laxido (all opiates bung you up), good old Paracetamol and local anaesthetic patches....
Dinner tonight was pizza night with the Regans...it's a Friday night thing...and we've got making our own to a fine art...tonight was our last as immediate neighbours but these will continue as they are filled with lots of laughter....thanks guys!xxx
Thanks also to my amazing friends from my old team at John Lewis for these beautiful flowers...it was a wonderful surprise! : )
Saturday 6th May
Aside from feeling a bit spaced out the new pain meds are really helping with the back...phew...time to get clearing stuff before the packers arrive on Tuesday.
Out with the old...
This was hard...this was my book writing about our adoption journey...every day was a day closer to meeting that little person. There are no words to explain how I feel about this being taken away from us except for cruel and unjust...but they don't even come close to expressing my true feelings. DW's taken it...I just can't look at it for now.
Saturday night supper with Emily and Ed....plus a delivery of homemade dinners for us to keep in the freezer. : )) Thanks so much Masterchef Wright for our meals on wheels delivery! Looking forward to seeing more of you guys when you move! : )
Then the real party started....we experimented with the non-alcoholic drinks....more experimentation needed but one tasted pretty much like a G&T...so not too shabby!
A busy (I say this in relative terms) but productive day....and tiredness well and try kicked in....the r word is needed...rest, rest, rest!
Sunday 7th May
Sunshine....at last!
A good long sleep...thanks to the new bed...plus my back is not hurting so much if I lay in for longer so this is a win all round! Whoop!
Despite wanting to do some decluttering....it was too much of a lovely day to stay indoors so we went for a walk in Hambleden, with a brief sit on Brian's bench (where the bench idea came from).
The view from my favourite bench....
Today is Sunday...so of course the supper of the week needed to be made. It's a favourite and today we took Sunday night supper on tour to Mr Robert Hamilton....DW and and I have got cooking together down to an art. I love doing this with him, even through I know he'd prefer to be watching Top Gear whilst I'm cooking. : )
Swordfish with cherry tomatoes, capers, & parsley (with a lot of garlic!), asparagus and Jersey Royal potatoes...
One happy Mr H!
So overall a much, much better week than the previous one. It's such a relief to have a pain management plan in place and one that will be monitored from now on. The back pain is not going to go away but if it can be managed then DW and I can have much more fun, than me feeling like a tin man wanting to me oiled! Granted it's still there but I can move more and do more, so positivity levels are fully engaged...I'm just a person with a bad back and a few other things that need fixing.. ; )
Today's gratitude is for walking in the sunshine and relaxing on Brian's bench with DW, for laughing so hard with DW and starting to work with out new normal, for dinner with great friends and being the pillow surfer I am, getting some good sleeps in.
Next week is a busy one...moving day on Tuesday, unpacking Wednesday and ding, ding chemo round 2 on Thursday...x
Hope, happiness and love to you all.
xxx
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