The mysteries of Mo

December 1st 2011

2011-12-01T22:42:32Z

It is with deep sadness and regret to let you know Mo passed away suddenly at St Michaels Hospice on Sunday 20th November 2011. As you all know Mo was a very big part of my life and for everyone who has been following my blog throughout, a tiny part of your lives. She has left a massive hole in both her family and friends lives and over time our memories of Mo will very slowly repair that void that she has left. I would like to personally thank all the Nursing staff and Doctors at St Michaels Hospice in Hastings for their continual care for Mo during her time there which Paul, Ewa and myself appreciate from the bottom of our hearts. I have posted a tribute on my facebook page along with a picture of Mo, the love of my life.Thank you all for the support and friendship you have given me over the last few months. God bless Brian (bjay66) xxx

November 18th 2011

2011-12-01T13:57:01Z

I found visiting Mo very tough today I was ok when I arrived she was having her nails done, sitting up in the 'special chair' quite happy and contented. It wasn't until later on I started to get upset when thoughts of Mo dying entered my head. Just the thought of Mo not being around, the thought of what am I going to do without her on my own. The trouble is the more you think about it the more upset you become and the more Mo sees that sadness. I think the turning point of me becoming upset was when Mo said to one of the nurses "I'm not feeling well", the tears just came. Even now as I'm writing this blog I can feel me getting upset again and the tears returning. Every now and again while I was with Mo today, she would just look at me through her sore eyes and you could see the sadness in her eyes because I was getting upset. Its so hard to remain upbeat and cheerful-ish everyday, there are going to be days when the cracks begin to show and I think Mo appreciates the honesty and overwhelming feeling of love between us when the mask slips. Mo and I had an emotional chat today she remembered we had been together 11 years, we mentioned about how sad we were going to be when Mo does go. She was particularly worried about Paul her son, no surprise really they are very close. Mo said to me that its been hard for us both and I got tearful again Mo tried to touch my face but she found it hard so she reassuringly managed to touch my arm, tears again. I went to go so the nurses could put Mo back but found I just couldn't leave her I said "how am I going to cope without you?", and that I wasn't ready to give her up, selfish I know I just can't at the present. I asked Mo to keep fighting and not give up and I shouldn't of done!! , Mo nodded and I eventually managed to let the nurses put Mo back in the bed. I just burst into tears and went out into the hall the ward sister saw me crying and said "tough day?",your not joking I thought and she tried to comfort me. I said "just popping outside for 5 mins, please let me back in" the ward sister nodded and I went outside in the garden. While I was in the garden I continued to cry even more so outside.
Somehow I managed to pull myself together and went back in to see Mo and she was asleep, probably emotionally drained like me. I just stood in the doorway for twenty minutes just watching Mo sleep, watching every breath to reassure myself it wasn't her last then I left still very upset and tearful. Today I had a glimpse of how it was going to be when Mo leaves us, it was very sad, very heartbreaking, very tearful, very emotional, frightening and absolutely horrible and unfortunately very inevitable.

November 16th 2011

2011-11-20T00:25:42Z

Mo's been in St Michaels Hospice for a month now, I don't know where the time has gone even though it seems a lot longer. In the strangest and unlikeliest of ways Mo is improving every day, well most days, there are still 'bad days' but thats the 'nature of the beast' I guess, even the doctors and nurses don't know what to think sometimes and they have seen everything. Mo has even managed to converse with the doctor, for the first time since she's been here which he was pleased about. Even with all this positivity with Mo everyone remains realistic and has to take everyday as it comes, 'todays a good day' for tomorrow may not be because everything can change in an instant, thats the unpredictability of any Cancer. Its a lot harder for family and friends to ride this emotional rollercoaster and to get off this particular ride because of their emotional attachment to Mo, doctors and nurses have the choice of not going on the ride, we don't!. If there is enough emotional support for each other it 'cushions' the ride a little and its not such a rough ride for us all...hopefully!!

November 15th 2011

2011-11-20T00:21:55Z

I'm feeling a bit down today not really any reason Mo's doing fine, she's talking and interacting with the nurses, my mum and me on and off for most of the day. I think I'm just finding it difficult having to remind myself even though Mo's been great for nearly a week that she's still going to die. Mo just seems so far away from that point at the moment with the way she has been it justs makes things very hard for us all to realise or accept. Its very difficult to continually be upbeat and positive around Mo with that thought constantly at the back of your mind. Mo loves christmas and all the build up, the christmas fayres, the carol singing, the christmas concerts etc and there is going to be a fair amount of that at the hospice. I just don't want her to miss out on it all, maybe for the last time and also Mo's best friend, Carol is doing a gig here at the Day Centre at the end of November. I really would so much love Mo to see her gig as she loves hearing Carol sing and be here just for one more Christmas but there is no guarantee of that and it just makes it so much harder. At least for now Mo is talking a little and still here, tomorrow the nurses are hoping to get her out of bed and into a more portable 'special chair'. If Mo doesn't find it too uncomfortable I may be able to take her into the cafe area at the Hospice with Carol whose visiting tomorrow and have a cup of tea. I think Mo will enjoy the change of scenery from her rooms four walls, she may even do a little 'people watching' something Mo also enjoys. I guess we will have to wait and see if it happens, depends if Mo wants to and is able to and is up for it. I use to know what to expect when visiting Mo in the past, now I don't really know what to expect day in and day out, which isn't a bad thing. Unfortunately both the tumour and how Mo will be is a lot more unpredictable than it was and you still have that 'niggling doubt' at the back of your mind.....How long will it last??!!.

November 13th 2011

2011-11-15T23:47:51Z

Paul and Ewa visited Mo this morning as Ewa was due to go to work this afternoon, it always seem a longer day when you visit in the afternoon because you can't go in until 3pm. Mo was out of bed again today in the 'special chair' which was brilliant and as it was a nice day Paul and Ewa had managed to take Mo out onto the balcony area in the sunshine. I only knew this because Paul had sent me a text letting me know as I had texted him to see how Mo was, saves me ringing the nurse station I guess. I have been wanting to get Mo out there myself for ages, no need to now lol. Three 'o' clock came round and I went in to see Mo she was still in the chair, I also managed to see Paul and Ewa as they left and spoke to them, well Paul actually, Ewa still seemed to have the hump with me about the feeding fiasco. I cant really be bothered about it now I apologised at the time and it seems so trivial, Mo is my main focus, petty bickering isn't. Anyway Mo wanted to go back in bed, she had enough of sitting in the chair and wanted to have a freshen up as she felt a bit sweaty so I called the nurses and while they moved Mo and freshened her up I went and sat in the reception area until they had finished. I went back in for a little while and then Jez turned up to see Mo and she was very pleased to see him as it was the first time he had visited. Jez had been meaning to visit for a while but unfortunately like some others he finds visiting people in hospital or even a hospice very difficult but I was really glad he had managed to come. Jez didn't stay for too long, but long enough which Mo appreciated because she knew how he felt, and like anybody you run out of things to say. Jez gave Mo a kiss and then he left I stayed for a bit longer until Mo felt tired and stopped interacting with me then I left. Now I had an incline in to how Paul had felt over the last few evenings when he visited when all Mo did was smile a few times and drift in and out of sleep and hardly saying anything. Everyday events regardless of what they were just made Mo very tired and less interactive which wasn't that surprising really.

November 11th 2011

2011-11-15T23:45:50Z

I arrived at the Hospice about 10-10.30 and for the first time I had to wait for a nurse to come and get me and take me to Mo, the reason I had to wait was because Mo was having a bath!!??. Talk about cliches, 'ups and downs',peaks and troughs,a rollercoaster ride, Jo the nurse-in-charge came and got me and even apologised for keeping me waiting and took me into Mo. I went in and Mo was sitting up in bed with a towel behind her head as her hair was still wet, apparently Mo wanted to let her hair dry that way even though the nurses did offer to dry it for her. "I hear youv'e had a bath and your hair washed?" I said to Mo, "Yes it was lovely,nice and hot and I had a jacuzzi too" Mo replied, not all at once obviously but during the time I was visiting. The only problem with Mo is once she's had a bath she gets tired, even at home she did before everything happened. I had bought my laptop in today so Mo could listen to some music, "Elvis or some classical?" I asked her, silly question really Elvis wins all the time so Mo listened to a bit of Elvis which she enjoyed. I had to skip one of the songs, 'Mama liked the roses' as it reminded Mo of her mum and makes her sad and we can't have that. We listened to the music for a little while longer and then I realised that I had brought up an Elvis film on dvd with me. Its been sitting at home still wrapped up and sealed for ages, we just never got around to actually watching it. "Did you fancy watching an Elvis film with me?" I asked Mo and she nodded her head so I tried to set it up on the tv as there was a dvd player in Mo's room. I eventually got it organised and then a nurse arrived with Mo's lunch and she also started to watch the film too while she gave Mo her lunch. Mo managed to eat quite a bit of her lunch it took a bit longer as every now and again she kept on watching the film, which was fine. After lunch Mo and I carried on watching the dvd for a little while and then I turned around to say something to Mo and she had fallen asleep. I tried to creep out without waking her but Mo stirred and saw me so I gave her a kiss and said that I would see her tomorrow.

November 10th 2011

2011-11-15T23:37:52Z

Today was a very good day Mo was up and out of the bed in a specialised chair and talking to everyone according to the nursing staff I spoke to when I rang this morning. Considering last night I was all ready to go up to the Hospice as I was really worried, this latest turn around is a 'bolt from the blue' I wasn't expecting the nurses to tell me THAT!.I went to meet my mum, all prepared to put her off today, ended up giving her some good news for a change. After being told what had happened with Mo this morning I decided to take my mum to Hailsham and spend some time with her and visit Mo later. My mum knew that I would be pre-occupied with Mo's latest development and not really that relaxed while we were out 'doing'. I hadn't said anything to give my mum that impression but she knew. "Look lets go up and see Mo now and go out at 1pm when Mo is resting" mum said, "I know what your like you will only worry and not want to miss out on Mo being up and out of bed". My mum was right, not for the first time but don't tell her that so we went up and visited Mo. I was very glad to see Mo up out of the bed and sitting in a chair,the chair was huge with all padding on it looked like a massive big armchair and she seemed quite comfortable. Mo sat in the chair for a fair amount of time,very chatty probably because she was sitting up, it allows her to breath a bit easier as she wasn't laying on her back. Unfortunately like with most things Mo was tiring and I had a word with the nurses and asked them to put her back in the bed,we gave Mo a kiss and said goodbye and left so the nurses could do what they needed to.

November 9th 2011 (pt2)

2011-11-15T00:10:09Z

I rang the Hospice tonight about 9.30-10.00pm as I do every night just to check that Mo's ok and settled for the night. I spoke to the Ward sister who was on the night shift, she said "Mo was settled and comfortable" no change there but I could sense there was a 'but' coming on. It did "but Mo isn't drinking as much tonight as she can't swallow very well I think the tumour is affecting her capability to remember how to swallow". Immediately I started to worry about this latest development,'what if Mo stops swallowing altogether','what can we do about it?','is this an indication of Mo going downhill more?', all these questions!, I WAS WORRIED!!. Because I was so worried I rang the Hospice back and asked the Ward sister if there was a doctor there and if there was could I speak to him, needed some answers yet again!. I was quite prepared to drive up to the hospice and see a doctor and check on Mo but the nurse said there was no doctor at the Hospice 24 hrs, all they had was an on-call doctor for emergencies only so I couldn't anyway. When I go to visit Mo tomorrow I will speak to the doctor and have a talk with him/her and see what options,if any, are available. It won't stop me worrying about it all night though, I may have to put my mum off tomorrow so that I can see a doctor asap. I realise things can change overnight with Mo but after the good day we had earlier on this is like being 'kicked in the nuts',metaphorically speaking,at least Mo doesn't seem to be that distressed by it all which is a good thing.

November 9th 2011

2011-11-15T00:07:06Z

Sue and I visited Mo today we had to wait 5-10 minutes as Mo was having her personal care, while we were waiting my mum turned up to. The nurses had said she was quite bright today, mum went to see Mo first as she had to go and do the charity card sales in the church down the town from 1pm-4pm today. Sue and I went to have a smoke so my mum had a bit of 'quality time' with Mo. Eventually we went in and got a big smile off Mo and loads of kisses!. While we were there a couple of times Mo said yes and no in response to direct questions and she kept looking at some roses Ewa had brought in "beautiful" Mo said more than once. Not many people would understand why it was such a 'big thing', a couple of words now and again but it is, especially for us. It takes a lot for Mo to say these words because of the tumour, its a big deal and hard for Mo to be able to say anything (windows of opportunity!!). For Sue to be able to see and hear Mo speak made her day and even more so when its in response to something she actually asked or said,Sue became quite emotional as did we all.
Lunch arrived and for a change Sue and I stayed while Mo was being fed, normally we go and have a cup of tea just in case its distracting. Mo had most of her soup, carrot and something!,and the nurse left to go and reheat her dinner, unfortunately Mo takes a little longer to eat now as her throat is a bit sore. "You didn't like that soup did you?" I asked Mo, she made a funny face and shook her head,"Why did you eat it then if you didn't like it you only had to somehow let us or the nurse know",judging from Mo's reaction she didn't know herself why she ate it. We told the nurse when she came back with Mo's reheated dinner,Mo didnt like the soup, we all laughed including Mo. For some reason only Mo knew she just went along with eating the soup, even though she hated it,what is she like!!. Mo also managed to eat some swede,mushy peas,mash and pureed casserole, any desert was always eaten by her. Jelly,mandarin oranges and cream was no exception she ate it all and would probably eaten some more if there was any more lol. Mo started to get tired, eating dinner or any meal always wears her out even more so now, Sue and I left so Mo could rest we both said to her "I love you" and both times she said "I love you too",fantastic, we both left on an emotional high today.

November 8th 2011

2011-11-15T00:01:58Z

I tried not to visit Mo today as it was 'Bill Tuesday' and Carol had texted me saying she would be visiting Mo about 11.30 so I was glad someone was visiting her this morning. As I was out doing the 'boring stuff' feeling quite positive Carol texted me again saying she was having a lovely time with Mo and she had a lot of kisses and hugs. Carol also told me that Mo's hair had been washed by the nurses and Mo was very pleased they had,Carol said it was the most relaxed she had seen Mo. In the text Carol asked if I could pick up some more shampoo,soap and tissues as Mo had run out of them which I did,I don't know last week when Carol was visiting Mo needed a toothbrush and now this week when Carols visiting again Mo needs some toiletries. I'm going to have to stop Carol visiting as I always get a shopping list when she's there with Mo,only kidding, Mo can have a whole trolley full of stuff if she needed it lol!! and I still wouldn't dream of stopping Carol visiting...ever. I picked up Mo's shopping list and took them to the Hospice I stayed with Mo for nearly two hours she was still very relaxed,smiley and bright then I left because I knew Paul was visiting for a bit of 'quality time' with his mum. I rang the Hospice about 9-30pm and spoke to the nurse as I do every evening just to check Mo was settled and ok and she said Mo was still awake which was suprising,normally she's tired and dropping off to sleep,not tonight Mo was watching a cookery programme on the television quite calmly and very settled. Something different I suppose but thats just the 'nature of the beast' you never know what to expect next.

November 6th 2011

2011-11-12T00:36:22Z

Arrived at the hospice about 10.45 and went in to speak to the nurses as I do every day just to get an update,Mo was a lot brighter this morning compared to the last couple of days,comfortable and relaxed the nurses told me. Mo had eaten some breakfast and the nurses had put the radio on for her,it was on some Christian music channel which Mo does like now and then,not really my cup of tea so I changed it.I doubt very much if it mattered what particular music was on at the time at least it breaks up the silence in the room,a little bit of normality has to be a good thing for Mo. Total silence is ok up to a point especially if your meditating,Mo's not likely to be doing any of that,but she has done in the past,somehting else thats not my 'cup of tea'.

November 4th 2011 (pt3)

2011-11-12T00:30:57Z

After earlier's unpleasantries Ewa had left and I stayed with Mo for a little longer but I was still quite upset and Ewa probably was too even though I did apologise to Ewa about me over reacting. Unfortunately tensions had been spilt on more than one occasion since everything had happened with Mo,another down side of any Cancer diagnosis I expect.I left the hospice and went home,well next door actually,Sue & Brian have been feeding me as well as keeping an eye on me,their support has been amazing and beyond the remit of any neighbour.I was very quiet during the evening,unusual for me, but I was still suprisingly upset by todays antics and I knew that Paul had been told about it so I was expecting a phone call. The PHONE CALL didnt come but a text did,briefly what it said was Don't take things out on Ewa she only wants to do what she can and personally I think mum eats more when Ewa feeds her. I was livid what total rubbish,so I sent a text back simply saying 'Call me', things needed to be said 'once again' I'm just sick of having to fight them both regarding Mo's care. A text came back 'Sorry mate a bit busy at present' which wound me up even more so I rang him. During a fairly emotive phone call I found out some things I didn't know,I didn't know that Ewa had been giving Mo her food on a regular basis when they visited in the evening and Mo wasn't worried about Ewa doing it at all,in fact she reacted well and even some of the nurses agreed. I didn't know Ewa only visited that particular morning because she had managed to get some time off to visit. I knew none of this when I visited earlier and I told Paul had I known what I do now we wouldn't of been having this conversation. I said to Paul "We haven't spoke to each other for a few days now about anything,How we were feeling?,How do we think Mo is doing? How do we think things are going?,nothing absolutely nothing","I know its been very hard for all of us but we need to communicate. We need to tell each other about our visits,let each other know by ringing or just a simple text if its easier about any changes in our visiting times, what Mo's done, how she is etc,communication is key and Paul eventually agreed with me. If the 'lines of communication' between Paul,Ewa and myself were kept open,if we had actually SPOKEN to each other no matter how briefly,if Ewa had TOLD me she was visiting this morning,if only Paul TOLD me about Ewa feeding Mo in the evenings,EVERYTHING that happened today could so easily of been AVOIDED and thats the 'real shame'!!

November 4th 2011 (pt2)

2011-11-12T00:27:35Z

As I mentioned earlier Ewa was at the Hospice which pissed me off straight away,I managed to keep my cool,momentarily,why u ask what happened. It was lunchtime and the staff were busy doing what they do serving lunches to the patients. I mentioned to Ewa that I would prefer it if the nurses fed Mo as she has got to know them and they tend to get a better response from her when feeding Mo. Being a professional they can also gauge how much Mo is willing to eat and when she doesn't want anymore or just doesn't like the food. "Why don't you want me to feed Mo?","I can't see it being a problem I have fed her before in the evening". I said that I just felt Mo may feel embarrassed or humiliated with you feeding her thats why I don't do it for the exact same reasons. Ewa continued arguing with me,"Can we talk out in the hall about this I'm not having this argument in front of Mo"I said,didn't happen. In the end I walked off the ward very upset and went to have a fag and a cup of tea to calm down with Sue and Lisa,who were also visiting at the time who Ewa also had upset. Before all this 'kicked off' and Sue and Lisa arrived Ewa was giving Mo a drink but she was holding the drink in her mouth and not swallowing for whatever reason. "You have to swallow it Mo or you might choke" Sue said,"Mo you have to swallow the water,dont keep in your mouth you will make it harder for yourself and hurt your throat more" Sue continued."Its ok Mo you swallow it when you want,take as long as you need theres no rush"Ewa said which just upset Sue even more and she had to leave the ward and Mo,otherwise Sue would of said something to Ewa. What Ewa doesn't seem to understand is that sometimes you have to be a bit tough and pushy with Mo to get her to do something,not very often but sometimes. Anyway I went back on the ward and found Ewa feeding Mo because the lunches had arrived,once again I tried to get Ewa to come outside and talk. By this time I was getting quite frustrated and cross with Ewa,"No,in a minute its Mos lunchtime now",and she carried on feeding Mo. Yet again I left the room and was even more upset than the last time and ended up crying all the way through the ground floor,passed all the bays and rooms. The nurses saw me and kept trying to ask me what was wrong,whats upset you, do you want to talk about it I just held up my hand indicating to them no just leave me alone. I found a room at the end of the ground floor and sat in there and just cried my eyes out because Ewa had upset me. I didn't actually go out into the reception area because,even though I was so upset I thought that it was nearing the rest period and that I wouldn't be able to get back in to Mo. Eventually the ward sister found me and asked me why I was upset,through the tears I told her that I got upset because Ewa was prepared to argue with me IN FRONT OF MO and she could hear everything that was going on and I could tell she got upset about it. Ewa didn't notice anything,point scoring was all she seemed to be worried about and totally ignoring how I felt about her feeding Mo. It wasn't REALLY about who was or wasnt giving Mo her lunch but the fact Ewa was prepared to argue with me in front of Mo,she wasn't worried at all about how Mo might of reacted,Mo's feelings or what she heard. Anyone else wouldn't of dreamed about ever doing that,upsetting and distressing Mo even more, shes had more than her fair share of that. As I have said before just because Mo is unable to respond at times doesn't mean she's not aware of whats going on around her day in and day out and she can't hear, whats also going on around her.

November 4th 2011

2011-11-12T00:15:45Z

Went to visit Mo today with Sue and Lisa,her daughter and when we got there Ewa was there too,no phone call or text to let me know about her visiting had I known we would of visited later or earlier so we could all have some 'quality time' with her. The nurses had put some laxative-type medication in some juice of Mo's to help her open her bowels. The enema fiasco yesterday wasn't doing as good a job as they had hoped so a 'plan B' was put into operation,spiking her juice lol. Unfortunately Mo somehow realised and was not eating or drinking much,so she had no reason to feel uncomfortable or produce an 'end product',well thats what the nurses and I thought may be happening,Mo can be a bit crafty like that!!!. All we can do now is wait and hope Mo's bowels do open eventually because it is a bit of a worry and Mo starts to eat and drink again as normally as possible.

November 3rd 2011

2011-11-09T22:04:24Z

I hadn't planned to visit Mo today had some things to do yet again down the town and I knew Carol was visiting Mo this morning. I wanted to buy some picture frames today because I had some photos of Mo in the garden at the Day Therapy Centre when they all had strawberries and cream. They were lovely photos of Mo smiling and all dressed up as it was her first visit to the centre and she was really looking forward to it. Happy Days!!. One thing she did say was that she felt a little overdressed on that first day and the next time she was going "I'm wearing tracksuit trousers and a jumper" she said, "I'm not doing that again". As I was having a cup of coffee and something to eat down the town Carol texted me from the Hospice,could I bring up a toothbrush for Mo apparently the nurses kept forgetting to ask me when I visited. Sure no problem now I had to visit Mo today,not that I minded, any excuse I guess lol!!.
It turned out that me having to visit Mo,toothbrush in hand,was a good thing the nurses were concerned about Mo's bowel functions or should I say lack of them. Since Mo had been in the Hospice her appetite had increased and she was eating a lot more,well I say a lot, more than she had done in a while. Mo was due to have a one-off injection to alleviate her constipation but unfortunately this specific injection had been discontinued and there was no alternative or replacement for it. The only other alternative was an enema and as this was an intimate course of action,uncomfortable and particularly unpleasant and the nurses needed to have Mo's consent or permission,or some indication that it was ok from her to do it. They had tried to get some kind of consent but they weren't entirely convinced of her response and asked me if I could try. After a fair amount of coaxing and reassurance from me Mo did indicate that it was ok for the nurses to administer the enema to help with her constipation. Because Mo was having bellyaches and there were concerns about possible health risks because of the amount of time Mo had been constipated,2-3 weeks the nurses came to prepare Mo straight away and I made a swift exit lol. About half an hour later I returned to Mo's room and she had been put her side in readiness I guess and the nurse asked me to try and keep Mo in that position,as best I could so I did. I also asked the nurses how long would it take for the enema to work,they said it could be very quickly or not depending on how constipated Mo was it was just a waiting game unfortunately.