Hair today - going soon

Seemed quite a busy packed week as usual and so still not getting done some of the memory book stuff done that I desparately need to do. I have been doing the Order of Thanksgiving Service and trying ot get quotes for that and trying to sort out when we can get carer’s allowance. The DWP need 2-3 monthly wage slips sp that means we are without that money for that length of time. I know they will back date it and the HR at Pete’s work won’t write a letter confirming that he is doing only 16 hours a week and what is hourly wage is. He also needs a new contract so having felt that the HR in the NHS was slow, the HR at John Lewis seem even worse - probably just down to a single person but since the warehouse are being so good it seems a shame that the department that are there to support you are not doing it.
Am writing this on the computer upstairs so am not connected to the internet so taking a guess where I finished off last time so sorry if I repeat myself.
Monday seemed to have one visitor after another which was lovely but confusing and quite tiring in the end. My friend came to do the ironing which was great. Then the hospice nurse came and then the carer’s supervisor came to do a risk assessment of the house and I suppose if I posed a risk so signed all these forms.
Then I had to collect AJ from school which wasn’t expecting to do this term but my friend is on holiday and hoping she had better weather than we did here.
Tuesday - had to be up early as the new carer was coming at 8am to help me have a shower. She was lovely and so am pleased that I will be able to have a shower more than once a week. Not too much hair came out this time but my hair is getting very dry as is my hand and feet again. I don’t understand why this chemo has this sort of effect on me. I really hope my nails stay on. I gave up with the dark nail varnish as it just falls off all the time and anyway surely the nailbed is deep down under the skin and that is where the main blood supply is so the chemo must be working on the growing cells of the nails there as well as all right way up.
I went to the hospice in the morning and got my 2005 wig cut as it was so long at the front. I’ve given up with the thought of the wearing the red 2006 one after Pete said I bore an uncanny resemblance to Esther Rantzen which was not the look I was after. It is a shame as the actual style is good.
I got my nails painted a sort of browny colour which is more like my style. I bought a Simpson’s Cluedo set and a small table football set there so that helps to fund the hospice. I also had aromatherapy on my feet and legs but ran out of time for the reiki so must try that next week again.
I then went to Sainsbury’s to buy food for me to try to get myself to eat more as I know I’m losing weight still. Got very tempted and succumbed to buying new clothes. Think I now have enough trousers and one skirt should be enough but may look in Matalan as can’t see anything in Peacocks or QS and am so reluctant to go back to Primark but I still have £25 voucher to spend there so may buy need to winter coats for the children. By this stage, the trolley was heavy and a really nice assistant helped me by pushing the trolley to the tills and taking the trolley to the car and putting it all in the car. By this stage, it was time to pick AJ up and it was raining hard. I picked him up and set off to look for the twins. We couldn’t find them anywhere and by this time, I thought they would be at home. At 4pm, they still weren’t back so went off out again and found them near the house absolutely soaked through apart from Woody’s shoes which seem totally waterproof.
I made a wonderful choice at Sainsburys - a crème brulee where you put the brown sugar on and caramelise it yourself. It was so delicious.
Got a very distressing text from one of my friends who said they have now found multiple brain tumours at the front of her brain which explains why her vision is so bad but of course means she can’t ever drive again. We are going off to see her later in the month and have the train ticket so she is desparate to see us like we are desparate to see her. We will meet up somewhere even if it is when she is in hospital. We can share a taxi to wherever she is - we need to see each other. Think we will have a shock at how we’ve all changed as it is nearly a year since we’ve all been together.
Wednesday - I had to cancel my domestic and shopping help as I went off to West Sussex to meet up with some other secondary breast cancer ladies. I got a train to Esher and then a friend took me to the house where we were meeting. She has kindly given me all her wigs and scarves so will return them to her or the wig bank when I have finished with them. There was only 5 of us but it was worth it. I really surprised myself as I managed to eat some lasagne. It was a sloppy lasagne with plenty of red wine in and was so delicious and wonderful to eat proper food again. She had also made an apple sponge and almond pudding which I could manage especially with double cream made from Guernsey and Jersey cream and a raspberry mousse again made with cream.
The journey home was quick as I didn’t have to wait inbetween trains but did have a rather rushed walk between trains and didn’t think I would make it but I did and got a seat without a problem. The problem was with my legs. They seemed to have lost all their strength. I got stuck on the waiting room seats and then couldn’t get the necessary push up to get on the train or in the taxi home. It was rather scary and I don’t why I had become so weak. It must have been the length of time I was out as I was not expending energy when I was there and it wasn’t far to walk at the station but I didn’t have my legs up all day and so my ankles were quite swollen when I got home.
The children and I had great fun trying on all the wigs and hats. Laura built a beehive on top of her head and said she was Amy Winehouse - it looked hilarious anyway. AJ tried them all on and Woody tried the long wig on and looked all coy so got loads of pictures of them and me on the camera. We hadn’t giggled like that for ages. Laura was also playing with the scarves and could do a really good impression of Rapunzel saying ’Rapunzel, Rapunzel, let down your hair’ and letting a brown scarf fall fro the top of her head. We will have to treat them with a bit more respect I think.
I got another distressing text that night. One of my friends who is 43 or thereabouts has had a ministroke. She is out of hospital now and said to be OK but gave me a shock and I’m sure everyone else as well as herself and her partner and family. Feeling very guilty as not sent her a card or anything yet - will have to put that on my urgent list to do. If you are reading this - I don’t have your home email address and I send you my love and hope you are getting better and I will write to you. If anyone else knows who I mean and has her home email address, can they send it to me please. I have her home address.
I was good and had another of those high energy drinks that night.
Thursday - got a lift and company from a new friend which was lovely for my session of the taxol chemo. My visit got off to a bad start as I’d lost 5kg in a week which was a shock. I knew I’d lost weight but not that much as my belt was now on the 5th hole and not the 3rd anymore. Must have been the energy I expended on going to West Sussex.
The chief oncologist was not happy with me as not only had my weight gone down by rather a lot but it had the knock on effect of making me anaemic again and rather worryingly my blood protein levels had dropped to 25 from the 31-33 it had been at for the last 6 months or so. It should be at least 35. I didn’t even look at my liver function tests but my kidney function (creatinine) was normal which it hadn’t been for ages. I had to persuade him to give me the chemo and promised I would have more fortisips as they are high in protein and write a food diary. I think I’ve got so sick of soup etc that I’ve given up eating especially on my own. This week has not been helped by the continual diarorrhea and the continual acid reflux I’ve had. I found out that the stomach protector that I’ve been taking since I was in the hospice causes diarrhoea so am going to go back on the other one I took before as it worked better and I can take one morning and evening if needed. I think I need you all to text me to remind me to have my hi energy drinks and to try to eat more at lunch time. I ate all my soup from the hospital canteen and ate most of the sponge pudding and custard as well and did have a fortisip as well.
My friend had to go half way through my chemo and I fell asleep so didn’t notice that the taxol was only a quarter way through when it should have finished and Pete had arrived to take me home. The trouble is if they speed it up too much it makes you feel sick so after having a 1030am appointment we didn’t get home till 5pm again. I didn’t feel sick but was really troubled by acid reflux, I will be glad that I can go back on the other tablets.
I had some more of the lasagne as my friend had given me some to take home and I had the extra high protein drink and a crème brulee.
The real reason why I pushed so hard to have the chemo is that I’d rather miss next week’s chemo as we are off to the Goodwood Revival on the Saturday and often don’t feel that great on that day. The GP said I was determined and stubborn but he forgot to say I was devious!!!
Friday - was my second shower of the week. This time loads of hair fell out. I hand washed all the wigs and dried them on the washing line which looked quite odd. Once dried, I tried them all on. One has been ruined by someone cutting the fringe too short and very uneven. That wig is quite long and I think I made the right decision to have my long hair cut off at the age of 12 as I really don’t seem to suit long hair. There are some lovely wigs there and I hope I can wear them this time. If not, there are some lovely hats and scarves there plus the 2 hats I’ve bought already.
I actually felt I could try some different food today so had one of the home grown apples I’d bought back from West Sussex. It was so delicious and tasted even better than a shop bought organic one. I even managed some cheese and biscuits so was pleased and a cream doughnut!!! Life seems not to be dominated by the thought of food again and the diarrhoea has stopped so must have been the antacid tablets and not the taxol causing that then.
I went to see a printer about the Order of service printed. She took the details but couldn’t quote a price as the main man was away. They are convenient but the other printer in town seemed on the phone to know more what I was after and could give me a price. Strange thing was the printing people I saw today wanted the background picture in portrait when I thought as it was over 2 pages landscape would be best. Will have to print out 2 pictures and load them onto the CD. I couldn’t get Vista to do the service sheet in 2 halves of landscape so ended up doing half a sheet and gluing it all together. Will have to have another go or do it on powerpoint or something. If anyone wants to volunteer to set it up for me on our laptop so I can do it all on one sheet I would be grateful.
We’ve just found that poor AJ who despite being 8 has not lost a single tooth yet, is having the same problem with his teeth that Woody has. Meaning we can see 2 adult teeth coming up behind his baby teeth at the bottom. He thinks the front 2 are wobbling a bit but we see the dentist again in about 6 weeks so se what she says. It is going to be very traumatic and long winded it both boys have to have their baby teeth pulled out each time and is going to increase their chances of more orthodontic treatment.
Friday felt a good day despite doing the crematorium sheet and that evening even managed to eat some fish and a few chips. A friend came round so we all ate together and arranged for her daughter to sleep over and for her to give me a lift to my friends for a girls night in. I ate some porridge first and then had 2 glasses of wine and some peanuts. What a strange mixture!!!
Some other people have offered to help me which is good to know but I didn’t go to bed till 1am which was rather late.
Saturday - Woody had football practice and I got up late and had a late breakfast. Laura had had a friend over to sleep so none of us got dressed till about 11am. After Woody got back, we went on a mission to return all the crockery and pots we’d accumulated and to put more invites out for the Macmillan biggest coffee morning event. I’ve decided to do a wine and nibbles party on Tuesday 23rd night and a coffee and cake morning on the Friday so do come if I’ve forgotten to invite you but please let me know which day so I know what food, drink I need. After this, we went shopping and bought rather a lot of food. I really notice the price increase now in food as I don’t shop that often.
After this I had lunch of apple, cheese and biscuits again and then went to bed for a couple of hours before eating a risotto and a chocolate hobnob with my tea. It is so wonderful to be able to eat real food and not mushed puree all the time. Don’t know how long it will last for but must make the most of it and so going away for a few days seems feasible now and something I want to do. Just wish it would improve my breathing more. Eating solid food fills me up more so seem to be eating less but feeling fuller for longer and it is so wonderful to have a variety of food textures and different foods. Will now have to eat something more with all this writing about food despite how late it is.
My hair keeps dropping onto the keyboard. Think it will be touch and go if I have my own hair on Saturday but suppose if wearing fancy dress, a wig won’t go amiss. Since I’ve washed the wigs I still need to wash the scarves but they are all hand wash so will have to wait for tomorrow now to do that.
All in all feel more cheerful which is down to the eating.
Tomorrow, Pete is definitely taking Woody to some motor racing along with his brother and elder son. Not sure what I will do with Laura and AJ but usually they are good at entertaining themselves and as long as the weather is dry we can go out somewhere for a little while. Have recharged the scooter’s battery in case we go out for longer. Just hope feel better than I did last Sunday.
Sorry about the length of post. Keep meaning to put in a little each day which would make more sense and bore you all less and be more accurate in how I actually feel each day. I seem to forget how my emotions feel when I do a weeks blog at a time so you get a false impression how I really feel and give you all the impression that I’m coping better than I’m probably am.
Going to bed now and in morning will have to see if I can remember how to transfer data from this computer to the one connected to the internet saved in a readable format and how much hair I’ve got left. For some reason it seems to fall out more at night and it’s not just the friction of hair on pillow as at present my head is not resting on any pillow and my hair is just steadily dropping out.