It looks like me in the mirror!

Friday afternoon at home, woken up by the doorbell, parcel delivered........my new wig!  Rushed upstairs, very excited and put it on and felt like putting makeup on for the first time in weeks.  It was me in the mirror.  Love Roz

Hoorah - a short break at home

Roz is out for ten days or so. In some cases with MDS, we learn, they give you a second full bout of chemo prior to the transplant (which itself is preceded by a 'conditioning' bout of chemo). She does have to go back for a day for another bone marrow biopsy on Monday.

We took a taxi from Kings Hospital to Paddington to keep the exposure to other people to a minimum and then had breakfast in Starbucks. I kept explaining what these strange things around her were - the sky, people, cars, etc - remember that she had been in hospital for weeks, in a room with a blocked up window

When we got back, she went to pick up the children who had not been told - so it was a lovely surprise. They were delighted, and we had a few tears of joy.

Regards Richard

PS I had more blood taken from me last week to try and get my iron count down. I must ask if they can numb the arm before they take it as the needle is a bit big

Hopefully I will be out in a day or two - and the children came to visit

Hi all

Things are looking up, the doctors have said my bloods are going up and I should be able to go home this week. I will look rather different as my hair is only ½cm long and thin all over but at least I am not completely bald! I have a wig on order, got the nearest thing to my normal mad colour but no curls, so it looks like I have got hair straighteners. Not much else to say other than I will be back in hospital in a couple of weeks to potentially go through this all again before my last lot of chemo with the transplant itself, just hope my plan to be home by Christmas still happens.

One of the best things about today was that I am off the antibiotic drugs - these take three hours twice a day. So take lots of books or watch the TV / DVDs

Being able to leave is because my neutrophils have improved from .001 (ie non existent) up to .3 today (Hooray). When I came in they were at .8, but were wiped out by the chemo, so my bone marrow has been working hard to re-create them. I think the magic number to be dis-charged is .5

The other thing that cheered me up was that Alex and Isabel came to visit on Saturday and Sunday - we had to meet in the lounge area near the main ward door, as they are not allowed near the individual rooms or other patients

Picture shows them a couple of weeks before on the farm

See you all soon, I hope.


Regards
Roz



Sent from Roz, using Dad's account

Well the hair got shorter again

Hi all

Well the hair got shorter again yesterday, mum cut it so it is now about 3or4cm long. It is going very thin in places as loads of it is falling out now. Not long before it will all be gone I think! Luckily my mum says I have a nice shaped head. (The top image is today, lower one is two weeks ago)

I had my weekly outing to x-ray this morning. I still feel a bit of a fraud in a wheelchair and I could do with a walk but hay ho. I am still getting the occasional temperature so I am on loads of anti-biotics, one takes 3 hours on a drip!!!

The children still seem to be coping very well. I have sent them some drawings and I got one back from Isabel all beautifully coloured in, now stuck on my wall along with the banksy card Karen gave me for my birthday(it makes me laugh as it is the star wars one saying ‘…I am your father’).

My embroidery is growing, not sure what it is yet but definitely influenced in shape and colour by Kandinsky.

Not much else to say other than I really appreciate all the emails with silly little bits of information about normal life outside.   

Regards

Roz

Posted for Roz on Richards account

Top ups of haemoglobin make you feel much better

Hi all


Well I am just trying to pass the time now until my body starts producing its own blood cells again and I can then go home, it might be a week or two. I have had more top ups of haemoglobin which made me feel much better as I was very tired and had little energy.


The scarf I am knitting is getting longer and I have started some embroidery to help pass the hours in between family visiting.


Steve was up here this weekend and he is planning to bring the kids up next weekend, by then I will not have seen them for nearly 4 weeks! Thank goodness for skype which has allowed me to talk and see them everyday.


That’s all for now.


Regards

Roz

(Uploaded by Richard for Roz - below is a picture of Roz just over a year ago)

The leeches have been at Richard

It turns out that, in addition to an early diagnosis for MDS,  I also have Haemochromatosis which is a posh word that means 'too much iron in my blood'. The best way to reduce the amount is to remove 500 mls every couple of weeks - so that is what Dr Ho has ordered. They just take it through a needle (not by leeches - honest!). It was a big needle though and strangely I felt it hurt more than when I had my two bone marrow tests.
While recovering from that, and waiting for my cup of tea, I took this photo of the nurse checking my blood pressure etc

 According to the literature I have to cut down or give up on beef, lamb, some vegetables and other things that contain iron, and have a cup of tea when I have meals (which inhibits take up of iron). Well I am  beef and lamb farmer who loves his meat, so this is a bit of a pain.

Perhaps I should just shave my head

I have been told that I will lose my hair this week, as I am 10 days after taking the last daunorubicin chemo infusion. Be under no illusions you will lose your hair!

In fact I noticed that I am starting to lose my lovely red hair today and my scalp is a bit sore. Mum took the scissors to my hair about 10 days ago and I looked like a boy. She did a fairly good job but I think she enjoyed chopping it all off. See picture on earlier Blog.
The next stage of coming to terms with losing my hair is to take the clippers to it, which we will do over the weekend. Hopefully this will reduce the trauma of losing the rest.

I am keeping my spirits up
Posted by Roz from Richard's account

What should I take into Hospital when having chemo or a transplant?

Using Skype to keep in touch - see below

Rebecca Shepheard has been kind enough to act as a ‘buddy’ for Roz. She had MDS, and it took two transplants to fix her. (Click here for her story) One of the most useful things she told us was what sorts of things to take in to hospital when you go for a 10 week session for say chemo

“Have had a think and a few bits spring to mind that I found incredibly useful:

-  Moisturiser!!!! Lots of it and face and body - the drugs and the climate (rooms are controlled) dries your skin incredibly and I needed multiple applications a day!
-  Music - iPod to fall asleep to and also block out other hospital noises
-  Magazines - I found it difficult to read at all as I started to get more tired so struggled with books - but short articles etc or recipes (like Good Food magazine if you are into that sort of stuff) useful to pick up as and when
-  Day clothes - I was encouraged to get dressed every day - was a bloody nightmare most of the time but gave me a sense of achievement
-  Snuggly dressing gown and slippers - could also be used as a blanket as the temperature in my room varied wildly
-  Pillow - I took my own as their have plastic/rubbery covers which make you sweat and are horrid - I also took my own duvet and slept on top of the bed with their blankets on the bottom - but might be logistically difficult for you
-  Fruit drinks - particularly useful for me taking pills - some of the tastes needed a bit of masking!
-  Fruit sweets / chews (like Opal Fruits) - if your throat gets sore and you struggle to eat or drink, something like this is quite refreshing
-  Snacks - I had TONS of crisps, sweets etc - to supplement the hospital food as it will get incredibly repetitive, is of varying quality and also as you go off food, cravings change - so I had an urge for Dairylea pots with the dipping sticks in, biscuits with cheese in etc.  Your tastebuds will probably change and I lost my sense of taste temporarily - as it diminished I craved strong flavours - like Pickled Onion Monster Munch!!
-  Photos - my family made me up an album and messages and I referred to it constantly
-  Disinfectant wipes - to wipe your table over the bed, handles etc as needed - you have to be so careful re germs and sometimes, with the best intentions, the cleaning isn't thorough enough.

That all worked for me
Rebecca”

Roz also brought it
A mobile phone – she has good reception in most of the ward
A laptop – in Kings College London Hospital there is a great Wi-Fi faculty. £15 pays for a months unlimited access. So Roz keeps in touch with friends and family by email, orders bits and pieces she needs from Internet sites, gets photographs and videos sent to her featuring her children, and most important uses SKYPE


This facility enables you to (video) telephone anyone else in the world for free as they also have this free software. She has a long conversation with her children each day – when they can show off and be silly for while on the video link. She also chats to her partner, other family members and friends. It sort of doubles the visiting hours. (And if you do not want to be disturbed you can just turn the laptop and mobile off)

Knitting – big blunt needles and simple pattern
A sketch book to send home drawings for her children, and to act as a diary
It sound silly - but Roz took her big Teddy
Roz took a light weight (purple) blanket instead of a duvet
And wash clothes daily, change personal pillow cases daily etc
And for when your hair starts to fall out, use one of those roller things to get the fluff of your clothes. It is great for getting fallen hair off your bed
The hospital will also give you a list, including things like a gentle tooth brush


Below is today's email note from Roz back to her friends



"Hi all
Another update to you all. I have finished all my sessions of chemo, 23 over 10 days! Everyone said I did very well, no sickness but an upset tummy. I have a rash which they say one of the types of chemo can cause and now I am getting nose bleeds because my platelets are down. I have had a top up of both platelets and haemoglobin as the drugs knock your normal blood production whilst trying to get rid of the blasts in my bone marrow. Hope you all followed that, it can be confusing to say the least.
I have had some post to the ward and have kept myself occupied by doing some knitting, keeping a dairy, a bit of drawing and embroidery, plus a family member is here every day to keep me company. I am not rushing anything I do as I still have a minimum of two weeks here and could be longer. Some people that come in are quite ill with side effects and don’t manage to go home between their chemo and transplant!!!

Not much more to say.

Love Roz"

Posted by Roz from Richard's machine

A Nose Bleed as a side effect of Chemo

Roz has low platelets and a normal side effect of this during a session of chemo is a nose bleed. So when Roz had one this morning she had to hold her nose for about 90 minutes. She only lost a bit of blood. The infusion of platelets had to be irradiated before it could be used. Two nurses came in and really, really made sure that it was the right stuff for the right person - most encouraging.

The transfusion of platelets, which was a strange yellowy colour, was very quick. Not too bad – a couple of hours of discomfort and then all was fixed.

As it happened, Janet her super nurse, popped in for a 20 minute chat just as the platelet transfusion was completing. She explained what the criteria were for going home after the first bought of chemo.
With MDS they wait until the blood has recovered enough to deal with infections. This might take 2 to 3 weeks after the last chemo was given. They might give Roz another course of chemo if her body can take it, as it slightly improves your chances of recovery from the transplant. Prior to the transplant they give a different form of chemo.

Why not contact the Anthony Nolan Trust and become a donor for blood, bone marrow or even just for platelets.

How strange - father and daughter both have MDS

MDS (myelodysplastic syndromes) is a very rare disease having only a few thousand people diagnosed each year in the UK. Roz aged 41 was diagnosed in Oct 2009 after feeling run down and having a routine blood test. She thought she might have anemia.  This was in itself very unusual as the vast majority of people who get it are aged over 60. After repeated tests Roz has now (Sep 2010) started treatment in King’s College Hospital London. Every one may have slightly different treatments. With Roz she is having two courses of chemo-therapy, to be followed by a bone marrow transplant. She expects to be back home by Christmas, and if the transplant is a full success this will result in a complete cure.
A few weeks ago Richard, her dad, also had a routine blood test and was surprised and a little alarmed from a family perspective, that he also might well have a similar problem. In his case the reason he went to the doctor was beacsue of short term memory loss. After tests it has been confirmed today that he also has MDS, but a different variety. Tests also show that it is not hereditary.