My Journey - Jayne

Please post here your experiences of MDS as a patient, carer, family or friend

Moderator: Steering Committee

Post Reply
Jayne
Posts: 194
Joined: 16 May 2011 11:33
Contact:

My Journey - Jayne

Post by Jayne » 21 Jan 2012 18:21

Dear All

Well I think what I am about to tell you all will be a big shock.

I went for the results of my bone marrow biopsy on Wednesday. Within a week (and I know a lot of you find this surprising), they had analysed my bone marrow and cytogenetics.

The bad news is that the amount of leukaemic cells circulating in my blood stream has increased and we need to act quickly.

They did want me to go into hospital on 6th February but I have asked if I can have half term at home. So, w/c 20th February I will go in for a Hickman line fitting and then within a couple of days I will be admitted to start agressive chemo.

I will be in hospital for 4 - 6 weeks. I will have my own room and bathroom and clean air circulating. I will then come home for about 2 weeks before going back in for a 2nd round of chemo, again for 4 - 6 weeks.

I will then come home for about a month before going back in again for my stem cell transplant. This will mean more chemo first to kill my bone marrow completely (he did say completely, but I need to check this). I will then have my stem cell transplant. It will take me 12 -15 months to feel better.

I had a further transfusion yesterday, just 2 units as this will help me make the most of the next 4 weeks.

I have spoken to work and I am not going in. I think I have better things to spend my next 4 weeks doing! Although I am going to go in for the odd half day as I want to leave everything straight and organised and sort my desk drawers!! Initially I will be on sick leave, luckily my sick period starts again in April (4 months).

The really odd thing is that I feel fine! I look fine! We've been shopping this aft for paint as we have our decorator coming on Monday (already planned before we knew about this) to paint the hall, stairs and landing and Martin is going to paint our bedroom and get it nice and clean.....not that is dirty but it doesn't halm to move the bed every now and then!!!

Martin is going to subscribe to this forum and will update you all on this 'topic', hence why I have titled it as my journey! However, that is 4 weeks away.

I have soooo many people who want to come and see me I think the next 4 weeks will fly by.

Matt and Jess are obviously in shock but they are coping remarkably well. I suspect as the date gets closer it's all going to get a lot harder. I received the most beautiful letter today from their headteacher. It was on beautiful paper in a pink evelope and written with a pink pen!! It made tears roll down my face when I read it, mainly when she said that they will take good care of my babies. It's so nice to receive a hand written letter, I must remember that and start writing nice letters to my friends and family when I am in hospital.

Anyway, I am ok. It all feels quite surreal because I just dont feel ill. I've got to go and buy loads of pj's! My friend gave me her leopard print babygro on Thursday night (her Mum bought it her for Christmas but she said she really wanted me to have it). She made me put it on there and then and drive home in it, lol!! I will look silly but hopefully that will help to lighten the mood.

Anyway, I need to go and cook tea. Dont feel too sad, I feel positive and I will fight this bloody awful disease and I will be well, it's just going to take a bit longer.

Take care all.
Love Jayne x
Jayne
Feb 2011 MDS RCMD. Jan 2012 RAEB.
Feb 2012 - 2 lots of chemo each 4-6 weeks in hospital to destroy leukaemic cells resulting in remission from AML.
July 6 2012 - Stem cell transplant
Doing very well, feel great
Age 43.
Sheldon

Re: My Journey - Jayne

Post by Sheldon » 22 Jan 2012 01:31

Oh my gosh, Jayne just keep up the strong atitude.
I am in and out of the private rooms of patients every day and the worst thing is bordom and isolation, so make sure you have books, newspapers, a dvd player and a great stack of movies. My favorits are the old rom coms from the 80s eg Sleaples in seatle, when Sally met Harry etc. (By the way if you do watch "when Harry met Sally" look out for the famous restaurant scene, my name is Sheldon Gordon. You will get the joke when you watch it"). Get yourself a lap top with an internet conection, its important not to let the bordom get to you.
just enjoy the next few weeks of normality.
I want to give you news and hapenings from this end, but their is just not anything going on. how boring.

All our love and best wishes
Sheldon
Sarah Reakes
Posts: 76
Joined: 11 Aug 2011 17:51
Contact:

Re: My Journey - Jayne

Post by Sarah Reakes » 22 Jan 2012 12:18

My Dear Jayne,

Yes, indeed your news has come as such a shock. It is some comfort however to think that your medical team are on the case and they are working toward a solution albeit that it's going to be as you say quite 'a journey'. It is during times like this that you do appreciate the love and kindness that is shown you and your family, and yes it can be an emotional time just to experience this, but that 'love blanket' and the power of hope and prayer I'm sure will help you and your family through this journey.

I think what makes this disease of ours so difficult to understand is that it comes in so many guises and as you say, when you are feeling otherwise fine, it does make it difficult to comprehend. With the support of your family and friends, your positive spirit will I am sure see you through. Just remember not to try too hard to be strong for everyone else!

As I had posted previously, we are off to Ibiza (not for the clubbing needless to say) on 26th January returning on 5th February to sort out our apartment, and I will catch up with you when I return. Needless to say I shall be thinking of you and I really am sorry that you have had this news. When you are through this journey and you are feeling your old self again, you and your family may like to use our apartment in Ibiza as a bit of a pick me up. It is a lovely spot overlooking the sea with breathtaking views across to the hills, and it never ceases to inspire us.

Take care

Love Sarah x
Aged 62. Diagnosed with MDS 5q-, June 2011 & been on Wait and Watch regime On 25/11/14 told disease had progressed to High Risk with 15-20% blasts. Starting Intense Chemotherapy on 20/1/15 prior to SCT. Live in Yatton near Bristol/Clevedon.
david
Posts: 20
Joined: 19 Nov 2010 15:58
Contact:

Re: My Journey - Jayne

Post by david » 22 Jan 2012 15:09

Hi Jayne

You are shortly starting a long and difficult journey and seem to be facing it with remarkable courage and I hope at the end of it you will have achieved a cure.

You might find a Kindle extremely useful able to hold loads of books and light and easy to handle or an iPad with plenty of games to while away the hours and with access to the world.

I will follow Martin's postings and wish you all the best

David
David
Age 75 West Yorkshire
Diagnosed Nov 09 - RCMD since progressed to RAEB but now in remission following treatment with Azacitidine
Jayne
Posts: 194
Joined: 16 May 2011 11:33
Contact:

Re: My Journey - Jayne

Post by Jayne » 22 Jan 2012 20:27

Hi All

Thank you for your replies, you really all are wonderful and very kind.

Firstly, Sarah - your reply and offer to use your apartment really rouched me (actually it made me cry a bit!). You are so right that it is the love and support you receive from your friends and family that keep you strong. I feel overwhelmed at times. Your offer is so very kind and we would love to take you up on it, I can picture it. I do love the sea and I think it is important to have lots of positive visions of the future, especially when times may be a bit challenging. Your apartment is now one of my visions. Thank you.

I would like lots of tips regarding what to take into hospital. I will be watching plenty of movies! I too like the films from the 80's....I must add Pretty Woman and Dirty Dancing!! Titanic makes me cry so I wont take that, I want things that warm the cockles of my heart or make me laugh.

My husband bought me a kindle at Christmas (in preparation of being in hospital). I love it!!

I've also got my music. I lurve music and singing (I cant sing but I do insist on singing at the top of my voice, lol ---- I think the hospital are going to wonder what's hit them when I arrive).

I'm going to buy a digital photo frame. My Mum paints and is going to paint me a vase of flowers. I'm also doing a collage of photos in one of those snap frames and my friend Lisa is doing a hand line drawing of a couple of my favorite photos!

I have one important thing to say and that is my son, Matt and my nephew Dean are doing a skydive in April. The justgiving charity page is

http://www.justgiving.com/MattandDean

If you would like to pass this link amongst your friends we will raise money for 3 fantastic charities: Anthony Nolan, Leukaemia and Lymphoma Research and the UK MDS Patient Support Group.

Anyway, thank you all.

Love Jayne
xxxxxxxxxx
Jayne
Feb 2011 MDS RCMD. Jan 2012 RAEB.
Feb 2012 - 2 lots of chemo each 4-6 weeks in hospital to destroy leukaemic cells resulting in remission from AML.
July 6 2012 - Stem cell transplant
Doing very well, feel great
Age 43.
Bronte

Re: My Journey - Jayne

Post by Bronte » 23 Jan 2012 11:16

Dear Jayne,
Just to say we will all be thinking of you and I am sure that the positive energy from your friends and family will be a great comfort and source of strength.
I don't know which hospital you will be attending , but why not check out if they have a WI FI facility. My friend spent some time in St Marks and she was able to take her laptop, which meant she could email and use SKPE, to keep in touch with her kids. She said her IPOD was brilliant because she could fall asleep listening to Harry Potter and it blocked the background noise out.On the practical side : wet wipes / nibbles / soft dressing gown / plenty PJ's / own pillow / pix of family and friends.
We made sure to operate a round robin on updates, to save her husband making loads of calls We cooked meals for her husband and kids which they could heat up. I preferred to help with the cleaning, as he is a brilliant cook.
She said it made her feel so much better knowing we were all willing her to get well and certainly she wasn't going to give in.

Stay strong, love to you all

Bronte
david
Posts: 20
Joined: 19 Nov 2010 15:58
Contact:

Re: My Journey - Jayne

Post by david » 23 Jan 2012 11:45

Hi again Jayne

I was feeling a bit low last night but as I went to bed checked the forum. And there despite all your own traumas you had taken the time to send me a message of encouragement - shamed me to think I'd been feeling sorry for myself. Thanks for that boost.

I live in Huddersfield and see Dr Rothwell at the Infirmary there but she does liaise closely with Prof. Bowen and I know she has discussed my treatment with him. In fact I think they have regular case conferences in Leeds so I get some of the benefit without the travel.

You must have quite a journey if all your treatment is in Leeds. I sometimes think you have to be pretty fit to be poorly and cope with all the stress of travel, parking, waiting etc. But then all the Doctors and Nurses who have treated me have been super.

It will be quite hard for your husband and children trying to cope with everyday life and fitting in hospital visits and all the time worrying about you. I think it's as hard for them as us - they travel this journey with us, there to support us when we need them but have to suffer in silence alongside us.

Again thanks and best wishes

David
David
Age 75 West Yorkshire
Diagnosed Nov 09 - RCMD since progressed to RAEB but now in remission following treatment with Azacitidine
chris
Posts: 640
Joined: 01 Dec 2009 21:52
Location: Essex
Contact:

Re: My Journey - Jayne

Post by chris » 23 Jan 2012 12:50

Dear Jayne

I had been thinking so much about you and the outcome of your appointment on the 18th but absolutely I did not expect to read what you wrote about and what is in store for you. Such a shock to hear this as to all intents and purposes you had a low-risk type and were dealing very well with it and feeling energetic and healthy - up until quite recently. I had no idea that you had any leukaemic cells (does this mean this blasts?) previously as you had not mentioned this?

From what I have learned about you on this Forum (and isn't it strange how involved and concerned we can become, having never met!!), I know that you are resilient, pro-active and determined and that is going to stand you in good stead in the difficult times ahead. Martin will have to be your gatekeeper and handgel policeman and keep away anybody who might have any infection. A lady I spoke to whose husband had had a stem cell transplant, said she even changed her outdoor clothes when visiting her husband and left all her street clothes outside his room. She also brought him freshly laundered pyjamas every day - so that leopard print "onesy" (as my daughter calls them!) will be well-used! It will be hard on your family, particularly Martin so I hope that there is a good support network for him, too? We will all look forward to his updates but appreciate that he is going to be very stretched at times and he might wonder why he is posting this to complete strangers!!! You might be able to set up and post on your own blog if you feel up to it?

Lots of great practical tips already given. That was a great and kind offer from Sarah and something you can visualise as an aim for the future. It will be all about your comfort, avoiding boredom and your safety and well-being. Hopefully, there will be wi-fi so you can stay in touch with friends at a safe distance! If you want an easy read and a laugh, try The Tent, the Bucket and Me by Emma Kennedy - download on your Kindle. It made me howl with laughter but maybe only if you have experienced the "joy" of family camping holidays??!! Also a trilogy of books called The Hunger Games - futuristic and intended for a young adult audience but very easy read,absorbing and, anyway, it probably isn't the best time to embark on War and Peace!!! Audio books might also be a good idea as, when you are ill, even reading can be a bit of an effort.

Will you be in Leeds? Are there practical difficulties to that re travel and visiting?

We are all thinking of you and sending positive thoughts for you to come out of this fit and well and with a cure. You are really inspirational and have made your mark on this Forum so I hope the hospital know what's coming!!!I'm sure the time until half-term will fly by.

Very best wishes

Chris
x

PS Sorry for delay in replying but my 32-year old son broke his collarbone on a holiday to Iceland and he is now with us at home for convalescing as his partner cannot take any more time off work and he needs a lot of TLC. So Mum and Dad to the rescue. What a benefit of retirement to be able to just drop everything and go up to London and whisk him home!!
Chris. (F) Age 69 (2019). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
janetstanford
Posts: 335
Joined: 01 Nov 2010 17:54
Contact:

Re: My Journey - Jayne

Post by janetstanford » 23 Jan 2012 16:07

Hello Jayne
I was not expecting this to be the out come of you bi-op i was shocked and to be honest have read it a few times before i felt able to reply i am sorry
the others have given some really good ideas to help you cope and the offer from Sarah is amazing so kind and it would give your something to look forward to and aim for
It is amazing at the kindness of people when you find yourself in this and similar situations when i was ill so many helped me through the hard times could not have done it without them
it is good that Martin will keep us up to date maybe an e-mail account so we could send you messages to keep you amused and relieve the boredom a little
and your question *destroy all of your marrow the answer is yes they have to i have been told this when i have discussed this with both nurse and doctor
i do wish you well and sure we will hear from you soon take care and enjoy these next few weeks Janet :)
Sarah Reakes
Posts: 76
Joined: 11 Aug 2011 17:51
Contact:

Re: My Journey - Jayne

Post by Sarah Reakes » 23 Jan 2012 16:41

Hi again Jane,

So pleased you are up for using our apartment in San Antonio, Ibiza, when the time is right. To help you to visualise it, perhaps you could email me on my email address of sarah@sarahreakes.plus.com with the details of your email address and home address and I will try and send you some pictures of the apartment and the amazing view it has. No urgency as we are getting all packed up to go off this week, but if you could drop me a note before we get back on 5th February and in the meantime we will take some more up to date photos whilst we're out there. Just to give you a brief description: It is a two double bedroom apartment (one with a double bed and the other with twin single beds) both with air con, so will sleep four comfortably and you could possibly cater for slightly more if you have youngsters prepared to sleep on lye-lows. Bathroom with shower over the bath. It has a good sized lounge with american style kitchen and balcony overlooking the sea. It has uninterrupted views across the bay to the hills beyond, and is referred to as a front-line location so there are absolutely no other properties to spoil the view, just below are the large communal swimming pools (adults and children's pool) and a public promenade where people walk down to see the sunset at the Cafe del Mar, and Mambo, which are world famous for being the 'in' places to enjoy the music and general cool atmosphere, which is just a five to ten minute walk away. In high season they often have fire eaters and such like performing on the beach in front of the cafes. Even at our age, we can appreciate the attraction, and our children certainly think it's great - they are about your age, perhaps a bit older.

Just to fill you in as to how we ended up buying a place in Ibiza, we set sail from Bristol in June 1998 in our 10 mtr catamaran (twin hulled sailing boat) called 'Whistling Rufus' (my husband is a jazz fan hence the name) on a long term sailing cruise taking in the coasts of Wales, Ireland, Scilly Isles, France, Portugal, and Spain and arrived in Ibiza in July 1999 where we had to leave her to return home as Simon's Mum was unwell. We had to end our sailing trip at this time but we immediately fell in love with Ibiza and decided to keep WR there and used her as a holiday base until we finally sold her in 2006 - we had some amazing holidays on her and it's a wonderful way to explore the island. Because we liked the place so much, we bought the apartment in 2003 as we knew that we wouldn't be able to keep the boat forever (we were starting to find all the maintenance on the boat which we did ourselves was starting to take its toll) and we didn't want at that time to give up Ibiza as it is such a magical place.

Back in 2008 we decided we wanted to have dogs again and as we didn't feel it was fair to have to put them in kennels too often so we made the decision that we would try and sell the apartment but unfortunately the property market fell and so we decided to let the apartment out on long term lets and this ended last October but unfortunately this has turned out not to have been so successful one way and another. Luckily we have a dear friend in San Antonio (a former boat owner) who has come to the rescue and spent many many hours returning our apartment back to the condition it used to be in and so this trip is the first time we have been back since September 2008 and so we really are looking forward to seeing the place again and meeting up with old friends.

Anyway I just thought I'd give you a bit of background.

Just remember that you are very much in everyone's hearts and minds and yes, it is good to have lots and lots of things to focus on, to keep you going through this 'journey'. The many suggestions made in the postings to you of ways of dealing with your prolonged stays are spot on, and certainly the use of all the technological gadgets we now have at our disposal will help no end. I had a kindle for my birthday last year and I bought Simon an iPad for his birthday, and a couple of years ago we moved over to using an iPod for all our music, and they have all made such a difference to the way we live, that I don't know how we managed without them.

Take care now and love to you and your family, and look forward to hearing from you when we get back.

Love Sarah x
Aged 62. Diagnosed with MDS 5q-, June 2011 & been on Wait and Watch regime On 25/11/14 told disease had progressed to High Risk with 15-20% blasts. Starting Intense Chemotherapy on 20/1/15 prior to SCT. Live in Yatton near Bristol/Clevedon.
Post Reply

Who is online

Users browsing this forum: No registered users and 1 guest