• September 12, 2018 /  Uncategorized

    This is Bob Ansell, Sarah’s husband.

    It is with great sadness that I write to tell you all of the Sarah’s death. After nearly 11 years with multiple myeloma she finally ran out of options. She died peacefully with me at her side, in our bed, on August 13th.

    While the funeral was family-only affair, I have arranged a memorial for her. I would be delighted if readers of the blog who felt they knew her could attend.

    This was one of her favourite photos. It was taken a few months after her last stem cell transplant, when she temporarily grew frizzy hair.

    During her life she contributed to improving the lives of everyone she came into contact with. She will be remembered as a wife, a companion, a friend, a mother, a campaigner and political activist. Sarah was cremated on 28th August. This memorial event is to celebrate her life, her achievements and her impact on those around her.

    The venue, Northampton Working Mens Club is in Sheep Street, Northampton, NN1 2LZ.

    It is 2mins walk from Mayorhold Multi-Storey Car Park (Lady’s Lane, NN1 3AH) and Northampton Bus Station, and 15mins walk from Northampton Railway Station.

    A buffet is provided from 12:30pm. Speeches and contributions are welcome from all and will begin at 1pm.

    Please let me know if you are coming, either through this event or privately, so that I can cater for the correct number.

    I can be contacted on 0750 22 55 208 or by email: bob@ansell.me.uk

    I would be grateful if you could share these details with others that knew Sarah and may wish to attend, particularly those from with whom we may have lost contact

  • March 13, 2018 /  Myeloma, Uncategorized

    It’s been a while since I updated, but various people have wanted to look at my blog, which has given me an incentive. It took me ages to sign in as I’d forgotten the details! It will be short I’m afraid as I’m quite busy, but I will try to update a bit more frequently.

    I got through 8 cycles of Panobinostat, but having managed to get my levels down, they then started to climb again and I was feeling very ropey. I had a long discussion with my consultant. As Daratumumab, which would be a good bet, was unavailable then (and now I don’t fit the criteria), the only options left to me were older drugs. We looked at Cyclophosphamide, Melphalan and Bendamustine. In the end, for various reasons, we went for Cyclo and Dex at least to start with, without Thalidomide, which would usually be take as part of the CTD regime. I have peripheral neuropathy and we didn’t want to make it worse. I started Cyclo in early November. In terms of disease levels it has not worked very well, but kept them stable mostly around the 1000 to 1300 kappa range until the last test. I have found the regime very hard work this time, which I wasn’t expecting, but it is likely that the Panobinostat had clobbered me and I went straight into Cyclo.

    Unfortunately my blood counts have been affected and in Feb I had a week off and then again I have had two weeks off since the beginning of March. My platelets went down to 20 and my haemoglobin has been falling despite the time off and the fact I self-inject Eprex. Yesterday I saw my consultant and my kappas have gone up to over 1800, my platelets have revived a bit to 36, but my haemoglobins have sunk further to 73. Not surprisingly I have major fatigue. So things are going a bit pear-shaped atm.

    We decided to try adding in a small dose of thalidomide, crossing our fingers that my bloods and neuropathy won’t be too badly affected. They will give me transfusions if necessary.

    If this regime doesn’t work we may try one of the other drug regimes. But the blood counts may be affected by those and it could be the disease kicking in anyway.

    All this is complicated by the fact I need a colonoscopy – I had a recall from the standard tests. My last one was cancelled due to my low platelets, as I might have bled more if they had to remove polyps. So it has been rescheduled and I may have a transfusion beforehand, although that will be fun if I have to be on a drip while dashing too and fro to the loo from the laxatives!

    Since I had a heart issue on cycle one of my Pano, I have been working through various heart tests (eg ultrasound, ECG) and most recently have had a heart MRI. The cardiologist doesn’t think I have any issues, but it will rule out anything like amyloid deposits.

    The other thing I have been doing is sorting out end of life care details, redoing wills etc. It’s not pleasant thinking about these things, but given my current situation, which could deteriorate, it’s good to have it all down on paper.

    So, life’s a bit tough atm, but one can only hope that we can settle on a regime which keeps me going. As always it’s important to live day to day and spring will hopefully be on its way soon!

     

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  • August 7, 2014 /  Uncategorized

    Hope you haven’t been worrying about the lack of entries. Have to keep this very short but to summarise:

    Felt ok the first couple of days out of hospital. Then went to Leicester for appt and was exhausted for the days after that – profound fatigue though this is normal.

    On Monday we had another long day at Leicester and my consultant said I should be ok at home. However, the next morning I had a temperature so all the way back to Leicester. Admitted after a long day of waiting to a single side room of the haem ward. But today I was moved into a 4 bay ward to day. One lady here is having hallucinations and thinks the nurses are attacking her.

    They aren’t sure of my infection but my c.diff seems to reared up again.

    Upshot is that I’ll be here a few more days at least.

    Am still being told this is all par for the course and I’m doing OK.

    Will be back in touch with any further news.

  • September 15, 2010 /  Uncategorized

    I have now completed the first round of three weeks of Revlimid and then a week off. Just started the next round. No indication yet of whether it’s working as it can take quite a while. My first blood test has just gone off the London and could take at least a couple of weeks to return.

    It was a bit of a shock to the system, and it brought it home to me that my health is gradually deteriorating.I was surprised how quickly the side effects knocked me sideways.

    For fellow myeloma sufferers the details are: One Revlimid a day, 40 mg steroids once a week, Warfarin to prevent DVT, and the usual clutch of anti fungals, Bonefos etc. Also lactulose for constipation, calcium as my levels went down.

    Having just had a week off Revlimid, I feel it’s the steroids that affect me most – the shakes, especially in my hands, muscle weakness and twingeing (also sometimes internally), bad withdrawal from the third day after, low mood, very tired, swollen hands etc. Not sure about the Revlimid – they do make you tired too and my immune system is going down. I had a very few odd red spots but not the dreaded rash that some people have.  I did have some mouth problems after having bitten my cheek and then finding my whole mouth got sore, but have just used Difflam to get rid of it (ruins your taste buds!).  I find I have to nap during steroid withdrawal.

    I am trying to eat well (am hungry with the steroids but do need to put on some weight after my low fat diet) and am trying to go on my cross-trainer everyday. Also using a circulation booster on my feet – they help a little with peripheral neuropathy and prevent DVT in my legs.

    I still haven’t got my Warfarin blood test levels up to where they are needed – maybe due to my diet with lots of green veg! But they are gradually increasing the dose.

    So toodling along and just getting used to planning my week around the pill cycles. I make a to-do list for Tue/Wed as the steroids mean I can get quite a bit done – today was very successful! Yesterday I did the hospital in the morning and a demo against the cuts in the afternoon! Then a visit from a friend later! Yes I am knackered but all the union stuff keeps my brain working.At the end of every day I write down my meds and how I feel, which helps when you think you feel bad on eg day 4 you can look back and see you did the previous week and not to worry. Also helps at appointments. But also I write at least 4 positive things down too!

    Many thanks for visitors, postcards, emails and comments on my blog. All really helps. Visitors very welcome if you are healthy!

    Will try and update again soon.

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  • February 24, 2010 /  Uncategorized

    Tom, Jemma and bridesmaidsRosie and Sarah

  • February 22, 2010 /  Uncategorized

    Signing the register

    Hi,

    Just a quick line to say Tom is now married (last Sat) and he and Jem have moved into their house. It’s been very tiring getting this far, but such a happy occasion! It went brilliantly well and I even managed a few dances! I intend to post some pics just as soon as I can work out how to do it!! Will update properly soon.

  • January 1, 2010 /  Myeloma, Uncategorized

    Hi everyone. So sorry that I haven’t done an update for so long. Various people have nagged me in Xmas letters so I thought I’d do a swift update and then write a little more in the next week or so. I am fine at the moment, and not due back to see the consultant until very early Feb. Also, I have just been told that my retirement to ill-health has been approved, which frankly I wasn’t expecting. It won’t be much, but will remove me from this strange limbo state and make me officially retired. I can move into the retired teachers’ section of the NUT!!

    It is a bit sad in a way, but I will have to move on and make a new life for myself. I have been very active with my TU and political work, but can’t spend all my time in front of the computer and sending angry letters to the paper! So I must find other creative outlets which I do for my own pleasure (or so says my psychologist, and I think she’s right).

    BTW, there was a very good article in the Guardian the other day by a guy who is a journalist, left-winger, my age and myeloma sufferer. I wish I could have written something as good. It’s about the constant use of war imagery in the fight against cancer and the need to empower patients: http://www.guardian.co.uk/commentisfree/2009/dec/29/war-fight-cancer-empowering-patient. Please read it if you have time.

    There are lots of family issues to keep me occupied too, with Tom and Jem getting married in Feb, Bob’s Nan reaching 100 shortly and sadly, the illness of his dad (asbestosis).

    I haven’t got time for more right now, but will try to write more soon. Keep well and have a good 2010!

  • December 8, 2008 /  Uncategorized

    Just a quick post as I lost all my last post due to this dongle!!

    In hospital, have had high dose chemo and transplant of cell. Felt very grotty with nausea and some diarrhoea. Didn’t get home as Bob had a cold too. Bit better now but very very tired!

    May be able to post more in next day or so. Hope you are all OK.

  • September 23, 2008 /  Uncategorized

    It does look as if the comments are working now. To make one: if you click on the page or post you want to comment on eg ‘Comments on my blog’, you will see it says just to the right of that title  ‘2 comments’ (or no comments or however many have been made). Click on that and boxes will appear below. You just need to put in your name and email (website not needed) and then type in what you want to say in the box and submit. It’s a long business learning how to do this for us novices!

  • September 21, 2008 /  Uncategorized

    If you want to comment, you should be able to do so now. We’ve been fiddling with the settings to make it easier, although if spam starts to arrive, we’ll have to make it harder to comment without prior moderation. Remember that your comments will be seen by everyone!!! So don’t write anything you don’t want seen by others. We’re still working out how to do all this, so if it doesn’t work, send me an email to tell me.