Day 79 – The fear is growing

I’ve been feeling a bit down the last day or two…..it came on really suddenly after what I suppose has been a really good spell. I’m not sure what exactly is the cause but I think that there are two things.

The first is that I am tired…..take that back….I am KNACKERED! Basically it is my own fault as apart from today, I haven’t had sleep for the past 4 days. I haven’t done that to be stubborn or because I’ve particularly been pushing myself, but because I truly didn’t feel like I needed it. For the first time in ages, I went to bed on Tuesday in the day and just couldn’t sleep….so I did stuff and that night felt fine :-) . The next day was the same and yesterday I still felt good at lunchtime and so didn’t go to bed but pottered around the house. But last night at the kids teatime, boy did it kick in. I had to put them in the bath and go and lie down for a bit. And then Nick and I had a nice row that I picked about something that really wasn’t important. I ended up going to bed earlyish at 9.30 with feet that killed with the neuropathy, but fell asleep within half an hour because I was so tired. And today I have had another sleep but I’m still exhausted! I think my body is telling me not to forget what I’ve been through and that whilst I might get some respite from the daytime sleeps, my body still needs rest.

The other reason I think I’m tired and emotional, is because my d-day is growing closer. On Tuesday I go into hospital to have my 3 month bone marrow biopsy. I hate the biopsies as they are always painful, (even when I have diazipam!) but even more than that I hate what they mean. They tell me what my life looks like for a while, and this time, more than ever, they will tell me what my life is likely to look like for a long time. This biopsy will tell me whether I am in remission or not. It will tell me whether I can stay off the nasty drugs for a while. It will tell me just to what extent I can enjoy my family over the next 12 months. And I am so scared that it might tell me the wrong thing….that I have relapsed and that my transplant wasn’t a success. But I try not to think of that and to be positive. And then when I’m this tired it is hard to keep believing that.

Anyway, it is 2 weeks on Tuesday before I will find out so a bit of a waiting game! And in the meantime I need to try to forget (apart from when they’re digging the screwdriver into my backside!) and get on with enjoying life.

Day 73 – Time Goes on

Well I thought I ought to write another post after someone recently reminded me that I hadn’t written for a while. Like he said, I suppose it is a good sign that life is slowly returning to normal and getting busy again (too busy in my husband’s mind!!). It’s only been 11 days, but admittedly it seems like longer since I last wrote. Lots has happened in that time.

The first thing to update on is my medication for my neuropathy. I have to say it has ended up a bit of a disaster. The night I last wrote, I went to take my new drug, only to realise that they had only given me the higher dose. To explain, they wanted me to start on 75mg tablets for a week and then move onto the 150mg tablets. I had questioned the prescription at the time, but had been assurred that the pharmacy knew what they were on about and basically made to feel that I should shut up!! Hmmm. Anyway, decided that as annoying as it was (and I can assure you there were a few swear words when I realised!) that I would just phone the hospital in the morning and get them to fax a prescription through to my GP.

Oh if it was only that easy. The other thing that I questioned with my pain specialist was the fact that the prescription only gave me 14 days worth of the drug. So what was I meant to do for the rest of the time? Well apparently it is down to the GP to issue those tablets. I questioned this as last time I had been on pregablin, I had needed more and my GP had refused to issue it as it was blacklisted in our area. Supposedly this wasn’t going to be a problem this time and I really shouldn’t worry about it. I think you can probably guess where this is going. Well the hospital faxed the prescription through and at 5.30pm I got a call to say that the GP had faxed them back refusing to issue it due to it being blacklisted!!!!

Anyway, the long and short of it, is that after many telephone calls by the hospital, that they have now got to apply to the local PCT to make an exception for me….this could well take weeks. I would diss the NHS but in so many ways they have been brilliant for me so I shouldn’t moan for a one off. In the meantime, I’ve been given something different to try in the evenings…day 1 of that today.

I’ve been doing pretty well over the last couple of weeks so it perhaps wasn’t a surprise this week when I had a blip after a busy weekend celebrating my sister’s birthday. That along with Rebecca being awake for 3 hours one night this week (for no reason!!). It sort of wiped out Wednesday and Thursday for me. But by Friday I was back to normal which was good.

Today has been a long, and suprisingly for me, a very emotionally draining day. I went to East London to help MMUK brainstorm for a book for children. Talking about the impact of Myeloma on children was hard for me, and listening to others made it even harder. Especially as some are people who I class as friends. I can’t even go into detail here as the day has been long enough already. I hope though that it will help to produce some better resources for parents who are diagnosed with Myeloma, as well as for children of those parents, and children who know people with the cancer.

Oh the other slightly gutting thing I found out this week is that my sister isn’t a match for me should I ever need a sibling transplant. We hope I am many years off this, but you just never know. I still have 4 other siblings who may get tested but it is one off the list, and being the first we have looked at, was a little disappointing.

Day 62 – Sobering thoughts

The last couple of days has given me a bit of a reality check, but also a realisation that I really do need to make sure that Nick, I and the kids do everything we want to do each week, month and year. No more procrastination. And it would be helpful to win the lottery!!!

But in all seriousness, it has been a bit of an eye-opener. Yesterday I spoke to an online friend who lives relatively locally and whose husband had myeloma. I met her when she brought round tonnes of things for our tabletop sale last year and we have followed each other at the myeloma UK site since. But about 2 months ago, her husband died, fairly quickly even if not unexpectedly. I found it strange how I managed to talk to her without getting emotional on my side. I think she felt weird at first talking to me as she was worried it might sadden me, but instead I found myself just wanting to be able to help her as someone who knows where she is coming from. I hope that I can continue to support her through what must be so hard for her – she has lost her soulmate and I know how I would feel if I lost Nick……..

One of the things she talked about was how she and her husband had talked about everything. Nick and I do that for most things, but still have that BIG conversation to have. The time never seems right, and even before I went into hospital, neither of us could bring ourselves to do it. I tried to write him THE letter, but couldn’t even bring myself to finish that…it was just so hard to do. But talking to this lady has made me realise that we need to do it – to ensure that Nick doesn’t have wishes that he had done it more than anything.

Another of my online friends has had sad news too. She had already had one transplant and further to a relapse, was hoping to have a sibling transplant and had got two matches for this. But today she found out that the risk had risen from the normal mortality rate of around 25%, to 50%. So for her, also with two young children, it is now a no go. She desperately needs a cure to be found for this damned disease. As do we all. She is about to do a Glitz and Glamour Ball in October to raise money. Ironically I had also decided to do this here in High Wycombe and it has made me all the more determined to put my worries about it to one side and to do it next October….more to follow as and when I have my plan in place. But in the meantime it has just made me feel for her and her family, and more selfishly, hope desperately for a long remission for me from my transplant.

Moving on from sad news, I went to the Pain Clinic today to discuss my neuropathy. There isn’t an awful lot to say on it really. They have changed my drugs back to one that I was given by accident pre-transplant (pregablin for anyone who is interested!!). At that point I was mistakenly given tramadol and morphine at the same time and found that when I took the morphine the pain disappeared….apparently you aren’t meant to have tramadol and morphine together as it is like a mini overdose!!! No wonder I was pain free!! (Although slightly concerning that they allowed me to be on these in the first place!) Anyway, they are hoping that the pregablin and morphine might work the same way so I have a week on low dose, followed by a higher dose, and we’ll see how it goes.

If it doesn’t work, apparently they have other options and eventually might support trying accupuncture etc. They also have a trial for a new drug that I might be able to try (if it doesn’t interfere with my myeloma treatment) but that is in very early stages and I could get the placebo rather than the real thing….can’t imagine why I would choose a treatment option where I could end up on no drugs at all and so it really would be a last resort.

As to how long the pain could last…..well it could go at any time, but it could also last for up to 2 years. I got the feeling that if I still had it then, that it was unlikely to ever go! Arrgghh..here’s hoping that’s not the case.

Anyway, a day of no midday sleeps today, so I’d better go and get myself to bed.

Guest Blog on Cancer Support

A few weeks ago, a gentleman called David Haas asked if he could post a blog on here relating to cancer support for patients, carers and survivors. And so, I have happily posted it below. For those of you who are reading and looking for support due to Myeloma, I would also recommend www.myeloma.org.uk, www.macmillan.org.uk and www.myelomabeacon.com.

I totally agree with David, that online support can make all the difference in a journey with cancer. I know that I couldn’t have got through the early days without the resources I have listed, and that they have given me the strength to get through each day. I have many friends that I have met online who I my lifeline when times are tough.

Over to David:

Cancer Support – You Are Not Alone

 If you are a cancer survivor, are in remission, or if you are going through treatment, you are not alone. Support is a vital part to surviving, dealing with side effects, and in coping with cancer. Cancer affects so many people and because of that, there is a wide community of others going through the same struggle both online and in person who can give you the support you need.

Importance of Support:
How important is outside support for cancer survivors? The physical effects of cancer can be devastating, and the emotional effects can also take a toll. Being able to talk with others who have experienced the same illness can be comforting and affirming. Many would call their support networks their lifesavers and would consider them an absolute necessity in the course of their cancer treatment. 

Weekly Meetings
In many communities there are weekly cancer support meetings that can accommodate a variety of schedules. For many, these weekly meetings may be crucial in maintaining good mental health while struggling with the physical ailment of cancer. Stress has been shown to aggravate any physical illness, so working hard to reduce stress by having a good support system is absolutely vital. At cancer survival meetings there is ample opportunity for inspiration, empathy, and positive energy that can revitalize and encourage.

Online Support
Online support for cancer survivors is also abundant. At DailyStrength.org, there are caring and kind support groups for breast cancer, chemotherapy, colon cancer, esophageal cancer, family and friends of cancer patients, gastric cancer, head and neck cancer, mesothelioma, and many more.

There are many benefits to having an online support group. For people who are house bound by cancer, the online sites offer support from the comfort of home. The Internet offers quick networking for people who need immediate support. Even doctors may be part of these online support groups and may include a mesothelioma doctor or oncologist.

Many online support sites also offer the added benefit of a place to keep a written journal. Some sites offer the choice as to whether the journal is private or friends may be allowed to read and comment on journal entries. For many, the journal offers an excellent opportunity to sort out thoughts, to exorcise fears, and to be able to look back and track recovery, healing, and revelations. 

There is no need to go through cancer alone. Many caring and compassionate people are out there to help most anyone weather the storm that cancer can bring. It’s not hard to find a wonderful community of people and professionals for crucial cancer support.

 By: David Haas

Day 56 – Feeling Good

Well I am now nearly 2 months since my transplant and how it seems a lifetime away….a bit like childbirth really….you forget the worst things – THANK GOD!

I feel like I can see a light at the end of the tunnel for the first time in ages. Even when I have bad days (which I certainly do – both from an emotional and a physical perspective), I can put them into some kind of perspective now and that really helps me emotionally. I am learning to look back at where I was weeks before, and how little I could do, versus how much more I can do now, and I find that this helps me to be so much more positive and gives me much more hope on what can come.

We had a really busy weekend but it was lovely. Friday saw our school having a night at the local park. We hire a marquis from the village (who do a fete on the Saturday) and have an evening of drink and food where everyone just takes picnic blankets and chairs and sits around chatting. The kids are there too and love the idea of being there in the dark with their glow sticks till 10pm!!

On Saturday we had a joint party for Rebecca and Sam. Sam’s birthday was at the end of August and Rebecca’s isn’t until October, but we decided pre-transplant that in order to take the pressure off me (and believe me I feel the pressure to perform for kids birthdays!!) that we would give them a joint party in the middle of both birthdays. What a great decision. We took 32 kids (!) to a soft play area where they did everything….party bags, cakes, food….the whole lot. Result. No stress before, no stress during and no stress after. :-) I wish we could afford to do it every year, but it was well worth every penny for this year. After that, we took the grandparents and godparents that had come with us to the village fete for the afternoon and then back to ours. Sunday was church and pottering around the house.

Monday I cooked all day, forgetting to take my daily sleep….now why I thought this was a good idea after such a busy weekend, I’m not quite sure, but I decided that making bread and two separate meals for the kids and Nick and I was much more important….and god did I suffer by the evening when I fell asleep on the sofa at 6pm, ate a bite of dinner and was back in bed by 9pm!!! Will I ever learn…..probably not! But I did have a good time doing all of it and what was great was that the recovery time was less than it had been two weeks previously.

I’ve seen a couple of really old school friends over the past two days too and that was lovely. Time to chill and just talk has been great…one day, the conversation won’t be about me and my transplant…I hope it won’t be about me and my cancer too, but somehow I wonder if this is inevitable nowadays. It is hard for me to not mention anything to do with it as I live and breathe it, and I suppose it is hard for others not to talk about it in case it seems uncaring.  But for now I don’t mind it and hope my friends don’t either.

Any other news. My appointment with  the pain specialist was postponed….by letter….last week. I have to wait till the 20th now which is frustrating as the neuropathy in my toes is no better, and I sometimes wonder if it is getting worse. I hope not. People keep asking me what peripheral neuropathy is……well, the official definition is that it is the term used to describe damage to the nerves that make up the peripheral nervous system. Basically my nerves have been damaged by the chemo called Velcade that I was on pre-transplant. For some people this damage is temporary and this is normally the case with velcade. But occassionally it can be permanent damage. It is apparently too early to say for definite with me, but it isn’t looking great given that I am already 3 months down the line.  In terms of how it feels..my feet always have a mild burning sensation on the soles and toes. When it gets worse (generally in the evenings) it feels like either I have frost bite, or like someone has broken my toes!! Not that I have ever had broken toes, but that is what I imagine it would feel like. I also have a permanent achy feeling in my calves. A bit like what you might experience when you have done exercise for the first time in months. It hurts to go down stairs or downhill and I look like an 80 year old lady when I get up and down from the sofa!!

So as you can imagine, I was pretty upset when my appointment was postponed. I hope desperately that the doctor can come up with some suggestions next week when I see him. I can’t imagine living with this pain forever as it does impact on our lives…I can’t walk long distances and my legs feel tired fairly quickly. Even things like the kids sitting on my lap can hurt at times so the sooner I can sort it out the better.

Right, I’m off now…..I’ll be posting a guest blog in the next day or so….watch this space!! And if anyone else ever feels the need to contribute, please let me know!

Day 50 – Hospital Update

So today I went back to see my consultant and check that all was going well. And the good news is that, after 3 hours waiting for my bloods to get back, things are still going in the right direction. Well I presume they are. They just told me that they were fine and to go home!

I had a good conversation with the Professor today though and he confirmed that the tiredness was normal and not to worry…not that I was worried as such, but more wanting confirmation that I wasn’t sleeping TOO much. But it sounds like the normal 1.5 – 2 hours extra I get most days, isn’t as much as perhaps I should and so I need one or two days where I play catch up. That should get easier as time goes on….I hope so!! I slept till 9.30 today at my sister (the one who lives close to the hospital) but am exhausted now having not had a sleep all day. Bed at 9pm tonight me thinks!

I can see differences now though…and I’m trying to make myself think back and make comparisons to things I was doing a couple of weeks back. It helps me to understand how I am progressing. We went to the Cookham Regatta on Saturday. It is one of Nick’s work do’s where they part sponsor the event, and so the company puts up a tent, and provides employees and families with food and drink. It is always a lovely day, and there are loads of stalls, bouncy castles, climbing walls (no I didn’t!) etc and so I had really wanted to go despite having had a sleepy week. And we went for about 4 hours and had a lovely day. Yes,  I was tired that evening and the next day, but not like I had been after I had my shopping spree (for those of you who remember that disaster!) – I just knew I needed to be a bit more rested. I even went to church with the kids the next day….another earliesh start!!

This week has seen the kiddies finally go back to school :-) I hope that some routine might help me in my recouperation, and I know that they will do well to be back into some discipline!!

Not that they are badly disciplined…as I have said before, I’m pretty proud of their behaviour most of this summer! Apparently Rebecca had to write about herself today and one of the things she had to say was what she’d liked most about the holidays. The little love said ‘ Being at home’……considering how many treats she had received this holiday, and how many fab places she had been to, it meant a lot that she loved just being with us. And I hope that it suggests that it hasn’t spoilt her having all those things, that she still values the important things in her life, like our family. And I hope that we can take some of the credit for that…we have tried really hard to make our time together special over the summer, as difficult as that has been at times with my tiredness. I am so pleased she loves her home.

Anyway, this weekend will be another busy one. We have a school event tomorrow night, kids invited (!), followed by Sam’s birthday party on Saturday morning, and the village fete in the afternoon!!! Busy, busy, busy!! So Sunday is booked out for sleep!!!!!!!

Day 44 – What a sodding rollercoaster

You’ve got it, a bad day. Well a bad few days really, but they’ve only actually started to get me down today. I know it’s all about me being so impatient and wanting to be well before time, but no matter how much people tell me it will take time, it is so hard sometimes and gets me down so much.

The history: well after a busy weekend, this week hasn’t felt too busy at all. I got a sleep on Tuesday morning; Wednesday a friend had the kids all day and I slept for 5 hours; Thursday I slept for 2 hours in the morning, sat in the local park for an hour and then went to a friends with the kids in the afternoon; Today, got a 2 hour sleep, a friend made the kids lunch and then we sat in a soft play area all afternoon. Oh yes, and last night I went to bed before the kids at 6.45pm and slept till 7am!!!

The reality: I still feel absolutely, ridiculously tired! More than I have done for ages. I don’t think it is helped by the fact that my neuropathy in my feet has got worse too….my toes feel like they are broken/ thawing from snow chill.

I am so tired I just don’t understand it. I had moved on from needing to sleep all day when I stopped all my medications….so why do I seem to have gone about 5 steps backwards? That’s what it feels like anyway. And people keep saying that it is my body telling me what I need…well that’s just great, but I don’t want to need that…I’d just got used to the idea that life was starting to move forwards, that I could look after my own kids for at least some of the day, and that we could see the light at the end of the tunnel. Life was looking positive. And now it doesn’t feel quite so positive. Don’t get me wrong, I know it will get better (well the sleep issues will even if the neuropathy doesn’t) and I know one day, hopefully in the next couple of months, I will feel like life is more like normal, but I need that now.

Today wasn’t helped by my gorgeous girl. We were lying down on the bed talking before she went to bed and she asked me if I would always be poorly….that she didn’t want this to have happened to us…..and words I can’t bring myself to put down about basically me not dying. The poor thing had me burst into tears on her and hug her so tightly. To which she just calmly told me not to be sad and hugged me back, smiling the cutest smile. How do they pick up on these things? I had to tell her that I would always be poorly but hopefully wouldn’t have to always go to hospital and that the reason I had gone in was so that it would hopefully be a long time before I’d have to go back and stay there. God I so hope that I am right and that I don’t have to go back for a number of years…it has obviously hit her somewhere in her little calm exterior. So that is probably why I am now blubbing my eyes out writing this…in fact probably why I’ve blubbed lots all evening. Me being stuck in bed tired, makes life so much harder for them. So much less normal. And that is why I want it back to normal NOW, and not in the 8 weeks everyone is telling me it will take. That is why it doesn’t matter what anyone says to me, it makes me feel rubbish to be so tired and incapacitated. That is why I feel so sad tonight.

Day 41 – Social Networking sites have their positive side!!

Things have been pretty good since my last post. I found it hard the two days after my shopping trip and the night after I was totally wiped out, felt sick and had to resort to sleep!! It didn’t make me regret that shopping  trip as that had made me feel normal again and had given me a day with my family that was just fantastic. But it did make me realise that if I do a day like that, I need to have a rest day afterwards…a day of doing nothing!

I didn’t do that after the shopping trip….we went to see my parents the next day. That was lovely and it was so nice for the kids to see them. They don’t live that far away, but somehow that means we see less of them!! My parents have gone through a lot themselves recently with my mum being in the process of (a very successful) recuperation from a bowel cancer operation, followed closely by a pulmonary embolism that nearly killed her. But she looks better than I remember her looking for a long long time. What is also nice, is that my dad seems really good. He suffers from severe hearing loss, but made more effort with the kids than I have seen in a long time which was great for them, and so so lovely to see. 

Cancer is tough on those who are carers…..as tough as it is for those of us who have cancer I think. And for someone like Nick who may lose me early on in our relationship, I would even say it is tougher….he will be left with the outcome of it all. But as well as it being tough, I think that cancer can make life more positive.  I certainly feel that for Nick and I, it has brought us closer together and has changed our relationship.  I get the feeling it has done the same for my parents, even after 50 years of marriage. It has also changed our priorities in life….family is now topmost and we make time for each other in a way that we didn’t before this hit our life. And that has impacted on our relationship with our children. I always thought we were ok parents….we loved our children, provided for them and did what they needed. But now, I think we really prioritise them, we talk and listen to them more, shout at them less, and try to think about what we would ALL enjoy as a family. And the results have been clear, to me anyway. My relationship with Rebecca is so much stronger than it was before….she is more emotional, and comes to me more….a bond that was never quite as strong as I had wanted it to be, seems to have come through all of this. Our kids just seem happier. Funny really considering what we’re going through. We all have our sad moments, obviously, but there seem to be more close moments, and more special times that we can smile at…..and that has to be a good outcome from a crap situation!!!

And moving on….

We had Sam’s birthday yesterday. I had been so worried I would spoil it by needing to be in bed or not coping with the day, but it all went really well. The little gorgeous one is now 5 years old….where did those years go….I can still remember the ins and outs of his birth (not one to share now I feel!). So I got up nice and early with everyone – he was SO SO excited, but still managed to stay in bed till 7.15. We had a lovely present opening session where he was just as excited about his cards (and being able to read most of them for once!) as his presents…..sweet! How many presents did he have?? So much Ben10 stuff, I think the shops must be empty now…he certainly has all that he needs! I then went back to bed for a couple of hours, leaving him to play with things, and in the hope that it would give me the energy I needed to get through the rest of the day. It was hard, and I was shattered by the end, but we had a lovely afternoon with a couple of Sam’s friends coming over to play, and then went to Pizza Hut – collapsed on the sofa when we got back for the rest of the evening, but well worth it to see Sam have such a lovely time with his friends :-)

The kids were meant to be staying with their lovely Auntie Sarah in London for a few days this week, but her youngest son developed an abscess on his tooth which got pretty serious. His whole mouth swelled up and he ended up at A&E in London. He is still there as we speak, but fingers crossed won’t need any of his teeth removing. Lots of love and prayers flowing his way, as it has been really hard for him to be in so much pain.

So, I needed to find some help. I am doing so well I think with my recuperation, but I can’t really manage all day if I have to get up with the kids at 8.30 when Nick leaves for work. They are brilliant and will play on their own for an hour or so, but I still need some sleep at some point mid morning. So when I realised I would be with the kids this week, there was a definite need to make use of all those offers of support we had been given. I wasn’t sure it would work at such a late time in the day, and I could tell Nick was getting nervous….he has a busy week at work and can’t afford time off to help for once. I don’t think he thought I’d get the help we needed but oh how did I show him.

Now Nick hates facebook. Thinks it is a total waste of time and that it is just about people being nosy about other people’s lives. Now he is slightly right, but I can see the social benefits of facebook and this was the time that really proved it to me. I put on a request for help for the week, and within about 20 minutes had got the week sorted. People have just been great and it is so lovely to know that offers of help were truly meant and not just said. We are so grateful to those of you that have offered to help this week (including those where we haven’t needed to take you up on it) and here is a HUGE thank you to you all. The kids are just loving this time…..they now get sad when they’re staying at home!!! So to all of you who are anti-social network sites, here is your proof they can be a life-saver!

Day 38 – Superb!

Just a quick one but I had to log just what a good day I have had today. Got a lie in till around 10am after which there was a bit of clearing up before going out with Nick and the kids. We were only meant to be doing a couple of bits, but ended up shopping until about 3.30pm!! And I was fine! Absolutely ok! Obviously the neuropathy was there and my feet were in a lot of pain, but I have realised that I need to separate that from how I am feeling post-transplant or I’ll never see the positive response to things. And today, I feel the same tonight at nearly 8pm as I would do any other day where I’d been so busy. What a feeling!

And what has been lovely is that the kids, especially Rebecca loved today too. They hate shopping normally so I’m not quite sure why today was so different, but Rebecca got some new school shoes which she LOVES, and had her hair cut, including a fringe being cut into it. And despite having put it off for months, she loves that too! Amazingly, tonight as she was going to sleep, she told Nick and I that it was her favourite day of the holidays…….and I was there for it….fab.

I am on such a high :-)

Day 37 – Keeping Positive with loads of love!

I’m feeling pretty positive at the moment after a couple of good days and lots of good family and friend support! So I thought I should write a blog entry that wasn’t depressing and miserable for me and for everyone else.

The day after I last wrote the children got back from their grandparents house. They had had a lovely time and while they were there, one of my sisters had popped round (she lives in the Midlands too) with a beautiful box for me. Now she had mentioned that my 22 year old niece had wanted to give me a little something, but what she had omitted to say was just how special this little something was going to be. I opened the box and sitting on the top was a photo album. As I opened the first pages, I burst into tears and knew I couldn’t open it in front of Nick’s parents so it waited until the kids went to bed….they’d already asked if I was crying because I was happy or because I was sad?!

So when I opened it later I got to look closer. In the box were so many lovely things from my family. An amazon voucher, nail varnish, pampering creams etc, a dvd, chocolates, a gorgeous mug and lots of lovely teas and hot chocolates. But the most secial was what my lovely niece and sister had arranged. They had got each of my 4 brother and sisters, my parents, and some of my nieces to write a special message to me about the journey that we are all going through together. Blub, oh how did I blub…..but in a good way…..in a very special, ‘I feel loved and cared for’ way. It is so the sort of thing I love, so me, and they got it. They know me so very well. I love them so so much.

Yesterday was a good day. Maybe the box helped to push me into being more positive. One of my NCT friends came over with her son. She was only going to come for a quick coffee, but ended up staying for nearly 3  hours and it was just lovely. Her son was a gem on his DS lite which meant we could just natter for ages and catch up on so much…and it didn’t seem like she was here for long at all – just how you want it to be. In the end I made us all lunch (another good thing!) and then we went for a short walk up the lane. All so good for the soul and so good for my recovery I feel.

I was pretty tired at the end of that so had a dose for a couple of hours while I waited for the kiddies to get back with another great friend…my next door neighbour. She has only lived there for a year and I just don’t know what we would do without her. She is so generous with her time and for someone we have only just met (in the grand scheme of things) she is so willing to do anything for us or the kids. Considering she is 6 months pregnant with her 3rd, she really is some kind of superwoman! I just hope that when she needs some help in November, I will be well enough to step in and make up for all the help and support she has given us. Anyway, I managed to oversleep them getting back, but eventually got over there for a cuppa with them before bedtime. A busy day, but one that just made me feel pretty good.

And today has followed suit. The kids went off mid-morning with another lovely friend of Sam’s….another person who has stood by their promises to help and has just been great. I was pretty shattered as I’d been up since 8.30 (early for me, late in most people’s books I know!) so I dozed on the sofa until about 12.30 when I forced myself up to have some lunch before I was due at a friends for my now daily cuppa! I drove over there and spent a couple of hours catching up with her which was great. I think just getting out and being at other people’s houses is so helpful at the moment…it stops me from feeling like all I’m doing is slobbing around the house. Next stop is actually doing practical stuff rather than ‘nice to do’ stuff. But I am worried about pushing that too hard. I left hers at about 3.30 with the plan of going home for a sleep, but fantastically, I didn’t feel too tired when I got back so  instead of wasting my day, I got to skype my sister in Beijing and then do a bit of organisation of online photos. It really doesn’t sound like much, but I have found it hard to concentrate on anything since I went into hospital, so concentrating on the photo’s was another step forward for me. And actually it’s a lovely thing to go over all the lovely things we’ve done since I was diagnosed….despite it being a hard time, we’ve had some good friend with lovely friends and lovely family. The photos are such a good way of remembering that times haven’t always been tough, and won’t always be tough once we get past this patch.

And tonight, when Sam and Rebecca got home, the parents of Sam’s friend came in for a drink. I wasn’t sure how I’d feel or cope with it as sometimes tiredness just comes over me at that time of night, but actually it was really, really nice. I felt like life was normal. I cooked meatballs for dinner and managed to make the whole meal without having to pass it over to Nick. I feel like things are falling back into place. I feel good. I hope this continues as we have a busy weekend ahead with a visit to my parents on Sunday, and Sam’s birthday on Monday….we just have to hope I’m not in bits by Tuesday!

So life is good at the moment. Really good. (And we’ll save the boring neuropathy talk for another more depressing day!!)