Wednesday, 29 April 2009

It's Ok to Cry

I do know that but not over nothing. Must be me hormones....

Tuesday I found it a real effort to go to the CAFE group but I was motivated by knowing I would feel better for it. When I got back I had a card in the post from Rachel of the painting we saw in the Birmingham Museum January of Monte Civetta from Lake Alleghe by Elija Walton. This made me estatic as when I use meditation and mountains are mentioned this is what I was visulising before I had even seen it. The painiting in the museum is one awsome sight.

I had a Ultra sound scan Wednesday and Cruella hasn't grown but hasn't shrunk either. Will know more on Tuesday when I go for my blood test and pre assement appointment as to what changes may be made. Either change of drugs or surgery brought forward. I can't deal with the surgery details at the moment only the timings for practical reasons.

It was good when I got into work. It is lovely to see everyone and I managed some work as well. A small bit of normality surrounding the Hospital and Dr's appointments. Can tell when I start to feel better as I even bought a bottle of wine on my Asda trip and had a glass (ok 2 ) with dinner. Will have managed 2 and half days this week!

I have a mouth ulcer that is annoying me and is not responding to Anbesol so I am going to ring the Dr's to see if they can prescribe anything stronger. Any ideas welcome.

I am really looking forward to the weekend. Holly is off to her dad's for the weekend but Rachel and Laura are coming down. Saturday we are just staying here and chilling, may get Laura to finish the cleaning patio and mow the lawn. well ok it's worth a try :-) Sunday we are going on a day trip to North Devon so the sun better come out to play.
Hope everyone has a lovely weekend like I'm going to , have a good un


Monday, 27 April 2009

Summary of Chemo Round 2

Well I'm on Round 2 Day 12. I have noticed a difference from day 9 (Friday) onwards with tiredness and my nose has started to bleed, spots but bleeding all the same and as it's my blood I found the first episode traumatic. Please note the use of the word FIRST as I am cool with it now however I did phone the Hospital and burst out crying to them that my nose was bleeding but not horrendously and wanted to let them know and confirm what I would need to do.

I am sleeping ok now but some mornings I wake at 6am but then I managed to back to sleep Sunday morning and didnt get up till 9am. I am going to back to bed around 11.30 am and getting up around 1:30 - 2pmish. I dont like being in bed when Holly comes home from school.

Kerri came down from Worcester Saturday afternoon, laden with all things healthy (including Red wine as in small doses...) We also went into town and I bought another beanie hat and some more scarves. Kerri also bought me a lovely hat which I wore Sunday afternoon when I took Holly to her St Georges day parade with the Scout and Guide movement. We finished off the evening with a spot of Wii fit , and a chinese takeaway with Vern who popped in on his way back to Brackly from Minehead.

Today I was awake at 6am so started reading a book kerri brought with her called The Breast Cancer Book which i am finding very interesting. I have a similar outlook and humour as the author. Holly came in and joined me around 7.15am so we chatted for a while which was lovely. I had said to her I might not be up and she seemed pleased I was awake but at least didn't insist I take her to school.

My nose keeps spotting blood or clear liquid, my right cheek has a red patch on it with some spot type lumps and I felt better after my mid morning nap. I am managing to sleep without Z tabs which I feel better about. I am starting to remember my dreams at the moment, they had been quite for a while now but have started up again so will start to write them down.

All in all round 2 again was managable, more tired from day 9. I understand my bloods are at their lowest but was amazed at the difference and how quickly the changes were. I had been ravenous from Sunday , then Friday morning woke up feeling great and within 2 hours I had lost my appetite, nose bleeds, tearfullness and more tired. How quickly it all changed was frightning on it's own.

I am preparing to work this week and already arranging some holistic care for diffusing the anxiety and trauma of blood tests and chemo next week. Time flies...

Wednesday, 22 April 2009

Life is for Living

I keep having these wonderful powerful thoughts even when I successfully have an afternoon nap. I will have to start writing them down but on their own you'll think I'm bonkers. Ok you already think that!

On Monday I started an experiment. I have shaved my legs and we are going to see how quickly the hair grows back. Today is Wednesday and still no stubble. I have had to trim my finger nails and my hair on my head is still falling out so this doesn't make too much sense. Scientists out there answers on a postcard please... .

Tuesday at the CAFE group I had a foot massage and some reiki again. Always come away feeling relaxed. Popped into work quickly after lunch and explaining how meditation and Rekie works really well for me, Sara asked if I stayed quiet enough for meditation , have to admit i do surpise myself sometimes :-)

This morning started out with the Marmite jar jumping out at Holly and smashing everywhere. Luckily she didn't hurt herself and her stomach ache went away. Finished off today being at the cimema to see 17 Again.

Good news received about Colin, he is having limited side effects on his HD IL-2 treatment he started on Monday at The Christie in Manchester for his cancer. I am so relieved although I do appreciate like myself these are early days. Good news all the same.

The weird feeling in my mouth has disappeared, the smelly eruptions are still happening, still feeling tired and incredibly hungry and looks like I shall win the title for the first in our family to be bald...

Monday, 20 April 2009

Over 1 third of the way through my chemo treatment !

That really makes me feel good saying that. I still have bruises from chemo day last week and still going through the smelly C&D and weird feeling in my mouth has started.

Holly came back Friday, she’d had a fabulous time with her dad and family. She was really happy, took her younger sister and brother into her room for some snatched play time. She looked away initially when I changed to my wig but then couldn’t stop her playing with the scarves on my head. We had a good chat and watched a DVD before Pat & Co arrived for the weekend. I decided to stay at home Saturday as was tired. Holly went out with the rest of them to Combe Martin and had a lovely day. Spent Sunday morning out at Chothlestone Hill where we found the horses. I could have stayed there all day although I couldn’t believe how hungry I got. I couldn’t wait for my dinner when I got home and ate a load of crap then a big pate of Sunday dinner on top. I was starving. This led to a 2 hour or more marathon sleep so didn’t do DVD with Holly.

When Holly went to bed I had the old “I’m no feeling too well”. Anxiety about going to school the next day. Normally I would let her get in bed with me but I have such smelly eruptions at the moment she agreed to go to her own bed.

This morning she was no better, managed to get her to bring us up both a slice of toast and me a cup of Lemon Green Tea and there we were having breakfast in bed. I encouraged her to eat her toast and by the time I had had a shower and got ready for my Dr’s appt, she was still crying and her friends turned up at the door to walk to school with her. This usually stops the visual display of her not being well, but I still walked up to school with them sporting my beanie hat and scarf and had a word with Mr J. She came back happy but still poorly. Chirpy enough to tell me about her friend at school finding my blog, chirpy enough to check that I had worn my wig when her other friend had seen me in Asda, chirpy enough to give me a manicure and pedicure outside in the garden and show me her skipping skills, chirpy enough to go swimming….... umm apart from balding head, C&D, weird feeling in my mouth, anxiety about the unknown, almost normal…...

Wednesday, 15 April 2009

Chemo Round 2 day 1.

Oddly but thankfully, I went back to sleep this morning after waking up at too early again. Also I was not feeling anxious either. I must bring meditation into my regular routine. Went to work this morning before making my way to MPH. I wasn’t thinking of needles I was thinking of playing with scarves with Linda from the SCC. I was calm when I went in, there was a bit of wait due to the new computer system but I chatted to patients and relatives in the waiting room.

My nurse called me and off I went into a different room this time. She had another clinical assistant with her and I was taken to the end of the room where there was a bed and chair but quite spacious. They pulled a cubical curtain across and started asking me how I was feeling and want they could do to help diffuse the anxiety I displayed on round 1. They mentioned if I had asked for some medication, can’t remember the drug name, I told them the difference I felt after the complementary therapy I had received at the CAFÉ (Cancer Aid for Everyone) and that I was still feeling ok and wasn’t feeling too traumatised. She confirmed she was going to use my left hand and arranged the infusion machine accordingly. I asked if I could place my arm and pillow on the arm of the chair and this was ok. I was on a roll, feeling relaxed, everything to my left, I could look right what more could I ask for.

The nurse and assistant went off and came back after quite a while with another nurse that has to be present when I confirm my name and date of birth. At this point Linda pops her head through the door and waves at me. Great she’s found me and will come back when I’m less popular.

I didn’t see any of the drugs, they were covered in the tray. I plugged my ipod in and looked right. The nurse and assistant were brilliant, I didn’t even jump with the prick, I felt relieved. They were doing what ever it was they had to do but nurse voiced concern over having pricked a weak vein and the impact this was going to have on my treatment and asked me If I was ok she would prefer to have a stronger vein. I was feeling brave and said I was fine but I couldn’t believe it. Them upstairs, can see I’m not as traumatised as before, and I’ve diffused the anxiety successfully without drugs, but still want to keep me on my toes. Well I showed them and braved it out!!!

So two pricks on my hand it was, lovely chat followed as the syringes were administered and then it was on the machine. I was asked if I wanted lunch and I hadn’t eaten since breakfast, time was getting on so said yes please. I could see a couple of the other patients in the room and was inspired by another lady receiving an infusion, using the hand with the cannular in to complete her puzzle book. I was feeling brave, I lifted the cloth covering mine. umm not too bad, put it back down again. I built up my courage and started to move my fingers, umm not too bad. Getting super brave now, took off the cotton wool taped to 1st prick and moved fingers again. Whey hey well done me! This left me smiling. My nurse had changed, it was Suzanne from last time and she was pleased to see me not so traumatised. The only complaint I had was that my lunch hadn’t arrived and I was starting to feel shaky. Bless although the other HCA had chased it up, Suzanne found that the volunteer had placed it in the fridge so relief came and so did Linda. I checked it was ok to say there in the chair and eat my lunch and for Linda to show me how to best use the scarves. The HCA and other patient joined in and I even got a sale for MPH as she liked what I had brought with me and we had fun. All done, bought another scarf and beanie hat, as Linda had kindly returned the wig for me that I’m not keeping and took my payment and delivery note to the wig lady whilst I was eating my lunch. I just popped over to check all ok and it was and I drove myself home!

Mouth started to water not too bad, had a sleep, need to work out how I can sleep in the afternoon but not get to sleep at night time. Karen called round on way home, I shed a few tears but not from self pity this time, just felt tearful. Had a lovely chat made some tea and ate it and kept it down. Currently don’t feel to bad…

Holly comes home Friday, called Pat who reminded me I am 1/3 of the way through my treatment plan. This sounds good and doesn’t time fly.


Twas night before chemo round 2...

And the house definitely quiet as Holly at her dad’s.

Well what a day. My anxiousness has been building up since Thursday. Not sure whether this was the hair starting to fall out or the changes at work but hey I can’t ignore how I’m feeling even if I don’t understand why.

Have had a lovely Easter weekend spent at home with visitors dropping by. Laura lou arrived Wednesday, Lynne stayed over Thursday, Penny and Philip called in on Saturday and Sarah called in and stayed over Sunday night. Very relaxing, got some jobs done, courtesy of Laura lou. Went to see the ponies on the Quantocks Monday. Strangely I had afternoon naps on Sunday and Monday. I find this strange as I can’t get to sleep at night but happily cat nap in the afternoons. Having discussed this dilemma I agree with possible cause being the anxiety I feel is draining my energy therefore making me tired.

I went to work wearing my wig. It was nothing to worry about. It’s just a change.
The anxiety I felt this morning was diffused by the time I left the Somerset Cancer Aid for Everyone (CAFÉ). I was met by the lady who sat with me on my 1st round of chemo (Linda) and she recounted that day to the others at the drop in and we were all laughing. I then had a neck and shoulder massage, healing and meditation. Linda also arranged to come and find me tomorrow at the hospital and we will try some head scarves on and she will show me how to do this. I would never believe I could write this but I am looking forward to my chemo session tomorrow. It is going to be easier then my brother Colin’s chemo, I get a personal head dresser into the bargain. I have also bought a eye gel pad to use whilst I’m being pricked. I came out feeling pretty chipper and went back to work feeling totally relaxed. If ever I needed evidence about relaxation techniques diffusing anxiety attacks I need look no further. I have to bring this into my daily routine.

I went to the hospital this afternoon for my blood tests and pre-assment interview. Whilst in the oncology department I met a lady there whom I met at CAFÉ. We have had a chat. She has finished her chemo and she looks well. Will I be able to do better? I was called in to my tests and off I went looking for a powerful distraction as needles in my body causes me a problem. Extraction of blood was not too traumatic. I had fired of a line of questions to the nurse and had to let her know she could stop now the blood extraction had been completed. When I came out there was another couple from the café group. Seemed like a mini reunion. I didn’t have to wait for long and got called in to be seen by the pharmacist. We summarised my side effects -- Orange pee, nausea, fatigue, cold seats, hot flushes, constipation, diarreah, constipation, foul taste in my mouth, horrible smells escaping from my bum, enflamed skin stag on guard on the bowel exit, tiredness but all manageable and finally hair falling out. I know this is going to get accumulatively worse but I feel I have completed first round successfully. My bloods have dropped from the bench mark tests taken before I started my chemo, but it is within their ranges.

I’m pleased that I can go through to round to 2.
oh well here goes...

Friday, 10 April 2009


Hi All. Sorry not posted. I have been progressively bright but tired. Round 1 not too bad.

Been busy. I have instigated a referral to our local Hospice as an outpatient to receive complementary therapy. I met with another wig lady who was more then helpful then just the wigs. She’s given me contacts for well being clinics run for cancer patients so will give them a try as well

Went to group on Tuesday 31st March with Rachel, where I had a foot massage and meditation. Made sure Rachel got on the train home. Came home for my afternoon nap, Holly bounds in with “I’m not feeling very well so didn’t go to cook club” and subsequently didn’t want to go to school on Wednesday. We compromised and she went in after lunch.

I did eventually try a wig on in the house. Haven’t felt any enthusiasm to do this before. Karen and Chloe were saved when they popped round Tuesday, but Wednesday, after encouragement from lovely Irish wig lady, put on my wig to show Bianca, (who came down for a few days to pamper me). I was startled how brighter it looked when on not sure how that happened as it didn’t look that bright earlier.

Colin text me to check I was ok as hadn’t updated blog. See it works - takes all the pressure out of contacting everyone and I am pleased he’s taken up this idea. His treatment plan starts April 20th in Manchester. I will think of his treatment when I have round 2 of mine to distract me as mine is more pleasant. (Yes my chemo treatment is more pleasant)!

Thursday Bianca and I had a fabulous pampering day. The sun came out to support us which made me feel great. There is nothing like fresh sea air to blow the cobwebs away and make you feel better (even managed a number 2 toilet stop).

Bianca being here has been great for both myself and Holly. Thanks to all the McGarry’s, the boys for lending her to us and Bianca for being here. After our pampering on Thursday we did some spring cleaning on Friday. I have to mention the Hoover incident. Admittedly ours was on it’s way out however, after Bianca using it for a short time on Friday mine finally died. I changed the fuse, still dead, time for a new one. Who better to go Hoover shopping then with the girl that cannot live without her Hoover. We got one (which has been christened Bianca) and all was happy in the house again.

On Saturday 4th April after Bianca left I went to bed as I was just plain exhausted. With the help of half a z tab was able to get a few hours sleep. Holly, my lovely angel, had decided to get busy in the kitchen and made Fruit Smoothies and chocolate bunnies. The kitchen didn’t look too bad either bless her and she saved me a glass and brought that up to me in bed. When I felt better, off we went to pizza hut and then cinema to see Marley and me. We thoroughly enjoyed ourselves however I know it didn’t make up for her friend Luke not calling her to confirm their cinema outing...

Starting on Monday 6th April I went back into work around the appointments I had. I was anxious but it was great to see everyone and the anxiety soon went. I experienced some Reiki on Tuesday. Wednesday (Happy Anniversery Dave ) Laura lou came down on her own, and we arranged with my friend Alex to go to the cinema that evening. Unfortunately this was also the day that a skin tag that I have on my bum has progressively become inflamed causing me much discomfort. Thinking I was constipated again I took my senna and prune cube but the pain was getting on my nerves. Dr’s practice called to say my paperwork was ready for me to collect so I seized the opportunity to speak to the duty Dr who happily did a prescription for me for some Anugesic cream to relieve the pain and inflammation and Lactulose to soften the bowel contents. I was so happy what a service, went down and picked it up. Decided to go to the Asda pharmacy to get my prescription but they had no cream and asked if could I wait. I know I didn’t make the effort to phone the Dr’s but they had now given me hope and I wasn’t prepared to wait. The lovely pharmacist at Asda phoned the Pharmacy that I was going to next to check they had in stock what I needed!!! What another episode of fabulous customer service!!! Picked up Alex, went off to Sainsbury’s pharmacy. The pharmacist was concerned that the Lactulose would expire in June. Advised not too worried, being on chemo I suspect I would find it useful before the expiry date. I went to the ladies, applied cream, took potion and got the cinema before the film started.

What I hadn’t appreciated was that I was not constipated, my bowels just couldn’t empty with enflamed skin tag guarding the exit. Lactulose works very quickly, well certainly did in my case. I have never experienced such pain in my belly. I could feel the gas bubbling away but I wanted to watch the rest of the film. When it finished I did not hang around, I was almost doubled up in pain. Alex bless her offered me the use of her bathroom bit I declined and said I would be ok I just want my own bathroom and thankfully I made it. And Laura lou bless her cottons came in and passed me the cream to re apply as I had left this downstairs in my endeavour to relieve myself of my agony. Now there’s unconditional love ………

Thursday I was still in some pain but managed 2 number 2’s before leaving for work. Went to pub and enjoyed a pint of Guinness, medicinal purposes of course. Had a lovely evening, Lynne trooped up on route to Worcs however I realised I had not been imagining that I was moulting. I had been picking up hairs off my desk all day and my coat was covered. This morning Friday, I got my wigs out to show Lynne. A 2nd one had arrived but I hadn’t tried it on. Once I had tried both on I realised the 2nd wig was the one I was happier with. Fully resolved that I needed to book the hairdresser the next day as my hair was just getting on my nerves, picking it of my face, arms and food. Typical really, the day I need to get my hair cut, Good Friday everywhere is shut. And how lucky am I. Had 2 offers of help, Anne and Clair thank you both and thank you Anne for doing the honours. Salon a la Bebbingtons was not traumatic and I even had a bottle of cider thrown in. I know full well I would have sunk into self pity at a hairdressers but having friends around me taking the mickey, is what has helped me through today. When I feel a bit braver and got used to it I will post a picture of my Sinead O’Connor look. I am laughing as I’m stroking my hair and remembering when the venture scouts had their hair in a No 2 I used to do the same to them. Laura has called me uncle fester and asked me to put my wig on but she wouldn’t do the washing up so the wig stayed off and I started singing “Nothing compares to you”.

Evil Aunty Sue…