Fifty Two

Tuesday, 16 April 2013

I was just settling down to write my blog and had a quick squiz at Facebook as a warm up. This has become the way it's done. I was saddened to see that a friend of mine's Dad has passed away. He was one of the more 'understanding' of all our parents when we were gallivanting around London in our teens, falling in and out of love and nightclubs. Sadly he is not the only parent of a friend taken during this long cold winter. This week the sun has finally made an appearance. Hopefully that's the end of that.

Last Wednesday I had surgery to remove the remaining lymph nodes from my left armpit. A complete Axillary clearance. They actually have to remove everything, all the fat, tissue and nerves. The nodes themselves are tiny and shrivelled from the chemo and very difficult to find so it all has to go. The surgeon has to be very careful not to leave any behind as they may contain cancer which, even after chemo, could regenerate.

I woke up in the now too familiar recovery room with a burning pain down the back of my arm. No amount of pain relief got rid of it (I made them try). I eventually realised that it was from nerve damage and that there wasn't actually anything there hurting, my brain just though there was. I made the most of everything on offer and surrounded myself in a cocoon of opiates. My surgeon popped his head in and confirmed my suspicion. He also said that he had squished any nodes he had seen and hadn't felt any lumps.

Slowly my arm went numb. I was pushed down to the Sarah ward and given my bed. There are now only two in the ward that I haven't occupied. Husband settled me and left. Nurses came and went. I got up and made it to the loo without being sick (a first for me post surgery). I swallowed pills and then slept.

Thursday morning I felt much better. Really surprisingly well. I ate breakfast and waited for the stream of medical visitors. First the Physio-terrorists, then a Nurse, Doctor, Pharmacist, then another Nurse. The doctor checked my drain, had a look at me and pronounced me ready to go home. The second Nurse came to remove my drain - fantastic news as I had readied myself and the kids for it's visit home with me.

The Nurse took the dressing off and prepared me for the painful mini procedure. I became slowly aware of the fact that I had absolutely no feeling whatsoever in my armpit, down to my bra, all the way across my breast (this has been numb since the Mastectomy) and over the back to my shoulder. She was telling me that she was amazed how fast my skin had healed and that she was going to have to cut it away to undo the stitch holding the drain in place. It took her about 15 minutes to free the drain and then she had me deep breathing as she pulled the tube out. I didn't feel any of it.

Husband arrived to collect me. I was so pleased to be home but became quite emotional on Friday about the lack of feeling. Its very normal apparently to be over emotional post surgery. It has something to do with being removed from the safety of the hospital and the warm fuzzy drug haze and thrown back into reality. I moped about feeling very sorry for myself until my sister arrived from Cornwall and made me feel much better by likening my horrible scarred body to a patchwork quilt.

Waiting for biopsy results rather sucks the fun out of everything. That said we have been doing our best. Husband celebrated his Birthday at the weekend and we had a lovely afternoon at our local pub. I have that familiar feeling of people coming and going, speaking and listening, eating and drinking but none of it really sinking in. I'm looking forward to Friday when I get the pathologists report and results.

Tomorrow is Herceptin day. I'll go up to Guys and have a consultation with the Oncologists in the morning, a quick catch up with my Nurse and possibly a stolen pow wow with my surgeon. Then it's back up to the Cancer Day Unit to settle into a big grey lazy boy and have more poison pumped into me. My armpit is still numb but with a low ache so perhaps some feeling is returning. Strangely it feels like someone is grating the back of my arm every time it touches my clothes. Painful, confusing - as there is no wound there, and very annoying.

Fifty One

Wednesday, 3 April 2013

Fifty One

Oh, and I almost forgot! I am going to walk 10 miles in the Pink Ribbon walk at Leeds Castle in June for Breast Cancer Care. (not the most exciting thing to be happening in June as The Stones have just announced a gig in Hyde Park on the 6th and will be playing at Glastonbury too!) (I digress.....)

So, if you fancy joining me - and most probably carrying me, please send me your email and I can properly invite you to join my team. My number one daughter has named my team 'Carlie's Angels!'

If you don't fancy joining and carrying me, then please sponsor me and/or my Angels. I'll pop some links below - to my page and my Angel's pages as they appear.

Thank you kindly.

My Just giving page http://www.justgiving.com/Carlie-Buckley

One of my Angels http://www.justgiving.com/sophie-collins1

And a quick share of my Brother in law's page again as he will be running a full on proper marathon in a couple of weeks for Macmillan Cancer Support  http://www.justgiving.com/ouchtisamarathon

Fifty

Wednesday, 3 April 2013

Fifty

The longer I leave it, the harder it becomes. It's not the writing, and not the thinking of things to write. I never really plan what I'm going to write, I find that bit easy. Like when I'm talking, I could crap on indefinitely. It's remembering the important bits, that's what gets more difficult the longer I leave it.

The week after my Herceptin I started to get a pain in my left armpit. It was a constant ache and it worried the life out of me. I didn't mention it to my husband and texted my Breast Care Nurse instead. She couldn't comment and asked me to go in on Monday 25th to see the Breast surgeon. I needed to have a proper 'Hello' with him anyway that didn't involve hijacking rooms and stealing him from someone else's operation.

I went on my own. My Husband has been working more frequently now that he has the time and space to. It was lovely as always to see my Nurse and Surgeon. We talked again through the operation on the 10th and the time came for him to examine me. He felt my armpit and then went on to feel the glands in my neck and around my collar bone. He thinks I'd pulled a muscle and has no concerns about the pain. He also quite rightly pointed out that he would be clearing out ALL the tissue under that arm in two weeks anyway.

The next day I had to go up to the house in London to replace the paddles in the washing machine (although it turned out that the tenant was very happy to do it herself). I took advantage of the journey and arranged to meet The Ladies Wot Lunch for lunch. Always a massive delight and this was no exception. The local Tapas bar opened especially for us!

I then walked to Nunhead to meet one of the babies that my friends have been churning out recently especially for my cuddling pleasure (in my head anyway!)(as you know by now IT'S ALL ABOUT ME!) This one is incredibly cute and has her own range of chirrups and squeaks and looks like a small pretty pink alien in the same way that my number one did when she was brand new. Gorgeous!

On Wednesday 27th I went back to the Hospital again for my pre-operation examination. This involves blood tests, lots of questions, MRSA swabs of the nose, mouth and perineum! and in my case an ECG. This is because of the slight heart problem they detected before (remember it was nothing to worry about).

Thursday I was on Mummy duty while Husband worked and Friday we had a family day, cleaning the house and walking (via the local pub for crisps and juice).
On Saturday I met another new friend (brand new - one month old) He is the little brother of my God-daughter and is almost equally delicious as she. He behaved so brilliantly allowing us to all catch up over tea.
Sunday was the traditional family Easter at My Mother-in-Law's. The cousins all hunted in the garden while the uncles, aunts and grand-parents ate more chocolate in the house.

On Monday we had a Footsbarn visit. We are very happy to now be on the 'visit list' of some very dear friends who live in France when grounded and all over the rest of the world when not. They have recently returned from India and are planning tours and productions. It's always a lovely occasion when they pop by. We eat and reminisce and catch up and she teaches me again how to crochet! They brought me a daughter and a grand daughter too this time and even encouraged some other friends I hadn't seen for years to join us.

Yesterday morning (Tuesday) was much less fun and actually surprisingly difficult. My Husband, who has been working abroad now and then throughout our entire relationship, had to leave for Delhi. It's the first time he's been away for ages - probably the longest time he's been grounded. I was very brave but felt like a scared, insecure child inside. My morbid thoughts have been on overdrive and I was extremely relived to hear his voice on the phone when he arrived there safely.

I drove to London as a test run for me and the car before embarking on a long-overdue visit to Cornwall. The car was fine but I found it exhausting. I clearly have a long way to go before I can handle that level of concentration for an extended period of time. The girls and I had a lovely time visiting a family there and arrived back safely.

The girls and I had a perfect holiday day today, we stayed in bed till mid-day watching teenage prom romances. Finally emerging for lunch in tracksuit bottoms before wrapping up warm for a foray into the freezing weather and a brisk walk across the fields. We had a hot bath when we returned and got dressed up for the cinema where we watched The Croods with my Dad. He then headed home and we went for Sushi and noodles.

I'm missing Husband dreadfully but enjoying my full on Mummy time. The girls are relentless and I'm out of practise but we're doing OK.

Forty Nine

Wednesday, 27 March 2013

On the 20th March I set off on my own towards Guys. It was the first time I'd done the journey to the Cancer Day Unit without back-up. Even though I knew I was going for my 3 weekly herceptin, the place and whole procedure is the same as chemo. It was very hard to shake the chemo dread and I kept having to remind myself it would be different this time. I arrived for my treatment at 11am and was out by 2pm. I felt fine, slightly wobbly and in my own world but comparatively fine.

Everything has become a bit relative since having chemotherapy, I wonder how long this will last. I feel fantastic most of the time, sure - tired, snotty, sometimes with a bit of a sore tummy and or a sore throat but compared to the last six months.....

I was on my way to the Royal Albert Hall to meet my husband and a Twin and his Angelic wife for an evening of comedy in aid of the Teenage Cancer Trust. I was about four hours early! As I headed towards South Kensington a cloud began to collect around my head. I made it as far as the V&A where I stopped to take stock and decide what to do. I had a green tea in the cafe and watched the rest of a film I'd started earlier on my ipad (thanks again ladies). Then, refreshed I decided to have a wonder around.

On the first floor, in the silverware department I found a small leather sofa, hidden around a corner and off the beaten track. I sat and dozed for an hour or so and then logged onto their wifi and surfed for another hour. I couldn't have gone anywhere if I'd tried, I felt like my legs were weighed down with diving weights and another one was sitting on top of my head. Eventually I mustered the energy to leave, just as they were closing.

Seeing my Husband and my friends perked me up and we settled down for some much needed laughter. The evening went very well and the comedy was funny. It provided a very welcome distraction from the way I was feeling. We didn't make it to the end, I just wasn't up to it and we had a pleasant train journey home.

The afternoon and evening acted as a strong lesson to me. Just because I feel better than I did on chemo doesn't mean I can go gallivanting about the place on the day of my treatment as if there is nothing wrong. In this case the evening with friends had been booked months before my herceptin had been scheduled and I find it very hard to 'just give in'. That said, the next day I felt fine.. Well I felt fine compared to........

Forty Eight

Sunday, 24 March 2013

So, the day before we set sail (or wing then sail) I went up to Guys with Dad to be given the 'once over'. My Oncologist went into overdrive apologising for the Zometa mix up. Apparently it was just a big mistake. No one can work out how or why I was prescribed it but they are very, very sorry. It was actually a bit embarrassing how sorry she was and I can only assume by the level of her regret that it was she who pushed the button. Never mind, I wasn't given it and that's the important thing.

I also had a meeting with my surgeon, done guerrilla style - where my Breast care nurse sends him a text and he leaves theatre (where he is operating on someone else) and we kick some other people out of a room and have an impromptu meeting. He is very keen to get on with the next phase but thinks it will take at least a month for me to fully recover from the Neutropenic Sepsis so my full armpit lymph node clearance has been booked for the 10th April - 3 days before my Husband's birthday.

At 6am the next morning we piled the kids and the cases in the car (which is currently being held together with gaffa tape and cable ties) and headed for Gatwick. After a 5 hour flight and all the waiting around that normally accompanies such a feat we arrived, by coach, on the dockside of Sharm El Sheikh port. There she was in all her glory, the Thompson Celebration. She is 30 years old and is currently undergoing a much needed face-lift. Luckily we were hardly aware of the workmen during the cruise.

What can I say about the cruise itself? I don't think we'll go on another one and I probably wasn't well enough to be going on this one. Our cabin was fine, bigger than we expected and already refurbed, giving us a new shower room. The children were beside themselves with joy for seven whole days apart from when the eldest was sick on the coach just before leaving to go to Petra - part of the cruise we were very excited about. I had to take her off the coach and back on board to visit the Doctor, both of us missing the 8th wonder of the world.

We did all make it to the Pyramids, a stunning Mosque in Cairo, a lunch time cruise down the Nile. We watched dolphins playing in the wake of the ship and spent a wonderfully lazy day at sea being entertained by a ceaseless program of Butlins style events. We explored Aqaba in Jordan and visited a beach resort in Safaga, Egypt where we spent two glorious days snorkeling in the crystal clear Red Sea. My Husband saw a massive green sea turtle and we both followed a pair of courting giant octopus. The girls had their first taste of the underwater world and were amused by hundreds of muti-coloured fish and a possessive clown fish protecting his anemone.

The food was ok, like slightly upmarket school dinners. The other passengers were mainly over 60, extremely friendly and actually fairly good company. If anything, becoming a little too familiar. I was congratulated on too many occasions for doing so well considering... The over 60's have all had a brush with cancer, if not personally then someone they know has. They know the signs and after a few generous cocktails, couldn't wait for an excuse to give me advice/ tell me their tales. All very well-meaning and sweet but not what I went on holiday for.

Apart from the one vomiting incident we managed to swerve the ship's outbreak of norovirus but knowing others were suffering did slightly dampen the experience. By day seven we were quite pleased to be moving on. Especially when we got to where we were moving on to! We had three nights and nearly four whole days booked in a lovely, 5 star beach resort in Sharm El Sheikh. The hotel was beautiful. Our room had a separate room for the kids and a balcony - both were such a luxury after cohabiting on the ship. The food was exceptional and the kids club and water slides were great.

Best of all was the sea. The beach immediately gave way onto a shallow reef, teeming with fish, jelly fish, eels and hermit crabs. The girls paddled with their little bucket, filling it with treasures far superior to previous rock-pooling adventures. They hand-fed the fish with morsels secreted from the breakfast buffet and tried to identify each new spotting using their 'Fish of the Red Sea' chart. They stroked a baby camel and it's Father on the way to the Jetty. Each hotel complex has it's own jetty, they take you out over the shallow reef and enable you to swim and snorkel over the shelf where the reef drops into deep sea.

Both children astounded us with their bravery. They had a swim vest each (they can both swim a bit but not confidently enough for the deep sea) and they had their own masks, snorkels and reef shoes. They happily swam around, sometimes in very deep water, always holding hands with their buddy (me or my Husband) and showed us giant clams, multi-coloured coral and fish in every colour. This is the part of the Holiday I will never forget.

Forty Seven

Thursday, 21 March 2013

I want to tell you all about our holiday but I have to just mention the week leading up to it. From a keeping-up-with the treatment side of things it's pretty important.

I probably didn't rest enough. On the Thursday after my chemo I went into Tunbridge Wells with Husband to do some last minute holiday shopping. I felt awful but didn't really expect to feel any different as it wasn't even a week since my treatment. In the evening at home I felt worse still and my temperature started to go up. We called Mother-in-law and when she arrived to babysit we headed into the local hospital.

As I've said before, the NHS are (hopefully) saving my life and they are doing it for free. I hate to moan about any of them but in this case our local hospital has left me with no alternative.

On arrival, a chemotherapy patient with a temperature of 38 degrees or over needs to be immediately quarantined and should be treated within the hour with IV antibiotics. The risk is that the high temperature may be caused by some infection and if the patient has a compromised immune system the infection could get much worse very quickly. If the patient has no immune system or is neutropenic and the infection spreads to the blood they can develop Neutropenic Sepsis a potentially fatal condition.

I was given a room to wait in with just my Husband but an hour later still hadn't even been assessed by a nurse. Eventually nearly six hours later I was rigged up to some antibiotics. My blood tests had come back showing that I had a blood infection and my neutrophils were at zero. I had been continuously throwing up for a couple of hours, couldn't stand or hold a conversation. The Doctors there had refused to speak to my Oncologists from Guys on the phone and no-one wanted to take responsibility for the fact that they had caused me to become extremely unwell.

I was left in A&E for the next 12 hours before they finally put me in a private room and decided I should be quarantined properly. They then continued to try to finish me off for the next 5 days. Every nurse who arrived to administer my thrice daily antibiotics had a different idea of how they should access my port. Bear in mind that the port is a direct line to my heart and there is only ONE correct and safe way to use it. Luckily I have been trained by the IV nurse in the correct way and spent my time there educating a constant stream of agency staff.

It is of utmost importance that everything is sterile when using the portacath, there are packs with pre-packed gloves, wipes, swabs etc. Everything needed to safely access the port and administer medicine or take a blood sample. On one occasion a DOCTOR came to take a blood sample, he managed to block the port and the two access points (one tube from the port with two access points where you can plug a drip into). They were blocked with blood clots because he hadn't flushed the tubes properly with saline first. I had told him how to do it but he had decided to ignore me. He left the room, leaving me sitting with blood clots blocking a tube leading to my heart and blood all over my nightie, never to be seen again!

A brave and sweet sister came to my rescue. I had a clean needle in my handbag and between us we re-rigged the whole thing. On my last night I had to refuse to have my antibiotics in order to persuade a senior nurse to use a sterile environment. She accused me of suffering from OCD and told me that she only had one sterile pack left and I was NOT the only patient on the ward. These small but significant errors continued all weekend with most staff ignoring the 'gloves and gown' sign on my door, they even sent a nurse with a severe cold to make my bed. Needless to say I was especially pleased to be discharged.

The next day I braved the train ride to London Bridge with Dad to get checked out by the Oncologists at Guys. They gave me the all-clear for my holiday with only 16 hours to spare.

Forty Six

Tuesday, 26 February 2013

Here I am again in my bed. We bought a lovely memory foam mattress just over a year ago and I never dreamt how usefull it would become! My back and legs hurt and my brain has vacated. I have limited feeling in my fingertips and a constantly flicking left eyelid. I know that I will feel better in a few days and at least don't have the chest/throat infection thing to contend with this time.

So, last Wednesday I went for my pre-chemo Oncologists consultation and blood tests. It all went quite smoothly with no big surprises and I had a chance to discuss the next year or so's treatment a bit. Here is a basic outline of the plan, although it will change - they always do.

On March 1st I will meet with the Breast Surgery team to discuss the next surgery which will be a full axillary clearance on my left armpit. Removal of all the lymph nodes. Hopefully this surgery will come through quickly.

On March 20th I will meet with the Oncology team to have my blood tested and discuss any further chemical treatment. I will then have my 3 weekly Herceptin on the same day and will continue with this into 2014.

As soon as the lymph nodes have been tested for cancer they will know how much radiotherapy I will need (obviously more if it's spread further). At the moment they think it will be between 3 and 5 weeks. I will have to visit Guys for treatment every day.

It will take my body a year to recover fully enough from the radiotherapy to have any further surgery. I will keep this 'holding implant' in my left breast until I have recovered enough for further surgery. The 'holding implant' that is there now is not the finished product and is basically there so I have something to put in my bra and to keep the skin envelope alive.

When I am ready for the new implant in the left side I will also have a full mastectomy and matching reconstruction on the right breast. This will be carried out by breast and plastic surgeons ensuring the best cosmetic results, ill get nipples too! There is a good chance that the scar tissue from the radiotherapy will misshape the existing implant, this will be solved by the replacement.

When this has all finished and all being well, I will have a 5-10 year course of Tamoxifen tablets to inhibit my oestrogen levels, the hormone that could trigger more cancer.

And breathe.

I then got a call on Thursday afternoon saying that my neutrophils were too low on Wednesday's blood test to have my chemo on Friday and could I come in early for more tests. I ate black pudding for supper and breakfast, downed all the vitamin supplements I could get my hands on and drank rank spirilina smoothies. By Friday morning I just about scraped it.

We were joined by the shoe fairy who came bearing 'last chemo' gifts! The treatment was delayed due to the extra blood tests but otherwise went without a hitch. After My chemotherapy drugs and then the Herceptin the nurse prepared a third treatment. It was called Zometa. I hadn’t heard of this one before and was told it was for the treatment of bone cancer and that I had been prescribed it on top of my chemo. I questioned why and decided not to have it before discussing it further with the oncologists.

On further research, Zometa is indeed for bone cancer. I have had an uncomfortable few days waiting to see if the prescription was correct or not but have just found out that there had been a mistake. As far as they are concerned I still do NOT have cancer in my bones and the foci and bone islands seen in the scans are not Metastatic. They are now working hard to find out why I had been wrongly offered this treatment.