The big adventure 

8th January 2016: Day 16

Still in shock can’t believe we are going home. It took me 7 trips to get all my stuff to the car play all the things that sue and Chris brought. When the consultant came round all was well to go except that Rogers Haemoglobyn level was a bit low. After debate we decided to stay so Roger could have a pint of blood. Otherwise all good. We eventually got back home at about 8.15pm. We had a chippy tea Roger ate all his fish. Feels good to be home. Now to start the next phase. To be co times in the regular blog. 

   
    
      
    
 7th January 2016: Day 15

Thought we had better start to get ready to go home. Went to halfords to get the air con in the car anti bacterial clean.  When I got back Roger told me they were going to let him go tomorrow! Bigger panic! Luckily sue and Chris brought all our stuff over from theirs which saved me a journey. Nice to see them we went to the Beatson friends and they had a tea. I had an early night as I was shattered! 

   
   
6th January 2016: Day 14

Portrait shoot went ok and I took the photo of the ewe. Just before I left Roger face times to day that they are thinking of letting him go home at the weekend but us in a bit of a spin! We won’t be ready but I am sure we will cope. Thinking it will be after the weekend. Changed the bed sorted washing and then drove back.mhad trouble keeping awake from Aviemore to Perth. Got back in time for Roger to want a sandwich. So went to the M&S garage and we had a picnic. Another good day but busy.  

5th January 2016: Day 13 

Another busy but good day. Started with a head shave, some work over at the friends of the Beaston, white cells still up they are stopping the growth hormone and stoping a lot of the iv drugs in favour of tablets. It will help with his fluid retention. Left of home at about 6.30 got back at about 9.30 all well.    

    
 4th January 2016: Day 12

A busy day, laundrette, a nice back massage and Rogers white counts well up! No high temperature either. Looking up    

    
 3rd January 2016: Day 11

I thought today would be a calmer day. It started well enough although Roger had a bit of  disturbed night it was better than the last few. We had the fussy Pauline again but she didn’t wind me up as much as yesterday. Roger had a shower and then I went to get him a duvet as Carol the night nurse said that he could have one. Got one from Argos and three covers. Also got some nice treats for me from M&S and a buff for Roger to cover his head and keep it warm. Roger then slept a lot and I did loads of tapestry. Didn’t go to the laundrette – will have to go tomorrow, didn’t do my editing – must do tomorrow. Later on he had a walk up and down the corridor. The evening went ok but just before bed time Roger got a bit restless and started to panic. He asked for a sleeping pill but then his saturation fell and he got breathless. His temperature was up a bit. He had another chest X-ray etc. When I left for bed at gone midnight his temperature was coming down and his breathing was ok. So hopefully he will sleep. Unless the give him fusamide and he is up all night weeing. 

It is relentless, at times I wonder how much more I can take.. 

   
 2nd January 2016: Day 10

Another unsettled night for Roger. I got to his room early as he texted to say he had not slept much. He is still very adgitated and fidgety, and beginning to get panicky about it. All his sats are fine. Which is good, he just can’t settle. Pauline is his nurse today which Roger is glad about. But to be honest although I think she is really good I find her a bit to fussing over him. That is my job.  I will wait until the doctor comes round and then go and get a lip salve for Roger. The consensus seems to be that the codine is causing the adgitation so that will be stopped. But he has also picked up an infection somewhere. He has had a chest X-ray and that is all fine. He had a shower and a walk down the corridor. I have left him for a short while and hope he is sleeping now.  Going back to sit with him soon and do a bit of tapestry. Pauline was there again, woke him up to give him a Valium what the point of that was is beyond me. Every time I go away she is back. Fussing over him and calling him darling! Anyway he is sleeping now. Today is a really shit one for me. I would go somewhere but there is nowhere to go I just feel so alone. 

After a sleep Roger was more like himself. And we had a fairly painless late afternoon and early evening. He is still a bit out of it but we have both settled down for an early night. So hopefully a better night and day tomorrow

Off yes  and Diane rang mum has been taken to the Westmorland hospital  with a nose bleed the couldn’t be stopped. Luckily Kai was free to go up and see what was up and bring her back in a taxi.well done Kai and Blair.

Today I trimmed his hair, as it is continuing to fall out. 

          
1st January 2016: Day 9

Woke up feeling a bit flat, with supose is a step up from upset, worried or scared. Slept well. We have not had too back a day. Roger woke up with a bit of swelling behind his ears, but they thought it was reflected to what was going on in his mouth. And that is probably right as it is going down a wee bit.  Roger needed oxygen in the night again but was off it by morning. The doctor came round and said that there was early signs that there was some activity by the new cells. Only a little raised and they could fall back again but it was a good sign. Otherwise. Roger has been a bit restless today an attached to his machine all of the day. His hair is showing signs of falling out. I found a few on the pillow. I made a little work area in the window and did the first pick and edit of Tuesday’s wedding. Tea time now and Roger snoozing a little. We are listening to para handy. An ok day but restless. 

   

 31st December 2015: Day 8

We had a pretty good day today. Rogers blisters have gone down bit but he woke with some sores on his bum. He has had a shower. I went in friends of the Beatson and down loaded and backed up my wedding photos. They gave me coffee and were very friendly. I asked about a haircut for Roger. Shame they are shut for the next few days. Roger had a walk up and down the corridor and ate one food. Half a sandwich, some cheese and a yoghurt. Also one ensure drink. Saw the dietitian. Roger has decided to abandon any idea of eating the hospital food. Towards the end of the night Roger got a very slight temperature and was a little restless as he had his second blood transfusion.

   
    
    
    
 30th December 2015: Day 7

Got up early and headed south what a wet journey, loads of puddles on the road. I got back to the Beatson about 10am and after I calmed down we didn’t have to bad a day.they have taken him of the pain drip that was in his arm and are giving him tablets that are not morphine based. Seems to be working ok together with hot pads and massage.he has a horrible big blood blister in his mouth, they are giving him platelets which should help that and he has also had two units of blood. His temperature has been down so all good really. Not eaten as much as he could have but has had cocoa pops and a yoghurt. A woman came over from friends of the Beatson and gave Roger a massage on his lower legs and feet which he enjoyed and found relaxing. A much better day all round really. 

   
     
     

 29th December 2015: Day 6

   

   
28th December 2015: Day 5 

  

    
   
   

 

27th December 2015: Day 4

No photos today. Roger comtinued to improve, think he is doing really well. Been eating the build up drinks. His heart rate is a little high but they hope to move him back to the Beatson tomorrow as long as it stays lower after medication. We are ready to go back now. 

26th December 2015: Day 3 

I couldn’t believe it when I got in this morning how much better Roger was sat up and aware. Much improved. We opened our presents and by lunch time sue and Chris had come and we went and had some lunch in the canteen. They brought more clothes and wanted Chris to drive me up to Aviemore for my wedding but I will be fine. It is interesting getting from one hospital to another! Glad I have the talking map on my phone. Love my necklace! 

    
     
25th December 2015: Day 2

I slept for 10 hours! Must have needed it. So it was just after 9 when I arrived at the hospital. Mary said that he was improved and later the consultant came in and said that he was doing ok, she was pleased with how he was doing. He only had a standard infection in his lungs not a really horrible one so that was good. He has a lot of water retained around his lungs and has drained off about 5 litres by tea time today. His kidneys were functioning a little better. Anne Parker the consultant aid that it was unusual to get an infection so early. His leg pain is still really bad and Anne thinks it will ease as the last of his bone marrow dies. His platelets were very high. They would expect them to be very low but she thought it was his old bone marrow putting all its effort into doing something about the infection. 

So far the rest of the day has been uneventful thankfully. Roger has slept and snored and I have done my tapestry. I have been well supplied with tea and bisuits and a hospital Xmas dinner! He is pretty doped up to stop his leg pain.

  

  
24th December 2015: Day 1

They sent me for a shower but after a short while they came to my room and told me they were going to transfer Roger to the new hospital to the high dependency unit. They were concerned that they would not be able to give him more oxygen if he needed more and also what the cause of the agitation. A shock and scary. I went over a taxi. He has an infection in his lungs, a large amount of water retained around his lungs, and his kidneys are not functioning that well. Here he will have one to one care from Mary. Finally mid afternoon he managed to nod off. But was still fitful.

It was a very emotional day Roger was convinced he was dying and if he wasn’t he wanted too. He said how much he loved me. And I love him so much too. We are going to get through this and come out to play in the mountains again. 

The consultant said they were not worried about him which was helpful but not much. A very scary day. I got a taxi back to the other hospital and my room at about 8pm and by 9.30 was asleep.  

  

23rd December 2015: Day 0

A later start for me today as I didn’t get up until 8am. Sue has been and gone down to give her cells and Roger is asleep. I haven’t spoken to him yest this morning and it is alter 9.30. He had a better night and has eaten some breakfast. After yesterday I expect the needs to sleep. He is having all his protective drips just now then they are waiting for platelets once he has had those he can have a shower. 

He is having the platelets just now after more leg pain, a morphine injection and a fusilli drip for water retention. 

This day turned out badly at the end. We were both up all night with Roger very agitated and unable to settle. Hardest day yet. 

   
    
    
 22nd December 2015: Day -1

7.30 Been awake for an hour, wondering what today will bring, really hope Roger had a good night but fear he has not. I sent him a message but no reply. I think his iPad has logged off and need re logging. I will get breakfast and a shower and go along to see how he is. I think the last two days have been as bad as I thought they would be but doesn’t make them any easier. 

Roger had a good night which was great but he a had a bad reaction to something and ended up on oxygen and was very weak. Went on all morning, we got him washed and I helped him do his mouth. His pulse is back ok, he has a has a small infection from his line but they are giving him antibiotics. His temperature has been ok and his pulse and blood pressure are back ok. We did his mouth twice today. 

I found the laundrette and did the washing so all the pj’s etc are clean. Got in a bit of a stress when I got back mostly cus I haven’t had any calm at all today. Just had a chat with mark on Skype which was good. 

The consultant came when I was there and said the intense bone pain was a symptom of myelofibrosis and it most likely would go away after the treatment. She was reassuring that all was going as the norm, some folk had less bad effects at this time but others worse. They have fitted a small scrape as they call it into his stomach to admister morphine as a drip hopefully to control the pain. 

I know it is irrational but I am so upset  that I was at the laundry when the dietitian, the Physio and the palatine care person came and when I got back I couldn’t get a proper tale from Roger about what happened and what they said because Sue was there. And I know that I have missed that chance now. And I don’t know why I find it so upsetting but do. I also missed the only part of the day when he was remotely coherent because as as soon as sue had gone they gave him a drip to ease the effect of the new chemo and he just drifted off into sleepiness and dopyness. But also I wanted to tell him about me but he isn’t with it so I couldn’t. And that is not reasonable to expect to be able to do that. But I needed him to know about my afternoon.

So after being almost asleep I for some reason started to think about it all again and I can’t sleep. It is really rubbish. After midnight and can’t sleep. A bad day

   
    
   
21st December 2015: Day -2

It is 8.30 and I am in Rogers room again. He had a bad night with leg pain and sickness and diarea, he wanted more clothes so I came along. They have given him some antibiotics and are monitoring him. His temperature is up and blood pressure low, and his pulse is a bit uneven. He is sleeping now. I am waiting because he wants a shower and they said to wait until they had done his stats again. I don’t really have anywhere else to go anyway. They said is was a bit early for him to get an infection but the doctors arrive at 9 so will come in then. There was a duty doctor that saw him at night.

I just wonder if it will delay his transplant at all and what happens if it does.

The end of the day now I am lay in bed, it has been a bit of a day that is for sure. In fact thinking back I can’t believe that this morning was only this morning. Roger never got a shower as just as he was about to the pain in his legs came on again. We had to wait for the consultant to come round but she did come to him first so he didn’t have to wait too long. She said she would prescribe a type of morphine that is taken orally. But he was not to take the paracetamol as it would mask his temperature. It worked a bit but the leg pain came back. We managed to get across the serverty of it in the end and his morphine dose was increased and he was allowed paracetamol again. Actually I don’t think I can remember or describe everything. It was just a bad day for him. His heart has developed a flutter as a result of the temperature. Then the last chemotherapy drug which is the imosurpressant  gave him really bad shivers and a temperature again. He hasn’t eaten much. I left at about 11pm just as the doctor was going to give him something for his irregular heart beat. I hope he has a good night and I hope I sleep then it will be morning quicker. 

Other news Sue and I went to maggies for a cuppa tea and to eat hour lunch. We went to sainsbury’s to get yoghurt etc and had fish and chips at the pond hotel. To add to everything there has been a huge kerfuffke with mum which I am not even beginning to go into. I hope we have a better day tomorrow. 
      
 20th December 2015: Day-3

Roger has leg pain this morning but the nurse gave him something for it and it seams to have gone fairly quickly. He looked quite strained this morning not surprising really. We went for a little walk down the ward corridor and into the main corridor stopped to look out the window and then went in the friends place where they made up a cup of tea and a kitkat. But before we could drink it we were fetched back to the ward for Roger to start his drips. Shortly after I left him to have a sleep. Had a nice FaceTime chat with Joe……woke him up! 

Then went out on a little adventure to sainsburys and M&S . Not far and I got parked ok. Got a foam topped for my bed as it was seriously hard! Got lost coming back and was really stressed. The traffic is mental. Back in Rogers room now. He is sleeping and I may do a bit of my tapestry. It is so good having my room. I think if I lose it I will have a complete meltdown. They are going to give Roger another drug as he is retaining too much fluid now. But he seems more comfortable than this morning. 

It has been a harder day for Roger today he has three lots of sever leg pain but each time paracetamol seemed to sort it out. The last one came a he was going to have a shower just after the fluid retention drug I’ve finished. It seemed to make him feel a bit worse. He had an early evening sleep then we watched a bit of telly, sports personality of the year and top gear in the Arctic. He has not been eating as well today but had some smoothie and a yoghurt. I think it was a live one must try and find some none love ones tomorrow. He was OK as l left him for the night. I did a lot of my tapestry today. Tomorrow is the last day of the chemo. 

        
19th December 2015: Day -4

I have done well today and not cried once. I slept pretty most solidly for 6 hours and then had a FaceTime with Joe. Which was nice. I took my time had a shower and put on yesterday’s clothes and went in search of breakfast. Roger had kept me some milk and I had cereal and a nurse got me a tea as the cafe was shut – weekend. Roger had a good night and but said he felt a bit worse than yesterday. His tongue is getting a bit fungal and he said his chest was a bit tight. He did seem tired so I left him to sleep and went back to collect my stuff from sue and Chris’ and get some washing done. Sue made me a nice lunch and the district nurse came while I was there to give sue her injections. Took three journeys to get everything up to my room! When I got back Roger had had a restless day. He was still fidgety all evening, he had achy legs. We went for a walk up and down the coridor and he had a look at my room. He is still feeling ok. His kidney function was better today so he didn’t have to have a saline drip. Which he did yesterday. Today it feels possible to get through this. Yesterday it felt totally impossible so a better day. The night nurse gave me toast again tonight. 

  
18th December 2015: Day -5

Up now had a cuppa tea still feel pretty low but I am tired. Just got a knot in my stomach and I keep crying more jut tears keep flowing no I can’t stop them, not helpful but can’t help it. It just feels impossible to get through this. Roger face timed and it perked me up a bit. I made soup, smoothies and coffee and by the time I had sorted out and been to sainsburys for supply’s and petrol it was 1pm before I got to the hospital. After a long it’s in the car and chat to sue daws. I decided that it was definetly not a good idea to go to Kendal. I think that car sit was my worst point so far because it all feels impossible. The traveling is just to much. Once I had pulled myself together I went to ask about the room. My dilemma was that I needed to make good for Roger but actually he is managing to eat the food so far his mouth has not got sore yet. Anyway there is a room free and it is great. It has a fridge, kettle and shower room. I decided to borrow a toothbrush from Roger and stay. I then felt overwhelming tiredness. We had a good evening watching the best exotic marigold hotel. I got a better nights sleep. Roger seems ok so far. He said he feels better than he thought he would at this point.  

    
 17th December 2016: Day-6

Today has been a long day, settling in at Sues and getting organised for he visit. Needed to go to Tesco to get milk for the mans milky coffe and got stuff for parsnip soup tomorrow.then back to make smoothie and etc. Sue sorted out a telly for Roger I did have a Skype with him first. He didn’t sleep that well the fan was noisy and the air con a bit chilly. Went to get pj bottoms from Fort Kinaird what a place. Got what I needed just. Arrived at the hospital hungry went down for a sandwich no sandwiches and then the fire alarm went off and they wouldn’t let me back in.. Felt a bit desperate. Just sat in the car and cried. Over reaction I now but there you go. Not sure how I will cope with this really except that I have no choice. Anyway managed to get myself together. Not much else to say couldn’t get the telly working. Rushed back for 8pm to eat with sue an Chris but was all a bit much really. Tomorrow I will come back later and have soup. Wrapped Mary’s present and Chris will post it. Put washing in. Going to sleep soon. Just feel so sad. I guess we will get into a routine. 

   
   

16th December 2016: Day-7

Writing this a day later it seems ages ago. We set of from sue and Chris’ after a fairly slow start. The traffic was pretty busy but the rush hour was finished. I woke up with a sinking feeling and I must say Roger seems more adjusted to the whole thing than me. It is true that I feel it is the end of my life that I loved and who knows what will replace it but I don’t feel it will be as good but maybe it will. Be good to just come out the other end. We arrived and got suck in the air lock not a good start but then the room wasn’t ready so we went for a coffee and a bit of a wander. Saw maggies which was lovely darling – very arty and nice. 

Once in the room the day went fairly quickly with lots of people coming to see Roger. Everyone was lovely. Got back to sue and Chris’ shattered and slept badly.

   
   
15th December 2016

A very early start for us as we had to be at Raigmore for 7.30. Which we were…a cold start too minus 2 and the 6 inches of snow still on the ground from Sunday night. All went well and Roger was ready to go home by 11.30am which was good timing as I had just finished all the shopping and bits and pieces in town by then. We decided to come down early and stay at sue and Chris’ tonight so we didn’t need such an early start tomorrow. The dog was pleased to see us.   

    
   

14th December 2016

Today starts our great big adventure, not on the mountains this time – they are waiting for us. The day started with snow! We are almost packed for Glasgow on Wednesday but first we have an early start tomorrow. Roger will have his Hickman line put in in Inverness. And I shall be hanging around and doing last minute shopping.