- bone problems such as bone fractures or osteoporosis
- general feeling of being unwell
- high levels of cholesterol in the blood
- hot flushes
- increased sweating
- joint pain
So here we are the start of a New Year, I wonder what this year has in store for us? I am hoping LOTS AND LOTS of fun times with family and friends and I will do my utmost to make sure that happens you can count on that! but firstly I have a very important appointment to deal with……
5th January 2016
So today is the day that I have my first mammogram since diagnosis! so how do I feel?
I am scared, nervous and feel sick….yup that pretty much sums it up I guess! I know I wont get my results today and the thought of waiting a couple of weeks will be absolute torture for me. It is around this time last year when I was waiting for surgery and it feels like “here we go again!” After my mammogram I also have an appointment to see my surgeon to discuss further surgery to “level me up”….
I am not going to this appointment on my own, Lisa is going with me :-)…Lisa has had to grow up so fast in life with everything that has been thrown at her over the years, yet she is always standing by my side whenever I need her. I really am truly blessed to have such an amazing daughter ♥
Sat in the waiting room seems so different now to what it did a year ago! last year I had no idea I had cancer and sat there like any other woman going for her routine mammogram. At no time did I ever think there would be anything wrong. Fast forward a year and Oh my it’s so so different. Mammograms will always fill me with fear! not fear for having them but the fear of “what if”???? Gone are the days when I took my life for granted.
My name is called and off I go….Lisa giving me the look saying “its going to be ok mum”…
I was not prepared for the pain I experienced when they squashed my boob that I had surgery on…..oh my god it was agony. The poor women carrying it out couldn’t apologise enough but I appreciate it has to be accurate, at the end of the day I don’t want anything to be missed. When she finished and I got my breathe back again! I asked her would they be letting me know one way or the other by post and how long would it be before I heard. She said to me it will be about 3 weeks…….3 WEEKS????? ARE YOU SERIOUS????? Que the tears…oh, but not just any tears a complete and utter break down! Honestly I had no control over the situation and I don’t think I have ever broke down like that in my life! I became inconsolable, I couldn’t even say what I wanted to say. The poor women, goodness knows what was going through her mind at that moment! Trying to calm me down she said it may be here sooner than 3 weeks but they say that to make sure they are done within that time spell. She asked me when I was seeing the surgeon and I explained I was seeing him next. This is unusual apparently as normally you would see him about 2-3 later when they have your results. However, for me they had changed appointments so I didn’t have to travel twice in the space of a week or two. I eventually pulled myself together and apologised explaining it felt like everything was going to happen like last year….they would find something, I would be cancelling my holiday again and even worse Lisa would be cancelling her wedding again! I just couldn’t bear this all happening again and I was terrified. She tried her best to reassure me saying nothing had stood out from what she could see but she couldn’t tell me 100% as it needed to be read by a specialist. I totally understand that but honestly the waiting for results is truly torture.
I got myself dressed again and went to fetch Lisa from the waiting room. Poor Lisa took one look at my face and I saw the panic in hers!!! “Oh god what’s wrong” she said, I explained it was ok just me having a “moment”. We went out into the corridor so I could pull myself together before I sat in the next waiting room to see the surgeon!
We sat in the waiting room, the same room where we sat waiting for my results following surgery a year ago. There are no happy memories for me in these waiting rooms so it’s really hard emotionally. It was busy as per usual and looking around the waiting room there were so many younger people then what I expected. Sat there with their husbands/partners looking terrified. Oh how I wanted to say to them, you will be ok, its doable all the treatment, you will get through it….but I know at that moment they would just feel the fear! Its so sad!
So we sat waiting….and waiting…..and waiting….it is always a waiting game here but again I realise its not something you can predict in how long a patient will need. Eventually Lisa went to ask at the Reception as we had now been waiting an hour! They went off to find out why I was waiting for so long and she came back to tell us they were getting someone to read my mammogram prior to me seeing the surgeon! WELL….panic, excitement, worry???? I felt it all. Lisa was excited saying that I would probably get my results there and then which would be fantastic. I was thinking…..is someone checking them because they noticed something there? Honestly, the positive thoughts that you want, keep getting pushed back by all the nasty negative ones!! We were eventually called in, and here we go again….sat in front of the desk with a box of tissues in front! waiting for the surgeon to come in. Que Lisa….”shall we play eye spy”….Oh that girl, she certainly knows how to make me laugh in the most tense situations.
Knock on the door…..in walks the nurse, and the lady (part of the surgeons team) who first told me I had cancer! My stomach must have done a million flips at that point….my thoughts were Oh no not her again….Thankfully she didn’t drag it out for long and went on straight to tell me they got someone to view my mammogram and she was happy to tell me that everything looked fine…….FINE????….YES FINE!!! 🙂 …NOTHING TO BE CONCERNED ABOUT! Lisa looked at me and said “well looks like I will have to get married now” :-)….I just burst into tears trying to apologise through them for crying yet again! The nurse said to me, it was totally normal to react like this as they see this all the time. They both said they were really pleased for me….I just wanted to run around the hospital telling everyone and anyone who wanted to listen my good news :-). The surgeon asked if she could examine me….she could do what she wanted to me at this point as nothing…NOTHING could dampen how I was feeling at this moment.
What a day….how can you be so scared one minute and so elated at the next! Thank you NHS for looking after me, thank you for reading my results there and then to put my mind at rest and making sure I kept my sanity. THANK YOU THANK YOU THANK YOU…..
So next on the list is surgery again but I have decided I don’t want this doing until after Lisa’s wedding. I don’t want to risk the small chance of infection and spoiling anything. I can cope with the lopsided boobs for a bit longer, being at my daughter’s wedding is the most important thing right now.
The nurse asked me if I wanted to try a prosthesis to enable me to have a better shape. She took us off to another room and helped me to find a size that would make me look “more normal” in my clothes. She was so kind and really compassionate towards me, I was so grateful. We left the hospital feeling on top of the world.
7th January 2016
Today I said my goodbyes to my Aunty Roma, always sad under these circumstances but if I can take anything away from my Aunty it would be how strong and determined she was in adversity. Independent? too right she was, she suffered from poor health and had Parkinson’s disease but it never stopped her fighting and living her life the best way she could. A true fighter, RIP Aunty Roma. It has made me realise how important it is to cherish your life, live your life and be grateful for it!
15th January 2016
This day a year ago I was having surgery….what a difference a year makes! today I am back at work and feeling stronger every day 🙂
18th January 2016
Excited, excited, excited…..today we paid off our holiday balance :-)….this holiday is going to be the best! I have never been so excited about a holiday as much as I am right now. Again, maybe its the appreciation of what I have….Last year around this time, we were going into Thomas Cook to cancel our holiday and that was so hard.
20th January 2016
Yet another happy day….Bridesmaid shopping….but this time I know I WILL BE GOING!, Today I feel the excitement just like the mother of the bride should feel and can look forward. Last year, I had to pretend I was excited as I had that uncertainty of whether I was going to be able to go….but not today 🙂 🙂
25th January 2016
So today I am off to get bloods taken for the BOCS study I am taking part in … http://www.icr.ac.uk/our-research/research-divisions/division-of-genetics-and-epidemiology/genetic-susceptibility/research-projects/the-breast-and-ovarian-cancer-susceptibility-(bocs)-study
2 very large bottles to fill and I haven’t got the best veins to be fair. As predicted they struggled to get bloods. She took a look at my hand and said that I had good veins there….at this point I nearly freaked out! Oh no way! sorry you are not touching my hand! I feel I have post traumatic stress around my hands after all the problems I had with cannulas and needles when having chemo! The pain I experienced then will forever remain in my memory. Eventually they went to get “another person” to try! She came in and took a look at my arm and said….oh dear!..she then looked at the paper request and said to me …”oh well your doing this voluntary so we will have to see, if we cant get it then so be it” Okay….so this slightly got my back up! I understand that she probably meant..it wasn’t urgent! but DO NOT MAKE OUT IT IS NOT IMPORTANT GRRRRR. These studies are important for future research and treatment for our future generations, maybe our grandchildren and their children…..I want a cure for cancer and will do what I can to help. Please do not be ignorant and make out this is NOT IMPORTANT!….rant over…..
28th January 2016
Today I have an appointment with my Oncologist for discussion about stopping my hormone tablets and to see how I am getting on. Today Gary is coming with me, he can cope with “general appointments” much better then the ones where I have results.
So off we go to Lincoln, sat in the car for some reason I started thinking about my own mortality! where on earth did that come from???? Gary happily driving along and I drop in the question…..If I died would you still make the effort at Christmas and put all the decorations up?….poor Gary….he looked at me like I had lost the plot….”Stop that, I don’t even want to think about stuff like that” he replied. I sat and cried, goodness knows what brought all this on! I feel like I have been feeling pretty positive so why this should come out of nowhere I just don’t know! Maybe its the anxiety of going back to the hospital that does it. Don’t get me wrong, I am so grateful for all the care and attention they are giving me and all the check ups but with that unfortunately comes anxiety too.
So we met yet another Oncologist, this time a woman (cant even begin to say her name!), she was really nice and I explained about the situation of me coming off the tablets and my reasons for doing so. She said she completely understood that however there was one I hadn’t yet tried and would I like to try it? OH NO…why offer me another :-(….this really plays with my head as I know the statistics and % of benefit but on the other hand I worry that I should take everything that is offered. We had a discussion about this and whereas the other 2 Oncologists that I have seen have basically said to me….if it was me, I wouldn’t bother….this Oncologist was not pushing me either way. I wish she had! So I agreed I would try….so off I go home with these….
Arriving home I started reading up on side effects and looking on forums to see what other people were saying who were taking them….It sounded just the same as the other 2 I had tried…swelling, weight gain, joint pain…oh the joys! I suddenly went from feeling really really happy (apart from the car journey) to feeling really down. So here we go again….tears!
Having a chat with Lisa, and explaining how I felt really helped. I wanted her reassurance really and she gave me it….so the plan is….phone the Oncologist and explain I have decided I am not going to take them until after the wedding. It feels like a lead weight has been taken off my shoulders. I just don’t feel I can cope with the pain at the moment. I don’t want this to affect my holiday and the wedding but will give it a go after the wedding if they are in agreement….watch this space…
4th February 2016 – WORLD CANCER DAY
Today it has made me reflect on the past year and how far I have come and more important how grateful I am that I am still here!
Please take a moment to look at the following, it may save your life…. http://breastcancernow.org/about-breast-cancer/what-are-the-signs-and-symptoms-of-breast-cancer?utm_source=facebooko&utm_medium=social-share&utm_campaign=campaigns-early-detection-social-share-facebook
I am now pretty much in full swing being back to work and although I am still very tired at times there is a vast improvement to what I was feeling before Christmas. I am trying my best not to let stress appear in the situation and so far I feel I am doing okay. I am really enjoying being back to work seeing the patients and hopefully making a difference to their day :-).
I will not be updating my blog as often now, but this is a good thing! it will mean life is good and I am living it :-)….I plan to update every 3 months or so, so keep checking back….and more importantly keep checking your breasts!!!
Well I thought I should update my blog because if I left it too long I would forget things and feelings. I want to keep this “journey” a true reflection on how it really is, so have decided on a quick update to reflect this….
So what’s been happening these last few months?? Good things, Not so good things and a big shock!
My tiredness has improved a lot over the months but that’s not to say that some days I am totally exhausted but I guess a lot of that is due to a demanding job and age!!
So I have so much to look forward too, big family holiday and of course my beautiful daughters wedding! We have been busy wedding shopping and have to say I was feeling quite panicky over what I would wear! As I have said previously, I decided that I didn’t want corrective surgery until after the holiday wedding. My main reasons for this was
No1. I was worried that there could be a risk of infection and No2. I just couldn’t bear the thought of further surgery just yet.
Little did I know that surgery was coming sooner than I thought!! more to come later on that one!
I have been looking at lots of mother of the bride outfits and they are just not designed for a 4ft 11 rounded, lop sided woman like me!! A lot of outfits are really stiff and ideally I wanted something floaty and an outfit that won’t have me boiling over in the heat of Antigua. Easier said than done unfortunately! A lot of the floaty dresses emphasised my body shape and I just didn’t feel comfy at all.
I know I shouldn’t be worrying about these type of things after going through all this cancer crap, I know I should be feeling grateful I am here! and yes I am so very grateful BUT this is my daughter’s wedding and I want to look like the proud mother of the bride that I am, and I want to look like a woman!
So to say I was feeling quite stressed about this was an understatement! that was until I found a dress 🙂 but it was not in the usual “wedding type shop”. I took Lisa with me and asked what she thought. I though I might as well try it on and see, not expecting it to look anywhere near decent on me! So it was much to my surprise that it fitted really well and I liked it. I looked at Lisa and I do believe she looked a little emotional! Now what’s that all about??? ha ha, those of you that know Lisa and I will totally understand what I am on about here! Lisa can control the majority of her emotions and me on the other hand is a total train wreck where emotions are concerned. So needless to say I bought the dress :-). However the stress didn’t stop there! I honestly thought I had done the hard bit but trying to find some shoes to actually fit me has been an absolute nightmare!
How come it is a battle to shift all my excess weight yet my feet seemed to have shrunk! Trying to get a size 2.5 is near on impossible. But the good news is after endless looking… I have managed to get a pair of shoes and although they are not quite the glamorous ones I had hoped, least they fit! so now I can pack my flip flops for around the pool and not worry I would be wearing them with the wedding outfit 😉 So I am all kitted out and can just look forward to what I know will be an amazing time with family and a very proud moment for me.
Our holiday is coming quick and fast so I have been focused on that also and buying some new clothes and swimwear! another nightmare! my shape in swimwear emphasised my lop-sided-ness more than I thought. So another stress to deal with. The good news is I heard about a company called knitted knockers.
Please have a look on this site….what a wonderful service totally run by volunteers. They not only do Knitted Knockers but also Aqua Knockers so I thought I would order one and see….
I was really touched with my parcel when it arrived, the little bits in the packet..love hearts, a little note, and a cute “made with love” heart. It felt so very personal to me yet it was made by someone who doesn’t even know me. What a really lovely thing to do. See there are some really kind lovely people in this world :-).
So armed with my Aqua Knocker I thought I best try it out prior to holiday as I had visions of me in the pool on holiday with my Aqua Knocker floating behind me ha ha! Good news….it worked perfectly, no falling out, no wardrobe malfunctions and it really did make a difference to my body shape so win win!
My mood has been really good over the last few month and I have felt really positive and not dwelled on the Cancer thing…in some ways it made me a little worried that this wasn’t normal but on the other hand it was nice to feel somewhat “normal”. Unfortunately that was about to change when I least expected it.
At work, doing the things I do, I suddenly had really bad stomach cramps totally out of the blue. Couldn’t quite understand why but without going into all the details I ended up being very sick, going home, and ending up in A & E. The upshot of it all was I had a strangulated hernia! After 4 hours of excruciating pain and endless attempts to get a cannulae in, I finally got some much needed morphine! If you have been reading my blog you will understand how I feel about cannulas…seriously this definitely didn’t help me to eradicate that fear!!
So pain under control I was then transferred to Lincoln hospital at 1am in the morning with my guardian angel in tow yet again…Thank you Lisa x
Prior to emergency surgery the surgeon came to see me and started talking about the possibility of me having to have a bowel resection! This sent me in to panic overdrive and all I could think of was my holiday and the wedding!…..”NO” I said to the surgeon that can’t happen, I am going on holiday next month…..He must have thought I was some barmy women who had lost the plot…he was talking surgery and I was thinking holiday!
Next in line was the Anesthetist….He asked me if I was feeling a “little anxious” and asked if I had experienced General Anesthetic in the past…..Que the tears!! He was so nice and kind to me which made me have a complete and utter breakdown! Honestly I felt really stupid afterwards but having explained my situation he was really understanding and so kind. “Don’t you worry about a thing he said, we will look after you and everything will be fine”…you have no idea how it felt to hear that. I was absolutely terrified! I am not normally like this, I never felt like this when I had my surgery for Cancer but this time I was scared! I was alone and terrified of just about everything…will I wake up? will they cut away some of my bowel? will this prevent me from going on holiday and going to the wedding?…..thoughts went into overdrive! how I wish I had Lisa there at that moment to tell me I would be just fine or Elaine (my work colleague/friend) who would have said “pull yourself together woman you will be just fine”…good job there wasnt much time to dwell on this as I was whisked away to Theatre.
I woke up and no drainage bags which meant no bowel resection. What a relief! so now the recovery begins again! more time away from work and more recovery from surgery. Unfortunately with all this came a change in my mood, I felt really down and it felt such a set back to me. I had just began to feel more like my usual self, back to work, more energy and then this was a massive set back. Everyone tried to make me look on the positive…this could have happened anytime…at the airport…on holiday….just before the wedding!!! So yes, looking at those possibilities I am extremely grateful that this is now done and dusted!!!
So since this little setback I have had to take it a little easier at work, I am trying not to do much lifting, stretching, pulling….I guess I am being selfish!! I cannot risk anything happening again because after all…I have a holiday and a wedding to attend 🙂
My mood since my latest set back has taken a bit of a nose dive unfortunately. I don’t know whether is was because of this or whether it would have happened anyway! all I do know is I don’t like this feeling and wish it would just do one!!!
I suppose I had been doing so well, not dwelling on what has happened over this past year and trying not to have those “what if” thoughts! so why oh why do they have to rear their ugly head now :-(.
ONCOLOGY REVIEW – 14th April 2016
So today is my Oncology review….I have been a bit snappy and moody the last couple of days and I know it’s because of today. Don’t get me wrong, I am so grateful to the NHS for looking after me and checking I am okay but on the flip side…it’s going back to the Breast Unit where I have so many thoughts (both good and bad, but more bad), it makes me revisit everything when I really don’t want too. But…I have to go, so off I went with Gary in tow, trying his very best to say all the right things to me to make me feel better….facing a losing battle unfortunately. My Oncologist gave me a thorough check up and reassured me that the pain I have been experiencing recently is probably due to surgery. Nothing sinister to look at or feel thank goodness!!!
So today I made my decision….I am not going to take the third different lot of hormone therapy that has been offered. This has been a really tough emotional decision for me and I have not taken it lightly. The potential benefit to me from these drugs is possibly not as high as what it may be for other women who are higher oestrogen receptor positive. I am on the lower end of this so the benefits are not so high. So taking all this into account and the side effects I have experienced when trying the previous two drugs I have decided not to take them. I have had to weigh up my quality of life to the benefits I may/may not gain. The pain in joints, the swelling in my hands and feet and the general feeling of being like a 80+ old woman is not what I want. I need to be able to enjoy running around with my grandchildren, being able to work without pain and to live my life. I do value my life and want to be here for a very long time but I need to also feel like I am living and not only existing!
So there it is….my latest update! and now I plan on having an amazing holiday and enjoying every second of my daughter’s wedding. No more dramas please and I intend on working on that mood of mine 🙂
I will update in a couple of months….
So here we are, where do the months go? such a lot has been happening over the past few months, lots of happy times. Those happy times that I just couldn’t see this time last year, couldn’t even imagine them happening but they did and I am so grateful that I am here to enjoy every second of them.
So first on the list was our family Mexican holiday, 2 brothers and 2 sister in laws…first time we had ever been away together for more than a couple of days! Was I nervous? no not really we all made a promise that we would do what we wanted to do as couples and not feel we had to be in each others pockets all the time….BUT this is our family, and of course things never run completely smoothly do they!! A month prior to our holiday my eldest brother was experiencing some heart problems which required investigating and of course caused us a lot of worry and concern! Honestly I just felt like everything was against us again. Why us? Why can’t we all just be happy? Why, Why, Why????
We didn’t know whether he was going to be able to fly until 2 hours prior to leaving for London! Yes that did stop the excitement because as much as I wanted this holiday so much I knew that if he wasn’t able to come then it would have put a big downer on it all. I am happy to say….he ticked the “its okay to fly” box and off we went. Don’t get me wrong the worry was in the background but we tried our best to keep it that way and we had an AMAZING time! In the whole 2 weeks I think there may have been 1 or 2 evenings that we were not all together. We just got on so well and I have to say it was one of the best ever holidays I have had. I don’t know whether it was the fact that I appreciated everything so much more or what but I feel so lucky to have had that opportunity. I feel so blessed to have such a close family. My brother is still under investigation but he is okay and I am relieved he is under the watchful eye of the NHS.
Talking about being under the watchful eye of the NHS I have had my appointment with my surgeon to discuss reconstruction surgery. I had put this off due to the holiday and wedding as I was so worried that if I went ahead I may get an infection and there was no way that I wanted to take a chance on anything that may upset any of our plans. Reconstruction surgery has been a “no I don’t want it” to “I will think about it” to now….I need it! I am getting so much discomfort from the vast difference in size of my breasts and cannot wear a bra that feels comfortable and supportive in any way. So I have decided it’s the best thing to have done and my surgeon 100% agrees with me. I have my date…day after my birthday!! Of course that depends on any emergencies that may come in, which will then mean mine will be delayed. I totally understand that and agree whole heartedly. I have to say I was somewhat shocked when he told me recovery would be 4-6 weeks! I am sure I didn’t feel that bad after my first surgery (although my mind was in a difference place then, nothing made sense). He did explain to me that the recovery may be longer as they may require to do some liposuction after surgery to get a good balance. Apparently liposuction causes extensive bruising and pain! …that didn’t stop me asking if while he was at it could he just suck some fat out of my stomach!!! Unfortunately not he said with a smile….oh well worth a try! So the date is booked….Cant say I am looking forward to more surgery but hopefully it will go smoothly and I wont ever need surgery again!
So no time to get the holiday blues because before you can blink your eye our next one is around the corner :-). My daughter’s wedding day ♥ What a truly magical week we had in Antigua. To have my son, daughter, grandson and granddaughter all together for a week is something I never thought would happen. It was amazing, magical, fantastic and all those words that make up perfect. You seriously cannot put a price on those type of memories. My daughter (and son-in-law) looked stunning I can’t put into words how proud I felt that day. I am sure you all know by reading this blog what a tough 2 years she has been through, so to see her standing there blissfully happy made my heart burst with happiness and it couldn’t happen to a more deserving couple. The whole week was so fantastic, no words could come close to explain how amazing it was, but the memories will stay in my heart forever.
So…holiday tick, wedding tick, wedding party tick…..and now back to reality….
I know life isn’t one big holiday and I know I am extremely lucky to have experienced an amazing few months but it’s so hard to come back to reality it really is.
First stop..Oncology appointment. I have said on so many occasions I am really grateful they are keeping their watchful eye over me but with that comes a certain amount of anxiety also. My appointment this time was not in the breast unit (which comes with its own memories) but in the Oncology unit which I find really hard! Looking around the waiting room which was full to bursting just makes me feel sad. I know I should be sitting there thinking….I am here, I am alive, I have finished my treatment and the cancer is gone…but instead I look around that waiting room at all those people going through the same anxiety, worry, being terrified and for some, knowing that their treatment is not curable. Too many young people sat there! cancer has no age discrimination, I hate cancer I truly do.
My new Oncologist who really is a lovely lady gave me the usual check over and again spoke to me about hormone therapy. I guess they have to make sure that I am happy with my decision. I still believe I have made the right decision for me and my quality of life and she seemed happy with that. She doesn’t need to see me now until the New Year after my surgery. It is hard to believe when I next see her it will be 2 years after first diagnosis.
After such a happy few months I have now hit a bit of a blip. I had been worried that after all the excitement of the holiday and the wedding I would feel on a bit of a downer and true to form it is here!
This last couple of weeks haven’t been the best at times. I have a constant pain down my left shoulder and back, pretty sure its muscular as I don’t seem to be able to do anything “out of the norm” these days without suffering with aches and pains. Honestly I feel like an old women most of the time its crap it really is! BUT…those demons have been creeping in and of course I am thinking all sorts! I have tried to keep it to myself but my mood…grumpy, quietness and sadness has got the questions coming. So I am now being nagged to get myself to the doctor. I know everyone means well but I don’t want to go! I don’t want to be that paranoid women that I am fighting not to be. Yes of course I am worried but I just need to give it a little more time to see if it sorts itself out and if not I will then go.
I am finding it a challenge some days to be “normal”, now treatment has finished it’s easy for people to forget and expect life to be back to normal. I understand that and I am sure I would be just the same. But I don’t think life will ever be normal for me again. Don’t get me wrong I don’t want to be dwelling on the past and thinking poor me every 5 minutes but with all the treatment I have endured this comes with changes to your body and health and definitely your mind!. I am a member of a forum (small group), we all had chemo around the same time and it helps to know I am not on my own feeling the way I do, aches, tiredness, lethargy at times, worry etc…they all seem to be feeling/fighting it too. I totally understand that those around me just want me to be back to my old self and believe me I am trying, but sometimes it is just too hard and it is a struggle to fight it some days. I don’t think people will every truly understand unless they have been in that situation (which of course I don’t want them ever to be). But…that is okay too! I don’t want pity and maybe at times I need someone to kick me up the backside and tell me to get on with it.
So today has been one of those challenging days! I don’t suppose it helped sitting and watching a film I recorded a while back called Living with Dementia. It was about a 50-year-old man who got diagnosed and how his life was changing for not only him but also his family. That programme did not set the mood well for today! Dementia is close to my heart, having my step mother bed bound with it. So today I have been thinking about how life was before dementia, life when as a family we would go around the house and have wonderful happy family times (especially over Christmas). Now I go around and see my step mum in a bed 24/7….Dementia! another cruel illness. I know this is life and I know so many others are going through even worth tragedies but it doesn’t make it easier.
Not a great few days from me, I am hoping it is just a blip! maybe post holiday/wedding blues. I will try and cheer myself up and start thinking more positive. Starting with not watching any depressive films on T.V.
I will update closer to my surgery, here’s hoping I will be in a happier mood then 🙂
AUGUST – NOVEMBER 2016
Where has the time gone??? so what has been happening in my life since July then? hmm wish I could say it has been all good but I would be lying to be honest! Don’t get me wrong it hasn’t all been bad but I had hoped my mood would have picked up and for the most it has I guess. I have had a few months where negativity has certainly crept in! I don’t know whether it was because my expectation was set to high! I loved the way I felt after my treatment ended, positive thoughts and very little dwelling on the what ifs! Unfortunately it didn’t stay that way and I have had a couple of rough months where I just couldn’t get some awful thoughts out of my head.
Yes I am selfish! I want to see my grandchildren grow up and get married, yes I want to be in my children’s lives for as long as possible, yes I want to be there to support them, hug them when they need it, offer my advise when they need it…I want to be able to spend many many good times with them all, I want to grow old with Gary and have more wonderful family holidays building amazing memories…. I know so many people never get to enjoy the things that I have already done so yes I am being selfish but I can’t apologise for that, that’s me, that is what keeps me going in life, and I wish that for everyone in the world, good health and happiness.
So how have I got through those days? I guess being so busy at work has helped, not much time to dwell on things when you are rushed off your feet and when I finish work I am that exhausted my brain just hasn’t the energy to process any thoughts! So I guess, keeping busy is the key!
I did wonder if all those negative thoughts were due to the fact I knew I had surgery coming up. All these things are a constant reminder of the fact that my life has changed and just reminds me of what I have gone through and how scared I still am at times!
Maybe I need to practice what I preach! I am constantly telling people to be positive and not to waste time or energy in worrying about things we cannot change! My friend often says to me….”Lynda what would you say to your patient’s?”, and I know I would say to them everything that I should be telling myself!!! This is work in progress…..
Pre Operative Assessment Clinic
So I have my date for surgery, 15th November, day after my birthday! prior to that I have my pre op assessment which involves ECG, Bloods, BP, Urine test, Height and the dreaded weight!!!, swabs, signing of consent forms etc. etc
My friend (who is a nurse) kindly organised for me to have my ECG and bloods taken at Grantham Hospital which saved me the long drive to Lincoln. When I had it done they gave me a print out in an envelope to take to my surgeon. Being a nurse the curiosity got the better of me, so when I was in the car I opened the envelope to see what it said. Now I am not an expert on ECG’s but underneath the graph it said ABNORMAL, along with some other bits which I now can’t remember! Have to say this wasn’t what I was expecting and felt slightly worried, so now what? Well to cut a long story short I spoke to my friend who understood more about the ECG then I did and with her speaking to her boss and her knowledge it put my mind at rest that all was fine and it was nothing to be concerned about! phew! The rest of my tests at Lincoln went fine and so surgery was booked for the 15th!
Week before surgery I got a telephone call from the hospital saying that unfortunately due to an emergency they had to cancel my operation and rearrange for the 17th. I was so taken back with the call I didn’t realise that the 17th was only 2 days later anyway. Once it sunk in my thoughts were with the person that would be having surgery in my place. It wouldn’t have been a planned reduction like me, it was more likely to be someone who had a tumor that needed removing as soon as possible. I tried my hardest not to dwell on that but it was hard knowing how that felt, having cancer in your body and how you just wanted it out!!! I hope whoever it was is recovering well and is cancer free.
I have really tried not to think about surgery but this time I am really scared! I am scared that I wont wake up! Now, this will be my 7th General Anesthetic and I can’t ever remember feeling this scared so why now??? I was even contemplating writing some letters to Dan, Lisa, Gary, Callum & Mia just in case! but I doubt I would have got much writing done through the tears! Thankfully I came to my senses and didn’t write any letters.
Not only am I scared about not waking up, I am also incredibly anxious about having the cannula inserted in my hand/arm. If you have read my blog from the beginning who will know all the problems I have had with cannulas and I am beginning to think I should have asked for some tablets to calm me the night before like I got prior to chemo! I honestly think I have post traumatic stress when it comes to cannulas and veins!!! so much so that I have not taken any patient’s bloods since then and I don’t think I ever will be able to again.
17th November 2016
So here we are……
I don’t have to be there until 11.30am which is much better than last time as I had to be there at 08.00am which was a long day hanging around. I knew I was going to be going down to theatre in the afternoon and was expected to stay over night mainly due to how I am after G.A …sickness, low blood pressure etc. Gary in tow and Lisa following in her car off we went. I hate the thought of Lisa driving all this way and spending all day hanging around, especially as she will get home late and then will be up early morning ready for a 13 hour shift! Don’t get me wrong I couldn’t do any of this without her support believe me! but it doesn’t stop the mum in me worrying about her. There was never a question about her not coming, I didn’t dare mention that!! To be honest, if she wasn’t with me I don’t think I could have gone through with it. Lisa has been with me from Day 1, through all the horrible times and now hopefully it will be happier times.
We were taken up to the ward when they did the checking in etc and final paperwork and have to say the staff were really lovely and welcoming which was nice. Mr G (my Surgeon) came to see me, such a wonderful man in every way and a fantastic Surgeon. He has such a calming aura about him and makes me feel that I am in safe hands. He said he needed to measure me up and the nurse said “He needs to put an arrow where he is going to operate” to this Mr G turned round and said “Its a little more than an arrow, stay here and see”….Well honestly it was like spaghetti junction with red, blue and black lines I couldn’t believe it and have to say the nurse said she was shocked too!
This is just some, there were a lot more believe me!
Next to come along was the anesthesist. Great big bloke who said it how it was, just what I needed to be honest, any sympathy would have tipped me over the edge to be fair. So everyone seen, got my gown and paper pants!!! all ready for the go.
Just after 3pm they came and said they were ready, so a hug and a kiss to Lisa & Gary and off I went…no going back now…..
This time they took me straight into theatre, I didn’t go in a seperate room for them to put me to sleep. Mr G came up and did some more drawing on me and the Anesthesist appeared again and asked me how I was, to which I replied “I am ok”, his response was “well lets cut to the chase and tell me how your really feeling” :-). I told you he says it how it is! He reasurred me that I would be waking up and would be in safe hands. Before I knew it, cannula was in and off I went into the land of nod!
The next thing I remember is hearing my name….”Lynda wake up, open your eyes”…in the background I could see Gary and Lisa but I just couldn’t wake up no matter how hard I tried. I can remember briefly saying I felt sick and was given some anti-emetics and can remember no more! Honestly I feel so bad that both Gary & Lisa had spent all day hanging around for me and I just wanted to stay asleep!!! I have no idea how long they continued to stop but eventually they went home as it was clear I was staying over night no matter what.
I woke up in the morning and can honestly say I felt on top of the world! I was so happy I was awake and I didn’t feel sick! – result!! I had some breakfast and sat in bed just thinking thank goodness this is all over. I hope I NEVER have to go through any of this again. Yes I was sore but seriously I was so happy to be alive. The nurse came to check the wound and said I had quite alot of bleeding so they needed to change my dressing before I could go home. I was given a follow up appointment for a week to check the wound and another for 2 weeks for the pathology report.
The Pathology report is to do with the tissue they cut away, they check that thoroughly to check there are no cancer cells lurking around. There is no reason why there should be but I do feel quite anxious about this. I guess anxiety will never truly leave me, every mammogram will bring anxiety for me I know. I am praying that all will be fine and the tissue will be healthy.
I really hope so……
Home sweet home…..it’s so good to be home. Now my challenge begins….sitting around is just not me! I know I need to rest and recover but I do find that hard. I have been signed off work for at least a month and told that it may be longer. However they didnt rule out that I may be able to go back after a month on light duties but it would need to be just that! Normally I would be pushing to be back almost immediately but the way work is, stress, lack of staff etc it would be madness for me to push it! for once I am going to think about my recovery and stay off like they suggest.
Itch, Itch, Itch….its driving me crazy, how I just want to rip those dressings off and itch! Don’t worry I wont, I may be impatient but I am not completely stupid 🙂 Pain is bareable, keep taking the pills which seem to work but have felt a bit sick on and off. Thankfully I still kept my box of pills from when I had chemo so I have every anti sickness drug that I could possibly need. The brusing is certainly coming out, looks like I have been given a good battering to be honest! However….through all that, apart from the swelling I do like the look of being “levelled up”
So here we are entering another year! It’s been a while since I have updated but that means one thing doesn’t it? it means I have been living my life, right? So I will try to think back over the past 6 months and fill you all in what has been happening….
First things first…..Surgery on my “good boob”. Swelling has now gone down and as much as I thought I wouldn’t be bothered either way, I have to say I love my new look! I didn’t realise just how much this surgery would actually impact on how I feel. My clothes now fit a lot better and its made me feel slightly “normal again” ….when I say “normal” what I mean is….I don’t look in the mirror and get constantly reminded that I had cancer because of the shape of me! Don’t get me wrong, I will NEVER forget that I had cancer because the emotional scars are very much etched in my mind but visually day-to-day it is so much better.
So the next reminder is creeping up on me…..the dreaded yearly mammogram! cue anxiety again!. As I have said on so many occasions I am so so grateful to the NHS for taking such good care of me and although the mammograms are very reassuring they don’t come without a certain amount of panic and anxiety. Apparently there is a word for this……SCANXIETY
I am most definitely suffering from this and probably will do every year! So I will sit patiently for that letter to drop through my letterbox any day now.
25th February 2017
The letter arrived….but not the one I was expecting! it was for my follow-up appointment with my surgeon following surgery, it was for the 10th March. Off I go to my appointment to see my surgeon, he is the most kindest, sensitive person you could wish to know and more importantly he cut that cancer out of me!!!
He was really pleased with the symmetry and happy with the way everything went. He asked me if I had my mammogram and when I said no he was surprised saying I should have had it done in January. I know I could have phoned up for this appointment but….I didn’t! I guess it was due to the fact that I am so scared.
Well…..no time to get scared today…he said “ok we will do it now” ….”What right now?” I replied in shock….”Yes right now” he said….
So no time to panic and off I went….I wasn’t looking forward to the pain, because last time it was really painful! but pleased to say it wasn’t too bad! I think the pain last time must have been a bit to do with the radiotherapy too.
So, here we go again….I asked when I would get the results. The reply this time was….I wouldn’t get a letter unless I needed a recall. WHAT????? no letter?????? I have to say this worried me a bit….What if the letter gets lost in the post I said???? The lady could obviously see I was anxious (again!!!) and said I could ring up in 2 to 3 weeks and see if the result was back if that made me feel any better. So off I went with that in mind. I was quite proud of myself this time as I didn’t have a complete break down in the room like last time!…..so now the waiting game yet again, 2 weeks thinking What if??????.
About 2 weeks later I just pulled up on the drive from work and there was Gary stood at the door with a letter in his hand! Now believe me I can spot a letter from Lincoln County almost with my eyes shut, I have had that many!! I am sure you can imagine what was going on with my mind at that moment! my stomach must have done a million flips in those initial few seconds. I looked at Gary and said ….Well???…absolutely terrified of the answer. His reply was “Well I don’t know I haven’t opened it”…..OMG, why would you greet me at the door with a letter in your hand and not have opened it. I went inside and felt absolutely sick to the stomach. They told me I wouldn’t get a letter unless there was a recall. All I could think was, please god not again!
I opened the letter and straight away my eyes focused on the first line…..We are pleased to inform you that your mammogram appeared normal. Happy Days 🙂 I did a little happy dance around the kitchen then thought to myself….why on earth did they tell me I wouldn’t hear unless there was anything wrong! I think they need to be clear on what the procedure is as it does cause so much worry believe me. I do understand that the NHS have to save money but don’t say one thing and then do another right???
So another year ticked off clear, happy days most definitely. I have also started to go to slimming world to try to become more healthier. Now I look “more normal” it has motivated me to lose this excess baggage I am carrying around in abundance!! Its a slow process but a steady 1lb a week in the right direction.
Now I can look forward again….. lots to look forward too as I have a new baby granddaughter due the beginning of June and prior to that a lovely holiday in the Dominican Republic.
Back from another amazing holiday :-). Holidays are very important to me now, they always have been but my outlook to so many things have changed over the past 2 years. Holidays are a must every year, we need to make lots and lots of memories and enjoy life to the full. So with that in mind we have decided in 2018 we will have 2 holidays!!!!! well why not hey? we work hard.
Welcome to the world Jessica Spinks :-)…..my beautiful granddaughter was born on the 2nd June and I couldn’t be more proud of my daughter Lisa. A few little blips to keep us on our toes but compared to the trauma of when Callum was born there was no comparison. She is absolutely beautiful and I look forward to spending lots of time with her.
11th June 2017 – So today will be the first day that I will have all my 3 grandchildren together for the first time as we are visiting my daughter. Lots of cuddles for Nanny and lots of photos of course :-).
Getting ready to go….. having a shower and I thought to myself, I had better just check my boobs (as you do! or should I say, I hope you all do!!!). Not expecting to feel anything but some discomfort as it is still quite tender in places to be honest. So there I was pressing away and then…….horror! I felt a lump in my “good boob”. I think I froze at that moment and for a few seconds I was too scared to feel again. However, I needed to, so felt again and yes there was definitely a lump. To say I felt sick is an understatement.
I got out of the shower and walked into the bedroom, looked at Gary and he could tell instantly something was wrong. What is it? he said……I have found a lump……What? Where? are you sure? he replied……I asked him to feel it, part of me hoping that I was actually imagining this. But….no he felt it 😦
Those next few minutes I can’t really remember only that there were tears….yes a lot of tears! If you have read my blog from the start you will know that Gary finds dealing with this sort of thing really hard (like I am sure many others would). I am not blaming him in any way as we all deal with stuff differently. I needed to speak to someone who would bring me back on a more stable level as we were about to go and visit my daughter and all my grandchildren and I needed to do that…I wanted to do that! So I phoned one of my friends, who true to form said all the right things and just enough to make me pull myself together for our visit.
On the way to my daughters, Gary said to me…your not going to mention anything to Lisa are you? Initially my thoughts were NO of course not she has just had a baby and has enough to cope with. But then I thought hang on a minute this is Lisa we are talking about here! She would not appreciate one bit me holding this from her. I know my daughter well and I would not have been thanked for not sharing this with her. She has been through this with me every step of the way right from the start and she had more than enough on her plate then. I had to tell her….
We arrived at her house and at that point no one else had arrived, we were both in the kitchen and she asked me if I was okay…..she knew I wasn’t (we are mother and daughter after all and we know each other so well believe me!). So I told her, she felt the lump…and then the sensible Lisa kicked in……
- “Right, okay it could be anything here, fatty lump, cyst etc” she said
- “but what if it isn’t”? I replied
- “well we will deal with it, just as we did before” she said
- “But I can’t go through all that again”…I said
- “Yes you can and you will, and on the positive side, if it is the unthinkable it will be a new cancer not a secondary”
….at that moment in time I just couldn’t even bring myself to be thinking it could be cancer but I knew she was right. What choice have I got? no choice really, I have to deal with whatever it is. I just don’t want to have to deal with all this crap again.
I don’t know how I did it but I managed to focus on my beautiful grandchildren and push those thoughts as far to the back of my mind that I could. All in all it was a lovely afternoon and made me realise how lucky I am to be blessed with these 3 beautiful grandchildren.
On the way home though those thoughts soon appeared their ugly head. I knew I had to make an appointment first thing in the morning so I had to telephone work to let them know I wouldn’t be in. It’s very difficult phoning work when you’re not actually “ill” but the psychological impact is immense. I knew that I would not be able to focus on my patients and in the job I do I just cannot risk that.
I managed to sleep on and off but woke up in the morning wishing this was just a nightmare and I had imagined it all. But unfortunately not, the lump was still there. So I got an appointment for the morning and off I went.
The doctor had a feel and said yes there was definitely a lump and I would need to be seen at Lincoln. She explained that she wouldn’t fast track me (which is where they see you within the 2 weeks) as she said as I am “in the system” they would see me before then anyway. She said if I hadn’t heard anything by the middle of the week to phone my Oncologist secretary. I left thinking…..here we go again, the waiting game.
Throughout my diagnosis and waiting for biopsy results the hardest thing through all this was waiting….waiting for appointments…..waiting for results…..there is no way of getting around any of this but any person diagnosed with cancer will tell you the same…the waiting game is so hard!
Midweek, and no letter or phone call so I telephoned my Oncologists secretary who informed me that yes they had received the referral but she needed to speak to the Oncologist to find out what they do next!!! I asked her if she could ring me and let me know and her response was……Umm well I could if you want me too!…..WTF….yes please I do want you too! honestly this isn’t like waiting to see if you have won a prize this is about my sanity here!!! I did get the call later in the day to say it would now be passed to my surgeon and if I had heard nothing by Friday then to ring his secretary….all this passing from one to another. I just want an appointment as soon as possible because I feel like I am going stir crazy here!!
Friday comes and no letter so I telephone the surgeons secretary only to be told she had now gone home!!! I spoke to the receptionist on the breast unit and explained how anxious I was and to be fair she was lovely and said she could imagine how I was feeling. She said she would speak to the surgeon who was currently seeing a patient and then ring me with hopefully news regarding an appointment. Unfortunately no phone call came that evening so now I have to wait until Monday! How I got through the weekend I will never know, lack of sleep, lots of worrying and wishing every minute away until Monday arrived.
Monday 19th June 2017
Honestly I couldn’t wait to get on the phone to the Breast unit. I spoke to the receptionist who I had originally spoke to on Friday and she said they had sorted me an appointment and a letter was ready to be posted. She asked me to hang on and she would tell me when it was…..4th July….WHAT????? I couldn’t believe it, I told her that this would be going into the 4th week since I found the lump, I just can’t wait that long or else I would go completely insane. She apologised and said it was the lack of appointments for the ultrasound. I was asked to phone the breast care nurses to see if they could push it forward. I did phone the breast care nurses but it was an answer phone, so I left my message and just hoped that someone would get back to me as soon as possible.
I had this week off work as annual leave anyway as the plan was to spend time with my daughter and help her. I got in the car and off I went, I had only just arrived and noticed I had a voice mail on my mobile asking me to ring them. I couldn’t dial that number quick enough. They told me that they had managed to get another doctor and this had opened up 4 appointments and if I wanted I could have an appointment first thing the following morning. Did I want it???? too right I did.
How strange to get off the phone and feel so happy! happy that I was going to be seen but also scared at the same time. The morning couldn’t come quick enough and Lisa along with baby Jessica came with me. I felt so bad that Lisa was coming with me with a new-born baby but there was no way she was letting me go without her. If I am being truthful here I am so pleased she did insist on coming. So we arrived and off we went to the breast unit, they greeted me by first name (which is lovely, but sad that they have seen me so much they know me!) we sat in the waiting room where I have been so many times….I looked at Lisa, and she said, well the first time we came here Callum was a baby and now here we are with Jessica as a baby. Thank goodness she said she isn’t having any more babies as I don’t want to make a habit of this!! We sat in that waiting room and a sense of dread came over me, my stomach was churning and I felt more nervous than any other time I had been here. Maybe it was because last time I didn’t know what was coming, this time I knew so much more, other than the result of course!
We were called into the room and asked to take a seat while they went to get the surgeon. We sat in that room (again) with the desk and tissues in front of us! Lisa looked at me and said….No eye spy today I haven’t the energy….I had to smile! those that have read my blog from the start will understand the eye spy bit.
In walked my surgeon, I was so relieved it was him. He is absolutely lovely and having operated on me twice he knew more about my boobs than anyone!!! He examined me and straight away said to me….I am pretty sure this is fat necrosis caused by surgery. He explained that the position of the lump would also lead him to think that way. However, he said I would need an ultrasound scan and possible drainage if this was confirmed. He went on to explain that a necrosis does have similarities to a tumor and if they had any doubts then they would do a biopsy. He said he would see me after the scan.
This put my mind at ease a little but I had been here before, they were adamant it was a cyst and when they stuck a needle in there was nothing to drain so I ended up having a biopsy…..and a week later told I had cancer. So to say I was still apprehensive was an understatement.
I went straight in to the scan, as soon as the radiologist put the probe on she said…fat necrosis. This was in the first 10 seconds so she must have been pretty sure. What a relief, I looked at Lisa who was smiling. She then went on to say she would stick a needle in and drain what she could. It was then that I felt nervous, what if they couldn’t drain anything (like before), they would then have to do a biopsy and then I would have to wait another week for the results (like before)…..
No numbing of the skin, needle straight in OUCH! actually it wasn’t that bad considering. I was so relieved to see liquid in that syringe!!! that confirmed it was an oil necrosis cyst.
Fat Necrosis and Oil Cysts in the Breast
Fat necrosis happens when an area of the fatty breast tissue is damaged, usually as a result of injury to the breast. It can also happen after breast surgery or radiation treatment. Fat necrosis is more common in older women with very large breasts.
As the body repairs the damaged breast tissue, it’s usually replaced by firm scar tissue. But some fat cells may respond differently to injury. Instead of forming scar tissue, the fat cells die and release their contents. This forms a sac-like collection of greasy fluid called an oil cyst.
I then had to go back to see my surgeon who confirmed everything and reassured me that everything was good. He told me not to worry and to see my Oncologist in September and then he would see me early next year when I have my next mammogram. Honestly I wanted to kiss him! but I didn’t, I used my self-control 🙂 He turned to me and said….now go and enjoy that baby. How nice was that?
I don’t think I could quite believe that I was walking out of the unit knowing that everything was okay. I honestly cannot tell you the relief I felt….so there was only one thing for it….(after the phone calls of course) and that was to celebrate! So Lisa and I had a Krispy Krème doughnut ha ha… we know how to celebrate!!!
I think I am still in a bit of shock as I think I had started to prepare for the worst. I am so thankful that I don’t have too. The lump is still there but I was told that it may slowly reduce but not too worry if it doesn’t. If it became painful then to phone the breast unit straight away and don’t worry about going through the G.P next time. Hopefully there wont be a next time 🙂
So just a little reminder to all you ladies and gents out there…..PLEASE PLEASE PLEASE REMEMBER TO CHECK YOUR BREASTS ON A REGULAR BASIS….If there is anything and I mean anything that concerns you, get yourself to the Doctors. Don’t be scared, life is precious and we need to act on any health worries to ensure we can appreciate this life for many many years to come.
So…..On with enjoying life again but I wont become complacent and will continue to check my breasts every couple of weeks. I value my life so much more these days and I have so many more memories to make along the way.
Well it has been quite a few months since I updated my blog. My plan is to update every year when I am due my mammogram. Since my last “scare” I had a pre-planned appointment in March to see my Oncologist and my yearly mammogram. So what has been happening since my last blog entry? I would like to say I have just been enjoying my life with no worries but……
So for the most, that is exactly what I have been doing “enjoying life”, but true Lynda style it wouldn’t be that simple would it??
Before Christmas I developed a really bad cough which just wouldn’t go, I didn’t go to the doctors until I was forced because as we all know the NHS say… go to your Pharmacy etc etc. However, after trying just about every cough medicine money could buy my cough just seemed to get worse and I was beginning to feel a bit breatheless so I succumbed and booked an appointment. I was told I had a chest infection and was prescribed antibiotics and steroids. After a week had past I was expecting to feel 100% but I didn’t really and still had this niggling cough in the back ground. I didn’t go back to the doctors until a few weeks later to be told yet again I had a chest infection! So second lot of antibiotics. Due to the length of time I have had the cough they recommended I had a chest x-ray. Que the panic! what are they looking for?? Do they think something nasty is going on??? Having to wait for 2 weeks didn’t really help my anxiety but I am pleased to say the X-ray was clear phew!!
We are now nearly 8 weeks since this cough started and still it hadn’t cleared up so again off I went to the doctors ! It was at this point my mind started working overtime…. Just why isn’t this cough going after all this medication??? what if the cancer had spread to my lungs???? get the picture? Oh how I hate feeling so negative but I have never had a cough for so long in my life! I think the only thing that stopped me from going completely out of my mind was that so many people that I know seemed to have a cough also, and the x-ray I had done was clear. The doctor didn’t really know what to say to be honest, she listened to my chest and said it was clear this time. So now what? she said she would try me with an inhaler and to use it before bed which would open my airways and hopefully help me to sleep. Oh I forgot to say, I have had so little sleep because once I start coughing at night it goes on and on and on and on……its a wonder Gary didn’t suffocate me! maybe its payback for all his snoring!!! The doctor said she would see me in a couple of weeks and if no improvement then they would need to investigate further. Panic stations again! I am not good when the words “further investigation” gets mentioned. Please, please, please let this inhaler help!
So that night I took the inhaler and guess what? I slept all night with no coughing! and I am pleased to say that for the most I am coughing very little. The inhaler is making such a difference. I am yet to go back to the doctors for my follow up appointment so I have no idea whether she will suggest I keep with the inhaler for a while or not. Watch this space…
I would like to say that is all that has been happening health wise but unfortunately not :-(.
So….for about 5 weeks now I noticed a rash on my “good boob” a rash around the areola. At first I just thought, oh its just dry skin but then started to think…. I wonder??? I told Lisa because as you all know from reading my blog she is the person that can calm me in a panic especially when it comes to my breasts!!! As normal Lisa was her normal calm self (well on the outside at least!) and said to me “look mum, just go to the doctors and get it checked out”. I knew she was right but as I knew I had an upcoming appointment with my Oncologist I thought I would wait until then. After all it just looked like an eczema rash. Of course this didn’t stop me worrying so I did what we all probably would do….
I go to Google! like you do! (even if you are a nurse)
type in…..rash on breast…..and this is what came up…..
Que panic!, it cant be that though can it??? I was reading on the sites that most of the time it usually starts on the nipple first and that isn’t the case for me. I must have checked every site on the internet that said rash on breast! for the most I thought to myself….Nope it doesn’t sound like Paget’s disease to me but then I stumbled across a site that said it can present like a eczema looking rash!
So now what? well I had my mammogram booked for a few days later and then I had my Oncology appointment a week after so hopefully that will put my mind at rest right???
Off I go for my mammogram which comes with its own stress and anxiety! but this time my anxiety was more focused on this rash. I had my mammogram at Grantham this time which is where they first found my original lump. Since then my mammograms have been at Lincoln. However as I am not back at Grantham…all I kept thinking was, I hope the same doesn’t happen again!
The mammogram wasn’t the most comfortable but this is due to the treatment and surgery I have had. Its very tender still and it certainly brought tears to my eyes Ouch! When it was finished I mentioned to the lady about my rash and asked her if she had ever come across anything like it. Why I asked her I will never know because I know they cant say anything! She said she thought the Macmillan nurse was in her office and that she could ask her to take a look if I wanted. Yes Please!!! so off I went to her office.
This is where all my senses especially common sense just disappears! Heaven knows what I was expecting her to say….I guess it was something like….”oh its eczema, nothing to worry about” but nope! she looked at it and said….It could be Paget’s disease! Noooooo don’t say that please 😦 I told her what I read about it starting in the nipple. Her reply was, “not always”! you need to get that checked out.
I thanked her for looking and just walked out and thought WTF….It wasn’t what I wanted to hear. I wanted her to say it was nothing to worry about….but I know if she said that I would still have worried so it was a no win situation really.
So I had my mini melt down (quite mild considering!) and then phoned Lisa. Que the ever positive guardian angel to the rescue. Sometimes I look at her and think who is the mother and who is the daughter here! God what would I do without her? she keeps me sane, she puts things into perspective and gives me hope.
I had my appointment with my Oncologist a few days later thank goodness. I went on my own as Lisa was at work and I wanted to go with a positive attitude as much as possible. I really felt quite calm considering, that was until I was sat in the waiting room. Right in the middle of the chemo suite and radiotherapy department, so many memories, so many worries and then suddenly I felt a little panic set in! Thankfully I didn’t have to wait long.
My Oncologist is such a lovely lady and she bounced in that room asking me how I was….and I guess expecting me to say, I am great thanks!! but not this time! She appeared shocked saying today she was going to discharge me from her care as it was now nearly 3 years clear. She gave me a full examination and as I laid there expecting reassurance, yet again I was disappointed.
“Unfortunately you are going to have to be fast tracked to the breast unit as you will need a biopsy”
My heart sank, I asked her what she thought but she couldn’t tell me either way. She explained to me the only way to diagnose Paget’s disease was to do a biopsy. It wouldn’t show up on a mammogram either. In view of this she said she wouldn’t discharge me and I would need to see her again later in the year. So off I went….back to work, mind working overtime. I wanted to go back to work because I knew I would have to focus my mind somewhere else. 2 days later I get a call from the Breast Unit saying they had an appointment for the Saturday and could I make it? Too right I could! the sooner I get this sorted the better.
So Saturday arrives and off I go, with Gary in tow! Unfortunately Lisa was working so was unable to come with me. I felt reasonably okay about this as I knew I would not get any results on that day anyway. So here we are again sat in the breast unit, I hate how familiar this place is to me! The staff are just wonderful but it holds so so many sad moments for me along with fear. We didn’t have to wait for long before I got called. We walked into the room and the Macmillan nurse turned to Gary and asked him if he was okay (he clearly didn’t look okay!), she said he looked terrified and more worried than me. Poor Gary, he is no good with anything medical but he wanted to support me. I took a look at him and told him he would be better off waiting in the waiting room. I really couldn’t cope with him passing out or anything like that! I felt sick as it was and needed to concentrate on myself. Reluctantly Gary went out.
So here I was, sat behind a empty desk with only my thoughts. No Lisa today to say “shall we play eye spy mum” :-). Thankfully it was only a few minutes before the lovely Mr G (my surgeon) came in. He is like an instant calming machine.
So top off (he has seen my boobs that many times it is like second nature to me now). He told me he was going to do a deep biopsy but would use local anaesthetic first (thank goodness!). It was a good job Gary wasn’t in the room at this point as I think we would be picking him up off the floor!). The biopsy didn’t take long but I had to wait for half an hour afterwards due to it causing quite a lot of bleeding. They put a pressure bandage on which seemed to do the trick. I felt well and truly trussed up! I asked Mr G what he thought, and again he couldn’t really tell me one way or another. He asked me if it itched and I said No feeling happy, thinking that was a good thing but unfortunately it wasn’t the case. He told me it would have been better if it had itched!! Oh god! that is not what I wanted to hear. BUT…..the good news is, my mammogram came back clear and he said that if it is Paget’s disease it will be early stages….
To say I feel sore is an understatement! I guess having a biopsy to an area where I recently had surgery will be tender!
So here we are…..I have to wait 2 weeks for the results, 2 weeks of anxiety and worry. The waiting game sucks! but as long as the outcome is positive then it will be worth it all.