Sunday, 30 November 2008

Company & comfort - Friday 28th Nov. 2008

Feeling much better by mid morning and Graham is cooking lunch for my Sissy Pat and brother-in-law Michael (Mike).

I shall expand a little - I have two sisters and a brother. Pat is the eldest, she is very special and loved by many including me. We laugh a lot and share each others problems, sometimes even sensing that something is wrong before we even know it - quite spooky at times. We often remember our childhood and Pat likes to remind me of the hours she had to spend tickling my back and singing silly songs. Also the time I walloped her on the shin with a poka, sorry Pat. Her favorite story though is the one involving my love for making dolls clothes and the time I cut a piece of red leather from the lining of Mums beautiful coat. Funnily enough I don't remember the telling off, maybe i was unconscious.

Pat has always been a 'mother figure' and her and Mike have a lovely family - three girls and two boys, Julia, Andrew, Helen, Dawn and Adam. All my nieces and nephews deserve a big thank you, they have all come up trumps for me since diagnosis, each one supporting me in their own special way. Currently their is a sponsored 'head shaving' to take place on New Years Eve. Thanks Dawn, and thanks to James (hubby) for allowing her to cut off her beautiful hair. Helen is the craft queen and has been busy making things to sell, including some super little knitted 'Breast Cancer Ribbons' - fab!

Julie - Oh lovely lady, it only seems like yesterday since you toddled around the farm at North Duffield delighting in the new lambs. You now have a great family, Dave with his natural ability to cook superb meals and Emily who is a real credit to you both. I like many others love being with you, especially when you've baked (is that cupboard love).

Andrew and Adam = Can't leave you boys out of course. I've been equally impressed by your kind words and thoughts. I know how difficult it is for you boys to relate to this kind of thing, but you've been really great and I've appreciated your communications, even if most of them have revolved around my appearance in the next 'Alien' film.

Chemotherapy Number One - 27th Nov. 2008

The day has arrived, i am nervous but also relieved. My appointment is 13.40p.m. but I decide to go earlier so I can look at some hats and scarves provided on a voluntary basis. I've been told that my hair will be falling out in two weeks, so I'm going to need something to keep my head and ears warm. To be honest, they're not really me, but I chose two or three and made a donation. I think I'm more of a statement sort of person, so I'll probably experiment at home. Ruth and Gordon confirmed my reservations, Gordon said I may as well wear a big sign saying 'cancer patient', so that kind of made my mind up.

I was made comfortable in the unit while my nurse prepared the line and several very large syringes containing my EC 90 treatment. A cannula is inserted into the back of my hand, the only brief bit of pain I had to endure really. My nurse then pushes a small amount of very expensive Granisetron (anti sickness med) into the line, followed by a steroid. As she does this, she carefully informs me of the minor, but weird side effects of each one. 'The Hedgehog effect' that's a good one. Suffice to say that these involve prickling in the nether regions and fizzing around the nose and head, very strange.

Now she explains that the first three and a bit syringes are the Epirubicin which she will push through the line very, very slowly. I must tell her if I feel any tingling or burning around the entry site as this aggressive cancer treatment eats healthy tissue and turns it necrotic (dead). Okerly dokerly I'm thinking! Also I must drink at least 3 litres of fluid to avoid bladder irritation or worse. Well, the procedure goes without incident and both cancer treatments (Epirubicin and cyclophosphamide) are given over a period of an hour straight from the syringes into the line. A quick flush and the line is removed, we plan my next visit (18th Dec) and I'm instructed on the importance of my medication. I have to have breakfast in bed, take my pills and wait at least half an hour to avoid a day of nausea and general unpleasantness. Home to rest and inform everyone that I'm ok, I've survived.

By evening I have a severe headache, this is apparently called the 'Hangover Effect', not that I can remember that far back - ha! Anyway it keeps me awake most of the night and when I do wake from a slumber, I'm in a cold sweat and feeling sickly. The headache persists into the morning, but I actually get up feeling pretty good.

Lake District - 24th - 26th Nov.

It's difficult writing a 'blog', much harder than I expected, mainly because I wake up in the night and worry that I haven't mentioned someone, or that others may be upset if I don't. Well, Joan and Gerry do deserve a special thanks, not only because they are a super couple, down to earth, very caring and easy to be with, but also because they really pulled out the stops for us during this week. 'A visit, no problem' said Joan, 'even if I have to re-arrange someone else'.

Joan & Gerry live just outside Keswick, overlooking Blencathra, how lucky is that. More to the point, how lucky were we to be able to spend a couple of days with them. Joan's cooking is perrrfect! Gerry is great fun and loves a discussion on current affairs. Fortunately me and Joan love the 'Dancing' programmes and the 'property programmes' so that was our evenings planned. We did however spend time in Keswick sampling the pretty shops as well as the charity shops, where Graham bought a super CD, only to discover the disc was missing when we got back that night (a cause of great hilarity). On Tuesday morning, the sun was bright and every peak was visible for miles as we tootled off to Kendall for the day. It was brilliant and we had some quality shopping time, lunch at Booth's and plenty of laughs. I was really sad to leave on Wednesday, but it was a great tonic. Thanks Joan & Gerry (P.S. I am tempted to put Gerry's picture on the 'blog' - you know, the one where he's wearing your pink filly pants on his head, for 'Breast Cancer Day'. Ok, maybe not, I want to remain friends.

Two Weeks and counting - 14th Nov, 2008

Ok, so now I know I potentially have some little cancer guys escaping to wherever takes their fancy and they could be setting up home over the next two weeks. Not much I can do, but try and fill the time doing nice things and being organised for Christmas. Fortunately I am well in front with this (sad, you may be thinking), but I love having my family and friends over. We don't spend a fortune, it's just good fun, silly gifts and good food (hopefully).

First Monday, we took Daisy May (the dog) for her first grooming to a little village called Reedness. We went into Goole while she was made beautiful on the premise of looking around and having some lunch. Not quite the experience we'd hoped, it's very run down and Tesco's was the most celubrious lunch venue we could find. Believe me, trying to spend three hours in Goole was extremely tedious. However, we went back for Daisy and were delighted at our brand new little girlie (yeah, that's sad too I know).

Tuesday and Wednesday we just chilled, Thursday I can't really remember. Friday was my pre-assessment day at the hospital. This went smoothly and gave us chance to speak to my oncology nurse and ask any appropriate questions. I asked the run of the mill stuff while having some more bloods taken, but couldn't resist asking if it was compulsory to go to Florida when you have cancer, as I don't like flying. Fortunately my nurse does have a good sense of humour and assured me it was not!

Sat. 22nd - we had our usual trip to York, where we meet up with a really good friend of ours Alan. I first met Alan while working with Christine and we became really close friends, soon arranging a joint trip to Skye (my heaven on earth). They had never been to Skye before, so we were able to introduce them to it's wild beauty. Unfortunately Chris and Alan were coping with a re-occurrence of her previously treated breast cancer and bravely facing the future, looking at ways to beat the disease and remaining positive. A more sincere, loving couple I have yet to meet and their love for each other was obvious. Unfortunately despite their best efforts, Chris lost her battle in April 2005 and last year Alan joined us in Skye again and we took Christine's ashes down to the Coral Beach, near Dunvegan, where with a few words and flower petals, we scattered them, illuminated by a fantastic ray of sunlight.

Alan has remained a good friend to us and my children. I value his advice and his words of wisdom, he doesn't trivialise or patronise and despite the still raw memories of Christine's loss, he is a real rock. He also provides me with great books - 'Dear Fatty' by Dawn French and Alan Bennett's 'The Uncommon Reader'. Thanks Alan.

Saturday, 29 November 2008

Results Day! 13th Nov. 2008

For me this was the scariest day since diagnosis, probably because of my ability to read between the lines of medical speak. Unfortunately I failed to prepare Graham for this, although I did say several times 'We'll know what we're looking at when I go back for the results'. I think Graham was convinced that the necessary had been done and we would just go on with radiotherapy.

I'm not saying that I was being negative, far from, I really hoped for the same, but those doubts were there and when MJ sat down and gave that knowing sigh, I knew once again that this wasn't what we wanted to hear. Good news first - the lymph nodes were clear. The bad news - my cancer was bigger than anticipated and he couldn't get clear margins. I have a Ductal Carcinoma in situ (DCIS), it's a Grade 3 (the more aggressive type) and there is some lymphovascular involvement. Because the DCIS is at the margins, MJ wants to start chemotherapy, just in case any of the little devils have escaped. This will be followed by Mastectomy. Bloody hell, that's a lot to take in and my first thought is 'how do I tell my lovely children, sister, brother, friends etc. Graham stays calm, but I know he's in pieces inside as he wasn't expecting this at all.

I can't remember exactly what I was feeling and I just nodded and accepted any reassurance or explanations. My cancer support nurse arranged for us to see my Oncologist straight away and he explained further the implications of chemotherapy and in particular my specific treatment EC 90. (mentally noted for further research at home). Prof. D said it wouldn't be pleasant, but he felt that the benefits of three months chemotherapy would maintain my chances of survival, holy crap. So my first date is set for Thursday 27th Nov., another wait and time to resign ourselves to a 'bumpier ride' than expected.

Discharge and the wait for results

Discharge was delayed due to an over enthusiastic drain. I waved my room mates goodbye on Saturday morning and apart from a sweet little old lady who didn't speak, I was alone. I did get to watch 'Strictly Come Dancing' and had my very welcome visitors. Unfortunately I had one unwelcome room companion. A young girl and her boyfriend, both with an attitude and more concerned about when they could have a 'fag' than the advice and help staff were trying to give them. The young lady had a real sinus problem and kept me awake most of the night with her adenoidal snoring. Fortunately she persuaded the Doctors to let her go home on Sunday and come back Monday for further tests. Sunday came, hopes were raised and dashed. MJ said another night just to be sure, oh okay then, who am I to argue.

Monday morning MJ finally visits in his usual cheery, whirlwind style. He says I can go home, but his comment on my surgery leave me with doubts - it had been 'technically successful' he said, but he couldn't guarantee that they had managed to get clear margins and he had removed four or five nodes for examination. I now had ten days to wait for the results.

Graham picked me up around 11a.m. and I was grateful to be back in my own surroundings and eat some delicious Graham cooked food.

I was overwhelmed by the cards, gifts and flowers which arrived constantly over the following week from ex-colleagues, family, friends, not to mention the visits and words of support. Thanks to everyone, you know who you are.

Family & Friends - My thanks

I think this is a good point to introduce my family and friends , a wonderful bunch of people with big hearts, not to mention big feet (only joking).

Graham Hodge - my hubby of 33yrs, my god I am so lucky to have him. We met at a little Folk Club in Bubwith, or at least I first saw him there, his hair was long and in natural ringlets and when he sat on stage playing 'And I Love You So' I knew I was smitten, such a voice, such a style and such a presence. Thanks God, he noticed me too, I think I was reasonable looking, very long hair, short skirt, you get the picture. Well, he made enquiries and then plucked up courage to ask me out. We agreed he could take me home the following week. Good plan, with one flaw, I had forgotten that I was doing the Lyke Wake Walk (18hr endurance over the North Yorks Moors).

Anyway the following week, determined not to miss my date, I went to the Folk Club and at the end we held hands and got into the car. I don't really remember much more, but Graham tells me I was snoring before we'd got more than a mile down the road and he thought he must be really boring. Actually I'd been walking all night and had no sleep. However, he was not put off and we arranged a re-run the following week. The rest as they say is history and plenty of it for us.

Since then we've had three children, lived in Swaziland for three years (where Louis was born), moved houses more times than I can remember and had a wonderful loving relationship. Graham is now a self employed musician and has played for several years at the 'Blue Bicycle Rest'. every Saturday and the 'Ate O'clock' most Fridays. He is an extremely talented guitar player and singer, with a mellow voice and an extensive repertoire.

Since my diagnosis he has been a rock and there is nothing he wouldn't do, I love you lots.

Ruth - our daughter, well what can I say, she's the eldest of our three, married to Gordon and living in Ilkley. Ruth is beautiful on many levels as well as being extremely driven in all she pursues - jobs, languages, travel and writing which is a passion she excels at. She is also a pretty wonderful daughter and together with Gordon has been a constant source of interesting DVDs, advice and support. I love Ruth because she is different to your average 30yr old and we feel like close friends as well as mum and daughter. Thanks Ruth for 'red knees' keeping me young and making life interesting. Thanks Gordon for looking after Ruth, being my researcher and great guy!

Joseph - Our eldest boy, a dead ringer for his Dad and with similar loving and deep characteristics. Joseph has many attributes, not least his giving nature, honesty and an unbelievable ability to build, connect, mend and fiddle with computers. Joseph is very deep and has much more to give than he knows yet. Thanks Joe for all the love that I know is in there and comes through in your hugs. I remember just sitting in hospital holding your hand and wishing I could say how much I love you, but of course I don't really need to tell you that. When you find your soul mate, she will be very lucky indeed. Start to believe in yourself and take some risks, everything else will fall into place and remember I/we will always be there for you.

Louis - Our youngest boy, who couldn't be more different to Joe and Ruth. Born in Swaziland (that's another story), we nearly lost you when you were a few weeks old, but you're a fighter and despite some very difficult times in your life, you have survived and turned into a beautiful boy. You remind me of me, both in looks and emotions at times. You're very sensitive like Joe and Ruth, but your sensitivity is always close to the surface and you're not afraid to show it, which takes people by surprise sometimes as you're tall with a goatee beard and very long hair. Your a grafter, loyal and loving. I love you very much and I see you growing through and growing up because of life's challenges. Coleen, your now intended wife is also beautiful and I think she's sees your beauty too, both inwardly ad outwardly.

Well I hope that sums up my immediate family, although I could write pages about all of them.

Post op continued.

Fish and chips for tea, ha, what a laugh. Actually I was feeling slightly hungry, but oddly enough as soon as the food entered my mouth it turned into cardboard, honestly I swear it did and there was no way I could swallow it without choking. So I settled for a cup of tea and another snooze. It was a long afternoon, broken only by further cups of tea, tablets, observations (BP, temp, etc.) and then thankfully visitors! yeah what a welcome sight. My family enter the ward and everyone thinks there's been an eclipse as they're all over 6ft tall.

Friday, 28 November 2008

Surgery Day - Friday 31st October 2008

Finally the day arrived, I have new pyjamas, dressing gown and slippers (funny how we do that). I arrived early as advised, only to be told I was last on the list aaagh! Oh well, never mind, we settled down to read some magazines. Eventually I was asked to go down to the imaging unit where radioactive dye is injected into specific nodes and checked. This was a fairly quick and relatively painless experience.

Back on the ward there seemed to be a hiccup with the list and I was bumped up the queue. Suddenly I was changed and checked and walking down to theatre. I have to say that I was extremely nervous, never having had a major operation and remembering my time in theatres. The only part i never like was being in the anaesthetic room when patients were put to sleep. It always made me feel faint. Now it was my turn and I'm scared. However, I needn't have worried, everyone was wonderful, the anaesthetist chatted away and the cannula was in, followed by a small amount of relaxant. A mask was put on with some oxygen and I remember thinking about each of my family in turn and saying 'make sure I come back'.

The very next thing I remember which seemed to be seconds later, was someone gently calling my name. I realised I was back and cried with relief. I did feel dizzy and sick, but this didn't seem to matter as it was over.

Back on the ward I wasn't well and my colour did give some cause for concern, my oxygen sats. were low and I felt very sick. This was probably due to some underlying Vertigo as well as the operation. It was a long afternoon drifting in and out of sleep. Incidentally, the dye they inject to locate the sentinal nodes for biopsy leaves the boob very blue and post op gradually comes out in the skin making you look a funny turquoise colour. Fortunately visitors were warned about this, which is just as well as it can be a shock.

My wonderful, talented Sean Connery look-a-like, Graham who I love dearly.

One Stop Breast Clinic York - 8th October

We arrived at the Breast Clinic at 07.45a.m and were warmly welcomed. By 8.15a.m. we had our first meeting with the Consultant who examined the offending lump and marked it for assessment. A short wait down the corridor and I was taken in for a Mammogram. A strange process where both boobs are squashed tightly between two plates, slightly uncomfortable, but ok.

Another short wait, followed by an Ultra-sound screening where my left arm was held above my head for what seemed like hours.

Back to the waiting room, it's now around 11.15 and we discussed where we could go for lunch. Next came another meeting with the Consultant, this one not so pleasant as he carried out a needle aspiration, which was painful. He asked me if I was ok with needles, I said yes, but don't let my husband see it. Graham stayed happily behind the curtains while they dug around. Following this we were advised to have some lunch and come back for the results - great what a service.

We returned at 12.15 and were ushered into the same room. My heart skipped a beat even as we walked in as the two chairs previously against the wall were now angled cosily towards the bench, in my nursing experience, set up for bad news. The Consultant came in closely followed by a Cancer Support Nurse, now I new I was in trouble. Mr MJ gave a deep sigh and then broke the results gently but firmly. It felt as though the whole world had stopped, I was frozen in time, how could this be happening. Graham's head had dropped between his knees and MJ kept glancing towards him, worried he might do a nose dive. Eventually he said 'I think you both need a cup of tea and time to think about what I've told you'.

We had to decide whether to go for Wide local excision (which MJ felt he could confidently carry out) or I could have opted for mastectomy. Both have the same survival rates, the only difference being that Lumpectomy would be followed by radiotherapy at Leeds.

We were left to talk this over with help from the Support Nurse and by the time MJ came back, I had decided to trust his judgement and go for the WLE plus radiotherpy. I have to say that MJ did stress that the area was larger than he expected and would be on the margins (clear margins are needed around the cancer). So the date for surgery was set - 31st October, it seemed a lifetime away, but here we go!

The beginning - October 2008

This is my way of recording my journey following a diagnosis of breast cancer on 8th October 2008. It is written with love and thanks to all my family and friends as well as those health professionals whose support has been nothing short of brilliant.

My diagnosis came as a huge shock, not least because I am myself a health professional and much of my time is spent advising and supporting employees through very similar situations. I did find a change in my left breast sometime around May/June, but it wasn't defined and I put it down to hormonal changes. If I am honest, by July I did have some anxieties about the thickening changes and I carried these round with me and on our holiday to Cornwall in August, by which time I was quite worried. On our return I made an appointment and saw my local GP. She was lovely and although she didn't feel it was anything to worry about, she referred me to York's 'One Stop Breast Clinic'