Julesx2's blog

Tamoxifen

2009-08-15T10:44:37Z

Hi Have read on this site and others about the many side effects that Tamoxifen can cause. I have been quite lucky with this drug I think and have not had many effects. However I am struggling to cope with a problem back and am now beginning to wonder if this drug may in some way be contributing towards it. I have always had bother with my lower back but a month or so after starting Tamoxifen it flared up and I have probs bending. My mobility is not as good as it was in the sense I am now afraid to bend in the slightest as I feel my back "giving". On one occasion I bent down in the shop to pick something up of the shelf and all the support went and I ended up on the floor. I felt very silly. In the morning it is stiff and at its worst. Am like a little old lady sometimes. I have read about E464 I think it is, causing probs and am wondering if anyone else has had a similar prob and discovered it is the drug.I have talked to my onc nurse but she just said its possible. To make sure it was nothing more sinister she had my back x rayed as yet I have not heard back from her and she said she would et in touch if anything showed up. My next step is to approach my chemist and discuss the different makes of Tamoxifen with him and what he knows. I should also mention I am on Herceptin but as yet have not heard of this drug causing any side effects. Any help wouldbe greatly appreciated, Jules x

Occupational Health - here we go again.

2009-07-24T08:27:49Z

Am off to OH this morning to discuss a phased return to work again. Tried before the summer hols to get back but after being back for a few days came down with a bug wich floored me- I guess this has knocked my confidence. Still trying to be positive but some days its hard as I feel I will never get back to the way I was before my diagnosis. Ive come through the worst ( I hope ) so why is everything so difficult now? I keep telling myself its only a job but ..... Hey ho! Have had a moan now gonna pull myself together and get on with the rest of my day. Thanks for listening , Jules x

Return to work-struggling

2009-06-19T16:30:31Z

Hi Returned to work part time 3 weeks ago. Unfortunatly caught a tummy bug and was off Mon and Tuesday this week. Monday was to have been my first full day back, Tuesday I was just meant to be working in the morning. Said I would do full time next week as its the last week before the school holidays- Im a nursery nurse. I love my job and have missed it for the last year. Did a full day yesterday and today and am exhausted. Am struggling to cope with the physical side of my job and am wondering if any of you who have had a bi-lateral masectomy have found returning to work as challenging? Does it get easier? I am feeling quite down about it as I didnt think it would be as tiring. Am attending a chiropracter who is working on the back which is giving me a lot of bother. He tells me the other muscles in my back are compensating for the loss of the large ones which were used to reconstruct my new boobs. I am now wondering if I should be looking at working part time or will things get better? Everyone at work is very supportive. Feel like a bit of a moan but I guess I thought it would be easier returning to the routine. At least the weekend is here and I can have two days rest. Love to you all Jules x

Return to work

2009-06-01T20:25:18Z

Today was another milestone in my journey. After almost a years absence from work I finally returned today and am phasing back in to the daily routine over the next few weeks. What a welcome I got, from my work colleagues, from the children and from their parents (I am a nursery nurse) it was better than any medicine! For the last year my life has been taken up with treatments, hospital appointments and the turmoil of emotions that go hand in hand with cancer. To those of you at the beginning of your diagnosis or going through treatment , I wish you well and please remember - there is light at the end of the tunnel. Best wishes Jules x

Round 1

2009-03-02T19:17:34Z

Eleven days ago I was due my last chemo and all was going well till the day before when wham I came down with an infection- the third.I ve spent the last 11 days in hospital being pumped full of anitibiotics, sounds like a disaster but the good news is my oncologist decided first to remove my Hickman line which this time tests proved was infected and secondly not to give me the last dose of my chemo. She felt that on balance it wouldnt benefit me and would probably would result in my radiotherapy being delayed. The removal of my Hickman line was pretty painless , in fact I didnt realise it was out until the nurse told me.The most uncomfortable part was the administering of the local anaesthetic. I may well have another line put in after the radiotherapy as I still have a year of Herceptin to get and my veins are non existant.However Ill cross that bridge when I come to it. Im not sure how I feel at the mo. Delighted that the line is out and especially that my chemo is finished.In fact I could have hugged my oncologist that day and afterwards txt all and sundry my news. It sounds strange but although I know the chemo is by I cant quite believe its all over- at least this part is. And so in a few weeks the next part of my journey begins.5 weeks of radiotherapy. Il also start Tamoxifen.After that Herceptin. Its been a year now since I was first dx. A year in which Ive gained, not lost, 2 new boobs.A year in which Ive made new friends online and off.A year in which Ive had to cope with a rollercoaster of emotions. A year in which Ive realised how important the love and friendship of those in my life means to me, and how much I mean to them. Ive still got a way to go and the boxing gloves arnt off yet. However I feel Ive won round 1. Love and best wishes to you all Jules x

A "Guid" New Year

2008-12-24T14:07:49Z

Wishing everyone a happy christmas and a " guid" new year. Heres hoping 2009 is a better year for us all. Lots of love Jules x

Intercation of drugs

2008-12-10T20:31:45Z

Am still staggering about as if I have had one too many. However after blood tests I have been told the different chemo drugs I am being given are interacting with regular medication I have been taking for most of my life. So now after 20 years I have to decrease the dosage of my medication hopeing it will ease these side effects.Thanks to my oncologist who gave me a thorough exam and ordered the tests to be done.Hopefully I will see an improvement soon. Jules

Sun is shining!

2008-12-06T08:45:18Z

Good Morning ! It is white outside-due to heavy frost- and the sun is shining. Its a beautiful day and I feel pretty good. However it would appear I have some kind of infection ( again) which is affecting my balance. Had BP checked, been to Dr phoned hospital and the BC nurse all are at a loss as to why this is happening.Not seemingly a side effect of chemo as I had thought. Feel like I have been drinking a few glasses of wine- wish I could say I felt this was good.My body is twitching away-again no one can tell me why.Why did I come on here? Well normally I write when I feel rubbish, today I am smiling with the sun.Hope everyone has a good weekend love Jules x

Side Effects?

2008-12-02T10:32:18Z

Hi has anyone else had these side effects from CMF. I have had 2 doses and am due to go back next week for my next cycle. Apart from feeling rough for 5 days afterwards I have felt really good until a couple of days go when I started to feel light headed, and loose my balance occasionally. On top I am getting a wee bit forgetful-my family tease me that it is my age! I have read on another site about this and wandered if anyone else has found this.Julesx

CMF

2008-11-14T11:13:58Z

Have just changed drugs this week from Epi to CMF and would like to hear from anyone else who is on this. I am as usual feeling cr..p but more emotional this week and definetly not looking forward to my next session on Tuesday.The positive in all this is that I am half way there and there is some light at the end of the tunnel.The downside is that I get these drugs twice in the month then a 3 week break. I felt so good last week and really on a high having got through a cylce without a hospital stay. As we all know its a rollercoaster ride and boy could we do without the lows. Thanks for letting me prattle on Jules x

Three Chemos .....two hospital stays

2008-10-15T17:54:55Z

Just returned home after yet another spell in hospital. Three chemos down and two hospital stays with unknown infections it looks lke its going to be a long haul. After a variety of tests ( just like last time) the doctors were no nearer the truth , one thought it was an infection in my Hickman line , another thought the infection was caused by the open wound on my back. Finally one "brave" doctor admitted they hadnt really got to the bottom of it- I like honesty. So where do I go from here. Next chemo ( half way point ) was due on Friday but its been put of till next Tuesday- hopefully. Now Im going to be on edge waitin on the next infection hitting me. Having gone through the usual emotions Ive also found myself getting angry with life in general. I watch as everyone around me goes on with their lives while mines has been taken over with this disease. I want to turn the clock back , I want to be "normal" again, I want to be able to plan a holiday I want to do all the things that were run of the mill. I want my old body back, I want my Hickman line taken out and a bit of me doesnt want to continue with the chemo. Im tired and run down and feeling sorry for myself. Im fed up with people telling me I look good, Im handling everything really well I m brave. NO NO NO I want to scream at them. Anyway Ill stop whining. In a few days I hope I can pick myself up, shake myself down and put on a fresh pair of boxing gloves and continue with the fight. Thanks for listening Jules

Help

2008-09-05T07:58:31Z

Can anyone please tell me what I am doing wrong? As I read through the various blogs, forums etc I am being kicked out of What Now and asked to sign back in again. At the mo there appears to be 3 of me logged on! Im not the most computer literate ( hope the spellings right) and am becoming frustrated. Thanks in advance for any advice love Jules

Glad to be home in own bed tonight.

2008-08-29T19:39:23Z

Am just home from hospital where I have spent the last five nights after becoming unwell. Cannot believe that this time last weeek I was advising another member on what to do when she became shivery and had a temp and was unwell. Lo and behold 2 days later my hubby has to make a couple of calls 1 to the 24 hour helpline at the hosp, who after listening to him gave him NHS 24 number and a doctor turned up to examine me and told me it was off to hospital I was going.Went in our own car and was admitted. Tests were carried out, blood checked , samples from Hickman line to check this for infection, chest xray, swab from open wound on back taken ect and still 5 days later no clearer as to cause. The doc at hosp blaims the wound even though this came back negative.Now Ive got 10 days worth of anti biotics to take and my second chemo session has been delayed a week so far.Bummer. I have been as fit as a fiddle following chemo 1 apart from nausea fo a few days after treatment. Back on Tues to see oncologist and find out if chemo will be resumed.Am pig sick but hey Im home in my own bed tonight. Hope sammeio you are feelin better too. Jules

First chemo 2 days ago

2008-08-07T15:41:20Z

My chemo started 2 days ago, the next session is in 3 weeks. I was anxious about it cos I didnt know what to expect but it went ok.Problem is I now spend all my time waiting on the effects to hit me and I know I cant go on like this. I know that not everyone experiences all theses effects and at the mo I feel sick in the morning but it soon disappears and I have been given medication to help me with this. For the first time in a while I have been having a wee cry when I get up I hate feeling sorry for myself and I normally shake myself out of it.My hubby is back at work having been off for 8 weeks and it is strange not having him around during the day.I have spent today trying to build up the confidence to step over the front door and go for a walk but havent been able to do it. Im sure these feelings will pass I guess I just need to tell them to others who may have felt the same.

Hickman Line

2008-07-31T19:10:27Z

ok here goes, hope I do this right. Am due to start chemo next Tuesday. Was postponed for a week as they decided I needed to have a Hickman Line put in cos no-none can find any good veins!!So of to the hospital I went and gets this line put in and can I just say that at the mo I am not too impressed with it.Can only hope that I get used to it as its there for the next 6/7 months.Have been told how much easier this will make things for me and the nursing staff.Has anyone had experience of this? Any tips? Jules x