Knocked for six

I had my blood transfusion as planned on Tuesday, after doing very little over the Easter weekend, as I had very little energy.  I had hoped that I was going to be one of those lucky people who were going to skip up the corridor after my transfusion.  I wasn't.  The transfusion itself went ok, had a little bit of a reaction with temperature towards the end of the second bag of blood.  Other than that no real problems during my long day in hospital.
On the way home I started to feel uncomfortable, and really quite unwell.  By the time I got home and hubby took the dog out I took myself to bed with plenty of painkillers, in a fair amount of pain.  I almost took some of my morphine.  Hubby was quite worried.  I slept until well after 7.  I went downstairs then because I was bored and lonely.  I made myself as comfy as possible and sat and crocheted.  It has become my new feel good.  
I got up Wednesday morning feeling a bit better, made an appointment with my GP to talk about return to work.  Then I started to feel rough again.  and by the time I saw the GP I had pain to talk about.  It appears that my liver is so distended now that it is right across my stomach cavity and the pain was probably it pushing against my spleen.  No wonder I have struggled to eat.  The only suggestion, Morphine!  Have managed to avoid it again so far, the GP reckons I have a high pain threshold, she can't believe I am still avoiding the morphine.  Anyway she has agreed to me going back to work for an hour or two once a week.

Luckily I felt much better by Thursday and hubby took me to Weston Super Mare to see the sand sculptures.

The Seaquarium.

Followed by fish and chips on the front, it was lovely, I also came home hungry and had a sandwich, the first day in about two weeks that I ate three meals, only small ones but three anyway.

Friday I was lucky enough to have free VIP passes to the Exeter Food and Drink festival.  I ate loads, well breakfast before we went so I could take my cocktail of meds.  Then samples once we got there, then I had a hog roast roll for lunch, well most of one.  Of course I had to have ice cream.  More samples, and we bought some fantastic duck burgers at the festival so I had one of those with chips for tea.  Oh yes and thick milkshake and crisps for supper.  There was lots of walking up and down hills around the festival, so no wonder today I feel a bit uncomfortable, too much food? And rather tired, a bit too much up and down hill walking?

But a good couple of days, and I have to live and enjoy things while I can.  Hopefully we will get control and I will have plenty of time, but we have to be aware that it might not be the case.

Oh and my fab teacher and friend has found a friend who is willing to let me drive his classic Jaguar around a local air field, need to get myself fit for that.  Another thing to take off my bucket list.

It's all gone Pete Tong

Ok not everything.  Son in law has not let me down, I didn't really think he would, in the past I have had my doubts of course, no-one is good enough for my little girl.  But he has proved himself time and time again, and I love him like my own now.  

I had my treatment yesterday, that went ok, as treatment goes, but ... next week is now blown out of the water as far as my lovely relaxing few days away.  Tuesday is now going to be spent at hospital having a blood transfusion due to me being so anaemic.  I think this is the start of never being able to plan anything again as I was warned about.  We kept Wednesday free in case we had to take beautiful daughter for her hospital appointment and because of that hubby has booked dog into vets for vaccines (she has been unwell so the vet wouldn't do it yesterday).  On the plus side as long as I am well enough, we have a fantastic day with free VIP tickets at the Exeter Food Festival on Friday.   Followed by a haircut by my lovely hair dresser.  So here is hoping for good health and a few days out next week, not the relaxing couple of nights away with spa treatments and gentle strolls I had dreamed of, but it looks like that is what I will have to put up with until August, if I am well enough then.

Feeling like a selfish person

I feel awful today, my beautiful daughter went to the doctors a week or so ago with the change to a mole, thankfully because of my situation she has chased it up quickly.  She has a fast track appointment next week, it looks like her hubby can't take her.  I can't let her go on her own, she may not be allowed to drive home.  My issue, my feeling of selfishness comes from the fact that hubby and I were supposed to be taking a few relaxing days away, boy I need them.  Since my diagnosis we haven't had a proper holiday or a relaxing break.  I am in a treatment cycle again and have been allowed to go back to work for a few hours a week.  This means to go away again we are tied to school holidays again.  The next holiday, Whitsun is a treatment week, so no break that week.  After that it will be the summer holidays, now my problem with that is that the consultant is not overly optimistic, do you remember the it is time to prepare for the end appointment?  What if I am not well enough to travel my the summer, or worse?  How would hubby feel if he missed a last chance to take me away?  Now you and I know that the consultant is wrong, but the doubt seed has been planted in my head.  I am not planning anything very far ahead until I know if we can get some control.  I saw the consultant yesterday and told her I would shorten my targets, control first and then see what happens.  She seemed pleased with that but this treatment is just the 6.  What then?  She doesn't know yet there may be something else, maybe not.  What if not?  That will all have to wait until after the next scan, that could be another 7-9 weeks yet.  I feel much better than I did last week, but it is treatment today, and after the last one I was wiped out for several days.  I hope that my daughter's hubby remembers how important this is and tells his boss, I handed the baton of care over to him in October last year when he said "I do".  I hoped I had passed it to safe hands, please don't let me down.

Fabulous weekend in London and now struggling

 I wish I had found time to write this on Monday straight after my weekend away, I was still feeling amazing then.

I think I told you all I was a little worried about the trip, it was booked when I was feeling well, before my mastectomy in December, and a long time before that appointment.  Twelve of us got up at the crack of dawn on Friday to catch the 7.30am bus in Ilminster.  At least I didn't have to do anything for the three hour travelling time.  I took my cocktail of drugs before we left and then packed them.  It was a pretty good trip, not too many hold ups.  We arrived at Hammersmith and hopped on the tube for Covent Garden where our Travelodge was.  It was a fair stretch of a walk from the tube to Drury Lane the others walked at a reasonable pace, hubby wouldn't let me tow either of the suitcases.  The leader of our party had booked us an early booking for one room so that we could drop off all the bags.  We had a photo of all of us, well eleven of us on the bed, happy memories :).  I can't believe it didn't collapse.  
We headed off back to Covent Garden after that to have a wander and grab some lunch.  It was lovely we found a pub and had lunch, watching the world go by.  We ended up at the Apple Store in Covent Garden, I am not an Apple fan but the store is beautiful, it has fantastic architecture, and I should have photographed it.  After our wanderings we headed back to the Travelodge to book us all in to our own rooms, our room was perfect for a couple of nights, large and clean with a telly for distraction.  Hubby had a nap, I didn't manage to get off.  We arranged a time to meet and went to Bella Italia on the Strand for dinner.  I had never been before, we used Tesco vouchers to pay, so it didn't really cost us anything.  It was a bit of a celebration for hubby's birthday, one of the ladies with us, and the wedding anniversary of one the couples (44 years, what an achievement).  At the end of dinner, a cake and candles came out, and they were all embarrassed.    We stopped at a pub on the way back to the lodge had a chat, and the men took good care of me.  It was a bit of a long walk back to the lodge and when we got back I collapsed into bed quite happily.  I managed to sleep fairly well, better than at home.
After a good breakfast we headed into Regent Street.  A slow wander around Hamley's where of course I was treated to a bear, and a shopping bag, the lego models were fantastic.

Because we all had Bella vouchers left we headed to another Bella for lunch.  I will definitely go again, with vouchers.  We had also been to Carnaby Street, which was very trendy and I enjoyed it.  I loved the Doc Marten shop and the Vans shop.  There is a great pub there too called the Shakespeare Head, brilliant for watching the world go by.  

We headed back to the lodge, to rest (?) wash and get ready for the main event, We Will Rock You at the Dominion Theatre 

I had seen it on tour at Bristol when I was first diagnosed.  It was amazing at the Dominion though, it completely blew me away.  I smiled, I clapped and I cried.  The songs made me cry, Who Wants to Live Forever, Only the Good Die Young, and I cried when it finished, I didn't want it to finish.  I was still buzzing on our walk back so when we got back and everyone had a drink, I had hot chocolate to try to wind down.  Another reasonable nights sleep.  A good breakfast and off we went, again I wasn't allowed to help with the cases.  We wandered along embankment, saw the touristy bits, watched the changing of the guard at the museum, the horses were beautiful.

We had lunch in an all you can eat Chinese Buffet in Gerrard's Street, China Town, then back to the Shakespeare's Head and then the tube, and the coach.  It was a fabulous weekend. 

I arrived home to a lovely gift from an old school friend, another gorgeous bear, and a box of photos with beautiful slogans on, to just dip into when I need a lift.  My son of course was delighted to see me, as I was him, had lots of hugs before heading off to bed.

I expected to be shattered on Monday, but I felt really well, and even managed to walk the dog for a short block in the afternoon.  I was pleasantly surprised.  

That was until I woke up in agony at 3am on Tuesday the pain was all around my midriff and doubled me over.  I took some ibuprofen and tried to sleep.  When hubby got up in the morning I went downstairs took my cocktail and some Morphine, this was not something I wanted to start.  I went back to bed and sent a message to my girls who I was supposed to having lunch with.  I felt a little better when I got back up and so the girls came and got me.  They did look after me very well, and fuss rather a lot.  Maybe I should have stayed at home, but it was so good to see them.  I found once I got a comfortable position it wasn't too bad, it was moving that was the problem.  I of course kept my painkillers up all day.  The girls dropped me home, and were worried so rang my son to get him to check up on me.  I wouldn't let him come home though.  Hubby was due home within the hour.  I took more Morphine at bedtime, and this morning I am still struggling a bit, didn't manage all my breakfast, I can't wait till next week when I can have that next awful treatment, but in the long run it might help this awful feeling, as I am now struggling to eat and to drink a bit.  I am hoping it is just because I ate so much of the weekend and did so much that everything just has to settle down again.  I don't want to become reliant on Morphine, and I still have a lot of living to do.  Hubby has had his holiday approved so hopefully we can get a few relaxing days the week after treatment.   I am still hoping to get back to school for a few hours a week, but there is no way I could do it like this.  This treatment has to start working ... and soon.