Hello readers!
Sorry been a while since I updated you on progress. Things have been a bit quiet until the last few days so I thought I would do a blog after my trip to London for my second opinion but now I have lots to talk about so war and peace it is....
We have had a busy few days with important dates here, July is a busy month, Mr H and Little Miss H have birthdays within two days of each other. Then on the 22nd we have our wedding anniversary. Usually we enjoy July but this one has been hard and poignant because I cannot be certain if these are the first anniversaries that will prove to be my last. I have found that idea very hard to think on and process, in fact I sat up in tears in the early hours of Little Miss H's 5th birthday mourning all the birthdays to come that I won't see. Thank goodness for Facebook as there is usually someone around to chat to even at 3am in the morning to help me snap out of it. The bonus of having so many mummy friends I guess? I love Facebook. I firmly believe you get out of it exactly what you put in. For me it offers a window to the world and company as I don't get out much lately. I love keeping up with my friends photo's and daily doings, it distracts me and when you have cancer distractions are very welcome.
I managed to spoil Mr H's birthday however straight off by having one of my 'off' days. I had a bee in my bonnet about things not being done 'my way' and really I should have thought about it before putting my mouth in gear. I didn't. I behaved badly. His response? You have cancer. You are allowed. My response? Yes, I have cancer. No. I am not allowed. It does not allow me a 'get out of hurting other peoples feeling card' which I can wave importunely whenever the whim takes me. Bad show. Note to self: Be more aware of what you say. I hope I made it up in some small way with a treat of a meal from his favourite Italian deli and sitting him down later with warm crusty bread, pate and tea in bed? Little Miss H's birthday went better though yet again cancer foreshadowed it as it was also the day of my second opinion in London meaning I spent most of the day away from her. We did her presents in the morning, lots of princess things for a perfect princess! She adored it all and she stayed up late to see me when Jo and I got back for birthday cake and cuddles. I love my perfect daughter and am wishing so hard to spend more time with her. In fact that is a lie. I love my entire family with all my heart and my dearest wish is not to die. But we live with what we live with. I will be here next year and I will make sure it is different for both of them.
Our insurance money came through recently for the burglary that happened right at the start of this process so we have been shopping. I am like most mums, when I have money I spend it on the children and never me, I always wear my clothes out and never buy myself the latest 'tech' but this time I did. I felt so naughty but I figured if I can't buy these things now when I am dying then really when can I? So I bought some beautiful new summer clothes, hats, scarves and shoes. Plus I treated myself to a new laptop to replace the stolen one ready for me to start my new degree in September. I am going to carry on with my course because it will give me an important focus and I suspect more importantly a distraction. Retail therapy is good albeit a short lived fix. So thank you thief, you unwittingly provided me some joy with your thoughtless theft.
My latest round of chemo has gone reasonably well, really all I am struggling with now is extreme fatigue for three days roughly 48 hours after the dose. My tummy has also been affected though unfortunately, my digestion goes on an extreme go slow not perfect when you are also on steroids which make you eat like a horse. Vicious circle. I also have my wig voucher through. Planning ahead for my hair loss you see. It came written on a letter from the 'Appliance Department' Is this what they are called now? Appliances? Hmmm. Nevermind, long with my scarves and hats I will be ready for the hairloss. See cancer? You will not beat me. I am prepared for each step. I will be ahead of you every time. Watch your back.
I have also been busy raising money for charity recently in a novel way, I was sent out of the blue an ugly yellow handbag that has past fundraising history. It has been auctioned off a couple of times before for small charities and my friend arranged to try to buy the bag back for me to auction off for my chosen charity. Sadly the lady who won it last lost her husband to cancer. She has so kindly donated it back to me to raise more money. I will push this monstrosity, because it is truly hideous dear reader, for every penny for Team Verrico who helped me access my second opinion in London. It is important to me I give back what I take and more so if I can It also offers the great opportunity to raise awareness of the charities close to my heart, both Team Verrico and Fight Bladder Cancer. My friends and I are putting social media to good use and attempting to get it to go viral to find those few generous benefactors that exist out there. BBC radio have also been talking to us so we are harnessing the power of the traditional media too and yet again Cancer is forced out of it's hidey hole into the glare of public attention. Ultimately this provides donations to the charities that provide the money for the oh so vital research that will find that cure. Maybe not for me but for those who in the future will have their own battle with this disease. Awareness is everything in this fight.
I was nervous about the second opinion, I needed to do it. I would never have forgiven myself if I hadn't gone. I am a worrier so would always have been thinking what if? Team Verrico kindly paid for Jo and myself to travel by train to London and for the consultation fee to attend the private Harley Street clinic. I was also worried about the toll the travelling would take on me but it is my week off chemo so was the best time to travel, I took double steroids for a day or so too so they helped....along with the mountains of calories they make me consume. Ordinarily I would be so excited about a trip to the 'big smoke' I am a proper country bumpkin and London both inspires awe and fear in me at the same time. I was so glad to have my trusty chemo buddy with me, Jo provides me great strength, more than I think she realises but it was needed for this trip especially. Unfortunately for us though the tube also decided to strike the same day but we grabbed a cab quite quickly and arrived at the extremely posh clinic in time for my blood test. The staff were extremely efficient and polite and my fellow patients were also well presented and beautifully turned out. Jo felt very out of place and I suppose three months ago I too would have been in hushed awe of the presence of money but now I just see another person with cancer. Money might make things happen quicker and more comfortably but still at the bottom of it they are human and have the same private fears as me. Cancer does not distinguish. We then had an hour spare and I took the chance to meet some people I have known online for a while but never met in person. We had lunch with a lovely mummy friend who was as wonderful and welcoming as I imagined she would be. Unfortunately due to the traffic chaos we missed another friend but that just makes sure I have unfinished business that needs completed in the future on the plus side. The consultant himself was knowledgeable and allowed me the chance to ask any questions I had. He confirmed all I had known as true, nothing drastic has changed even though a tiny part of me was wanting him to say no it won't keep spreading, no you won't die, he didn't as he can't. But in terms of it opening doors for the future when we are looking at having exhausted conventional treatment and trials become the only option it was useful. It is also reassuring I guess to know that my current team are doing the right thing, even though I also knew this. I am very lucky with my medical team and being able to access the Northern Centre for Cancer Care, if the word lucky can be used but I do know it could be different thanks to the postcode lottery and for that I feel lucky. The one thing the consultant did suggest though is that my current health and age are in my favour for putting up a good fight, he also suggested a gym membership would be useful. I hadn't thought about this, really I used to be quite fit walking to school every day and tramping around all over with my double buggy and baby wraps but lately I have done very little. So I will look into a swimming membership, I like swimming, I find it meditative and relaxing. Why I hadn't thought to look into this before baffles me, should also help with the overeating too? We even managed a gentle walk back to Kings Cross with over an hour before our train left. I enjoyed it. Walking along watching others wrapped up in their busy day, stressing about the strike, their life, their job. Little snippets of conversations you pick up on as you are momentarily transported into some strangers life. I listen and smile and look around me drinking in the atmosphere. I like to do that. There was a lovely little food market outside the station too when we got there so I bought more foodie treats for Mr H and we boarded our first class carriage to be wafted back home and back to my new normality.
I am sure you are also sick of me talking about how much I am blown away by the sheer kindness of strangers but I am. I recently received a letter from a gentleman who wrote to us wanting us to accept a donation from him and his colleagues who had raised the money for a colleague who sadly lost his wife. This is so sad. I am so sorry for anything that I read about or listen to that means a family are suffering a loss. I would love to take away all the hurt that situations like this cause but know I can't. All I can do is tell you how much these acts mean to my family and me and they mean a huge amount, that others think of us in the midst of their own pain is enormous. I daily receive beautiful messages and cards and small tokens of various thoughtful things from people and they all make me smile, I am grateful to you all for being there and holding our hands. Your faith and hope keeps our faith going.
What now? Well, I have a third round of chemo then a full body CT scan to see if the bastard has spread or responded or just not doing anything. This will happen in about a months time so not much medically happening between now and then.
Until then though more of the same I guess, family life on full speed emotional intensity, trying to squeeze every last drop out of each day, each smile, each tear. I was talking to Jo about this, this heightened sense of emotion. I have been told that anti depressants would make me feel less wrung out and handle the bumps easier. I guess but to be honest I don't think I want to take anything that is going to take away the intensity of my emotions for whilst it might be a good thing for the bad emotions I don't think I want it to take away the power of the warming sensation of sheer endorphins I get out of a simple cuddle from one of the children or indeed Mr H. I want that warming sensation of pure love. I am addicted to it like never before. We also have Little Miss H's birthday party on Sunday and the fantastic sling ladies are running the Race for Life so I want to cheer them away at the start of that too!
Speak soon, I will try not to leave it so long next time...promise, plus I have an auction to update you on.
