My Dad and Chris have come to stay. My Dad made me a present – this is my surprised face!
We have welcomed Crystal to the unicorn glory. She was lovingly hand crafted and painted by my Dad – she’s awesome, and so is he 🙂
Not only will she help with my battle, she’s also a safe place to sit!! I love her, thank you Dad xxx
Talk to you soon
Lots of love Mand xxx
I had a lovely chat with Pat my personal nurse advisor from Red Arc provided by my insurance company today.
Pat has organised some additional complimentary therapy sessions for me closer to home to help me to relax and reduce anxiety to give the drugs the best opportunity to work. I can’t have anything that involves too much pressure on my skin and I’m not very comfortable lying on my front at the moment so I have a Thai foot massage booked for Friday afternoon. I’m not too sure what it entails but keep tuned in and I’ll let you know how it goes!
As well as organising this amazing treat for me, Pat has been a great support since shortly after my diagnosis. Pat is there for me to offer practical and emotional support, she is able to answer any questions I have about the treatment I am receiving and the side effects I am experiencing etc. but more importantly to me, I can talk to her about how I’m feeling and what’s going on in my head without the fear of being judged knowing that she knows how to help me make sense of what’s going on in my mind.
From our first conversation I felt totally at ease and able to talk to her about anything. I know that a lot of people can’t see how talking to a complete stranger about your emotions or feelings could possibly be beneficial (including Phil 😉 ) but I would definitely say give it a go before you dismiss it, it can be quite liberating and immeasurably valuable to your overall sense of wellbeing. After our conversations I always feel uplifted, more positive and confident that I am doing the best I can to get through this.
The outcome of today’s conversation was that it’s more important right now to focus on getting through the treatment than to start thinking about what the next stage might be. It really is ok, in fact it is beneficial to only have a short-term plan right now because it’s probably one of the most important ones I’ve ever been working to. Getting this right will help form the foundations of what will become the ‘new normal’… and there will be plenty of time to work on that once we’ve completed this stage.
Talk to you soon
Lots of love Mand xxx
This morning my friend Donna came round with her two boys Charlie and Jack who are 7 and 6 and her niece Noami with her friend Julie (17) who are visiting from France.
Having been pondering about planning following my last blog, I decided that one good way I could practice being less of a control freak would be to allow children to play with my craft supplies! Now this may sound like a pretty insignificant event to many. Why wouldn’t you share your glitter and glue with children, after all that’s who it’s for really isn’t it? Let me fill you in on my crafting habit… I have been building my collection for the last 20 years, I have punches and stamps and pens, pencils, paints, papers of different textures and colours, glues for every eventuality and a selection of double sided tapes to rival any good stationer. When I’m making cards and stuff I use one thing at a time, clean and replace it before moving on. I keep things like pens and pencils in the boxes or tins they came in and they are arranged in order of the colours of the rainbow, I have a box for the stamps and ink pads, another for the punches, scissors for tape, scissors for fabric, scissors to cut decorative edges… I think you get the idea 😉
So, this morning I began by explaining (without touching!) what the different boxes contained and the basic approach to making a card and let them get on with it! I was on hand to supervise and show how to collect the excess glitter (and put it back into the pot without mixing them up – I was trying!) but generally, I let them get on with it. I did ask Jack what he was creating at one point and he said ‘I’m just being random’. I started to explain that we should be creating something for a purpose and then realised that it really didn’t matter; it’s all part of discovering new techniques and skills and just being creative – especially if you’re 6 or 7!
We all made at least one beautiful card and had a lovely time in the process and I learned that the most precious thing about my craft stuff is the fun that we have with it, not the fact that we have it.
Talk to you soon
Lots of love Mand xxx
As you may remember, a while ago I mentioned that my Mum had decided to have a coffee morning to raise funds for the Big C because they have been so helpful. It was today.
This is the end of week one in my chemo cycle, so we didn’t expect to be able to go because based on my experience from the previous three sessions, I wasn’t going to feel up to it. But as we progressed through the week so well, we thought we could go for it. Mum had been filling us in on all the preparation and the donations for the raffle and the amazing responses from people she spoke to etc. and we felt we had to be there if we possibly could.
Last night we decided to go for it, organised ourselves, arranged a play day for Dude and had an early night! The beautiful rain continued throughout the night and into this morning and was with us for nearly 3 hours into our journey but around 09:30 we broke through into sunshine.
We didn’t tell Mum and Richie that we were going so that it was a surprise and it certainly was that! Their reaction was priceless.
I cannot put into words how humbled I am by the time, energy, generosity and love put into the coffee morning by all everyone. It was so lovely to see so many people, both familiar faces and new ones offering their support so completely. A totally inspiring day. Click here to read my Mum’s comments 🙂
We’re back home now, exhausted and invigorated at the same time – I don’t know how to say thank you enough but really… Thank You.
Talk to you soon
Lots of love Mand xxx
Today I went to the Big C to pick up another bamboo ‘hat’. They are much more comfortable than the cotton ones and feel cooler in this hot weather so I had asked Jean from Frobishers to bring one over to Norwich on her weekly visit. of course, now I have two cool hats (in terms of temperature as well as style 😉 ) and the weather has broken!
We have had lashings of cool quenching rain falling softly all afternoon. I think I had the best nap I’ve had in weeks… the fresh air and rhythm of the drops was like a lullaby. I can’t get over how well I am feeling now. I have some nausea still but nothing like after the last session.
I have had some thoughts creeping in about the next phase. Now that we are 2/3 of the way through ‘The Plan’, my control freakery is kicking in with the ‘what then?’ question. What happens when the chemo is over, what will the plan be then? I am managing it though. We have an appointment with Dr Alexander on August 25th, the week before my final chemo session so I can focus on that as the point to begin planning the next phase.
Until then, my mantra remains, Hydration, Nutrition and Exercise!
Talk to you soon
Lots of love Mand xxx
Well, I took the wonder anti-sickness drug on Tuesday and Wednesday mornings as directed and although it hasn’t completely banished the dreaded nausea, it has certainly helped a lot. I don’t feel as bad as I did after session three which is a huge relief.
In my mind, I was concerned that as I went through the sessions the side effects would continue to build up and I would feel progressively worse however that has not been the case this time so far.
I think frozen grapes that I sucked on whilst receiving the chemo have also helped. Dr Alexander mentioned them at our appointment last week. They are supposed to work a bit like the ‘freezing hat’ by reducing the blood flow in the immediate area which in turn reduces the damage. It does make talking a little more difficult though which of course does not sit easily with me! Previously the sore mouth and throat did kick in later (into weeks 2 & 3) but I don’t have as much of a rough texture in the lining of my mouth as I have had so although I’m not putting out the bunting just yet, the initial signs are good. I think that probably the cold grapes traveling down to my stomach have helped with the damage there which must be reducing the nausea too.
I do have broken sleep again and the additional side effect of ‘night sweats’. That’s why I am writing this at 05:30! I just had one of Yvonne’s fabulous ginger biscuits to stave off the nausea and hope to get another hour of sleep before I get up properly. The thing is, although I know I get grumpy when I haven’t had enough sleep (sorry Phil xx), I can always nap and catch up so it’s not a biggie really.
There is one thing I wanted to clarify. When I talked about the ‘markers’ in my blood that Dr Alexander was pleased with I don’t think I was very clear – so here is another attempt to explain. The markers are levels of two different substances that are secreted by active tumours into my blood. So if the tumours are actively growing, the levels of the markers will be higher than if they are not growing. That is why they are so important because they are showing that the tumours are becoming less active. When we stop the growth is when they are in remission.
I do hope that makes sense! Talk to you soon
Lots of love Mand xxx
Today my nurse was Jo again, it was lovely to see her gorgeous smiley face call my name. I discovered that she’s not that much younger than me (which didn’t really make me feel any better!!).
My right arm has been quite tender this time as I think I have mentioned before, I had the chemo in my right hand the last two times so this time we went for the left. Unfortunately my veins aren’t as good on the left side and the chemo makes them all a bit stiff but Jo did a great job inserting the cannula and we were off.
Again, my white cell count was a bit low so I had to be re-tested but all was ok. We’re doing well with the others though, Jo said that my red blood cell count was impressive!
I am a little nauseous but that’s to be expected, I have the super drug to take in the morning so I’m expecting to feel much better 🙂 Apart from that, my arms feel like tight, sore, fat, sausages but nothing we can’t deal with!
A good nights sleep will make the world a better place so I’m off.
Talk to you soon
Lots of love Mand xxx
Well, what a fabulous weekend.
It was so lovely to see Claire and Trina, we picked up just where we left off and laughed until our sides hurt!
They say that laughter is the best medicine… I certainly feel great today 🙂
This morning my Aunty Bizz and Uncle Edward popped in for coffee on a rare visit to Norfolk from the Scottish Borders which was a lovely treat.
I really do feel great which means that tomorrow’s chemo session can only go well.
I hope that you have had a fabulous weekend too.
Talk to you soon
Lots of love Mand xxx
This morning I have had my ‘Friday before chemo’ chat with one of the cancer nurses from the Norfolk and Norwich hospital. They call to check that everything is ok and to talk about any issues you may have had since the previous chemo so that they can prepare any necessary drugs etc. ready for Monday’s session 4 – That will be two thirds of the way through. We are racing through this 🙂
I then went to the Doctor’s surgery to have my blood taken for the pre-chemo tests. Last night we had a treat of fillet steak. We are not eating much red meat as recommended by the nutritionists however, I feel that a beautifully cooked, lean, rare piece of fillet with fresh vegetables (mainly from the garden) is the perfect recipe to boost the quality of my blood. My Nana always said ‘a little of what you fancy does you good’ and I’m hoping that does the trick. If not, it was a lovely meal that lifted my spirits :). We’ll find out on Monday.
I am feeling really good. I think that the great news from the oncologist Dr Alexander has had a really positive impact. My boss Duncan will tell you, I am quite needy in terms of positive reinforcement 😉 that said, all I need is to be told I’m doing a good job and my sprits are lifted and my resolve strengthened it’s like magic!
I am blogging early today because I have two friends from Derbyshire coming to visit today and we we’ll be too busy catching up later for me to blog. I’m really looking forward to seeing them, Claire has been here to visit (about 8 years ago) and I haven’t seen Trina since we left Derbyshire so loads of caching up to do and no doubt lashings of laughter and of course lots of food 🙂
I hope that you all have a fabulous weekend
Talk to you soon
Lots of love Mand xxx
Everyone’s response to my update from the oncologist yesterday has been amazing. I am overwhelmed by the support I am getting from all my friends and family.
I was talking to my Aunty Joan in Canada on Sunday. Although now retired, she was a nurse all of her career in various roles but latterly in palliative care. She commented on the amount of support I was getting through this blog being so beneficial. The thing is, there are loads of people who don’t comment on the blog but call or send a card or email with words of encouragement and love so the support network I have is so much more than this blog – the enormity of it astounds me. I am still, and will continue to be humbled by it. When I read that back it sounded a bit like I was bragging but that is not the point I’m trying to make;)
The thing is, when we went to the oncologist yesterday, I hadn’t really considered the ‘what if it’s not working’ option.
I talked to Pat my support nurse from Red Arc about it this morning (another source of great comfort and knowledge). It’s not that I was super confident that the chemo was working, I really had no idea if it was working or not. It’s just that if it hadn’t been working, I didn’t know what would happen. There was no ‘plan B’ in place so there was nothing to consider.
Now some may call this naïve but as you may recall from one of my early posts, I have been a bit of a control freak at times (putting it mildly) and being totally out of control is not generally a comfortable place for me. My coping mechanism therefore has been to completely let go and allow the professionals to do what they know and trust them to get it right. Meanwhile, we control what we can – Nutrition, hydration, exercise and relaxation.
That may have triggered an ‘ah-ha’ moment for some of you. Now you might have a better understanding of my mild obsession with nutrition, hydration, exercise and relaxation!
Talk to you soon
Lots of love Mand xxx
