A Belated ‘Happy New Year’

Well after my last post, I’m pleased to say that nothing changed for me and that New year, whilst pretty uninspiring, was not a miserable occasion or a time where I felt like I had nothing to look forward to….result! Instead I just begrudged my wonderful husband the fact that he decided that watching Match of the Day was a sensible option!!!! Oh, how he will never think the same way again…lol! Really it’s a bit mean of me as he was, as usual, a true star over Christmas. Letting him watch MotD for half an hour without a sour face, could have been a lovely way of me saying thank you…..nah…..

Anyway, I know for a lot of my MM friends, this year is looking like quite a tough one. At least 3 of my friends will be going through a transplant…at least one of those having their second. And whether it is first or second, it makes it pretty damned hard for them. It seems like yesterday that we were in that position, and no matter how much people tell you it will all be fine, it is one scary prospect. So if you’re reading this, and you’re one of those people, Nick and I are thinking of you lots and I especially, will be here to support you if you need it.

It all seems quite minor in comparison, but I am finally on the home stretch and seem to be shaking off the illness that I have had since just before Christmas. It has been hard being ill so much, especially for the kids, but they and Nick, have been great with it all. I think I will be asking the hospital whether or not the Revlimid that I am on, gives a huge increase to lifespan. I am not sure how worthwhile it is being on it if it makes me ill so often! Well, it isn’t the drug itself that make me ill, but the fact that it causes my neutrophils to drop and this in turn makes me very prone to infection. And while Joe Bloggs might just get a cold that he can shake in a few days, it seems to put me in bed, and last for weeks!!! It may be that they can just look at reducing my dose of the drug and that this would help things….I’ll have to see on the 17th.

The only other news that I really have is that things are moving forwards now with the ball. It is confirmed for the 10th November at the Crowne Plaza in Marlow and once we have found someone to do us a website (to help us with advertising and the auction bidding) we will be sending out all the details. In the meantime, if you are interested in coming, Save the Date and/or email me to let me know if I don’t already have your contact details. We can have up to 280 guests and it would be great (even if unexpected!) to get that many. I have to say I’ve been really chuffed at the response so far. People I would never have imagined have said that they’ll get tables together and I feel like we’re well on our way to getting the minimum of 150 people! So my next post will probably give details of the help that we might need (I’m not shy of hassling people and begging!!!) but in the meantime, if you know anyone that might donate good raffle or auction prizes, please let me know. We’re up for giving advertising in return if they want it!!

Right off to my bed now….need to get my wits about me with all that is going on.

A time for consideration

After a busy Christmas, we have got the house to ourselves again and that tends to lead to a bit of time to reflect.

This time last year, I found Christmas and New Year really really tough. As much as I knew that my transplant was unlikely to be an issue, you can’t help but worry going into something like that, and we just didn’t know how the pre-transplant treatment would affect me, or how long it would take me to get over the transplant. I remember writing Christmas cards and feeling fairly bitter with every one that I wrote Happy New Year in. Christmas was tricky as I felt so ill. And New Year. Well that was horrendous. We went to a party and both of us just knew we had to leave before midnight as I couldn’t pretend to be happy at midnight.

But this year feels very different. Despite being ill, I feel like I’ve not found Christmas emotionally draining at all. In fact, it’s actually been pretty enjoyable. And I don’t dread New Year either. Nick and I are just going to stay home and have it together, but I feel like there is still lots of opportunity for 2012 to be a good year. Assuming I can shake all the bugs and illnesses I’ve had recently anyway! I hope I still feel like this in a few days time, but it’s good to feel like it now anyway.

So I’m looking forward to a few days of playing on the Wii with the kids and having some fun. I don’t often do that and we’ve got a couple of days with nothing planned…..bliss!

Christmas on hold

Ok, so I’ve held off posting for the past couple of weeks because I am so conscious that all I ever seem to do on here is winge about how rubbish things are going. And the last two weeks have been pretty awful. But at least now, I’m not quite as depressed about it as I was a couple of days ago, so whilst I might not be full of Christmas cheer, I might not make you totally miserable

So what’s been going on? Well, starting nearly two weeks ago, I came down with a terrible fluey feeling. I was totally wiped out, felt achey all over and just couldn’t stay out of bed. I’d hoped it would just be a 24 hour thing, but it looks like someone has other plans for me as I’m still ill now. I’m not quite so bad, but have basically been housebound since then, Christmas shopping is on hold (thank god I’d done most of it beforehand!) and none of the local christmas cards have been given out.

I did go to the hospital on Tuesday to get checked over, but with no temperature and no other cold symptoms, and after xrays and an ECG, all they could say was that they felt it was viral. On Friday the results for that came back negative. I can’t tell you how awful that felt. I just wanted to know what was wrong with me. Apparently it could still be viral and be something they haven’t tested for. Hmmm. So I’ve been made to promise that I’ll go back down on Monday if I’m still ill with it…..looking sadly possible. It’s just not ideal as I can’t really expect Nick to take time off work, but it isn’t particularly safe me driving a 3 hour round trip on the M25 when I feel so bad.

I feel pretty terrible because the poor kids haven’t been able to do any of the things I’d planned for them. I’d been so organised so that we could do loads of stuff in December, and to date that has hardly happened. I know that they’ll forget pretty quick, but I sort of want them to remember Christmas as being a fun time – I mean, for gods sake, it’s the only time I get the arts and crafts stuff out in the year! lol!

Anyway, today Nick has taken the kids down to MY family Christmas do while I stay at home sat on the sofa. I’ve felt ever so slightly better today, but am flagging now so perhaps an expectation to wake up and it all to be gone, is slightly unrealistic. I have to remember that I have a compromised immune system now, and that even though I might have the same number of white blood cells etc as the rest of you, that they aren’t quite tip top in quality. So fighting infections is tougher. And recovery is going to be longer. But it has really drummed home to me for the first time, how important it is that I stay away from ill people wherever possible. When I catch something, boy do I catch it!

The only other thing to say though is how great Nick and the kids have been. Nick was ill too last weekend and has had an awful hacking cough this week. But despite that, he has managed to go to work, sort out the kids for school, cook, iron and do the packed lunches! As my lovely friend and I would say…TLN (The lovely Nick) has been promoted to TELN – just add the word extremely!! I am so so lucky to have such an amazing friend as my husband. He is such a support to me, and deals with what is thrown at us in the most extraordinary way. As corny as it may sound, he is the thing that keeps me going through the thick and thin, and he is the person that pulls me back from the darkest depths when I need that. I love him to pieces and just wish I didn’t have to put him through it all.

So Christmas is still on hold and people might not be getting the homemade goodies from the kids this year, but hopefully it won’t be held against us. And crossed fingers, this horrible viral thing is going to slowly disappear this week so that we can have some time to enjoy as a family this Christmas.

Why is it so complicated?

I had my appointment on Tuesday and things are still ok. My paraprotein has come down again from 3 to 2 – only 2 more and I’d be classed as being in complete remission! So that is all good. The only slightly unnerving thing is that my neutrophils are very low which means that I am really prone to infections and illnesses. Great at this time of year when everyone around is snivelling and snotty! So one plea is that now I know this, if you are coming to see us or visa versa, please don’t if you have an illness of any kind! I’d rather re-arrange. It is quite common on the drugs I’m on- nothing to worry about and just means they’d lower the dose if it continues. I suppose in the long run it could mean me being taken off the drugs.

But in terms of life being complicated, I am just finding it tough at the moment. I should be relieved and shouting from the rooftops about how good things are now, but instead I feel really low. I have thrown myself into things but am now shattered from that and feeling ropey again for the first time in weeks. I slept for 2 hours this morning and still felt terrible…it feels like when you are fluey.

So I don’t really know what’s going on or why. I don’t know whether to pull out of everything and just focus on the family, but I’m scared then it will remind me of what I’m living with. But doing all the voluntary stuff etc means I get stressed that I’m not looking after means home enough. There doesn’t seem to be a right answer.

Nick said tonight that he wondered if it was because for the first time since I was diagnosed, I have really had an insight into how our life may look in the future…that now I have had one transplant it is like a timebomb has started ticking. And funnily, I think that dream the other night really affected me. Stupid or what. For the first time in ages I just want to run away from everything and everyone, curl up in a ball and be on my own. And feel free to cry. I don’t feel I have been putting on a front ( until recently) but somehow it all hits me at once and then I feel awful like I have done today. The poor kiddies had me in tears in the car this evening and then saw me crying with nick later. Bless sam though, he came and gave me his favourite teddies to make me feel better- he doesn’t often do that for someone!!!

It is so weird knowing this cancer is likely to be back to haunt me. For so many there are cures. Or at least very long term remissions. Not with MM unless you are remarkably lucky. I hear of friends ahead of me in their journey and it reminds me of what might and probably will come my way. And sometimes it reminds me of how MM is such a horrid cancer to die from. How it is likely to be a long painful time….and I can’t bear that to be what happens to me or how the kids and nick remember me. I hope desperately we are many years off that though…..but please don’t go on about cures and research – I can’t tell you hard it is to hear those comments. In some ways I’d rather people said nothing at all.

A bit of a morbid post today. Sorry. Tired and feeling so miserable I just needed to get it all out.

Falling flat

I don’t know quite how to explain how I’m feeling at the moment. Maybe it’s all becoming a real anticlimax and that’s the issue. I just seem to be getting cross and frustrated so easily at the moment and I don’t know why. And worst still, I’m taking it out on the people I love the most….Nick and the kids. After all they put up with over the summer, none of them deserve this.

I am just so tired at the moment. My fault though. I totally overdid it with the tabletop sale and I haven’t properly stopped since. With that and only just having got over a cold, I’m pretty exhausted.

As I’m writing I’m thinking though. I have my first post-revlimid appointment tomorrow. I didn’t think I was worried about it; I’m not! But now I wonder if sub-consciously I am because this is how I used to be after I was diagnosed but before I started treatment – tetchy a few days before each appointment. Also, a couple of nights ago I dreamt that I was told I had relapsed! Now I know it was only a dream but I woke up pretty upset by it – one of those dreams where it takes a while to realise it wasn’t true. I’m not sure I can deal with this again every month. It is so horrid to feel out of control of my emotions. I’ll have to decide whether it’s bad enough to pull out if the trial and come off the maintenance therapy. I hope not. If I did and then I relapsed I’m not sure I could forgive myself for what I would have caused. I think I need to give it a few months anyway….and speak to them about whether revlimid can turn you into a stroppy cow (what a great excuse for everything if so!!!!)

On a happier note our neighbour had a gorgeous little boy yesterday. I got to have a cuddle with him today which was just lovely. Even sam seemed quite loved up with him at times. It is so good to have positive things to think about. We had my sister’s 50th at the weekend too which was just great. It was my second oldest sister who had come over from Beijing to look after the kids while I’d been in hospital. Luckily for us she and her husband had decided to come back again to celebrate it!! I’d gone shopping in Bicester with my 4 sisters on the Wednesday and then on the Friday we all went to Sutton where she was staying for champagne and a great Thai meal out. My brother joined us as did all the partners and I can’t remember as good a night for a long long time :-)

The other piece of great news since I last wrote is that another of my sisters is a match for me!! I have a choice!! Well the hospital do anyway!! I keep joking that they’ll be fighting over me now….lol!! It is great news as it takes the pressure off the others in the family who would have been tested but who have really good reasons for holding back. So we’re all really pleased with how it all is. Hopefully I won’t need them for a long time yet!!

Loads of dosh

Well I’m sitting here pretty exhausted after the most amazing weekend ever. I’d written before that I was doing a Craft Fair and Tabletop sale at the weekend and it is now over. I am so so chuffed as the team and I (and god was it a good team!) have made over £1700, and the money keeps dribbling in!! Considering last year we made £450 (and thought that was good!), this was just the most amazing total.

There were 3 of us planning the event, all of us bringing different strengths to it. And then on the day, I can’t believe the support we had from my family, the families of the other two lovely ladies helping me, and my friends. It is just lovely to know that people will do that for a charity. And as much as the people who helped man the stalls, make teas and coffee and clear up, I was gobsmacked at the number of people that actually made the effort to come to the event. We don’t know exact numbers, but think that we probably had between 2-300 adults and kids on top of that!!!! Friends came for miles to support us and that means loads to us. You really start to get a feel for who your friends are and who will go out of their way to help. And even those who couldn’t make it were great at buying online raffle tickets and  donating prizes and items to sell. Fantastic.

There was such a lovely feel to the day and I think that was because loads of the people who came knew each other, either through school, through my family or from other events. But what was also lovely was that we also met a couple of other MM patients. I didn’t know they were coming but I think that the advertising pulled them in and I am so pleased. I always love to meet other people who are going through it….not that it is nice knowing that someone else is unfortunate enough to have MM, but because it is nice to have other people that I can support, and that hopefully will support me. It is also always interesting to hear other people’s stories.

One of the couples I met had experienced the same situation that I had with regards to Wycombe hospital and the staff there. They had been really unhappy with the advice etc and funnily enough, also went to the Marsden and are having treatment there under the same consultant as me! Small world!!

Anyway, I’m still clearing up from the sale, but at the same time, trying to plan in the Glitz and Glamour Ball that we will be holding in November 2012! It will either be on the 10th or the 17th November (and we’re aiming for the 10th!) so pencil those dates into your diary if you are interested in a fab night out in aid of…..guess who….Myeloma UK!!!

Day 104!!! Past the Post

Well, I’ve missed writing on day 100 – apparently D-Day in Myeloma terms. I think it can only be a good thing that I’ve been too busy to even think about what day I’m on, let alone to write my blog.

But today has been a good day, and most definitely deserves a post….one of my sisters called me today with the great news that she is a MATCH! Hurrah!! So what does that mean in laymans terms. well, basically, if I don’t get a long remission from my current transplant, or if I stop being eligible for another normal transplant when I do relapse one day, I may need to consider a sibling transplant. A sibling transplant has the ‘potential’ for providing a very lengthy remission (some say it can be as good as a cure!) but the reason that it isn’t used early on, is that there is a 25-30% chance of the transplant failing – and me dying. Not good. So it isn’t something we’d choose lightly, but it is great news to know that if I am desperate, I won’t have to wait to see if we can find a match.

There is a 1 in 6 chance of siblings being a match, and given that there are 6 of us in my family, I was hoping to have at least one match. One of my sisters has already been told she isn’t a match and we were waiting to do the others but this sister who is a match, had registered with Anthony Nolan years ago and so we finally asked the question! And got the answer we wanted! Such great news! And I also found out today that one of my other sisters has also been tested quietly and in the background. When my first sister was given the news that she wasn’t a match, my other one wanted to try to cheer me up. She wasn’t going to tell me if she wasn’t a match, but had hoped that if she was, it would cheer me up. So, we are still waiting for the news on this one, and obviously more than one match would be fantastic, but I am chuffed to pieces to just have one – I feel very lucky to have this option ahead of me….even if I won’t be lucky to need it!!

Anyway, what else. Not much. Exhausted after a manically busy week. We did make it to Warwick Castle on Friday, went to see Nick’s nan on Saturday, did the Hellfire caves and saw friends on Sunday and did Legoland on Monday…..I’d expected to collapse today but somehow ended up planning my tabletop and craft fair all day!! It is coming up on Sunday and to be honest if we hadn’t done a raffle, it would all be under control!! But we have and I can’t complain as it is making us lots of lovely money for MMUK. If anyone is interested in buying tickets, feel free to visit www.justgiving.com/DebFraserGascoyne

Click to view slideshow.

But tomorrow is for sleeping!! (Amongst a few sale jobs!!)

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!