Out of hospital

Sorry it has been so long since I last blogged. I am now out of hospital but have been going in almost every day for check-ups and as you know you are kept waiting around for hours to be seen and then hours for test results which is very tiring. I am doing well but get tired and I am still suffering from some sickness at times.

For the next few weeks I am staying with my parents so they can look after me and take me to appointments. I have been able to see the children but going home and being with them all the time would really tire me out. I hope to go home in a week or two when I have built my strength up a bit more and can cope a bit better, after all I was out of hospital in less than four weeks and I was told I would be in for six weeks so it is early days yet and I have a long recovery ahead of me. As you can imagine I am finding it all too slow and I have been warned there are likely to be set backs along the way!

I hope all of you are well and I will update you soon.

Regards

Roz

Downs and ups of the weekend

On Saturday morning Roz was feeling awful because of the number of tablets and medicines she has to take. With her stomach lining in repair mode, and her taste buds shot to pieces it is no wonder.
She had a slight yellowing of the eyes, and a slight nose bleed, so the Consultant told her to go to Birch ward at Derriford. They checked her out and found she did have a slight kidney problem - hence the yellow, and were concerned that she was not drinking enough. The result a 1 litre of fluid straight into her Hickman line.  She was very pleased to hear that the CMV results from King's showed that her new bone marrow was fighting it off.

Today, Sunday she did a lot better. Her children are all without colds etc, so Steve and both kids came over for the weekend. Seen below - Roz and Isabel taking a walk

A long day and what doctors say can have a big impact

On Tuesday afternoon we drove for 5 hours from Devon to London, stayed over night and then went early to Kings College Hospital. Before she went in she took the morning batch of drugs - see photo.

It was a good job we did go in early. It was a very arduous day.
Ros had her blood tests. They took a lot of extra blood for research purposes. No problem.

As this was going on she was informed that they wanted to do a bone marrow biopsy. That is not very nice, as as they have to drill into your hip bone and extract bone marrow. They also needed to chip off a few bits of bone on this occasion. Many people have a general anaesthetic, we just have a local anaesthetic  put up with the pain and strange feelings as it is lot quicker. The good thing was that it saved another long trip to London as it needed doing anyway - Roz got 'lucky' as they had a cancellation and could fit us in.

The photo was taken off the Internet and shows bone marrow being extracted. As a patient you do not see this, it all happens behind your back

We went to see a consultant. This was a young German doctor who told us he had only been at Kings a very short while and did not know the procedures. He examined Roz, during which he was teaching a young doctor from Spain. This was fine until he looked at the rashes that Roz had - he said he was not an expert at rashes but he thought it was definitely a graft Vs host rash - which is one of the three things that transplant patients fear most. He kept asserting this. Roz was immediately very upset and frightened. The doctor could not get through to his boss and asked if we had anything else we needed to ask him. Well we had a few things, so we started asking and he obviously did not know the answers. Our confidence was shot.

He left the room and sometime later came back with a more senior and very experienced Consultant who thought the rash was not graft Vs host, and put our minds at rest. He called in the dermatology team who confirmed this and switched the creams being used to sort out the problem. He also answered all the questions we had and Roz gradually calmed down.

Our view was:
1. The first consultant you meet on return to hospital for the first time should be experienced
2. No consultant should assert something that serious without a second opinion. All he had to say was 'I am not a rash expert, so I think we will just get someone else in to have a look at them'

The test results were very good, so they said she only need be checked one a week, alternatively at Kings, Bone marrow tests once a month for a while, and steady as you go. They cleaned her Hickman line, so she could last out until next Wednesday. So that was great.

We then spent another 5 hours driving back to Devon and got back exhausted

In the morning we heard from Derriford that the tests they had done on Monday had identified an early sign of CMV. Cytomegalovirus, or CMV, is a moderately infectious herpes group virus which has to be stomped on very quickly. They called her in to switch the tablets and said that she would have to be checked twice a week for two weeks until it cleared up. When the lady Consultant was telling us about this she also told us that a small amount of graft Vs host is a good thing as it shows that the new bone marrow is doing its job, and as a consequence will be fighting any possible residual MDS or other problem - which is what we want.

Roz went home and slept a lot. Hurrah - no hosptial visit until Monday

What a drag!

Roz had to go into Derriford to have her lines checked, blood tested and a top up if needed. This should have taken one and half hours in outpatients if no top up needed. In the end it took just over six hours - plus 90 minutes travel. One hour was a delay before being seen, that is after the appointment time. Then seen, and dealt with in a 'proper manner' . The nurses, doctors and catering staff were very nice and good.

After a further two hours the main blood results came back - all very good. So we just needed the potassium etc. To cut a long story short, much to the embarrassment of the nurses and doctor, several calls to the lab, the 'mislaid' sample was found and the results came back - well all but the magnesium. Roz had accidentally missed out out on the sandwiches at lunch time, so a very kind lady brought her one at around 4:00 p.m., not realising that beef sandwich is not all that appealing to a vegetarian. Roz was sent home - exhausted.

On the way we stocked up on a veggie pastie, popped back to her house to pick up warmer clothes, and came back to the farm for a hearty dinner - a great recovery sign.

A couple of hours after she left the hospital the magnesium results came in - this of course was the only one she is low in -  - so she has to go back again tomorrow to Plymouth morning for a top up.  This could have all been done today in about four hours including the top up. Grrrrr.

Then we have to drive the 5 hours to London, stay overnight, and the repeat the tests etc at Kings before driving back home again - she is not allowed to use public transport yet.

What a drag! Well not to worry if the results continue to be good.

Footnote
When Roz went back into Derriford, the Doctor kindly went through the results from yesterday - it was a bit concerning that the were different from what she had been told the day before.

The nice thing while waiting is you always find lost of lovely patients to chat to. They always have good ideas or tips that might be helpful - and lots of really bad jokes of course. Nearly as bad as Bruce's !

Out and back at Mum and Dads

Ros waiting with her luggage for the car to come around, with Mark - one of the great nurses who had brought her down from the ward

The journey home was a long one - around 5 hours in the car. We stopped a couple of times at service station on the M4. She has to go to Derriford Hospital on Monday and we have to drive back to Kings for an appointment on Wednesday - she could easily catch something on public transport. The car has been cleaned to nearly show room standard, and then wiped down with antiseptic wipes. We stocked up well with nibbles and CDs - talking books can pass the journey well

Steve and the kids came over for the week end. Isabel had to wear a mask as she had a bit of a snuffle - she pretended she was a nurse!

Going home today - but very late on

We have been waiting all day for Roz to be discharged
She has been on drips through her Hickman line since 10:30 this morning. Topping up with everything you can image, finally two pints of blood. So we hope to get out at around 10:30 tonight!!

 Above the last of the blood transfusion goes in

'Aahh that was horrible.' said Roz. That was a potassium tablet, in water

Good news - the pharmacy has turned up with all the drugs she needs, before she pops into Derriford Hospital on Monday for a checkup.

She has been eating much better and just wants to get out

So we will take her to Roberts overnight and then down to the farm tomorrow. Steve has a cold and Roz is very weak so she is not going to her own home for a while. The kids will pop over to see her though - and Steve can wave through the window.

Its so easy to get depressed

Roz had a rash and got one of the doctors to have a look at it. She was told it was not too bad, but could be a sign of host versus donor rejection. Guess how you feel when a doctor says that a few days after a transplant. So Roz was quite upset. Later the lady Professor came around, had a really careful look and said she thought it was not a problem. A dermatologist inspected Roz later and said it was not a problem and was not the host donor issue. So for hours the patient worries unnecessarily. She also got depressed yesterday morning, as she really just wants to go home, and the staff were very busy with other people - so she was on her own until Barbara arrived at 2:00. It shows the importance of relatively constant supportive care - the nurses, doctors and other staff have been great, and we have been there as long as they will let us.
She is also still  not eating much. Linda (a nurse), Barbara and I had a chat with her, we got her some Heinz soup, had it heated up and she ate it. She has now down this twice. Part of the issue that many patients get is that they can eat food that they have chosen, and have control over. More soup today. More walks. More exercises.


There is much talk about discharging Roz, so I went down to Devon by train, slept overnight on the farm and brought the car up to London. So we are ready. Its a matter of stabilising her potassium, because the anti-fungal stuff she has causes some people to get rid of potassium from the body through your urine.

We were upset to her that Roz's Auntie Pauline has had to go into hospital with gall bladder stones - very painful - and she will need an operation.

First day out of the room

Everybody keeps telling me I am looking better, but it does not feel that way. My nuetrophils are up, but I still feel sick.


I had two outings today. I went of for a short walk which made me feel a lot better. I bumped into another patient that I know, and had a chat for a while. And I like going up to X-Ray

Love Roz

Richard has venesection - blood letting to you

My MDS has this side problem of haemochromotosis - which means excess iron in the blood. A rating over over a 1000 can be dangerous to heart and other major organs. The solution is simple to take 500 mls (a  pint) of blood every now and then. When I was at 800 they took a pint every two weeks. Now I am down to once a month - and today's ferritin (iron) level was 462. Only another 412 lower to go, to get to a normal 50.

The needle they use, as above, is huge in comparative terms. (My friend Bruce says 'I've seen smaller harpoons' ) I distracted myself by telling my left arm that it was not attached to me, chatting to the nurse and Barbara, and taking these photos.
The blood is drained into a bag, and then thrown away - which is a shame as there are lots of patients with very little iron in their blood.

This is a few minutes later at around 480 mls - 20 to go. And then they have to pull this huge needle out!! You do not want a trainee nurse doing this - believe me. This nurse was excellent. (I guess giving blood is much the same - so hats off to those that do it.)

Not only has my iron gone to a more acceptable level, but my neutrophils have gone up from a miserly .62 to .8. Nowhere near Ros' s latest 11 !! All my other blood counts at low compared to a normal person, but have got no worse for a while - so that is good.

The net result is that I feel a lot better - less fatigue.
I have a bit of a sniffle in my nose today - so cannot go to see Roz until it has cleared up. Barbara is with her

Some more good signs with Roz

The GCFS is doing its business well. Yesterday her neutrophils were 1.3, which was good. Today they have shot up to 11 !! Which is way above a normal person - so that is tremendous news

She is, however still feeling rotten, mainly from nausea. So she asked us to get us a pair of those arm bands you put on to stop nausea when going on the sea in a boat of some form. We shall see if it helps.

(PS Roz is not up to doing an entry at the moment)

Things are progressing

Roz is still feeling ill - nausea, sickness, sore throats, slight temperature, mouth ulcers, etc. All to be expected we understand - but it still makes you feel pretty ill and very tired.
Seven days after the transplant they gave Roz an accelerator to encourage the stem cells that had migrated into her bone marrow. This is called Granulocyte Colony Stimulating Factor GCFS - targetted at improving neutrophils. This will encourage the production of new blood cells.  When this happens you sometimes get pains in your big bones.

The really good thing is that she has had pains in her hip bones the last few days. This is an excellent sign.

Seemingly many of these symptoms reflect the progress to the next stage of recovery. There is a book called the Seven Steps to Recovery - however Roz choose not to read it in detail, and just take things as they come

The other good thing is that all Roz's blood results are going in the right direction. In particular her neutrophils, which were down at less than .1 about the time of the transplant, are now back up over 1.3. (Mine are only .63 so she is doing well) Normal is still a lot higher - about 2.5 to 7.5, but this is one of the most encouraging signs for being sent home at some point - it means she is building up resistance to infections.

Kings College Hospital

If you would like to help MDS Patients

MINI 2 the Arctic

 

It is difficult to imagine the trauma of being diagnosed with a life threatening illness, which you have never even heard of and for which there are no easy cures or quick remedies.
Myelodysplastic Syndromes (MDS) are a group of diverse bone marrow disorders, in which the bone marrow does not produce enough healthy blood cells and can lead to life threatening, incurable blood cancers. Patients often rely on blood transfusions to manage symptoms of anaemia and fatigue. The treatment of MDS is very difficult and the only cure is a bone marrow transplant for those patients young enough and who have a suitable donor.
The MDS UK Patient Support Group, provides an invaluable life line to patients encountering a rollercoaster of emotions. The online patient forum, ensures that fellow patients can share their experiences and lessen the feeling of isolation. They also organise patient meetings with specialist speakers, distribute information and raise awareness of MDS to patients, carers and health professionals across the UK. They play an active role in Lobbying parliament to ensure that MP’s are aware that MDS patients need access to drugs comparable with those available in most European countries, together with discussions with NICE.
Sadly, 2000 people are diagnosed with MDS in the UK  each year. MDS can affect all age ranges and initially may have no symptoms.

If you would like to help with a donation, anything no matter how small or big is greatly received,  click on the MINI link above

Or, even better, if you would like to be a donor then click here

Dogs and cats can give you infections

While Rosalind  is in hospital, and for a very long time afterwards her dog and cats need to be kept well away from her. Once her immune system has come back up she can stroke them with gloves on and / or make sure that she washes very carefully afterwards, as she could pick something up from them. But living permanently in the same house, until she is really well, is a no no.

This is Lottie. Most  rough Collies are gentile. When Lottie is on the farm she rolls in all sorts of things, chases the other sheep dogs and generally has a good time

This is Georgie. He was born on our farm anyway, so is now living with his mum and brother. If you look closely he has a bandaged tail, as he shot out through a door that was closing, and did not quite make it. He is fine now.

This is Charlie, who is of course female. She is over 20 years old and just lives in Barbara's office - as you can see she has a nice place to sun herself. She weighs nothing but still is affectionate and quite well.

Almost human

I have had quite a rough time and couldn’t even face turning the computer on let along do anything else. The conditioning chemo you receive prior to the transplant itself was much tougher this time. I had several day when I was sick had no energy and felt very low. 

I am feeling more human again today. I actually managed to eat some chocolate!!!

Its hard to believe that a couple of days ago, that I felt like I wanted them to put me down, or get them to make me go to sleep until it was all over.

But now that the sickness has mainly subsided, I have become more interested in life again - including taking the Micky out of my dad. I must be a bit better.

I had the actual transplant five days ago, a bit of an anti-climax as it is simply an infusion like a blood transfusion and is over in less than an hour. It is fed in through the hickman line and that’s it. There are still loads of drugs to take to stop rejection and minimise infection etc.. Now it is a matter of waiting for the new bone marrow to settle in and begin working, in the mean time they top you up with anything which gets low and monitor you for infections.

Food is still an issue though.

Love Roz

Photo is Roz chatting to Simon in Iceland on Skype

I could kill for some simple food

Well the last few days have been hard since the transplant. The only real issue is that Roz has had nausea, and has therefore eaten hardly anything. This is a problem as the body needs energy to rebuild itself.

When Roz was in for the first bout of chemo – different chemicals – she found the food not great, but OK. However, a big problem when you have no immunity – neutropenia – is that you are not allowed to eat salads, nuts, most types of cheeses, bio-active yoghurts, … There is a book of restrictions. Another part of the problem is that Roz is predominantly vegetarian – only eating occasional chicken and white fish. So these reduce the available menu to a small part. And of course your whole taste buds change – so Roz could not drink tea for about 4 days.  The next related problem, which probably affects lots of people going through this, is that the smell, sight or even thought of cheese, butter, rich sauces, chocolate, … and even large portions can make you physically vomit – which happened several times, thereby losing the small amount of benefit that might have come from the food. So you look for other things on the menu.

Some of the items from the menu do not live up to their advertising.

• Pasta with cheese based sauce made her throw-up
• Jacket potatoes came very large and uncooked in the middle
• Allowed yoghurts tasted revolting, and seem to have no yoghurt in them anyway
• Fancy a nice bowl of soup? Well they serve cuppa soup
• Fancy some spaghetti with delicious tomato sauce? Well it’s not what you might make at home with fresh spaghetti – how about a can of cheap tinned spaghetti?

This ward does have special meals available which helps – but even these ‘light’ meals tend to have things like cheese sauce on them.  They also have ‘power drinks’ which do not taste very pleasant. She has craved some simple things like – boiled potatoes, steamed fresh carrots, pasta with nothing on it, … But the very helpful and nice dietician even had to state that ‘we can only offer what is on this pre-set menu’ and you cannot have a meal ‘minus’ one or more items to make it palatable to a poorly patient. It is strange that there is a large fully fitted kitchen actually in the ward. This only seems to be there to microwave pre-produced meals and produce toast and hot drinks.

Unfortunately where we are staying is too far away to bring in freshly cooked food (which some friends and families do) – as it would not be fit for a neutropenic patient to eat after a 50 minute journey. The main hospital canteen cannot be used, as food is left exposed for too long, and you cannot trust local cafés. And we are not allowed to use the kitchen in the ward – probably quite rightly, why should they trust us to leave it OK for other patients?

So what looks like a ‘reasonable menu’ might well be OK for patients who are not too ill, but for those feeling very poorly it can still fall far short of the mark. (As mentioned, Roz actually found the menu OK when in for her first bout of chemo.)

 So for days she has been living on water, peeled apples, toast with margarine (she was too nauseous to face butter). After a couple of days she also managed weak Ribena, a small amount of the power drinks, plain biscuits. And yesterday she managed a ‘snack’ plain cheese dip – her first protein in days. So we are getting there as far as food is concerned – but it’s slow.

In other respects she is doing OK and by yesterday the consultant was reasonably pleased with her progress. We had days of desperation, feeling very ill, agitation, depression, sickness and other normal problems people experience after this form of chemotherapy. She could not hold a conversation, no TV, no phone calls, Skype with her children down to 3 or 4 minutes, no radio, no books, no games, … Just a bit of comfort whenever she was up to it from her carers. Her body has also needed antibiotics, various minerals, anti-rejection drugs, anti-viral drugs, anti-nausea drugs, blood transfusions, etc., etc. In one day she was on drips for about 20 hours of the day, often with three or even four at a time. And pills to take on top.

She seems to be over the worst of that now. She is off antibiotics. Her body has stabilised, so she is needing far fewer drugs and yesterday she was only on drips for a few hours and felt a lot brighter. In the last couple of days she has been up a lot more, doing exercises, long chats and discussions with carers, long chats and jokes with the nurses, councillors, physiotherapists, doctors, (all of whom are absolutely fantastic). Skype went back up to 35 minutes, the TV came back on, etc.
  
She is on the mend, but it is still early days.

The doctor said that after 7 days the stem cells should have all migrated from her blood, where they were put, into her bone marrow. Then they can be stimulated and she should start accelerating her recovery.

So all in all fantastic hospital staff and treatment and recovery starting to gain pace, which could have been better with a bit of very simple freshly cooked food.

Regards
Richard

Transplant day

Well the big day has come. During the day Ros felt pretty rough, but managed to do some exercises, and generally was less sick than yesterday

The lady Professor and her entourage came around, and changed a few of Ros's medications. Then we were told that the stem cells gad arrived. They are checked for quality and these, seemingly, are very good quality. More than was needed.


So at about 6:00 they started the process of giving her 240 mls of them. It was a surprisingly easy process, only being slightly more complex than say having an antibiotic through the Hickman line. The infusion only took about 45 minutes. A nurse stayed with her the whole time, all done in her ward lying in bed - going in and out of sleep. He said it had gone very well, with no side effects at all.

The stem cells will take about 7 days to all migrate into her bone marrow, after which they will stimulate them to get everything back to normal quickly

Transplant day minus 1

Well Ros is off the chemo. That does not mean she is off having drips. Prior to the transplant she gets drugs to stop the transplant being rejected. And of course antibiotics, anti-sickness, potassium top-ups etc
Yesterday she was very sick in the afternoon- ie vomiting. This is quite common.  And today she has also felt nauseous. To combat that she has a new style drip (for her) that is put into her stomach via this clever pump whihc slowly pushes a syringe in - shown below

This works really well - and the nausea has gone away mainly. She is not eating nor drinking enough at the moment. A fresh cup of tea from the cafe downstairs helped a little, not to mention a bit of brownie

She had a lovely chat with the kids on Skype - they were full of various things they had been doing at school

Transplant day minus 2

This is when it has really hit Rosalind. No nasty side effects beside fatigue - which, I understand hits most people about now. She has hardly wanted to do anything for the last two days - so no knitting, craft work, emails, TV, DVDs, eating etc. Everything is too much. (Which is why I am doing a few for her) See this link
The good news is that this is the last day of the chemo. She has been hooked up all day today besides an hour to go down to X Ray. A really good thing she did was to walk down to X Ray department and back again, including the stairs - and then had an hours sleep.

The Hickman line can take up to three drips at the same time. As an example, tonight she is going to have six different things. A 6 hour drip of Phosphate, plus two x a two hour chemo drips followed by a flush of that line, and 2 hours of antibiotics.  So it will be more like 7 hours before she is finished. Plus she had various tablets.

Here you can see them using two out of the three lines

Here you can see a typical drip, and one of up to three pumps that can be sued to control the rate, and automatically stop the drip on completion or error

Being tied up like this can make it difficult to go to the loo - Ros leaves the trolley with the drips on outside, with the tubes poking through the door. That saves a lot of energy

Transplant day minus 3

Roz is feeling pretty rough today. It is all the 'normal' side effects of the chemo, along with loss of potassium. The net effect is feeling awful, not knowing what to do with herself, excessive tiredness, diarrhea, stomach upsets, and so on. She is having to force herself to eat. During the day and part of the night she is hooked up to all sorts of drips.

• For the chemo. 
• For the things that combat the side effects of the chemo
• Stuff to stop the transplant being rejected,
• Loads of saline bottles to clean out the lines after everything
• Stuff to put back the potassium she has lost, ... 

This latter is particularly important as an imbalance of potassium can effect your heart.

However the Doctors seem very pleased with her progress. And every now and again she has a smile and a giggle, and a joke with the nurses or doctors

The photo shows her sleeping while have the second of five 'one hour' potassium drips in a row . The next bottle will be given at the same time as this afternoon's chemo dose. Two lines at the same time Quite a battering the body takes, and hers is doing really well