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Me and My Dad

Good evening everyone,

I'm Sam and my Dad has been diagnosed with AML Leukemia. I'm a little scared of writing this first post in case I just waffle and in case it all makes it a little real to admit its actually happening to him.

I happened upon the forums while I was looking for more information on bone marrow transplants. I hope you don't mind me sharing our story with you all. Its difficult to know how to explain it all as its

We are now sitting watching Doc Martin after my Dad has had a full day of tests at Addenbrokes in Cambridge. He's so tired from being shuttled backwards and forwards between departments for testing but he's trying to be as normal as possible. I don't blame him.

Dad was diagnosed after he was having some blood tests done for a review of his epilepsy pills. It was discovered that his white blood cell counts were low. Very low. He'd been on the same drugs for so long that the doctors assumed it was the pills he was having was causing the low counts. He was given a few types of pills to trial but with little to no change in his counts. Eventually he was asked for a bone marrow test to be done at our local hospital. A couple of weeks later and he was diagnosed with Leukemia.

I had been at home when Dad had gone in for his bone marrow test, but when Mum and Dad Skyped me after the results I was already in Florida rehearsing shows for a cruise ship. I ended up quitting the contract the following day after a long night of little sleep, deciding that I wouldn't be able to concentrate or focus on what I needed to be doing despite Dads strict instructions to not come home. It was clearly pointed out to me that if I quit I wouldn't be able to be re-hired as that was the company's policy. I got a flight that night and arrived back in the UK the following morning surprising Mum and Dad (I didn't want them to worry while I was flying). Soon as I saw the relief on my Mum's face I knew I had done the right thing by coming home, despite the personal prospect of losing the job I had been doing for the last 8 years. I've been dancing all my life and always knew that an end would eventually come up. It's not the way I had envisaged it but I'm a believer in fate.

I arrived home the day before Dad was due to go in to hospital to start his chemotherapy. Dad's first round of chemo was by all accounts fairly smooth. Most of his side effects, except a few, were remedied with a small bucket of pills daily. He of course eventually lost his hair (or what little he had left. We shaved it before he went in, he didn't want to look messy for any visitors). There were days that were quite depressing and down spirited during his initial month stay at Ipswich hospital. The daily, hourly, minutely monitoring was quite a strain for him. Lack of sleep really pushing him to the verge several times as they poke, prod and test you for everything. He eventually was allowed to come home and was able to get some proper rest and had some friends come to visit him at home.

We are now sitting at home after his second round of chemo. He only had to stay in for his actual treatment this time and has been allowed to recover at home. Unfortunately he ended up having a trip back in to hospital after a raised infection marker turned up on a trip to the day clinic. Turns out he had an infection in his bowel. He was monitored and given antibiotics and was allowed to come home again after a week but is still in quite a bit of pain from it.

Sadly during all of this my Nan, my Dad's Mum passed away in the local hospice which has been the hardest part of all of this. It was expected however so there was some relief. We were told in April that she only had a month left at the most, but due to the care that my Aunt was giving her she lasted many more months as was able to stay in the comfort of her own home until near the very end. Dad was let out in the afternoon a few days before she passed so we were all pleased he could see her one last time. Since she passed its obviously been very difficult for him as he feels like he isn't able to help with funeral arrangements and the house clearing etc. but along with the pain and the looming bone marrow transplant its more than hard for him, for all of us.

I'm trying to remain positive and focused around him, help keep shining a ray of light on any situation we are facing but its hard. Just hard. I try to make sure we talk about anything that has happened that day. I know he feels like he unloads on Mum so I try and take some of that burden for her. We have been quite open about whats happening to our family on Facebook and we receive daily messages sharing love and well wishes which I always share with Dad. If I see a nice quote or picture I try and post it to his wall so he finds it when hes looking online. Some friends have also come forward with their stories of cancer sufferers and survivors, some that we didn't even know about which has been invaluable to us to hear how others have coped.

Mum has been an absolute rock for Dad. She's been there everyday for him. Every time there has been visiting hours, she's been there. When the smell of hospital food has made Dad feel sick, she's been there with hot food that she's rushed out the door and to the hospital to make sure he's eating. I've taken to calling her Matron. She is honestly Superwoman. She has somehow managed to find a way to do everything and more for Dad and for us as a family, not to mention baking shortbread, cakes and homemade bread! All beautiful and tasty! What a way to cheer ourselves up after a stressful day than with a big slice of Mum's cake. I wish she would let me do more for her.

If you've made it to the bottom of this post then thank you for taking the time to read through our story. Its still massively long (and this is the edited version!) but typing this out has helped me put my rollercoaster thoughts and feelings out without having to put any more pressure on my Dad, Mum or Sister.

Dad is brave, so we are brave. We are brave and so is Dad.

Comments

  • Hi Sam

    It sounds like you are part of an incredibly strong family and that is absolutely priceless in the journey you are all on. I'm sorry to hear that on top of it all you have had a sad loss too.

    I joined the forum a few months ago as I am pre transplant myself and have found it invaluable, particularly in times that you need to get your feelings, thoughts and random questions out but don't want to feel like you are burdening those around you (even though they don't see it as a burden!) my family have supported me tirelessly and I don't know how they put up with me sometimes! But they give me the strength to keep on fighting.

    I am sure there will be someone on here who has experience of your dads condition and will be able to offer more insight but I just wanted to really wish you and your family all the very best for your journey.

    Ps the patient experience team are amazing as well so I can really recommend speaking to them
  • Hello Sam

    Welcome to the forum and thanks for sharing your experience with us.

    It sounds that you are doing all the right things and that your dad has some wonderful support from his family. That is really important for him so he can concentrate on getting better.

    I had a transplant some 3 years ago now when I had bone marrow failure, I had no symptoms and was working 2 weeks before transplant. I have 3 grown up children and just like your dad I was always available for them, it might be a bit of DIY or a phone call for a some advice. Suddenly I was no longer there for them but like you they took charge, making sure I didn't worry about who was cutting the lawn or was my car okay, would my wife get home from hospital in the evening after being there all day. Between them they took control so that all I had to try and concentrate on was getting better after a week of chemo and then transplant and in total a month in isolation.

    Transplant was a success for me, lots of ups and down along the way but it was the only cure. I will be more than happy to share any of my experiences with you or your dad so do keep in touch. We are here to help each other and to offer support.

    I agree with LolaB, the Anthony Nolan Patient team are very helpful and you can give them a ring anytime for advice or just a chat, I know them and they are very kind, they also have lots of information which they could send you.

    Good luck and best wishes.

    Peter
  • Hi Sam and thanks for sharing your story.

    I think it's a story that is echoed similarly in all families affected by blood cancers and similar illnesses.

    The support that can be gained within the family unit is immense and persnally I think has a great bearing on the ultimate success of treatment. It's easier to recover knowing that you have the support of your family around you and I'm sure that will be the case for your dad.

    He will no doubt feel low at times as he suffers knocks and setbacks during his treatment and losing his mum part way through will not have helped. It's impoartant that you and the other family members carry on supporting him and encouraging him, and reassure him that he will get through this eventually.

    Your method of sharing things through Facebook is a great idea, as it helps to keep those who are not in direct contact updated and allows them to post messages of support back to him. I did the same during my treatment when I felt up to it and also wrote a blog, so that friends and colleagues could get an update as to what was happening and how I felt. It saves having to field numerous phone calls and emails for your dad and those in regular contact.

    This forum is testament to the success these treatments now bring as many of us are successful transplantees who have gone through the treatment and come out the other side. Please encourage him to have a look through the posts even if he doesn't want to post himself, as he may draw some comfort from seeing that he is by no means alone.

    Thanks again for sharing your thoughts and please do keep us updated with your dads progress or ask if you have any questions. The chances are somebody will have gone through similar experiences and may have advice to share.

    All the best to your dad, you and your family, and good luck!

    Steve
  • Hi Sam

    I hope your Dad,you and your family are doing well.

    I am a 49 year old man who was diagnosed with a blood cancer in October 2013 and had a Bone Marrow Transplant in March 2014.

    It is a very scary time for all of you. People cope with it in different ways and there is no right or wrong way. Always remember and I am sure everyone on here would agree your Dad just wants to act and be treated like he has always been.

    I have two children aged 22 & 17. At the time my daughter was in her final year of university and my son was sitting his GCSE's. The thing for me through the ups and downs of the whole BMT was I didn't want it to effect them. I wanted them to live their lives as near normal as possible That meant an awful lot to me.

    I can totally symphysis with your Dad on many levels especially with losing his mum during what he is going through. I lost my sister who I was very close too while in hospital having my BMT and I was not able to attend her funeral which was very hard.

    I would like to try and ensure you a BMT can go very well with little side effects. The accutual stem cell infusion is a little bit of an anti-climax. It's now 18 months since I had my BMT I am working full time, friends and family say I am looking as heathy as I ever had and I went on my first holiday abroad last week.

    If there is one bit of advice I would like to pass to your dad is stay positive what ever he is going through. He will have some lows but the power of the mind is a phenomenal thing.

    I live in Suffolk which I am guessing is not to far from you as he is attending Addenbrooks. If he would like to discuss anything whatever he wants I would be MORE than happy too. I would love to be able to give back a little of the help I received. I will promise it will only be truthful and positive.

    You must stay positive too. Remember I am sure he will want you to be living a normal and forefeeled life and that will make him happy.

    I am sure everything will be fine.

    David
  • Hello everyone.

    Thank you so much for your comments and well wishes and apologies for taking time in replying to you all.

    We finally had my Nan's funeral today after having to wait a few weeks due to some complications. Its been a long and emotional day particularly for Dad. A week ago I don't think Dad would have made it through the whole afternoon. Thankfully he was feeling much better in the last week so made it through the whole day including the gathering afterwards. In so many ways today has been difficult but in others it has been just what he needed. He got to say a final goodbye to his 97yo Mum with his whole family around him and see many family members he doesn't see often. I got to read a poem as well and encouraged everyone to vote for Daniel O'Donnell on Saturday's Strictly as he was Nan's favourite singer which made everyone laugh a little. At the gathering it was good to see him talking to people and explaining what is happening to him. He got to catch up with people and he was laughing, smiling amongst the crying too.

    This week I signed up to the Anthony Nolan donor register. I completed my Spit Kit at work and found out my colleague Lorna had also recently signed up too. The kit came with 2 tea bags in a package that said Share That Warm Feeling, so I shared my tea with Lorna. She signed up to the register after a friend of hers had lost their Anthony Nolan wristband which he wore to support his Mum. She signed up to make him feel better about losing his wristband. A lost wristband = a gained donor is what she told him which I thought was just such an inspiring event. I posted it on my Facebook page and encouraged all of my friends world wide to sign up too and at least 3 people have done so far as well. I'm so overwhelmed by the support and kind messages from everyone its hard to process or find ways to say thank you.

    www.facebook.com/samuelbiscoe

    LolaB thank you for your message of support and encouragement. Its good to know that the patient experience team have been helpful. Have you had a date confirmed yet for your transplant? I really hope that you are doing well. By the sounds of it you have a supportive and caring family just like mine. Keep your strength up and stay positive.

    Peter thank you to you as well for your message and sharing you story. I still struggle to come to terms with Dad being so well before finding out and now he is battling this. Its comforting to hear that other people have been the same and have resumed a normal lifestyle.

    David I am pleased to have found the forums and be able to express and share my feelings with everyone here, so thank you for your message. Hopefully now that the funeral has happened it will give him the strength to be focused on his treatment and coming home to us after. Thank you for your support.

    Steve we are actually from Ipswich! Dad has been having his initial treatments at Ipswich Hospital. Can't tell you how pleased I am to hear that you have come through the other side of your treatment and you're now fighting fit and able to go on holiday. Sorry for the loss of your sister, obviously I can relate to the tough time you must have been going through then.
  • Hi Sam

    I live in Ipswich too and under Dr Hodson at Ipswich Hospital, as I offered before would love to help your dad if he fancys a chat via email/text or over a beer. Sometimes it's nice to chat to someone who truly understands what you are going through. As I said before it will only be truthful and positive.

    David
  • David that sounds like a really nice idea, perhaps you can send me an email?

    samuelbiscoe@hotmail.co.uk
  • I finally got my email today from the Trust saying that I have been accepted on to the donor register! I'm so proud to be able to even be on the register. I really hope that some day I will be able to help someone as much as other people before me have!! :D

    Dad is hopefully being admitted to Addenbrookes tomorrow after his initial date was delayed by 2 weeks. As frustrating as that was for us all, especially Dad, I think it has taught us to be a little more cautious in our optimism until he is actually assigned a bed. We have an appointment tomorrow morning at the day clinic and Dad will be getting his Hicman line fitted as well though it's still not confirmed that he will be getting a bed as of yet (which seems a little odd to me) but nonetheless it must be close to finally happening or they wouldn't want to put in the line!

    Hopefully we can get the treatment started so hat he can be home for Christmas

  • Hi Sam

    Well done you, you should rightly feel proud. I met my donor this time last year and he kept thanking me for giving him an amazing experience, he was so pleased to have been able to help. That young man saved my life, I hope you get the same opportunity one day.

    I hope all is going well for your dad, don't worry about the Hickman line he will get used to it. You will all feel better once the treatment gets underway.

    Keep in touch and let us know how you're dad is doing.

    Best wishes, Peter.

  • Dad is now in Addenbrookes. He received his blood stem cell transplant on Thursday last week and hes doing well. The consultant seems to be pleased with everything so far. He mentioned that the donor is the same blood type so his match is really good and that everything is as expected.

    Just now he is feeling rather bored and isolated. Its difficult because he also doesnt want to focus on anything because he just feels ****. We've tried to bring him things to help him feel better but nothing seems to spark an interest. Hopefully in a few days that will pass and he will begin to gain some energy. I've been making the drive as much as possible around work to at least keep him company a bit.

    I had a good chat with Jon from Anthony Nolan today as well who is writing a blog spot on Dad's story. I'm looking forward to being able to share our experience, hopefully it will help someone out there or inspire :)
  • Hi Sam

    This is good news you are sharing, to hear your dad has had his transplant and with a good match too.

    These are really very early days and we have all felt the way he feels at the moment. He probably wont feel like doing anything and it is enough to just catch up on rest. Its great that you can keep up the visits, it does help even though the conversations will probably be one sided.

    I'm sure he will soon start to feel better, once his blood counts start to improve he will realise things are getting better. At the moment its all about being a patient patient!

    Will look forward to his blog.

    Give him our best wishes and keep us updated.

    Peter

  • Hi Sam,

    That's great news that your dad has had his transplant. I guess in these early days he is not feeling too well at all and I remember how tough those early days are. He will hopefully feel better and raise his spirits when he sees his counts start to rise which is a sign that the new cells are engrafting. I know it came as a great relief to me though I perhaps didn't appreciate the length of time it would take to get back to a normal level of fitness.

    It's a case of biding his time and being patient, trying not to get frustrated and to remain positive. It's good that you are getting to see him as much as you can but I do remember times when I felt unwell and didn't necessarily want to see anyone, so keep an eye on things and don't feel rejected if he's not too welcoming. I guess we all felt like that at some time and I remember the feeling well and became very irritable at times.

    He will start to pick up as the effects of the pre-transplant chemo wear off and his new cells settle into their new home, but it does take time. Peters advice of being a patient patient is spot on and your dads support network need to help him be that.

    Please let him know we're following his progress and pass on our best wishes for a trouble free recovery.

    All the best to you and your dad,

    Steve
  • Hello again everyone,

    I thought that it was time for a bit of an update!

    Dad has now been discharged from Addenbrookes and only has to attend day clinic 2-3 times a week. Its such a relief to have him at home. Having Mum drive all the way to Cambridge everyday had me worrying, especially at this time of year when the roads aren't so good.

    In the last update I mentioned I had an interview with Jon from the charity about a blog spot. It was shared through the Anthony Nolan Patients and Family Facebook page (Like if you haven't done already!) and there was a really great response to it. It was so great to see the comments on the post and the support from everyone! Its just great!

    Unfortunately in between the last time I posted and now my Grandma (Mum's Mum) has also been in hospital too! (Honestly is there no let up?!) Thankfully the doctors were able to do a small procedure to remove a blockage in her biliary duct. The doctors said it was the biggest they'd every seen! She's now staying with my Aunt and Uncle over Christmas, so its a relief that someone wil be keeping an etye on her for a few weeks while she gets well again

    Dad is still feeling a bit rough from the transplant. He's improving everyday but still struggling with eating. He is slowly putting on weight now. The Doctors are pleased with all his results from the day clinics he's been attending. He's been given some extra drugs to combat childhood diseases. I didn't really give it any thought but of course, all the vaccines that he would have had as a child are now totally void!
    Hes been enjoying some time on the couch and catching up with Strictly Come Dancing and all the TV hes missed while he was in hospital. Just so happy that he's at home for Christmas!

    You'll see also that I've started another thread.

    http://www.anthonynolan.org/patients-and-families/anthony-nolan-transplant-community#/discussion/188/anthony-nolan-live-a-charity-concert

    I'm putting together a charity concert to raise funds for Anthony Nolan. It will be a a variety performance and the aim is to raise in the region of £3000+! Please have a read through the post and message me if you think you can help!


    Wishing you all the happiest Christmas!

    Sam :)
  • Hi Sam

    Thanks for the updates, good news about your dad being home especially at this time of year.

    Your dad is bound to feel rough and will do for some time, patience is the key word, as for eating I found it good to eat little and more often than the normal meal times. It's a good time of the year to indulge and eat lots of goodies, I used to look forward to a couple of friends coming around with homemade cakes and biscuits.

    Re the vaccines, I started to have my childhood ones about a year after transplant and over a period of several months. I only recently completed them with the MMR jab. I'm sure your docs will keep an eye on the right time for your dad. Do make sure that any signs of a temperature or of feeling unwell are seen to straight away, if your dad should pick up an infection like a cold or flu, the quicker it is dealt with the better for him especially over these first few months.

    Well done to you for the work you are putting in to raise funds for Anthony Nolan, it sounds like it is going to a big success.

    Hope your dad continues to make steady progress, keep us updated.

    Happy Christmas to you all.

    Peter
  • That's great that your dad is home and starting to pick up a little Sam. Coming home after the transplant is a big boost to patients but the recovery afterwards can feel very slow so hopefully you can keep his spirits up.

    It's good that he's managing to eat and great that he's regaining some weight. That was a big battle for me and it was a long time until I felt able to eat properly. Hopefully your dad is managing to eat enough to continue to gain weight and regain stome strength too.

    AS far as the vaccines are concerned I'm still going through the process of having mine, almost 3 years after my transplant, and have so far had the first 2 sets of jabs. My vaccinations were delayed from starting due to a prolonged period of medication because of GvHD. I only came off Ciclosporin and steroids in summer this year and I don't think they could start the vaccines whilst I was still mildly immuno suppressed.

    I hope your dads recovery continues smoothly and wish you luck with your concert which sounds like a brilliant idea.

    All the best to you and your family for Christmas and please keep us updated next year.

    Steve
  • Time for an update...

    Hello everyone!

    It's been a while since I last posted in the forums - my apologies! I've been manically busy and neglected you all.

    Since we last spoke Dad is doing well now and has been very fortunate while in recovery. He still gets tried easily but he's happy enough. He visited his work a couple of days ago and spent 2 hours there chatting to everyone. He secretly enjoyed all the attention and I also think it out his mind to rest about needing to get back to work. He was getting anxious that the new Directors would be unsympathetic! Of course they said to take his time and do as much or as little as he needed for when he starts to come back to work. It was such a boost for his morale being able to talk to them. I'm sure they loved having him too (a few people asked for him to PLEASE come back! Haha!)

    It's likely Dad will need a 'cell top-up' from his donor as his T-cell levels aren't doing as well as they had expected. Apparently this is fairly common and it's know that people have had up to 5 in the past. The consultants were very reassuring but it's still a little disappointing. But no more chemo or any of the nasty stuff!

    He's got a decent head of hair on him not and even had a haircut this week!

    I can't tell you how thankful I am to my Dad's donor. A 38 year old man from London. Whoever you are, I wish I could tell you that you're a lifesaver and just from spitting in a tube, you've done so much! Perhaps some day I will be able to say that in person.

    On to more news...

    At the New Wolsey Theatre in Ipswich this Sunday 22 May, I'm producing a charity concert which I mentioned earlier!

    Well we raised the bar a bit and the target is now £10,000! We're almost there and currently have about 80% of that! It's been such a pleasure to oragnise and put together and have recieved so much support from friends, families and strangers!

    It's really going to be an amazing night! It's hosted by HIgh Porifle Anthony Nolan Supporter and BBC Presenter Joe Crowley.
    The concert will fetaure Stars in their Eyes winner Tracey Shield, American Comedian Kimmy Harrison (she's literally flying in for the day and using all her frequent flyer miles!), vintage acapella group The Testostatones, international aerial artist Daisy Black and so much more!

    We will also be auctioning off a signed Ipswich Town FC Portman Road street sign and a Helicopter Flight Over London for 3 people!

    Also the lovely Craig Wills, community fundraiser at Anthony Nolan will be talking to Joe on stage about the important work the charity does!

    If you can make it, it's this Sunday, May 22nd at the New Wolsey Theatre in Ipswich @ 7:00pm. More info on the concert's website: www.leukemiaconcert.co.uk

    Or book online:

    www.wolseytheatre.co.uk/shows/anthony-nolan-live

    There's so many people to thank as so many people have been amazing at offering support! But the person I'd really like to thank is my Dad! Without him it wouldn't be happening and we wouldn't be raising money for Anthony Nolan.

    Much Love!

    Sam :)
  • Hi Sam,

    That's good news on your dad and I'm glad to hear he's doing well without too many complications. I think getting tired quicker is something we all notice but it's just a case of adjusting to the new you. It sounds like his workplace have been very supportive and it will be a big milestone s=to start back at work again, even if it's easing himself in slowly, which I'd recommend he does, rather than expecting to go straight back at full pace.

    I've read recently about a few patients who've had 'top ups' to help their cell counts increase, though it's not something I had to have myself. Hopefully it is straightforward and does the trick to give your dads cells a boost.

    Very well done on the concert and the fundraising that you've done so far is great and I'm sure will go a long way to help Anthony Nolan continue doing what they do so well.

    I spent a day with Joe Crowley last year when he filmed an article on my familys history for Countryfile. We had a long discussion about Anthony Nolan between filming when I told him I'd had a stem cell transplant from an unrelated donor thanks to Anthony Nolan. I think he's done a few events in the past in support of Anthony Nolan and is a really nice guy to speak to and very understanding.

    All the best with the concert and I hope it is a great success. Please give us a report next week after the fun of the weekend and let us know how it went.

    All the best,

    Steve
  • Hi Sam

    My name is Hayley and I am the new Anthony Nolan nurse specialist based in the patient experience team.My role here is to offer additional advice and support to patients and families who have been affected by blood cancer and stem cell transplant. I will be working 3 days a week in the office.

    This is great news that your dad is doing so well. I have read through your past blogs and it seems that your dad has had a lot of the normal post transplant experiences with some of them not being that easy. Clearly the support and love that he has received from you, your mum and sister has got him through. Going back to work is often an important goal in getting back to normality so I am sure the visit will encourage him to keep going.

    The cell 'top up' although disappointing for you all is very normal and is required to give the immune system a bit of a kick start. It is usually very successful and is a simple procedure that can all be done as an outpatient.

    I have been working with patients and their families pre and post transplant for over 13years and I am always inspired, not just by the strength of patients and their families but also the fact that with everything you all have to deal with you still make time to organise events such as your concert.

    I hope it all goes well and keep us updated on your dads progress, if you ever have any questions please feel free to contact me.

    Best wishes
    Hayley
  • Hi Sam

    Very pleased to hear of your dad's positive progress and it must be encouraging to be thinking about returning to work too. I'm sure that will be a big step forward for him.

    Tiredness or fatigue is what most of us experience so I think it's normal. Next week is the fourth anniversary of my successful transplant and I still suffer fatigue but I am able to do most things about the house and garden, takes breaks away, go walking and enjoy a social life, I have learn't do do things a bit slower!

    It does sound that the cell top up is a routine procedure and that afterwards he will continue to make a full recovery. He has had great support along the way.

    Thanks for the update, tell your dad to keep in touch.

    Good luck for the event next week I'm sure it will be a big success.

    Best wishes

    Peter

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