What a bugger

Well the bad news is that my (Richard's) MDS has progressed - which is the technical term for got worse. My blasts have gone from normal (2%) to 8%. Between 5% and 10% is called RAEB-1 (refractory anaemia with excess blasts-1). This is what Ros had originally over a year ago - it then progressed to RAEB 2 which is between 10% and 20%. If it goes >20%, then you have leukaemia as well)

The situation for me is therefore to have bone marrow tests more frequently and monitor that and my blood tests more carefully - watch and wait
In addition as my iron level (ferritin level) is in the 400 region, which they had stabilised me at deliberately, they will now try and get it down closer to 50 (proper normal). The reason for this is that any drugs, chemo, transplant or other treatment they might give me in the future may well involve a series of blood transfusions. Each transfusion would automatically give me iron from someone else. Many MDS and leukaemia patients have an excess iron problem purely from too many transfusion - a ferritin level over 1500 or so can effect your heart, lungs or other major organs. So they immediately whisked me off for more blood letting. We are going to ask them if there is another way of getting my ferritin level down, as although this way is easy it does put extra strain on my poorly bone marrow as it repalces the blood - and just maybe that is what has triggered the 'blast'-ed problem.

The good news for me is that my iron level is good and since I had an infected tooth removed my blood results have got better, and I feel a lot better - less fatigue etc. Weird ain't it? Anyway I shall move forward with this new situation with a postive attitude.

Roz

The good news for Roz is that she is eating really well and they think things are going well, and they have the balance of treatment fine. Her blood results are good. They have taken a set of special blood tests to check how well her new bone marrow is doing - results in a couple of weeks

Ros was discharged and spent the weekend at the farm

A nice quiet weekend. She was eating better, drinking normally and all symptoms seemed to have gone away - other than being very weak.

Frogspawn in the moat

Starting to make some progress again

Six days after she went in the Doctors from Kings and Derriford think they know what is wrong. It is not any form of infection (extensive tests, and repeats, being negative), but they believe it is a side effect of some mild rejection of the bone marrow transplant (graft Vs host desease). This is to be expected and 'a but of it is good' as it proves things are working well.

She also has her bone marrow biopsy test results which where emailed from Kings. A month ago they showed that her new bone marrow was 58% of all the marrow (the rest being her old stuff coming back) They had hoped that the new stuff would have risen to the mid 80% by now, instead it has gone down a tad to 52%. So she will go with me to Kings on Tuesday / Wednesday and they will probably give her a top up of the transplant - this will only take an hour and not require chemo etc.


They let her out of Derriford Hospital yesterday for a few hours - change of scenery, bath, see the kids and a meal. She went back in at 9:00 p.m. Today they have done the same thing - which is nice for her. It also means that she has to do some exercise walking to the car, which she needs as she is very weak from not eating and losing too much from the other end

She is looking a lot better than earlier in the week, eating and drinking better, and was feeling 'locked in' where she was. We take her back in later this evening.
The kids are not getting much of a week - their half term. But this morning Barbara and I took some school children around the farm, seeing chickens, goats, cattle, sheep, a hare, a buzzard, lots of things we grow, and then we cooked some potatoes and meat for their lunch. The children came with them and had a lovely time. They both got a new computer game a couple of days ago - so all was not too bad

Ros is still not well

She came in on Saturday, and they still have not found out what is wrong with her. They have taken loads of tests. She is not eating, drinking a bit, is having hydration through a drip, and is being sick and having diarrhoea
The worrying thing is that last night, after days of multiple antibiotics intravenously, she got a temperature of 38.9C - which is not good.
We are going to ask them to liaise with Kings, in case they have any ideas

Picture Taken Sunday when on Oxygen

Her blood test results seem fine though. She was only on oxygen for half a day earlier in the week. Yesterday she was a lot better in her self - drinking a lot more, including high energy drinks. She should have the results of her bone marrow test, taken three weeks ago, by next Tuesday when we were both due to go up by train to Kings. I think that will be post phoned or done by video link if they can do their end

It would be nice if she could come out of isolation and go and see the new art display in the hospital

Roz is back in hospital

Roz is now over 100 days after transplant and was doing really well. She came down with a low grade tummy upset, then sickness and diahorria and eventually with a high temperature.
So last night she was admitted, and put on intravenous antibiotics, rehydration, ... , and now oxygen

She expects to be in for two or three days, all being well.
The kids are on half term, so they will probably come back to the farm until Roz feels very much better - she could not cope at home with Steve working


I had to have a tooth out this week, and thought I might be admitted. The simple extract turned out to be 1 1/2 hour ordeal with two dentists, followed by a £100 parking fine for over running my ticket. Luckily the heavy duty antibiotics they gave me before and after seem to stop infection

Done frommy Iphone

Day 98 - The Hickman line comes out

Last week Roz and I had our bone marrow tests. Afterwards we did some shopping in London and had lunch and afternoon tea in John Lewis. That is the first time Roz has been able to have a meal out - given the smell of which had been making her nauseous. It was a very long and tiring day, as we had reserved 4 hours in case she needed any treatment - which she did not need

Yesterday Roz went to the consultant in Plymouth and she said that Roz need only come to clinics every two weeks, instead of every week.


She still needs regular blood tests just in case the  CMV comes back and to monitor rejection

Both hospitals agree that the Hickman line can come out - so that is coming out today. Another major milestone, which will remove another potential source of infection. It does however mean that blood tests etc will need a needle in her, like normal folk.

Our friends from the States left today after we all had had a great time - even though the weather was awful. We took them to see Roz and the family at the weekend. We had a lovely lunch in Tavistock, and then after a bit of shopping had afternoon tea in the Bedford hotel. Lois had to check out the 'Candy shop' for her daughter back in the States - seen her getting help from Isabel. Then we played with the kids and chatted back home.

Roz still needs a lot of help, so Steve's mum has been down all week - which is a big help


Roz's son has met the Doctor and has a blood test - waiting results. He seems a lot happier.

I am still much the same - except I keep getting Gout, which is very painful, and the painkillers that deal with it inhibit white blood cell production !! I also broke a tooth which needs extraction - but the doctors think I can manage that, even with neutrophils at .6.

A major milestone for Rosalind

Last week was a major milestone. Roz was going anemic and the doctors thought she needed a blood transfusion, but they took a considered view and did not give her it. The reason was that last week was when Roz came off the anti-rejection drugs. These suppress the Bone Marrow production. She has also gone to a much reduced level of the anti-viral tablets - which also suppress the bone marrow. So the thought was that her new bone marrow should be given a chance.

It has done well, and she has not needed the transfusion - and is looking well.

However, this is a time to be very wary, as host Vs graft (or vice versa) disease can appear and need to be managed. So yesterday and today when she got a mild dose of diarrhoea she immediately rang both hospitals to check - they both agreed to not worry and test her tomorrow - Wednesday

So tomorrow Roz and I both have scheduled bone marrow biopsies, blood tests, and Roz meets the consultant at Kings. We arrived at Robert and Jessica's a couple of hours ago, had a nice meal and chat. They got engaged at Christmas - the whole family is delighted.

The photo below was taken a few days ago in Roz's local town of Tavistock, when we all went to do a few hours shopping

Tomorrow is also a good day, as very old (in the sense of know them a long time ) and dear friends of ours from San Francisco are coming to stay with us for 10 days or so. Our first visitors besides immediate family for a year - and we hope to get a few days off as holiday

Tip of the day

Yesterday and today were a bit weird, as Ros went into Derriford yesterday morning for a blood test and I went in after lunch to get formally put on their books.

As you might expect I took all my blood and bone marrow test results in to help speed them up. They decided to give me a venesection - blood letting again, which did not happen for 4 1/2 hours - at which time the male nurse, who was getting tired as they were short staffed, failed to get any blood out twice - which is very painful.
Today I had to come back in before lunch and try again - a female nurse, as it happened, had a go at the venesection which worked first time. The male nurse was stood next to us. We figured out what the problem was - during the whole 4 1/2 hours I was in yesterday, I had not had a drink, my veins would contract, they would be hard to find, no blood, …
So the tip from the lady nurse was:
 

• 'If you are having blood taken for any reason, have a lot to drink during the couple of hours before. Say a big bottle of squash or something
• That way your veins pop up and it’s much easy, and less painful.

Then Ros was in during the afternoon to see the consultant - her haemoglobin is down, and she is on the border line of being neutropenic so may need a blood transfusion next week. The trouble is, if you give too much blood, the bone marrow gets lazy and does not do its job. She was able to reduce one of the nastier tablets again today - so that will help.

Ros's son is worried that he might have something wrong with him - so a strategy was devised where the GP can put his mind at rest, or even take a blood test to show him that he is OK. He is a smart lad and heard about hereditary problems and put 2 and 2 together.

We are both feeling fine, other than the tiredness you get with these issues, and after all that we did not even meet up for a coffee.

Day 67 - Things are getting better

On Saturday Roz drove her mini for the first time since she had her Hickman line put in some months ago. She was then able to drive herself to the Hospital on Monday where they took more tests and had no need to do any changes - which was good.

Today she went back in, met up with Hanna a senior consultant who said that her CMV had been negative the past two blood tests, so they could reduce the 'pink' tablets - these are very very strong anti-virals that combat the CVM, but also dramatically slow down the bone marrow.
Today she also had been told to further reduce her tablets that counter rejection of the transplant. Both of these are great steps forward, although it might bring on a form of host Vs graft (or vice versa) side effects, which the Doctors want a bit of for some reason.

So a very good day. She sounded very bright and cheerful. Steve's mum is down to help, and its Ros' birthday tomorrow - so we hope to all go over for dinner at her place

The only down side to the day is that Josh, my lovely sheep dog who was run over before Christmas and has already had two operations to put his hip bone back in its socket, was X-Rayed and showed that he has to have it put back in and wired in for a third time tomorrow - he is not a happy dog, and lots of general anesthetics are no good for dogs.

(The photo is a library shot of the hospital)

Transplant reunion

Dad and I spent the whole day in Kings College hospital yesterday. It was packed.

You must make the effort to talk to people in the waiting rooms. Everyone sits there looking gloomy. We always try to chat to anyone and everyone. Lots of patient have good news to tell, and by sharing it amongst the Outpatient  'family' (other patients, nurses. admin, doctors that you have all met lots of time) it can help pass the time, lift your spirits, and make you feel that it is not just you. We all become too self aware, and pre-occupied with ourselves. There is real hope out there and the team does its best to make you feel at ease and be positive.

It can be much harder for the younger patients,  as they always seem more upset, nervous etc. This is understandable as they should have a long life to look forward to and diseases like ours can change this potential. And in fact they have far better chances of recovery than older people. So do spend extra time with them.

I am doing really really well. That is what the Doctors and nurses who know me say. I am starting to come off some of the horrid tablets. I am able to do more each day and I am generally feeling more and more normal but I am aware I still have a long way to go.

Even with the Hickman line in, I think I will have a go at driving the Mini soon. Yesterday we sat in a cab in London with the strap over it and it felt fine.

I had a bone marrow biopsy, blood tests, and two lots of blood that took all day, so in the afternoon we watched a movie on Dad's computer with earphones on.

Dad is doing well too - no worsening off his figures. We watched another film on the train back home. We were both really tired by the time we got picked up from the train but very positive.

A tip on taking tablets or liquid medicines that taste horrid. The Doctor suggested a sip or two of Coke. I tried a bit of juicy strawberry, which worked well too!

Love

Roz
 

Made it! Christmas Day

At the last minute we were not sure if Roz was going to have to be admitted Christmas day. On Christmas eve she had some tests which showed her sodium was low. She had to go into Derriford on Christmas morning for further blood tests,  she came back and later the nurses rang to say her sodium level was on the way back up - probably the Walkers Crisp she ate :-)

So we are having a lovely Christmas. Loads of presents for the children, and a nice Christmas meal to come - half veggie and half meaty stuff - traditional turkey done a special way.

 Roz was determined when she went in for the transplant to have a normal Christmas at home

Christmas is upon us

We are all looking forward to a white and happy Christmas. Roz will have Christmas at their house in the morning then come and stay with us for a few days. Simon and Robert will also be coming down - weather permitting. It should be fun

Back home again

While in Derriford Roz has fought down three viruses, high temperatures, oxygen problems, etc - and of course boredom when she started to get better.

She feels a whole lot better today and after a 3 hour long wait for pills and potions is now properly discharged from Derriford to her home. Steve and the chidlren came in to pick her up this evening.

A poor couple of days - that finished more positively

Roz had a very poor day yesterday, overnight and today
She had bad vomiting over night and had to come back into Derriford very early. She also had sickness, high temperature (39C) ,probable chest and stomach infection + the CMV virus, pains in the tummy. 
She was too ill to have the extra blood transfusion, and had extra anti viral / antibiotics instead. We were all a bit worried about her.

Barbara and I took it in turns to be with her from7:30 am until 9:30 pm. She was a lot better for the last hour or so - walking about a bit, and had some food for the first time in the day.

Using a clip thing on your finger they can monitor your pulse and the bit I did not know, they can also monitor how much oxygen you have in your blood. Anything over 95 is fine. She went down to 80 in the evening, so was put on a low level of oxygen via her nose - which seemed to help by the time I left. 

By midnight her temperature was back to normal and she felt very much better.  However, we learnt that the oxygen level in her blood had gone down very low-  so she was put on the highest rate of oxygen  they could via a mask over night. She found this claustrophobic and scary, so did not sleep very well. The doctors were not sure what had caused this low oxygen level when all other signs were OK. We thought it was partly the fact she was overdue a blood transfusion so did not have enough red cells to carry the oxygen, and she had had this infection in her lungs.

Today she was gradually eased off the oxygen, but felt sick, had diarrhoea , pains in the gut - but her temperature is OK still. So the gave her the blood she had been going to get yesterday, plus magnesium, potassium, two antibiotics via the Hickman line , and of course loads of pills, mouth washes etc.

During the afternoon, Barbara went for root canal treatment at the dentist, following a week of antibiotics to cut back mouth ulcers etc. She came back into the ward, and promptly felt faint. Instead of just falling on the floor - her first aid training told her to lie the patient done, in this case she was the patient. So she lay in a feint on the floor in the corridor out side Roz's isolation ward. Doctors and nurses scurried around, took her 'Ops', got her int o a bed, cups of tea, sugary things to eta etc. Roz meanwhile had gone for multiple X-rays. I took Barbara home 40 minutes later and put her to bed before Roz got back from the X-rays. 

After a quick meal, I then went back into Derriford to look after Roz again. Roz enjoyed repeat heavy duty antibiotics, and two more blood transfusions - around 12 hours hooked up for the day. Just before I came home another Doctor came in and told Roz that the X-rays showed a small blood clot on her lungs, which is caused by all the lying down. So ten minutes later she had a subcutaneous injection of something like warfarin to dissolve away the clot - it feels like being stung in your tummy by a bee when you get the injection.

She feels a lot better now - no temperature, oxygen levels OK, no headaches, pain in stomach gone etc. She had a bit to eat and drink, chatted and lot and when I left her was cheerful even though she still had 4 hours on the drip to go. 
To end the day we Roz got a lovely bouquet of (virtual) flowers from Lois in San Francisco

Dear Roz,

Sorry to hear that you've been having a rough time these last  few days. Barfing (slang for vomiting - do you use that term?) is one of my least favorite activities. Interesting bit about different O2 saturation readings on your fingers and toes! Being hospitalized is no fun.  I hope your doctors have got it all under control now and you can go home soon.

Here's a little bouquet for you, from my garden: mint, parsley flowers, African blue basil flowers, and jasmine buds. (Richard/Barbara, please show this to Roz if she is  not online herself.)

Best wishes,

Lois

Real flowers are not, of course, allowed

9th to 12 th Dec - the CMV virus came back up again

We had hoped the CMV virus had just about gone.Roz has been taking special tablets to combat it for some time now.

However on 9th Dec Roz got called in to be admitted into Derriford and put onto intravenous special antibiotics at 4.00 p.m, as the CMV results from Wednesdays checks showed that it had reared its ugly head again.  We were in within the hour. (The results might have been caused in part by 'sicking' up her tablets a couple of days - who knows. Nausea is a real pain - if you can keep the tablets down, you get better much quicker)

• No beds available when she got there
• They offered a bed in Outpatients area - which is a bit like in a corridor
• The on call pharmacist turned up at 9:30 p.m. It took hours to contact him - the nurses thought that he had left his bleeper behind. It took 2 hours to make up the drug, which then required a second pharmacist to check it as it is a very controlled drug. She started having the drip at midnight, then we took her back to our house to sleep. She was admitted again at 9:00 a.m. and has had a bed there since then.
• The doctors and nurses were really good - and kept bring drinks etc

Seen here with her Mum at 12:30 having the drip

They actually only need here in twice a day to have the drip given - 12 hours apart. So she is getting home for a few hours in-between to see the kids, etc and sleeping in the hospital over night. Again she is having problems eating, sleeping, being sick, and headaches. The faster this CMV virus is dealt with the better, as the drugs being used to treat it suppress also suppress the new bone marrow.

Trip to Kings 7th and 8th Dec

She was a real drag. The doctors recommended that we took Roz by car, given how soon after the transplant it was. Normally that is a 4 1/2 hour journey - it took 8 hours - given M4 closed from junction 3 to 1, and the South Circular being a nightmare.
We both were seen

Richard. I lost another pint of blood, which later Dr Ho said it was a shame I could not have just given it to Roz. My ferritin level has come done a bit more (whihc is good) - so I only need blood letting once every two months now. Shame - I was just getting to know the leeches. He also gave me special antibiotics in case I get a temperature - to keep me going before I can be admitted, presumably to get some intravenously. I also have to have antibiotics when I go to the dentist - all because my immune system is not good. (Neutrophils at .7, instead of normal of above 3 and if they stimulate the white cells to improve the neutrophil level, they might bring on the MDS sooner - so what I have is just fine)

Roz was having blood tests at the same time - seen here coming to see how I was after my leeching.

They said that she was doing fine, and should come back every two weeks, bone marrow tests once a month for a while, and keep going to Derriford when needed in between
The journey home was a bit better - only 6 hours - notice the heavy ice on the plants to the left

Next time we will be OK to go by train - whihc will be much nicer and less stressful

Combatting sickness / nausea

This was a bit of a struggle, and is with most patients. The doctors can give you a variety of anti-sickness drugs and tablets, which need to be taken well  before you might be having food; or even thinking about food.
Another technique which might help is to use wrist bands that are designed to be used to stop sea or air sickness. Roz tried these and they did seem to help - only they only cost £2 !!

They other thing is very careful choice of food. Just what the patient will / can stomach. With Roz we found the following worked

Toast with margarine - not butter
Bananas - very good as give potassium as well
Peeled apples
Melon
Tea
Good yogurts - they have to be pasteurised (The one shown below at Derriford was very nice, while the ones in Kings were digusting - even if you were not ill - they were not real yoghurt)
Simple boiled potatoes
Sandwiches with nice bread and say thinly sliced freshly produced chicken
Cheese in individual packets
Ceratin types of low salt crisps
Special high protien drinks the dietician gave her

And then the number, taste and shape of tablets and liquid medicines also makes you sick. Ask if you can spread them out over a period, and try and eat or drink a bit before and after to help your stomach accept them

Donor George - what a hero

George offers to be a donor for bone marrow

Here is George working on a hedge that we were restoring. George works for us part time as a farm worker / environmental farm worker.
Having heard about Roz, George signed up to donate bone marrow. If you want to do so, please visit the Anthony Nolan site.

All you have to do is

• Read a simple form, to ensure you are able to be a donor i.e. some diseases you might have had 
• Apply
• Spit in a bottle they will send you
• And then they can check you for a match against anyone in the world (mainly the UK, Europe and the States) that might need stem cells.
• If you match then they will take you through the process of giving the donation - some tests, some pills to make you produce spare cells, filter then out of your blood stream and Bob's your uncle.

Why not sign up today?

One day at a time

During the past days we have been back to hospital with Roz 4 days out of every 7. This week she is there today, then we drive to London tomorrow to go to Kings on Wednesday. Today went well - a quick blood test, a one hour top up of magnesium, then a huge delay because the pharmacy had lost her prescription!  Most morning she still feels sick, and often is - just having to take the tablets. She is starting to help a bit around the house. Slowly slowly.

 A good thing is to get out each day, a change of location, fresh air, getting your body moving all seems to help. Here Roz is watching her dog trying to round up sheep.

You will note that Lottie is not even looking at the sheep - she is actually looking at the two sheep dogs to the right that had just brought the sheep near her :-) Well it's a start.