chrissiQx2's blog

Radiotherapy Mouth/Jaw advice please

2011-07-22T09:00:09Z

I have posted in the forums too so please excuse me doubling up but I really want to try and get as much advice as possible. My blog is not about me today but my lovely nan who has just had 2 high dose radiotherapy treatments to her mouth/jaw. She was diagnosed a few weeks back with low grade lymphoma which has presented in her mouth. I just wondered what things I could get her that she might need and what to expect over the coming days/weeks.

Anything tis appreciated

Chrissi xx

Losing friends, support and not fitting in

2011-03-27T10:45:25Z

Last year I met up with another woman nearby who also has secondary breast cancer. This was really nice for me as she was nearer to my age, we both have children and found lots of common ground. We met a few times for coffee and a chat and at last I felt I had someone to confide in who really understood me. Well in January she got some bad news on a scan and told me she was going on chemo again but wouldnt tell me about her scan. I sent her some flowers to cheer her up and let her know I am here for her. Everytime I try to arrange to meet she wont and I feel she has really backed away from me. One of my clients at work also has SBC and they have been in contact and have arranged to go for lunch?? A similar thing happened early last year when a woman I met on a younger womens forum stopped contacting me when her diagnosis worsened and whenever I instigated contact I got no reply but I know she was in contact with others. It feels like slowly and surely the little bit of support I have managed to scrape together has faded away and I have no one to talk to. I dont really have any friends, no one ever calls or visits. After Christmas I made a conscious effort to try and make more time for my friends and got in touch with loads of people about going out for dinner or drinks but its all ignored. Or they say they will and when I chase it up nothing happens so I have just given up trying. I feel really lonely. I have no BC friends to talk to about the illness and no 'normal' friends to talk about everyday stuff!!

A couple of months ago I got an email about a secondary breast cancer workshop for younger women which I thought would be perfect for me to gain support and meet other women in my position. So I contacted Breast Cancer Care to secure my place. She asked me questions about my DX and family etc but then told me she wanted to get a nurse to contact me as there would be women further along than me and wanted to make sure I could deal with that?? I felt a bit deflated by this but waited for the nurse to call. A couple of days later the nurse called me and asked me loads of questions about how I came to be diagnosed from my primary to now. It seemed like she was questioning my secondary diagnosis as if I had misunderstood what I had been told in 2009 because none of my organs were affected. She asked me ''what do you believe you were told in 2009?'' and this really threw me and I felt like crying. I told her about the scans I had and the surgery to remove the tumor in my neck and that I have extensive lymph node involvement all over my body and that my oncologist said it wasnt curable. I knew I didnt get that bit wrong?? Who would? Anyway it felt to me that because I wasnt physically feeling ill I had no place on the course and that she was implying it wasnt true secondaries. Eventually she said she had come across a few women in my position and that I could go if I wanted to. Its next week but they havent sent me the information so I dont think I will be going afterall. It just made me feel like I dont fit in anywhere...I know I am not 'ill' or having chemo etc but my outcome is the same as anyone else and I need the same support. I am grateful things are going so well I really am and on the whole I can deal with all this stuff but the way things are going I wont have anyone to turn to when things get bad and why should things have to be bad before there is any support??

Great Results and Number 4

2011-03-01T11:16:41Z

Last Friday afternoon I had my clinic appointment to get the results from my 4 monthly CT and MUGA scan. All is well and the oncologist was very happy and I am very happy. I had to see a locum consultant which always makes me nervous as I know they are qualified but they never really know you and your history but she was very thorough. The radiologists hadnt reported my CT but the pictures were up so she studied these against my previous scan and in her opinion felt there were no changes. She also said if it got reported on and there was anything significant they would let me know but she sincerely felt this wouldnt be the case. My MUGA was fine sitting at 53 % which it has been for a while now so on I go with the Herceptin...blood test fine too. She said I am a star and to keep doing whatever it is I am doing. We discussed the possibility of me waiting 6 months for my next CT and I am very happy with this. As I have had almost 2 years with no further spread etc it will be quite nice to only have this worry twice a year instead of 4 times. Again she said if my usual onc isnt happy with this they will let me know. So all is really really good. PHEW!!

Then on Saturday I went paintballing with my hubby, sister, brother in law, nephew and a group of my husbands work friends and partners. I was a little bit apprehensive as I didnt think it would be my cup of tea but it was AWESOME. I absolutely loved every minute of it...even getting shot which hurts!! I got shot in the head a couple of times, the legs and the face (although I had a protective mask on and body armour!!) It was really filthy and muddy but so much fun and I really want to go again. I have added a picture of our team but its the only I got as I didnt really want to take my camera and risk it getting ruined. So thats another thing to add to my list that I have never done before.

Me in the middle (blonde hair!!). The photographer told us to push or marshall in the yellow vest into the mud...so we did!! He was prepared though and didnt go in....GREAT DAY!!

30 Things For Turning 30 #3

2011-02-13T20:27:16Z

I have just got back from a week in Disneyland paris and all I can say is it was fantastic. We all had the most amazing time and really didnt want to leave. I for one am absolutely shattered as we did so much all day everyday. We have been before but my younger 2 children were only 1 and 2 at the time so they couldnt remember any of it. It was March 2006 and it is also where my husband proposed to me, in Cindrellas castle. No surprises this time, just a wanting to return so everyone will remember it and experience it all properly together. I hope I will get to go again one day, maybe with some grandchildren...who knows??

In our room, all ready for bed??

Our hotel lobby

30 Things For Turning 30 #2

2011-01-31T13:25:37Z

So number 2 on my list of 30 things to do to celebrate turning 30 was a weekend in London and a show...Dirty Dancing!! This is my absolute favourite film of all time and I have never been to a show before. We travelled to London by train on Saturday which was really nice as we both got to relax on the journey. We got to our hotel around 3pm and it was very nice indeed, just off Russell Square and a short walk away from the Aldwych Theatre. I knew we were going for the weekend so managed to book dinner reservations for before the show. We went to a fantastic Indian restaurant called Sitaaray on Drury Lane, again just a short walk from the Theatre. It was a set menu and nothing like I have ever had before, poppadoms and chutneys, 9 starters and 3 main courses. All of which they bring out one after the other to your table so you get to try everything. It was YUMMY. Then on to the show which was amazing I really enjoyed every minute of it and I really want to go again. It was very true to the film and the cast were great. We had planned to go to Camden Market on the Sunday before coming home but on our walk back to the hotel Saturday night we discovered the British Museum just around the corner from our hotel so we went there instead. I had a brilliant weekend and a lovely late birthday present. I have uploaded some pics but couldnt take any during the show unfortunately.

Our room at the Clarendon Hotel

The stage before the show!!

Me in Sitaaray.

Outside the theatre the following day, we were going to take pics when we came out of the show but forgot...oops!!

30 Things For Turning 30 #1

2011-01-05T21:20:03Z

A while back I blogged about doing 30 things over the course of this year to celebrate turning 30. As my birthday was Christmas day it was difficult to plan a party etc so I felt this would be a much better idea. So today I went and got a tattoo which was one of the things on my list. Its not my first tattoo but my fourth and it is of my childrens names so it is very special. Only thing is now I want another one!!!

I made it to 30!

2010-12-29T14:33:45Z

When I was first diagnosed with Breast Cancer at 26 I like many others thought thats it for me and at that time didnt think I would make 27!! Well here I am still fit and strong and just celebrated turning 30. Yes I still have cancer and yes I know it will never go away but I feel so lucky to be feeling as well as I do and glad I reached this milestone in my life (at least). My family and I all had a fantastic Christmas and everyone was really spoiled rotten. The kids seemed thrilled with the gifts they got from 'Santa' and Dan and I got lovely things from each other and the kids too. My mum who is an absolute star got me Take That tickets which I tried desperately hard to get and I am really excited about going, which turns out to be on our 4th wedding anniversary. My sister got me a gorgeous Pandora bracelet so I am looking at the charms and trying to choose ones which best reflect who I am and the things I like. My hubby has arranged for us to go to see Dirty Dancing in the West End at the end of January which again is something else to look forward to and I got some money so I am getting a tattoo done next Wednesday. I will add a piccy when its done. 2011 is shaping up to be a great year already. We are also off to Disneyland in just about 6 weeks so I am mounting up the 30 things for turning 30 that I wanted to do. I am off to hospital for my treatment tomorrow and I can really tell as I feel so tired although some of it could be down to all the crap I have been eating this week. I really hope you all had a great time over Christmas and are all feeling well and looking forward to seeing in a brand new year. Heres hoping its a good one xx

7 weeks with no treatment and CT results tomorrow

2010-11-07T10:21:03Z

So following on from my last blog which was quite a while ago I havent had any treatment at all. So to say I am worried about my scan results is a bit of an understatement to say the least. I had an appointment with a locum oncologist a while back about the pain and lump in my breast and also the heart symptoms I had been experiencing. He basically said what I was feeling in my breast was my ribs and that cancer doesnt grow in 2 months, which is how long it had been since my previous CT. Ok I thought so why do I have scans every 3 months then? Then he asked me if I drink and smoke...I said no because I dont and he said well at your age your heart will be fine!! Ok so it doesnt matter that I have had chemo and 2 years of Herceptin which can cause congestive heart failure in whoever has it?? I came away feeling less than reassured and a bit stupid. He had requested I have an ECG and gave me a slip of paper to take away with me and also said he wanted me to have an echo and that I must cancel my treatment for the following day but rebook it for a weeks time. I had the ECG the following day and then telephoned my nurse to see if they had the results so I could book my treatment back in. She told me I had to wait for the echo which would be done before my next clinic appointment on the 8th November and that I would get an appointment in the post. I asked her whether the delay in treatment would be a problem and she said no as it was only 4 weeks?? In the meantime I had an appointment at the breast clinic where they scanned my breast and told me it was fine but that I did have a lot of glandular tissue where I was feeling the lump and pain, so it wasnt my ribs then!! I then received a letter for my Echo appointment for the 16th November!! Luckily my mum managed to get this brought forward for me as she works at the hospital and I went and had that done on Tuesday...the guy who did it said it all seemed fine but he was surprised when I told him I have a heart abnormality as he hadnt been given any of my history, just a referral letter!! So as I said this has all been going on and I have now missed 2 cycles of Herceptin and I had my CT wednesday...get the results tomorrow. I am just really worried that this is a long time to go without treatment and I have been really tired and getting some aches and pains in my neck and back. I dont understand why they messed me about so much and made me wait so long for these appointments when it could have all been done in one day and I need not have missed any at all...especially as my heart is apparently fine. I feel that oncologist just didnt have a clue as he doesnt know me and my situation...when I first discovered a lump in my breast back in 2007 it grew from nothing to almost 3cm in the space of 2 months and apparently spread to my chest in that time too. I dread to think whats been going on inside me the last 7 weeks!

First Ever Secondary Breast Cancer Awareness Day!!

2010-10-09T18:39:57Z

This Wednesday, October 13th will be the first ever Secondary Breast Cancer Awareness Day in the UK. I know breast cancer is huge in the media and gets a lot of press which does at times overshadow other cancer types. Obviously I hope everyone gets the support, care and treatment they deserve but being a SBC sufferer myself this is something I am passionate about. I was approached by Breast Cancer Care as I have done a bit of media work for them in the past and they asked if I would speak to a journalist from the Mirror newspaper. They were keen to help promote this new awareness day and highlight the issues surrounding SBC and wanted someone to share their experiences about lack of support and understanding of SBC. I hope you will all have a look at the article as it is an eye opener and maybe not what you would be expecting especially when you think how much promotion and awareness there is of breast cancer.

Another lump and a dodgy ticker?

2010-10-07T20:26:31Z

Exactly what it says in the title!! Well I will start the right way around otherwise people will assume one led to the other but thats not the case. For about a week now I have been experiencing on/off chest pain, tiredness, breathlessness and a pounding heartbeat which I am very aware of even with the slight exertion. I have woken up a couple of times in the night and it has been beating so fast that I thought it was going to come out of my chest. I do have a heart abnormality called Wolf Parkinson White Syndrome which I have had since birth and is pretty harmless...unless you have another condition as well then you can just drop down dead, but I cant remember what that is?? It means my heart doesnt beat properly and is inefficient and you can get palpitations. Well I know what has been happening lately isnt palpitations because it seems to be beating rapidly all the time and I am very aware of it. Then on Monday night I was having a bath and I was washing under my left arm and it was really painful so I had a good feel around the armpit and boob and found a bloody lump!!! Its on the left side between my breast and armpit. So I went to the GP who said she too could feel a 1cm lump but that she thought it was just an active lymph node!! You dont say?? But where is my cancer?? In my lymph nodes...correct. She said she felt I should 'tell them in oncology' but she prescribed me some cream to rub into the lump to make it go away. Then she checked my heart and said my pulse was 100 but my BP was ok and she wanted me to have a blood test to rule out the basics eg anaemia. Well when I got home I phoned my CNS and she said she would sort me out. I have an appointment to see an oncologist tomorrow to 'check me over' as she feels it could be the Herceptin causing the heart problem and I have an appointment with Mr Kumar at the breast clinic on the 19th October. Sorted.

Ps has anyone ever had a blood test and after they have pressed on it, had a plaster put on and chatted to the nurse...moved your arm and blood squirts out from under the plaster??? no?? Well I have lol xx

Family matters

2010-09-28T20:04:26Z

Hey everyone...I havent blogged for a while but not much has been happening with me so I havent really got alot to write about. Treatment going well and I'm feeling well so thats great!! I am blogging about an issue which has been playing on my mind for a while. Its not directly to do with my cancer although its a factor, if I wasnt ill then it probably wouldnt be something we would be considering. But seeing as I am never going to get better I need to make sure things stay as they are.

When I was 16 I met an man who was 6 years older than me, tall, dark and handsome and all that. He was a bit of a bad boy but all my friends fancied him and guess what? I ended up with him...lucky me?? Well 8 years later and I was destroyed. He treated me worse than the shit on the bottom of his shoe and I put up with it. He didnt provide, he drank and did drugs, never helped with the kids and was violent and abusive more times than I can remember. Yet I was naive and had 2 children with him and was pregnant with a third. In December 2004 this 'man', if you can call him that, attacked my children and me whilst heavily pregnant. Luckily my children were unharmed but I wont say unaffected. I then had to go through the court proceedings which I was glad to do, he had crossed a line and my children meant more to me than he ever did. Anyway he lied about what happened that night and it was my word against his, he even told the court I brainwashed my 6 year old and made him say his dad had kicked him in the stomach. So as great as the police had been and were on my side he only did about 6 weeks in prison. I then had social services involved in my life which was difficult but they did help me immensely and there was never any doubt I would be protective of my children, they even got me moved to be nearer my family. I got injunctions against this 'man' which he broke at every opportunity only to be told in court he had human rights!!! What about mine?? When hes climbing up to my bedroom window in the early hours to terrify me and the children?? Well as time passed he left me alone and I began to rebuild my life and settle the children into a routine with little George now here too.

I met Dan when George was 6 months old in a pub. We got chatting and one of the first things I told him was that I had 3 kids..well he said 'so' and that was that. We have been together since. From day one he has wanted to get to know the children and been nothing short of respectful of them. I always told him I didnt want a dad for them yet its something he has just done naturally. He really warmed to George and used to play with the older two, he would ask me if he could buy them birthday presents and christmas presents. He would come to the park and never seemed to mind that they were a part of my life. After we had been together a while and talked about moving in he asked me if the children could call him dad..I said he had to ask them and from then on they have...hes dad to them. Cameron my eldest does remember his real dad but he never talks about him, he remembers what he did and that has had a huge impact on how he feels about him. Dan has worked everyday and provided for the children, he reads with them, baths them, tucks them in at night, takes them back to bed if they have a bad dream, hes there for them no matter what, no questions asked. We werent married when I was diagnosed although it was arranged...I was diagnosed 10 weeks before the big day. He could have left and said it was too much but he didnt. We changed the childrens surnames by deed poll after the wedding and I gave Dan parental responsibilty, all through a solicitor. During the first few months of chemo etc when I was scared about what would happen to me I asked him if he felt he would cope if I died, afterall what he has done already has been a massive change for him but to have to do it on his own might be too much. I told him he didnt have to say he would just to please me...and he said no I will be here for the kids because I want to be...they are my children and I'm their dad. So I know in my heart he loves them and will never abandon them. Then I was diagnosed with secondaries so now it changes things. I know I am going to die from the cancer and I worry that the parental responsibility isnt enough. I havent heard from the childrens real father but I do hear about him. I know he has been in and out of prison and possibly for violence towards a new girlfriend...I know he still drinks and takes drugs so I dont think the courts would ever favour him. That said I dont want there to be any doubt or for Dan to have to worry that he wont be allowed to care for the children like he wants to. I dont want to chance it when I'm not here to make my wishes known. So we are going to look into him adopting them. I know its a big thing and a lengthy process but it feels like the right thing to do for the children. They need to know that Dan wanted to be there for them forever, that he chose to love them and chose to be their dad. Sorry its been a long rambling blog but if anyone has any experiences of this or advice it would be great. I need to know my children will be with the right person when I die.

Chrissi xx

''30 things for turning 30''

2010-09-06T20:11:08Z

I will be turning 30, believe it or not lol, lots dont ;-) on Christmas day. I say believe it or not because I do look young for my age...the youngest I have got is 17!!! Anyway I was going to have a mad bash to celebrate but seeing as its Christmas it has proved difficult to arrange. So my friend and I came up with this fab idea of doing 30 things to celebrate turning 30 which I am going to do throughout 2011. I know this is shallow when you look at the bigger picture which is my life but I am actually quite upset about being 30. You see I dont mind getting older, love the idea in fact as the alternative doesnt bear thinking about but I dont want to look older! I'm not vain just very image conscious and I am worried that I will suddenly age and feel even more insecure about myself. I am seriously considering botox as one of the 30 but I will leave that for another day...actually I lie because I also considered fillers too and know once I started I couldnt stop...not good!!

So far my list consists of:

1.Dan and I going for Tea at the Ritz on the 18th December.

2.We are all going to Disneyland Paris on the 7th Feb for 5 days.

3.I have registered interest for tickets for the Take That tour with the lovely Robbie Williams.

4.A girls only holiday to somewhere trashy like Ibiza or Magaluf...god help me!! But I have never done it before.

5.Twice now I have applied for Xfactor but didnt go so I will either pluck up the courage or at least go to a live show to watch the other hopefuls!!

6.Glastonbury!!Never been to a festival either!!

7.Ladies Day at the races...last 2 years said I was going but havent yet!

8.Go to the Opera, again a dream of mine. We tried to get tickets to see La Traviata at La Scala when we honeymooned in Milan but were too late. So the ROH will have to do!

9.Have a summer garden party at mums which she has kindly agreed to so I can be like the queen lol

Well so far this is all I have but I am planning to throw some messy nights out in the mix possibly with crazy fancy dress themes...well I probably wont get a 40th so I feel its got to be done.

Hope you are all feeling well

Love chrissi xx

Not bad at all!

2010-08-09T14:43:03Z

Well that will teach me for jumping the gun. My scan was absolutely fine and I can just carry on with the Herceptin for at least the next 3 months. I got in to the Drs office and she asked how I'd been feeling and if I was concerned about anything...so I mentioned the 'lumps' I had felt. She told me nothing new had shown on the scan and that she would have a feel anyway. She examined me thoroughly all along my collarbone and neck and said it felt fine to her, then she showed me the CT images and I could clearly see myself that there was nothing there. She did say that it could be where I have lost weight and sometimes you feel things that have been there all along eg a prominent vein or muscle or something. I said I felt really silly because I had been so convinced and she said that its very common for people to be like that. I have promised myself that next time I will try to relax and not be so quick to assume the worst. Next scan in November.

There can be miracles...when you believe???

2010-08-04T19:28:37Z

I have to get up early tomorrow for a trip to the hospital for my CT scan. The appointment is at 9.15 but I will have to get up before 8 so I can drink the Gastrografin in preperation for the scan. For anyone who hasnt tasted this (you are very lucky) it tastes of watery aniseed and I hate it. It reminds me of Sambuca and thats not pleasant first thing in the morning. I have to mix the gastro with a pint of cold water and sip one cupful every 15 minutes until its all gone.

If you look back through my bloggings you will see that I get very nervous around scan time which I know alot of you do too and I was very very nervous last time as I was convinced something was wrong.,..turned out it wasnt. This time I am very very very very very very nervous and this is due to the fact that I have had some lumps reappear just above my collarbone, where they were before I started the Herceptin a year ago. I could sit here and pretend its nothing and that everything will be ok as it has been for the past year but if I did that I would be kidding myself. I know what this means and I dont need a scan to tell me which is one of the pitfalls of being able to feel lumps where there shouldnt be lumps!! Hence my title...I do believe miracles do happen and very much so in the unpredictable world of cancer so until Monday (results day) I will be hoping and praying that I am wrong...now that will be a miracle!!

XXX

A special day

2010-07-15T15:43:06Z

This week I am celebrating 2 'anniversaries'. One is good and one is not so. It was a year ago yesterday that I was diagnosed with secondary breast cancer and so far so good apart from the last 2 weeks feeling dreadfully tired. I have scans and an oncology appointment coming up at the beginning of August so unless it becomes unbearable I will wait until then to see if its anything sinister. Also 5 years ago today I met the lovely man who is now my husband. I was living in Haverhill (of all places :-s) at the time and a friend and I went on a night ot into town on a Friday which we didnt normally do. We went into a Wetherspoons pub for the cheap drinks as we always did before heading the The Bell...a pub come club if you could call it that!! Anyway we sat at our table and there were a group of lads behind us, some we knew and some new faces. We didnt really speak to any of them. Then we moved on to The bell and as soon as we walked through the door and headed to the bar Dan came over and started chatting to me. What was my name? How old was I etc etc? He seemed very confidant and lovely. We had a few drinks together and a dance as the night went on. I even dared him to go and take his boxers off which he did. We never found out what happened to them!!!lol. Well it started to get quite late and I was feeling rather drunk and my friend was getting on really well with Dans friend Dave so I decided to leave. Well I got home and went straight to sleep but when I woke up in the morning I had about 40 missed calls on my mobile. He had told my friend he really liked me so she gave him my number. Well in the sober light of day I wasnt too sure about him as I had the 3 children and George was just a baby and I didnt think a guy like him would be up for all the hassle. And I had just got out of a long, violent relationship and still had problems with my ex. Well I decided to ring Dan and see if he wanted to go for a drink the following week which we did and despite some reservations at first I realised what a thoroughly decent, caring person he was and we have been together ever since. It turned out that he was sitting right behind me in the Wetherspoons pub and we could have so easily passed each other by. I can't say I loved him in the beginning but now I can honestly say I love him truly with all my heart. He has stuck by me and my children through my cancer journey when he could have easily walked away. He is one in a million and I will always cherish this day as it was one of the best days of my life!!