Friday, 29 April 2011

Well the advantage of having a massive royal wedding on the day of a hospital appointment is that I got in to all my appointments on time and didn't have to wait an age in pharmacy for all my drugs :) Had a hilarious time on the ward though as we were all watching the pomp and circumstance taking place which was a welcome change in the drudge of hospital waiting rooms. Oh I do love a good wedding!

I'm day 8 post chemo and this was my final post chemo check up which was exciting. Unfortunately it turned out that I have very low white blood cell count(0.1) which explains why I have been so wiped out this cycle and have neutropenia, basically my body complaining that I have no white blood cells. I came over all giddy, been exhausted and bruising easily. Three days of some injections to wip them back up to normal should do and lots of rest. Bit concerned when they told me though as I really can't get sick with no white blood cells, but anyways, God's obviously been protecting me and I'm feeling in good spirits just getting tired of being tired now.

Nausea has thankfully just subsided! Wonderful relief as it is like extreme sea sickness all the time and makes you feel rotten. Hoping now that is it forever for those nasty symptoms but still paying the price with some problems with my tummy and may need ongoing treatment for a while. But all manageable even though painful.

It is starting to dawn on me that this could be the end. A strange sensation to rush ahead still comes and goes but just have no energy so in bed a lot, walking at night when it is cooler and, and pacing myself. Millie is a little star and has LOVED having her daddy all too herself for the last few weeks which has been lovely to watch. It has helped me no end as she knows that one of her parents is on call constantly and takes the focus off mummy.

House is coming on and despite problems with the builders, we are hoping to have it all resolved soon. We are postponing the move now and hope to be in by June. Wait and see, just need too much help during the day at the moment but the Drs have said that they are pleased with how I am holding up and just to keep resting and let my body get well. MRI Tuesday to check nothing left.

Not much else to report but thank you so much for all your constant support, it has meant so much to us and keeps our spirits up no end.

Tuesday, 19 April 2011

Almost there

This chemo has come around really quickly. Thanks to everyone whose sent me messages,texts and emails I have felt so loved throughout this and I couldn't have kept the smile on my face without the encouragement of all of you. So thank you! Got last chemo Thursday but today found out my White blood count has not recovered so ive had an injection today, and will have one tomorrow, to stimulate my bone marrow to produce more White blood cells. My body is just tired and I've had problems this cycle with mouth ulcers so I'm run down. Not everyone needs the injections but after 5 theyve said it's quite normal for my immune system to be complaining. Bit achy in my bones but should be ok by Thursday. Nothing seems to stop the chemo machine and so I'm hoping I'll be fit enough for it as would be great to be through worst symptoms by May.

Not much else to report. House is coming on. Been a good distraction but stressful at times as so many decisions to make and I'm sort of running the show. The work is great, but builders have not been well organised. This has been frustrating but hoping it's almost done and our super kitchen fitter Jon has been a star. Can't wait to have it all done!

Ray's been off for a few days and is having a 'holiday' which basically means he's gone from working in London to looking after me and Millie. Poor Guy he's not had much of a break but is enjoying being a family. The weather has been great too.

Good news is my hair is growing back. I have a shadow over my head and very fluffy light covering of hair. It looks dark brown but am assuming it'll stop whilst I have last chemo then hopefully start up again without any interruption. One draw back of good weather is that my hats have been getting very hot and itchy. Small inconvenience but it had make me miss my hair for the first time since I started chemo. Hoping I can get my old hair back, but who knows! Very unhelpful nurse told me her sisters hair came back White! Hmmm bit young for that but hey, at least it'll be hair and I can dye it I suppose.

Hope to write again soon once chemo over and I am closer to being in remission. Almost there ...

Monday, 4 April 2011

Busy few weeks

Realised it's been a while since I last blogged which has been a combination of being very busy and not being really up to writing much as a result. But wanted to update you of some awesome news!

My chat with the consultant went really well about a week ago and she surprised us by saying at the meeting they have with all the consultants over my care, they've concluded that my scans are cancer free! WOOOOOOO! This was a massive surprise as the registrar had sort of suggested that there was still cancer visible, but apparently not. My consultant has recommended a total of 6 chemos and then a MRI instead of a CT scan to double check everything but, God willing, I should be declared in remission on 11th May at my next check up her. It is a bit odd though as we're sort of transitioning away from chemo and cancer, and a life without it. The consultant reassured us of the next steps and how I'll be looked after by her and another consultant in women's health over the next five years but we even managed to chat through rehab afterwards and even how long to wait before trying for another baby, which was tearful but hopeful.

Felt really relieved and like a huge weight has lifted since. It is a strange thing as you get used to being very guarded with your emotions and what people say to you as a way of keeping yourself in check and functioning throughout the day. The concern is that when you get good news it won't register, or that you will get fearful that you can't cope if you hear that it is back again. But thankfully it really did register and we've just felt God's Grace to keep focusing on one day at a time, and enjoy all the blessings of that day. I know I've grown up in this area throughout this season especially as I used to crave careless freedom you have when you have no responsibilities or concerns, but now I am so massively grateful for everything I have and I've decided to limit my questions about the future. I'm still learning.

I've been selected for a research project into cancer survivorship which has meant that once I'm feeling better after the my last chemo session (21st April), I can start a three month exercise and nutrition plan with my local leisure centre. It's free and I get step by step help to work me through to a stronger body and mind. It has been so great to know I'll get help with getting my body back a bit as feels like I can't remember what it was like to feel like me in my own body with pregnancy, breast feeding and then cancer. So crazy so am super grateful for the opportunity.

Whilst this has all been going on with we've started building work to have a kitchen diner made downstairs in our new place. We decided it was better to do it whilst we weren't in the house but having to project manage it all and source all the materials whilst this has been going on, is frankly nuts :0 Thankfully it is almost finished and now just need to get everything in, fitted and painted. Phew. Should be complete in a few weeks and then we can move! Yay! So excited to think we could be in our own place after Easter and through chemo. Wow.

We also had another amazing piece of news three weeks ago. We found out Ray's critical care insurance had paid out, and so we had a lump sum through to help with Ray have compassionate leave and babysitting care/nursery for Millie. Such a huge relief and blessing. Thank you for all those that prayed for this. We'd got to a place where we just felt content with whatever happened, but it is still the most amazing help at what has been quite a testing time and will help us look to the future with a bit more ease knowing I can pay for help if I need it.

Ray and I are starting to feel more easy about planning stuff so are thinking about a nice holiday for just the two of us in the UK and maybe Paris too over the next 6 months - so awesome to plan ahead some stuff as you miss it just thinking about only the end of the day. We'll play it by ear as I'm getting quite tired now, and my poor body is not sure whether it is coming or going. I feel emotionally ok, just unsure how to cope with the weakness and aching that has started to happen. The Drs have warned I'll be needing a lot of help near the end and to pace myself but I'm doing really well and are pleased how well my body is holding up. Just need to give my immune system time to recover over the next 6 months. The next few years is important as if the cancer is going to come back they've explained it is likely to be earlier rather than later. After 5 years they discharge me from hospital, but they seem confident that with my staging being early, my health and the fact they've blasted me with so much chemo, I should be fine, but science, as you know, is not exact, and as they amusingly remind me, they are not God :) Looking forward to one more chemo, well that it will be over, and then May. That is my designated month off.... hee hee. Then seeing people and enjoying the summer. Oh let's hope! Almost there.

Keep praying :)

Saturday, 12 March 2011

Good news

Just a quick one to say, scan results were good. Nothing significant found in site of tumour and they've recommended a total of 6 cycles to mop up any renegade cells in my body. Hurrah! Due to the scar tissue in the area they're being extra careful though and we'll have our proper chat with the consultant week after next to chat through exactly where we stand and what the area now looks like. But relieved that treatment is working and feeling more confident I could be in remission by end of May.

Other good news is that this cycle has been so much easier in comparison to the last one. I still have had nausea but we gave one of the drugs v.v.slowly as it has caused a lot of stinging last time, and my symptoms were drastically reduced. I even managed to sit up and chat with my sister and Ray for a bit last night and have a bath. Amazing as I am normally extremely sick for first 24 hrs. So relieved.

So thanks for those of you who are praying,really feeling Grace of God and in His hands.

Ps still no news on critical care money, pls keep praying we'll at least know outcome soon as tricky planning Ray's time off/compassionate leave. Thanks.

Tuesday, 8 March 2011

here comes the sun...

Been loving the sunshine down here since I posted last. There have been moments when it has felt like Spring out on Mum and Dad's patio, so been feeling excited as I'm still hoping that I'll be through the chemo by May.

We've been doing pretty well still. Managed to see some people this cycle which has been nice as otherwise it is just me and the family. Also saw some family over the last few weeks which Millie has loved too. Had v.low white blood cell count the last two cycles which is good as it means chemo is working, but also not great as basically have very week immune system for about 5 days. Drs were debating giving me injection of white cells to help boost mine but I managed to cope on my own and just was very careful with visitors and going out.

Symptoms have been ok, just the usual finger issues. The Dr has checked out the nerve damaged and warned me it may be permanent which is annoying as it is like extreme pins and needles at the tips of my fingers. It has just been an inconvenience so far but now they've started throbbing I'm hoping I can still get all the chemo as they may have to reduce one of the drugs even further to try and control the damage. Prayers that the throbbing stops would be great. Nausea was pretty normal and after a week was able to eat what I wanted, which is good as dinner is a bit of a mission the first week.

I should know tomorrow the results of my scan to see how the tumour is doing - we're hoping it is gone or reduced. Have found it unsettling waiting. I think it is partly as they may up my sessions to 8 in total if they are not getting it. I've been focusing on getting to May and not entirely sure I have it in me to do another 5 instead of 3. I had a CT scan last week and I've felt worried at times and not sure how to wait well. Think it was also partly because Ray had holiday but he spent 5 days away from us in our new house very tirelessly sanding the flooring in our new lounge. He did SO well, it was a tough job and he single handedly managed to get it done! But it happened to coincide with me feeling a bit rubbish so didn't help. Have felt a lot better now he's back home and I am feeling more prepared for tomorrow. Probably partly because I didn't have my usual splurge before I slept each night he was away so I was backlogged :)

We're still waiting to hear about critical care money which will help us plan the final cycles and whether we can afford for Ray to take some compassionate leave. It would be good to try and have some "normal" family time around Easter and as my last cycle is currently due to be 22nd April, it could mean he could have most of May at home once we move in to our new place. Prayers for that would be great as we would just like to know either way now.

We got second opinion on car that broke down and it's going to cost a small fortune to fix so Dad in law has come to the rescue by lending us their clio for a few months. Will help loads whilst we work out what to do next. Also had a lovely lump sum of money from Ray's work which was a massive surprise and will help with sorting out house stuff. Well done Ray! He has been so amazing throughout this and really is an inspiration to me every day. It amazes me that he can still have a smile on his face and a laugh every day despite the madness of his life at the moment. We're just thankful we are near such awesome family support.

Not much else to report really. Hoping we're half way and are able to start thinking about the future from May onwards :)

Sunday, 20 February 2011

ps

Oh yes, and I've decided I'm going to try and make a patch work blanket for Millie. I have some side effects of the treatment which means the nerves in the end of my fingers are not really working, so may have to put it off. But if any one can recommend a good book or can point me in the right direction as to where to start, that would be great!

Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day

Well i'm writing this post from bed having seen a lot of it over the last three days. Chemo #3 is done and dusted and I'm starting to get to the other side of the intense symptoms. I had a reaction to one of the drugs they give you in the hospital which was unexpected and caused some nasty symptoms. The first 24 hrs were the worst yet but rode them out and have felt surprisingly better with the nausea just v.tired; thus the need for sleep.

Since last time I posted we've had a lot on. Got keys to our new place, hurrah, but said good bye to our car which decided to conk out on a busy roundabout in Bournemouth at rush hour. I was driving down to pick Ray up from the train station and despite feeling a bit ropey was not anticipating having to make get the RAC out and the police to help push the car out of a busy road. Thankfully I didn't get ill as it was really cold and had to wait a good hour in the cold before my dad rescued me with his fancy car with heated seats! So having to figure out how to buy a new car and pay for the house, but hey as Ray says, it wouldn't be faith if you could see how it was all going to work out.

I've been slowly getting more tired and Millie seems to be getting more active so together we've had to bring in a new babysitter who helps me out two mornings a week every two weeks on. When Mum in Law is down, she takes over, and it is great as Millie adores her so I can rest and my Mum can get some time to do other stuff too. She has been an absolute star through all this and I thank God daily for her faith, strength and generosity.

We celebrated out 5th Wedding Anniversary the day we got the keys to the house and remembered that we actually stayed in Bournemouth on our wedding night so it felt like a full circle to be out to dinner that night not far from the hotel. Millie will probably think we've always lived around her as she grows up but we've got lots of stories to tell her about her brief stint in London and her posh birth certificate showing she was in fact born in the Borough of Chelsea and Westminster.

We've been sorting stuff out with the house and saw a builder this week to get a quote for some reasonably extensive building work. He seemed really positive about the whole thing and can turn it around quite quickly. With the unexpected car expense may have to put that on hold for a bit but exciting that our plans weren't totally mad and he said the kitchen/diner would look great.

I've noticed most people down here look so tanned and healthy despite being winter. Seems like the sun ignores the season and shines a lot more down here and we've had some lovely days exploring the New Forest and Beach. Millie is already a beach babe and adores the beach so much that she has started making her own sandpit down the bottom of Mum and Dad's garden with some of Dad's left over patio sand. She is quite a girl with a plan and now she is starting to really talk it is hilarious keeping up with what she's decided to do with the day.

On a final note, been really struck by the verse above from the Bible that has been encouraging me this week. I had a good chat with the specialist MacMillan Nurse this week who always helps me with the symptoms. We don't know if we are getting it yet but I've found out that after more investigations my staging is the earliest which means that they are assuming the drugs are working. We were talking about how it feels to start loosing your hair, energy, appetite, etc and I spoke about that even though that is all happening I still feel peaceful. It is true though. I'm learning to live in the moment and as the chemo is getting more in to my body it is very hard and sad at times which me waste away before my eyes. It is especially hard to watch the impact on those closest to me who have to care for me and take over with Millie. I often think it takes just as much courage to face this alongside someone as to go through it as they can feel at times helpless and scared. But inside I can feel my character being refined, I'm growing up lots, learning a lot about courage and what it really means to enjoy every bit of life. I know it may sound strange to some of you but I wouldn't change the path I'm on (at the moment anyway :)I'm learning so much about God's compassion for me and getting an insight in to His Love for me and strength that I can relate to Paul, the writer of the verse, that even though I may look like I'm wasting away, inwardly I'm getting all I need to be Gen, love God back and get enough energy to get through the day.