Day 98 – The Day After and the start of official Remission!

So, as you can probably tell from the title, we had pretty good news yesterday when we went to the hospital! I meant to write this last night, but by the time we had got home and had a glass of wine to celebrate, I was too exhausted!!

We got to the hospital around 10.30 yesterday. We could have got there earlier, but when my sister asked if we wanted a cup of tea when we dropped the kids off, it seemed like a good idea. Nothing like procrastinating!! Anyway, I gave my usual blood donation to be sampled, and the wait began. They won’t let you see the doctor until the results are back in, to make sure that they are working off your most recent results. Anyway, pretty much on the dot of 11.30, we were called back in.

Basically I have been told that I have had a ‘Very Good Partial Response’. Yippee!! My bone marrow biopsy showed abnormalities of less than 5% and my paraprotein had dropped very slightly from 4 to 3. Apparently they can’t class it as ‘Complete Remission’ unless my paraprotein had gone to zero, but this is as good as it gets otherwise!!! My consultant was really pleased and told us to go away and enjoy life! So we are pretty chuffed really. Of course it would have been nice to have had a complete remission, but to be honest, I think that sometimes it all boils down to a few words. I really have as much chance of a long or short remission as the next person, and I don’t think they could say to anyone whether or not the myeloma would return quickly or not. If my paraprotein had gone up and my bone marrow had been bad, things wouldn’t have looked good, but that isn’t the case, so we have to be really positive and pleased with the result!

I can’t quite forget about the whole myeloma ‘thing’ due to having been picked to go onto Revlimid (as I wrote in my last post)…. and because my hair reminds me every time I look in a mirror…..lol!! But hopefully the Revlimid won’t have major side effects (none to speak of after 24 hours!) and the hair will grow.

Nick has taken this week off. We were going to get a cottage for the week, but decided that given we were in limbo about my results, that instead we would use the second half of the week to do nice stuff with the kids. Today was kept free, but in the end we decided to go to London for the day using our new Tesco Merlin passes. And hey, it turns out there is a benefit to having cancer….we got a free ‘carers’ pass which means that I can take someone with me to these places for free, and we get to fast track too! So today, while everyone else had to queue in the rain, we walked to the front for both the London Eye, and the Aquarium…..saved us about an hour and lots of wingeing from the kids! Brilliant and a lovely day was had by us all :-) Later in the week we have pumpkin carving, Legoland and maybe Warwick Castle planned!! I’m not sure we’ll get to queue jump at all of these places as I don’t have a letter from my GP yet, but you never know.

Day 96 – The Day Before

Well tomorrow is D-Day. Although funnily enough, and hopefully not incorrectly, I am slightly less nervous than I was this morning. Well I think I am. More to come on this one.

It’s been a tough few days. Well, a tough couple of weeks. I am struggling massively to get my balance right. The week before last I got it totally wrong. I got so caught up in the tabletop sale I’m holding in a couple of weeks, that I forgot to make time for rest periods. The result was that come the weekend, I was totally flaked out on the Saturday. My fault totally and I felt really bad for it after the event. I spoilt the one family day we had and that hadn’t been my intention at all. So last week I decided I needed to get things right. I knew that I wanted to go to the Myeloma Infoday on the Saturday, but that I also wanted a quality day on the Sunday. So last week, I kept things relatively quiet. I did little on the tabletop sale, did a bit of keep fit on the Wii, but other than that, I didn’t do too much.

So, on Saturday, off I went to the Myeloma Infoday. Which I have to say, I really enjoyed. I met some great new people, some of whom were of a similar age to me, and some people I have met before, including a lovely lady who really keeps me going  – she has gone through a similar experience to me, though is further ahead in her journey. She always keeps an eye out for me, and we seem quite similar in our attitude to life, and to myeloma; keep busy and don’t let it get you down! Works some of the time anyway. There was some real positivity in the day – a cure isn’t on the horizon, but it is starting to be mentioned, which it wasn’t 5 years ago. And the other real positive was that I met a number of people who are now 7+ years post transplant. Given that the average prognosis is 3-5 years these days, it is SO SO important to me to hear these ‘good news’ stories – they really help me to keep going and to think that I WILL see my kids go to secondary school. And who knows, with the new treatments that are up and coming, hopefully I’ll get to see them go to Uni as well.

I was careful on the day, and took some time out in the middle to rest. But I still had quite a bad headache and by the time I got home, I had to take paracetamol to help it. The next day I woke up feeling terrible and ended up in bed most of the day. Sam nearly missed a party because I overslept at one point – made worse by the fact he was being taken there by the birthday boy’s parents. We were 15 minutes late getting to there house, and I have never felt worse about letting someone down. Finally, at about 6pm my neuropathy really started to get me down. So I took some oromorph (morphine) and shockingly, I started to feel better! We have now looked it up, and it seems likely that I was having withdrawal symptoms from the oromorph. Oh my god I am a total junkie! I can’t believe it really, as I don’t actually have that much of it. But I hadn’t had it for about 48 hours and so it is quite possible – the achy feeling I had been experiencing all of Sunday, along with the runny nose, the tiredness etc are key side effects of withdrawal from the drug. So, it looks like I’m going to have to take it regularly moving on, until the day that I need to cut it out all together. And then perhaps I’ll have to go cold turkey!!!

It is good to know what was going on as I felt real guilt that yet again I had screwed up a family day. This time is so precious to me, and I have never felt it as accutely as I have done over the last 6 months. I knew that Nick felt I had let him down by overdoing it (even though he was really good about the whole thing), and I felt like I had let them all down. It has made me really concerned about the tabletop sale and ball ahead of us and we had a long conversation tonight about it. A long and teary one. I know I need to be careful about overdoing it, and the last thing I want to do is to mess up our weekends together. But at the same time, the only way I know to get through this awful time of illness, is to keep busy. I don’t want to think about being ill. I don’t want to think about what our future holds. I don’t want to have time to contemplate how my life with my husband and children might be cut short. So perhaps from a really selfish perspective, keeping busy sometimes ends up being put first. With the hope that it won’t make me more ill than I already am. But that doesn’t really work from a family perspective. So where do I go? God, I dont know yet, but I think I’m going to have to think things through before I commit to this ball. I don’t want my family to feel second best and I think that maybe they do at the moment. Somehow I have to find the right balance but I’m just not quite sure how yet. A bit of soul searching required I think.

Anyway, I also mentioned at the top that I felt slightly less nervous about tomorrow’s appointment. Well at the Infoday, I had bumped into my consultant who had mentioned she wasn’t sure my biopsy results were in, and that I should check this out. So I emailed the hospital yesterday. Today I got a phonecall from my trial nurse, who said that she had wanted to check that I knew that the next part of the trial was for me to randomised to see if I would receive Revlimid as a maintenance drug. I said that I had known this and that I was prepared for that to happen tomorrow. To which, she told me that the randomisation had already happened, and that I was going to get Revlimid. I think she was quite surprised when she heard me say I was pleased. To be honest, that’s only partially true. Revlimid now has the reputation as being good as maintenance therapy. Supposedly it can help prolong both the quality and length of remission and life. So it has to be a good thing. Anything that gives me longer must be better. The only downside is that it means I am on drugs from now on, and indefinitely. I will stay on it I believe, until I stop being in remission – assuming they class me as being in remission tomorrow! I can’t really believe that they would put me on this if my biopsy and paraprotein results were bad. Surely then, I would be starting treatment again. Anyway, Nick has told me to be wary of relying on this, so I’m not totally relaxed, but I am more so than I would be otherwise.

So, off we go tomorrow (the biopsy and blood results are in!). It’ll be a long day as I have to have pregnancy tests every month to ensure I’m not pregnant – ironic since the transplant and chemo have put me into an early menopause by the looks of things…..and the feel of all the b****y hot flushes I keep having! No easy route for us hey! Luckily, my sister lives near so the positive is that I get to see a bit more of her while I wait to hear what I already know which is that I’m not pregnant! As if!

Feeling hot, hot, hot!

It’s been a busy week and I’m pretty shattered now, but I have to say it’s been pretty productive.

Tuesday was appointment day so Nick and I trekked down to the Marsden in Surrey in eager anticipation of my BMB (bone marrow biopsy)! I got there and gave blood to find out that I wasn’t due a doctor’s appointment after all. Typical because it was the first week that I had a few questions to ask, largely about the fact that I have been experiencing hot flushes for the last few weeks. Nothing hugely major in the grand schemes, but they make me hugely hot for a few minutes at a time and, in a rather lovely manner, bring me out in a nice little sweat sometimes! Now I know from what I have read that there is a chance of a transplant and chemo bringing on the menopause, and without going into detail, I won’t know if that’s me without hormone checks.

So, on Tuesday, I asked to speak with my lovely specialist nurse Sharon. I had assumed she would know what to do and what was happening, but what I had forgotten was that they don’t have that many young people going through their doors, and the chances of them being female and going into early menopause is even smaller! So basically she didn’t know much more than me, but sent off an extra blood sample to test those pesky hormones. Anyway, I got the results on Thursday evening and it looks like there is a chance that I am going through an early menopause. One result would suggest I am, and the other gives me a chance of reprieval! Anyway, Sharon wasn’t sure exactly what it meant or where I should go from here and has gone to the gynae specialist to find out more although I don’t really want a formal referral or it will mean more appointments down in Surrey – our petrol costs are going through the roof!

I’m not sure how I feel about the whole thing. Myeloma basically put a kybosh (is that how you spell it??!!) on the idea of any more children – it wouldn’t be fair to have more knowing that they would probably grow up without a mummy for most of their life. It’s hard enough knowing that Sam and Rebecca won’t have me as long as we always expected, but at least with them we didn’t know that would be the case up front. If we hadn’t had children, maybe we would feel differently, but we have 2 lovely kiddies and are very lucky – and we wouldn’t push that luck. Anyway, so myeloma stopped the idea of more kids and so the menopause shouldn’t be an issue. But somehow it is. It makes it all so final. I think I need to try to embrace it (and hope it doesn’t last too long!) and then maybe it won’t seem so bad.

So, after seeing the nurse I went for my BMB. They had said I could have two lots of diazipam and that was good so I went in feeling much more relaxed about the whole thing. An then to make it even better, I was offered gas and air too! I had that when I had my PICC line put in for my transplant and it made a big difference. I think half of it is that you breathe better with gas and air. And you have something to bite down onto when the pain does kick in!! So for the second time, I have to say, it wasn’t too bad. I don’t think it will ever be pain free, but it was as good as it could ever be. And now we wait. Results come back on the 25th. Can’t say I’m looking forward to that.

In the meantime, I am trying to keep busy. I am currently arranging a Craft and tabletop sale in aid of Myeloma UK with the aim of raising over £500! That is in November and I feel really positive about it, as much as anything because we have great raffle prizes and should be able to make lots from that alone. If anyone is interested who isn’t local you can buy raffle tickets at £1 each at www.justgiving.com/DebFraserGascoyne. (Although if I’m honest, a lot of prizes are from local companies – but we do have wine, coffee makers, nando’s vouchers etc). I’m also trying to start organising a Glitz and Glamour Ball for November 2012 so we’re looking for a good venue in and around High Wycombe at the moment. No rest…….well just a bit!

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.