Monday 20 July 2009

Meeting my oncologist...

11th March 2008
Oncology. The branch of medicine that deals with the diagnosis and treatment of cancer. It's a department I'll be part of forever now, but glad that I'm going to get treated soon, real soon. I want to beat this thing, and I feel like I can win the battle. So far, I haven't given in.

We go along to the Georgina Unit. A room full of people, who's ill and who's not? It's difficult to tell. My sister, my Mom and I all sit down in the crowded waiting room. We chat a bit, wait a bit more then they call out my name. I jump up, and realise that the receptionist is looking for someone entirely OLDER than me. Yes, I really am too young to have breast cancer.
Suddenly, my Mom and sister jump up - "Didn't realise they'd called out your name - was expecting your maiden name!!" I suppose I'm more used to my married name than them - it's a shame all the hospital appointments have gotten me used to it though.

We go in to see Dr. Allerton, all find somewhere to sit and she starts the long appointment of taking my history, an examination (getting used to getting half naked by now!) discussing the chemotherapy, the need for radiotherapy and the preservation of my fertility.

"I would be happy to delay the onset of the chemotherapy by four to six weeks," Dr. Allerton says.
"Do you want referring to the fertility clinic?"

Of course, I say. "I have a contraceptive implant in my arm, will I need to have that taken out then?"

A rustling of paper, a flurry of phone calls and Dr. Allerton has rang the fertility clinic and discovered that I need this implant out, ASAP!! Hmmmm, wish I'd thought of this before. Oh well, have had other things on my mind - we even forgot to get the car MOT'd. She even rings a colleague of hers (a consultant in obstetrics and gynaecology who I know too) to try and pull a few strings, to get this implant out today but he's not trained in the procedure. I can sense some phonecalls of my own, using the cancer card to get around this problem.

Anyhow, the plan is to have some fertility treatment, save some eggs and start chemo as soon as I can. I'm to have a regimen called TEC, that stands for Taxotere, Epirubicin and Cyclophosphamide. Whenever I start it, I go into the day unit and have them administered via a drip, then go home the same day. I then have to wait three weeks until the next 'cycle' can start. I also will have other medication to take and will have be very careful not to pick up any infections from days 7 - 14 of the cycle. No socialising, no going into crowded places, no seeing small children, no visiting hospitals, care homes and I'll have to watch what food I eat and monitor my temperature. Sounds like quite a big deal to me. I'm also to ring up for advice if I get ill in any way!

Also, there are zillions of possible side effects - the biggies are alopecia (hair loss), risk of infection as I mentioned, mouth sores, gastric side effects, possibility of nausea and vomiting, fatigue - who knows what will happen though? I can have drugs for almost everything and I can try something called a 'cold cap' in order to help preserve my lovely head of long blonde hair - my pride and joy. I also met a wonderful, key person today - the chemo unit nurse Helen. She has quite nice short hair, blonde like mine and she suggests having my hair cut a bit shorter in order to help the cold cap work. Might have i cut like hers I think, will have to have a hair dresser appointment.

I'll also have to have a course of radiotherapy, where any remaining cancer cells will be 'blasted' to death - painless to me - over a course of a few weeks! That doesn't sound too bad. A million thoughts and feelings in my mind and heart now, when will all the treatment finish? When can I go back to work? All questions left unanswered, no-one quite knows the answers yet.

Dr. Allerton is busy on the phone, and has refered me to Midlands Fertility Services. "How much will this cost?" I ask.

"Well," she replied, "Usually in cases like this there is funding available from the local PCT, but the clinic will apply for you to see if you're eliglible. You'll need to pay for the initial consultation fee."

Well I'd better be bloody eligilble!! After all, I never asked to get cancer at my age, I've always wanted to be a mother and it feels like my hopes and dreams have been pulled from under me, like a precious priceless rug whilst there's nothing I can do about it, but hope that they be looked after whilst I get well and get rid of this invader. I know my life is important, and I'd all hope of having a child of our own up if it meant i'd live, but i think it's bloody unfair.

"WHY ME?"

On the way home, I arrange after some cajooling and big play-up of the cancer card to have my implant removed in two days time. Never been contraceptive free!! How scary! I suppose though I'm a married woman now, but have been warned by Dr. Allerton today NOT to get pregnant at all. The chemo drugs can damage an unborn baby and can lead to massive abnormalities - i'd rather not get into that situation, got enough to worry about.
Now, just to wait for the fertility clinic appointment and whatever lies in store for me there...

See you in a year...

So, I've been away a while - I'm sorry. It's a hard road to travel, the post cancer, recovery-process year and sometimes it's hard to deal with, hard to face. Have also had another health set back - but I am now recovering from that well and wanted to carry on blogging.

4th March 2008
Next apppointment then, bring it on!! Knowing there's not going to be any bad news from Mrs Carmichael makes going to the appointment easier. Also got my Husband and Mom with me so it makes it slightly easier. Mrs Carmichael's there to greet us, she's smiling that lovely smile and I relax a little more - can't relax too much, still got my guard up!

"So young lady, let's have a look at your wound then."

I scramble up onto the examination couch. "Gosh, you do heal well." The stitches were whipped out in seconds flat. "I am pleased, it means you can move onto the next part of the treatment."

Hmmmm, more questions I feel, more researching, more emotional torment to come.

"I want to refer you to the oncologist now, Dr. Allerton - she will discuss the rest of your treatment with you."

"Will I have to have chemotherapy?" This question has been in my mind since I first found out about the invasion into my body.

"Well, as your cancer is triple negative, it won't respond to any of the other types of treatment such as Herceptin or Tamoxifen, and as it is also aggressive, grade 3 breast cancer, it may mean that chemotherapy, as well as the surgery you've just had is the main treatment."

Great. Another load of crap to deal with.

"But, don't forget, the tumour was only 12mm and hasn't spread to your lymphatic system so the results were really the best we could of hoped for."

Ok. I suppose it is good news when you think about it....

"And because your cancer wasn't hormone responsive, there is a real possibility of you having IVF with your husband to store some eggs."

Ooooh, that sounds more like it!!

Mrs. Carmichael doesn't need to see me for a whole year!! Why so long? Will be kept busy by the oncologist she says.... little did I know then how busy it would be!!

Friday 13 March 2009

More results...

28th February, 2008
So, getting used to the waiting game now. Just got to try and keep myself occupied and not dwell on the possible results to come. The results that could change my life. My husband has some time off work to look after me after my operation, it's quite a revelation that I need help. My mom and sister also come and stay after the op and I'm trying hard not to shout at anyone. I'm dying to say, "I don't usually do it like that..." but manage to bite my tongue and keep schtum. I really appreciate their help and don't want to fall out with them over something so trivial.

So, about a week after my last operation and I'm relishing the fact that I've got the house to myself. Bliss. Beginning to get used to my own company, I'm not so scared of being on my own now with my thoughts. Just waking up after a lie-in..... the phone's ringing downstairs. Damn. I rush downstairs and answer 'Private' number.... this is the hospital - it's got to be bad news.

It's Mrs Carmichael. "Are you sitting down?" she asks. I do as I'm told. I stumble into my lovely gorgeous pink living room and look around at my perfect home and wonder why on earth she's ringing me at home. My world is going to be shattered, my life turned upside down even more than it already is. A million thoughts run through my mind in a split second.

"It's good news honey!!" she exclaims, "Your lymph nodes are all clear, the operation also showed clear margins. It's such good news I really wanted to tell you as soon as I knew so you could relax and have a lovely weekend."

I can't believe it, my results were the best I could have ever hoped and prayed for. No more operations, no more worrying whether the cancer has spread or not - it's gone from my breast and has been gone, cut out of me since the first operation. I can hardly believe it! I sit in a stunned silence for what seems like an age. I've got to tell my husband, I ring him on his work phone. No answer, I try again, no answer. I hope he doesn't think there's anything really wrong with me. Finally get through - "Everything's all clear!!!!" I shout down the phone to him. How much joy can one set of results bring! It's made the wait all worth it now.

I'm so thankful for the simple kind act of that phone call my consultant made that day. It felt like from then on there might be a chance I can get through this trauma, this assault on my body. She tells me there's still some other stuff to discuss in my outpatients appointment next week, but it can't all be that bad now.

I'm ready now. Ready for anything this cancer can throw at me. My body has saved me so far. It's produced a lump in a place I would notice it so I knew there was something wrong. It's also got through these two operations and healed my scarred breast. It has kept going, kept fighting this when others might have given up. I have to maintain the faith that it will not let me down, no matter what gets thrown at us from now on.

Monday 23 February 2009

Operation No. 2...

20th February, 2008
The morning of my operation finally arrives. I spent the night before in hospital so worried about sleeping but amazingly I slept quite well. Just wish I could have breakfast but know I can't. My husband arrives at 0815 to wait with me. Plenty of people coming in and out, getting me ready for my place on the treadmill of theatre, operation, recovery room, back to the ward then the wait for discharge. I feel a bit like a number, not a person then the surgeon appears...

"Morning Beautiful" Wow. This lady is one in a million.

She goes through the consent and the operation that determines the spread of the cancer. She also mentions other risks like infection, bleeding, lymphoedema. Lymphoedema - I'll file that word away for further research at a later date. My risk is 5% but I'd rather get that dreaded incurable swelling of my arm than risk the cancer spreading. So I sign on the dotted line.

Off to theatre I go, being wheeled on a trolley like a patient. I've even got on TED stockings - those sexy tight white knee high stockings to help minimise the DVT risk - knowing my luck lately I'd get one of those too!! Now into the operation I go - I'm so brave I'm so brave I say as I go off to sleep and I entrust my body and life into the hands of the doctors. This is so hard.

I'm awake, it's over with. Still sleepy so I drift back off. Not in any pain so quite content at the minute.

Awake again, back with my husband and he looks relieved to see me. Try to sit up......

Can't sit up, I can't put weight on my left arm. No-one warned me about this. Also just nudged my wound drain sticking out of my side and realise there's blood and stuff seeping everywhere. This is crap.

The lovely nurse helps me sit up, changes my sheets and I get a drink. So at least things are getting better. Just concerned about my arm as I never realised how much my arm would be affected by the axillary clearance.

Time to get dressed. Feeling better by the minute as I've had toast now and even a visitor from work. Got up to the loo too and glad I can at least manage that on my own. I ask my husband to help me. Made sure the curtain is pulled at the door so the whole ward and nursing staff don't see my naked, wobbling form. As he bends forward to help me with my trousers, his bottom moves the curtain open and there's people out there looking at me!!!!!!

"AAARRRRGH, watch what your doing!" I exclaimed. Was going to get stressed then but manage to smile. I'm sure they've seen it all before. My dignity was left firmly at the door when I became a patient and I suppose this is what happens when you're ill. Yes, think I'm ill now.

Today's made me realise that I think I am now officially ill, unwell, poorly, convalesing, Tom Dick and whichever way I look at it, I'm not my former self. The cancer has taken away the old Kate and I'm not sure when the new improved model will re-emerge. Maybe the reality has hit me and I realise as this illness and it's consequences unfold, my perspective on life changes dramatically. The values I held and the seemingly trivial worries I had before seem a million miles away and getting over this and through the next trial is the ONLY thing that matters. I'm totally confused at this time and trying to muddle through as best as I can.

Another factor that reminds me I'm ill is that dreaded wheelchair!! Any Top Gear fans will understand this but looking back now, the wheelchair to me is as dreaded as the VW Beetle in the Top Gear challenge when they crossed Africa. You know, the bloody thing nobody wanted to have but they'd use it as their last resort!!! I am so pleased to go home to my waiting family and pizza for tea (notice a theme emerging) and insist I can manage the drain myself (which I can, because I'm a clever girl!) and I leave the hospital to return next week. My husband pushes me homeward bound in the wheelchair, hopefully never to be used again.

Well, only as a last resort...

The waiting game.

So, the next bad thing about having cancer reveals itself.... the waiting game. Didn't anticipate this part being so stressful. Glad I've had plenty of other things to occupy my mind since being diagnosed with cancer. Telling my relatives and friends wasn't at all nice, I felt so responsible for their sadness and shock but I couldn't not tell people. I had to spread the word. That Tuesday consisted of telling everyone and it seemed to drag on forever. Eventually, my close family were assembled at home - and that telling look of shock and despair was evident on their faces. This is doing my head in, it feels like a wake, my wake. I'm not dead, I'm not dying, I'm not ill and I don't need self pity today. I need support and reassurance that everything will be ok. It could be so much worse I keep telling them, plenty of other things kill you you know....

I don't think my family could understand my positiveness on that day. I can completely understand and empathise with their shock at the news as I feel the same but I need to keep a grip on myself because I've got a lot to face yet and I don't know how much worse it's going to get. I couldn't stand it if anyone started crying or shouting about the unfairness of it all. So I send them all away and my husband and I go to Tesco's for our comfort food tea - pizza and wine.

I'm browsing the wine aisle at the supermarket. "Do you mind if I buy some wine" I ask him. I don't usually drink that much and I don't want to drink myself to death or start on a road of ruin but really could do with something I enjoy. I pick up my favorite bottle of Rose wine, but my husband interrupts, "I think you need a box of wine, not a bottle!!" And all this from my anti-drinking tee total husband! I think he's amazing!!

So the next day my husband has the day off work and I have to go back to the hospital for mammogram and chest x-ray. Still don't know what further surgery I'm going to have. Can't believe I might have to lose my breasts. It's such an unknown feeling, having to face the prospect of no boobs and facing the rest of your life without them. But this situation is SO out of my control, can't even imagine getting through today let alone next week or next month so will not think about it yet. My appointment is in the afternoon and my parents also accompany me. We all sit in the waiting room, all sat in a line feeling pretty glum and miserable. What a sight we must have been, my husband gripping the plastic 'patient's property' bag, my Mom and Dad making small talk and me with a theatre gown on - you know the sort, open all at the back and I'm just contemplating my breast being squashed into the machine....

Mammogram done, next chest xray. I suppose the surgeon wants to check there's no other nasties in my chest - let's hope there's nothing there except my swinging brick of a heart. I'm incapable of any emotion except black fury. The young radiographer is smily and jokey as I enter the room for my xray and asks if I could be pregnant.

"I hope not," I say bluntly. "I've got breast cancer."

Wish I never said that!!!! I felt so bad for venting my anger and frustration on someone who is meerly doing their job. I should know better with my job as a midwife. I shouldn't use my anger and sadness at my situation on others. I must try harder. Maybe I said a prayer that day, I'm not sure now when I started praying about test results but I might of murmured a few choice words whilst I was being zapped.

The frustration inside me is building up and I just want answers to it all. The next few days consist of a few visitors, coffees with neighbours and organising my fate. I liase with the breast care nurses over the phone about my results and next operation and wait whilst my fate is discussed, decided and pondered. Then, a small chink of light on the horizon appears.

"The surgeon is happy to perform a lumpectomy only," the breast care nurse says. "The mammogram and chest xray were fine and the surgeon is quite happy to perform a lumpectomy and axillary clearance."

"There's a 20% chance that the margins (area of tissue with no cancer cells in it) won't be clear after this op and then you might need a mastectomy, but we won't know that until the results are back from the lab the week following the surgery"

More waiting but hey!! Odds of 80%! I'd take them anyday! I didn't realise until that conversation that I had been so worried about losing my breast but the relief is palpable.

My surgery is booked for the Wednesday and I'm left to get things ready at home. We spend the weekend stocking up the freezer and I cook a few meals to freeze. Even though my husband is perfect, he's not best pleased at the idea of cooking our meals so we take out shares in Findus crispy pancakes and Mr Brains faggots!! It's going to be a busy week.

Thursday 12 February 2009

Diagnosis

12th February, 2008
Got my outpatients appointment today for the follow up of my operation, got there for 0910 as planned. Mom and me sit giggling in the waiting room, and my name is called - that's me! Can't quite get used to my new married name being called out!!

Meet Mrs Carmichael again, she's so nice. She examines me and I ask, "So when can I go back to work then?" I've been really enjoying my time off, have had a busy time lately. How guilty I felt about enjoying my time off in the weeks and months following my diagnosis. There's a whole new world dawning on me as Mrs. Carmichael answers, "I'm really sorry but you won't be going back to work for a while..." My hearts pounding in my ears, I'm sat on an examination couch and I hold onto the edge as she explains that the lump they found was aggressive, invasive breast cancer. The room seems to be disappearing in front of me but I can here her voice and my mumblings as I try to take in what she just said. I can't see my Mom as Mrs Carmichael hugs me and soothes me a little through my tears but I know she's upset and in shock.

"How am I going to have a baby?"
"How am I going to tell my husband?"

She goes on to tell me that she is certain about the results, that they have sent the sample away to an independent hospital to be double checked and it is certain. She continues to hug me and I can't stop apologising. I feel like I've caused such a commotion and a fuss. I don't feel like this is happening to me and it feels like an out of body experience. When I think back a year, I can still visualise the room, my clothes, what I was doing, where people were sitting and it's stuck in my mind. The events of that fateful day keep replaying in my mind but maybe that will fade as time passes. But this week it's been particularly bad.

The breast care nurse, Hilary, comes in. They explain a few things which I can't remember now and then leave us alone. I need to ring my husband, Mom tries to tell me to wait until he comes home but he'll know when I don't ring him there's something wrong.....

"Can you come home straight away please?" I ask him. There's an achingly long silence on the line, and he asks, "Is it bad?"

"Yes, I'll meet you at home."

The nurse returns and we get taken to a room filled up with leaflets about breast cancer and she's reassuring me about the positives and the successful treatment and gives me leaflets to take away. I can't believe it and I can't stop crying. My details are checked and she promises to ring me today to arrange further tests. I need to tell work now before I lose my nerve. I carry on along to work (it's in the same hospital) and find someone in charge. It doesn't sound right, those words - "I've got breast cancer" - coming out of my mouth. I see my work friend and pull her into the office to tell her. It's total shock for everyone, each and every person I see I want to tell.

I've never understood my need to tell everyone I meet. Even months after the event, I still wanted to tell everyone I met and maybe it was a way of trying to come to terms with the demon within me. Maybe that's the reason for this blog but I certainly couldn't keep quiet about it. My husband reckons it's just because I'm such a chatterbox!!!! I can see many heads nodding and smiling now!

Just before I left Mrs Carmichael, I said, "You must have the worst job in the world, having to tell people such awful devastating news...."

"No," she said "I have the best job, I get to see you in a years time when you're back at work, and in a few more years when you come to see me with your babies."
And from that moment on, I had hope and it's never left me.

Friday 30 January 2009

Operation No. 1...

30th January, 2008
I got a lift to the hospital this morning, feeling a bit nervous but keen to get lump removed. Arrived at 0800, and after whirlwind of assessment, I meet my breast surgeon who was going to have such an influence in my life.

She examined me and looked at my ultrasound report from November 2007, "Show me where the lump is," she asked. I showed her, and she answered, "I think this lump feels bigger than those estimations in November." Thought it was just my imagination but obviously not, it had felt like it was getting a bit bigger but thought I was being paranoid. "Well, we'll get you sorted out very soon, don't worry." What a lovely woman.

Operation done, not too stressful - just stinging like mad where the lump used to be. They leave me to get dressed behind curtain. I disobeyed the rules in the information sheet and put my bra back on, I can't walk round without a bra!! Not with my 36F boobies! They've left my medical notes on the locker next to the bed.....shall I sneak a peak? Wouldn't you?

Flick through quickly quickly, the nurse might be back any minute..... Ah, operation notes. It's a good job I know what I'm looking for. Blah, blah, blah, lump excised (taken out for those without medical brain) sent for URGENT HISTOLOGY. Should have been worried but must have had foggy brain and I never give it a second thought. Nurse back now, having tea, toast and painkillers whilst waiting for my Husband to fetch me.

Finally, Husband here - he didn't want to have the day off work just to wait around so he's come straight from work. And he's bought a WHEELCHAIR!!! "They told me over the phone to bring it!!!" he said. Can't believe I've got to be taken to the car with a wheelchair!!! I'm not ill or anything. So, he wheels me to the car, I'm so hoping I won't see anyone I know.

"Never thought I'd see the day when I would push you in a wheelchair," my Husband remarked. Little did we know where today would lead.