Friday, 28 December 2012

On the third day of Christmas my Doctor gave to me.........

So we had a good Christmas - quiet - as ironically my Mother-in-law came down with flu and so it ended up being just the 4 of us after all.  I was, however spoilt rotten as were we all. I ate too much and drunk to the excess and fell into bed exhausted and content. Boxing day passed pretty much the same and then came the hospital appointment yesterday.

First of all I met the Oncologist Dr Sarah Smith and ironically she had the nicest head of hair I have ever seen. I couldn't stop staring at how gorgeous it was. I continued to stare when she discussed putting in for the "Hereditary cancer gene" test. She told me she would make arrangements for the paperwork to be sent to me, however as I am aware that most cancers are not hereditary I was not unduly worried. She however continued to tell me that the test - if it is offered to me - would involve a simple blood test, yet it would take a couple of months for the results to come through - bet Sharon Osbourne never had that long to wait! Unfortunately, Katie my daughter - who we had promised to take to the sales afterwards - sat in on the appointment. Dr Smith told her she shouldn't worry as all my female family that had died of breast cancer had been in their late 40's. She is only 17, but I am 46!

She then went on to discuss how large the mass of cancer that had been removed from my breast was, along with the fact that even though everything was taken away along with the lymph nodes, the cancer that I had was very fast growing and if I had some particles floating about my body cells that were too small to see under scrutiny, then it was possible that other parts of my body could quickly become infected. So in this instance I was to have a bone and brain scan in the next week or so and further treatment would start within the next fortnight. She then asked me if I wanted to know that with the type of cancer that I had, what my odds were for survival? I blinked a few times and quickly told her that I had decided that I didn't want to know. I just stated that I am sure the good old NHS have got my back and I would take my chances and have the treatment.

This involves 6 sessions of chemotherapy every three weeks over the course of around 4 months as long as I am up to it. A cardiology appointment has been booked for New Years Eve to ensure that my heart is strong enough to take the treatment. The first 3 sessions involve some very invasive chemo made up of a cocktail of three different types of drugs being put into a line - which I will have to have surgically inserted at Addenbrooks hospital in the next week or so under a local anaesthetic - this would go into a main artery through my arm and into my chest. This line would stay in for the whole of my treatment.
Dr Smith told me that my hair would fall out completely within 2 to 3 weeks after the first session of chemo. So I get to have a wig fitting beforehand. I was then told about the other side effects I can expect - joy! All I can say is hopefully I won't get them all.
Then the last three sessions are a different type of chemo. Apparently all this is the best chemo that money can buy.
We also touched on the radiotherapy I would have,  again quite invasive everyday for 3 weeks. This will be administered to the breast I have had reconstructed and near my collarbone, as this is the next lot of lymph nodes that could be infected. After this I have to stay on hormone drugs for 5 years and have regular check ups.

Now although none of this is a surprise to me, it now seems real - very real. I didn't realise the urgency of my condition and the speed of which my cancer can grow. I also didn't think that the possibility of waking up and finding my hair on the pillow would be a reality, I thought it was just something that people said to be scaremongery,  not a fact.

I asked Dr Sarah Smith what the good news was? She just did that small laugh that people do when they don't have any answers. Lastly, she asked if there was any questions, I looked at my daughter and my husband and muttered something about having to take everything in. She nodded her head and agreed. I then signed my life away once more on a piece of paper that says the aim is to cure. Blah Blah Blah.

When we emerged from Dr Smith's office I went to the toilet and wept, I wept because Dr Smith had lovely hair and mine was going to be gone in a matter of weeks, I wept because she delivered everything to me in a perfectly simple way that I could understand - and I understood too well everything she was saying. I wept even more because my daughter was in the room and had heard everything that her mum had to go through and I wept because I thought I can't snap out of this and make light of it. I wanted to wallow in self pity, but I had got to put being a mother first. So I dried my eyes and came out and got into the car all dignified, even though I was dying inside.

All three of us went to a cafe in Bedford and I couldn't help myself I broke down in tears and so did Kate. My husband had tears in his eyes as he rushed around getting serviettes for us to dry our eyes on. The cafe was packed but none of us could help ourselves. An argument broke out, as I kept apologising to Kate telling her I should never have let her come into the office and hear all of what was said. She told me she was 17 and it was her right to know what was happening with her mum.

I knew that if she wasn't there I would have sorted myself out and told both the children a watered down version when I got home. The fact was she had heard and I knew it was pointless to keep it from my son as she insisted that he was told. So we told him - and scared the bloody life out of him. Andrew and I argued he walked out. I shouted at the children.

Half an hour later when we had all calmed down and Andrew asked me how I felt, numb was the words that came to mind. I didn't want to tell any one as quite frankly I couldn't be bothered. Close friends texted and asked I told them to read my blog. Family called and I told Andrew to talk to them.

Today, I am still wallowing in self pity. I have eaten Christmas pudding for my tea, and I have washed my pain killers down with red wine. I've cuddled the kids, and the cat. I've hung on to my husband - wordlessly.
I know that I will come out of this very soon - but not today. Today is for me to feel sorry for myself. Tomorrow - with a bit of luck - I'll be back to my old positive self, cracking jokes and looking forward to the future. The future that WILL involve me being Cancer free and watching my children grow up. A future where I won't be scared to live each day without worrying if its spread, If its come back or if its hiding somewhere, waiting to pop up when I least expect it.

Saturday, 22 December 2012

All I want for Christmas is a new boob...........

So here I am three days before Christmas up and about and more or less pain free. ( I have my medication under control) A little bit blonder ( Courtesy of Carrie from Hair Perfection) and a little bit wiser. I've got ruby red glittery nails ( Courtesy of Donna of Smart nails) and I'm feeling more or less normal.

I've spent far to much money on presents for some people and not enough for others - just blame the drugs. However I have managed to sit on the floor and wrap them, but its escaped me to post any Christmas cards to anyone. I wrote lists for the food and "to do lists" I managed to catch up with East Enders and paid all the bills but I forgot to send out the blooming Christmas cards! All the food and booze has now been purchased but I know there still some bits I have forgotten - I just can't think what.
 My in laws have decided to come for Christmas dinner, not sure if you remember,  but my father in law was having a hard time after having Radiotherapy. They managed to drive over here last Sunday, they had hardly been out for weeks - my mother in law stated that Andrex can have their shares back now. However, we still ensured a safe path to our loo if he needed it while they were here. Anyway, over bacon sandwiches and mince pies we asked them if they would come for Christmas as always.  ( My Dad who is coming up for 80 is spending the day with my sister and my nieces are probably spending it with boyfriends. Mum lives in New Zealand so that's not going to happen. How time change.) Anyway, the proviso is that we get in plenty of toilet roll and I don't lift a finger to cook as Andrew and my mother in law have agreed to make the dinner between them. I hesitantly agreed but as I've always maintained - no one touches the roast potatoes. THAT IS MY JOB. No cancer or anything else for that matter is going to stop me from making the roasties, no man or beast dare even try!

I've been to the hospital twice this week, once to have my dressings changed - thank god, and again yesterday for my results. The surgeon ( who took away the cancer and lymph nodes) asked to take a look, so after all the dressings were taken off the words " Look at that" made my eyes water. I cannot believe how fantastic my breast looks. Everything has taken and the skin that was cut from my back has blended in and made my breast look wonderful. My side and armpit are still really swollen, and my back where they took the muscle and the skin still really hurts, however everything is coming together really well. My arm where the nerve and lymph nodes have been removed, is getting better every day. I can lift my arm above my head and the feeling is slowly coming back, but the best thing is that they got all the cancer. The tumour that they took out of the breast was 8cm, but only 4 out of 10 of the lymph nodes were infected. Basically this means that the cancer didn't spread to anywhere else.
I will still have to have chemotherapy and other treatments, but the cancer I have will be receptive to hormone drugs which is great news, so there is a good chance that I can be cured. Obviously I will have to wait 5 years to hear that news but with all the checks and treatment coming up I am very hopeful.
I see the oncologist the day after Boxing day to find out when treatment starts,  but until then life is good.
I'll also get an appointment with the plastic surgeon within the next month so he can see his amazing work. I then get to discuss having a new nipple. Apparently a machine can tattoo the areola - how amazing is that?

The day after coming out of hospital I  booked a hall and I've arranged a New Years eve party, so all the wonderful people that are in our life can all get together. I figure that by then even I can look half decent if I get a dress that covers my boob but still shows that I've got two! Also I want to end the year on a good note and maybe I'll be well enough to have a bit of a boogie! After all you've got to look forward, haven't you!

Sunday, 16 December 2012

Its me and I look the same

Hi everyone, sorry I haven't wrote for a while. I have been through every emotion, pain, happiness, sadness, you name it I've been through it. I feel more on a even keel now. Morphine free I think. So I want to tell you how its been for me and everyone around me in the last 10 days. However, I don't want this to appear to be a sad recollection of my time in hospital. So I will just give you a brief synopsis of how it was. First of all I just want you to see a letter that I sent a couple of days ago to the Director of Nursing. On Tuesday I will be meeting up with this lady after I have been to the Breast Clinic to have my dressing looked at. Anyway here is the letter:

To whom this may concern                                                                                                   

I arrived on the Richard Wells ward as a surgical patient on the 6th December 2012 at 7.30am I was booked in for Breast Surgery, a mastectomy with a Latissimus Dorsi Reconstruction. This is where the problems started. I was told by a lovely apologetic nurse that unfortunately there was not a bed available for me, but she was working hard at trying to find me one – I didn't doubt it.
Unfortunately, in the meantime we were left in the staff room – it was quite comfortable but I felt that the staff although very pleasant and apologetic to my husband and me, felt uncomfortable eating their food and taking their breaks with us sitting in there – and quite rightly so we ourselves kept apologising. However, by the time we spent a considerable amount of hours in the staff room it had became quite apparent that the Richard Wells ward had more problems than just a lack of bed space.
During my stay, I experienced a great deal of pain because staff did not have the time to attend to me. On the second night I waited hours for my morphine to be topped up. Admittedly, this is quite sketchy in the amount of time, but no one could get another cannula into my arm or hand. However, I know I was left for a good few hours as I was panicking and texting my husband. In the end I asked for a doctor but again I waited for ages and indeed it took a while for her to fit it as well. Circumstances that shouldn’t have happened if the members of staff involved hadn’t been so busy elsewhere.  This may seem like an old cliché that you read about in the papers or watch on the television, however the medical staff that were involved were never at any time at fault – but when you experience this first hand it is without a shadow of a doubt the most soul destroying, inhuman experience to every happen to me.
I watched nurses on the Sunday running around like headless chickens; they could not keep up with the patients needs. When you are surrounded by people in pain, phones ringing, buzzers continually going off and cries of “help me” when you yourself are in agony, words cannot begin to describe how I felt.
Nurses were apologising left right and centre and there was no time for one on one patient care. I felt guilty ringing my buzzer asking for pain relief, I was constipated, I was desperately in need of a jug of water and my bed was so uncomfortable that I couldn’t move – and quite frankly I was not the only one!
The old lady in the bed next to me pleaded with me to help her – and I couldn’t. She along with the young girl the other side of me needed to go to the toilet. Suzy was running backwards and forwards between both of them. At one point in-between pleading, the old lady messed the bed. This was at lunch time – I could not eat.
The woman opposite also kept crying out in pain and – as I sat in the middle of all this, I eventually managed to stagger over to pull my curtains as I did not want to see anymore. I put my earphones in and cried and cried. After an hour or so of crying Suzy managed to pop her head around the curtain and ask me if I was okay and did I need to talk. I told her that that would be lovely but she didn’t have time did she? She shrugged and smiled and again apologised.
I was sick of hearing Sarah and Suzy saying to everyone “Sorry I’ll be there in a minute” “Sorry no we don’t have any more beds” or “I’ll be there as soon as I can” Sarah left her shift and handed over without being able to change my dressing – which she had been promising me all day, or to give me a suppository.  I know she tried her very best to get to me and did indeed hand over this information to the next nurse. However, by the time my husband turned up later I was in complete meltdown crying and generally so upset about what I had seen and heard, and my complete experience of the day.   I had the total realisation that each and every member of the staff on the ward, was, despite their best efforts unable to make a difference in patient care. Quite simply, they are too overstretched, too exhausted and too emotionally drained.
 Ironically I have no doubt that the sickness record on this ward alone throughout the staff is extremely high. I just hope that none of them end up on this ward.

In short, something must be done. I never want this terrible experience to happen to anyone else – and yet I know this is an everyday occurrence.

Wendie Webb

In patient 6th December – 12th December 2012

So you see, that was my experience in hospital - don't get me wrong the whole team were fantastic. On that particular evening I was moved to my own room so I could get away from all the noise.Not that I asked for it, I think the sister on duty took one look at me and decided I needed some sleep as  I was exhausted.
I had three drains in, one in my breast, and two in my back. After a good nights sleep one of my drains was taking out and I started to feel a bit more like me again - except for the pain. This was controlled better after I moved to my own room - thank god.
After 2 more days on the Wednesday I had the other 2 drains out, my dressings changed and I was allowed to go home. My Breast care nurse Rachel pulled a few strings and came to the conclusion that I would be better off in my own environment.

Here I am now in my own home - yes its been difficult, however the house looks great, all the Christmas decorations are up. Hubby and kids have been cooking and cleaning and running the house and me.
 I did wash my hair practically on my own today, can't wait to have a proper shower or bath after my dressings are off. I can sleep - albeit we have had to change sides of the bed with hubby - on my left side now. Lying down is painful as you can imagine as I have had a flap of skin and a large muscle taken out of my back, but I am getting stronger everyday. My reconstructed breast is amazing. It's extremely swollen and so is under my arm pit where all my lymph nodes were removed.. However it is looking good already. With my clothes on no one would ever know. I have to exercise my arm and my shoulder which is painful - but a must.

Who would have thought that 9 days after a mastectomy I would have been Christmas shopping. No I'm not cooking or cleaning yet, and it will be a few weeks before I can drive, but give me time. This Friday I get my results, and I am hoping that the cancer has only spread to the one lymph node and not to any of the others they removed.  I knew that they took quite a bit of cancer away from inside my breast as they informed me afterwards. Hopefully the next stage of my fight will be containment, but whatever it brings I've got my tremendous family and friends who I know will be there for me every step of the way - just as they always have been.

Tuesday, 4 December 2012

Everybody's changing and I don't feel the same

Today as the big op draws near I have cancelled all my plans. Plans which involved meeting up with friends. Don't get me wrong I'm not sitting here feeling sorry for myself -  reason is I'm sick to death of talking about cancer. Granted no one prepares you for how you're going to feel, you have to just get on with it. No - what's worse is there isn't anyone who can tell you how to deal with those around you, those special people who you love. Each and every one of them is different and no booklet, leaflet or professional who specialises in cancer can tell you how to deal with them - they don't know them like I do.  At this present moment in time - my husband who is always 100 miles an hour is asleep on the sofa - it is 8.15 in the morning. He looks shot to bits. When I talk to him he tells me he is so worried about me but he is exhausted. My son who is a very private 15 year old, hovered around me last night and kept hugging me, as we sat down he poured out how sad and scared he is. We talked and talked and have done our best to convince him that mum will be okay, he tells me that we have been here before and he is sick of it. My heart breaks a bit more for him and I cling to this tall man-child who is so brave yet so fretful, his eyes glistening with unshed tears and I curse cancer for doing this to him.  My daughter is in bed, I took one look at her exhausted white face this morning and told her to go back there. Filled up a hot water bottle and tucked her back under the covers. When we talked to her last night she tells me that she is not worried for me as she knows what a fighter I am, but her face tells another story - she is trying to be brave and carry on as if nothing has changed - but everything has changed. Apart from the fact that I cannot make this right for my immediate family. I also have friends and family in shock, friends that cannot talk to me as they break down in tears. Parents that are in disbelief that their daughter has got to go through this again and a sister that doesn't have a clue what she and my nieces should say to me. This horrible illness  affects everyone - and I cannot make it better for any any of them.
I am worn down and stressed out by looking at those around me. I want to rant and rage and scream because  my children should not have to go through this again. My husband's shoulders only have a certain broadness to them and my poor dad who is 80 next year does not know what to say to his little girl. My mum well she lives in New Zealand and I cannot imagine how she feels.

So all I can do is remain cheerful, stay positive and keep fighting for all those close to me. I am bloody well damned if I am going to let this stop me from living my live with the people that I love. I cannot allow anyone or anything to change my mindset, all the wonderful support I have had is immense but at the end of the day I've got to do this myself. 

Tomorrow is my last day until I go in for the operation. I've got a list as long as my arm on last minute bits I've got to do. So on Thursday I just have to get up and go to the hospital. I am assured that very good care will be taken of me. I just hope that while I'm away very good care will be taken of my family..........

Sunday, 2 December 2012

Thanks for the memories

This week's been one of the best week's ever. I've been spoilt rotten, taken out, taken away and had fantastic presents, cards and great words of love and friendship. In between all this frivolity, I've had blood taken, an ECG, x ray and just about every other test you can think of. I've been asked question after question about family history, past illnesses and medications that I'm taking. In between all this I've managed to have a laugh with all the nurses and doctors who've seen me, we've played guess the weight of the boob.            ( Obviously I will of course lose weight when its gone ) bit of a strange way to lose weight but well beggars can't be choosers  So that'll be at least 4 pounds I reckon!

Today while hubby and I were on our weekend away, in-between Christmas shopping - I really must stop spending now -  I found a shocking pink wig for when I start chemo - my son was not impressed, especially after I wore it with my black ear muffs to show him how cool his mum looked. I've also purchased a shocking pink sports bra that I'm taking in to the hospital to wear after the operation. I've also got some shocking pink false nails that I plan to wear as soon as I am able to. More new pyjamas, Christmas socks and to top it all a Christmas gift bag to put my chest drains in. So I think I'm all set. I did however draw the line at the Christmas nipple covers we saw in Ann Summers, although my husband was all for it!

I just hope that I can keep up with my positive attitude. If I'm honest I'm fed up with waiting, its been more than a month since I found out and even though I'm trying to stay upbeat, a couple of times today I've felt a bit tearful.  I've watched women go by with fabulous hair and I've looked at all the beautiful underwear in the shops that I can't wear for a while but most of all,  last night in the hotel after we came back from the fantastic restaurant that Andrew had booked we got chatting to a couple in the hotel bar. They had just taken early retirement aged 60 and were planning to spend the winter in Spain. All I could think was - am I going to get old with Andrew? Will we ever be in the situation where we can go away when we retire? Will I see my children grow up? Silly I know, I've got the mind set that I just want my boob taken away and replaced with a new one that isn't going to kill me but it doesn't make it any easier. When I look at myself in the mirror naked and see what I've always seen albeit a large scar running from just below my sternum to my pubic bone. I wonder what it will really be like this new boob will the scars heal as well and as quick as I did last time on both my chest and my back? Will the new boob be a good match, and will it look okay when I dressed and when I'm naked?

 So I've decided that I'm not going to read any more leaflets and booklets on breast cancer as it depresses the hell out of me. Instead Andrew has bought me Miranda Hart's -  Manuel for life, and I downloaded Mr Buble's Christmas album on my I pod. So unless he decides to turn up at my bedside and serenade me, I think I've got everything I possibly need to keep me upbeat and Christmassy. I just wonder if I'll be able to watch the X Factor final without my normal glass of wine in my hospital bed?

So this time next week, I'll have a new boob albeit no nipple, my pain should be controlled and I'll be thinking about coming home to see how the kids have decorated the tree and the house. To be fair at this present moment in time the house being decorated seems more daunting. So hopefully once we get this big hurdle out of the way ( the boob not the Christmas Deck's ) I'll then have the 2 and a half week wait till I get the results. So I'd best be prepared for that. One step at a time Wendie - one step at a time.....................