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.

Forty Five

Tuesday, 19 February 2013

It feels as if this last cycle has gone very quickly, but not in a good way. I feel a bit cheated of the week or so where I have historically felt fine, good even. I haven't really recovered from the last dose 3 weeks ago and on Friday I will be back at guys receiving another. Part of this has to be down to the cold/throat/chest infection thing which is still lingering and I suppose part is just because the cumulative effect of the chemo is taking its toll. This is obviously why this is the last one. I couldn't do any more.

I'm over being bald, it was almost fun for a while. I'm always one to love a bit of extra attention, plus I'd wanted to shave all my hair off since I was about 18 and met a gorgeous girl at a 21^st birthday party who had hers shaved. I'd just never had the guts. But now I'd like my hair back please. Even just a little bit would be nice. It has dawned on me recently that it won't just reappear as soon as this leg of the treatment is over. I wont just wake up one day next week with waist length, blond tresses. Its going to take a long time. Years if I want to return to my pre-chemo hair. Possibly even never. This has come as a little bit of a private shock to me, I don't know what I was expecting but I just hadn't really thought it through.

I'm also over the lack of energy. I can pretty much function on a day to day level but as soon as I actually want to push myself in any direction, everything comes to a standstill. This recent good weather has dragged me into the garden, up until this week an unexplored wilderness of ivy, weeds and trees that should be shrubs. I have pruned, raked, dug and pulled but every job has to be interspersed with plenty of rake leaning, breath catching, water drinking and panting. Then I get cross and frustrated that my body just simply isn't up to it. So, along with my hair Id like my energy back too please.

And for my third wish, I'd quite like my body back to. But that's not going to happen. So moving swiftly on.....

This Friday (blood tests and consultation tomorrow permitting) I will be having my sixth and final chemotherapy session. Stupid phrase that, session doesn't sound right somehow. Dose?

Anyway, whatever I call it, this is the last one. All going well, the last one ever but let's not tempt fate. I will have to stomach the side effects but all the while knowing that when I start to feel better I can keep feeling better. I am very much looking forward to that. Especially as we have planned a little holiday which starts in just over two weeks time so I will start to feel better whilst cruising around the Red Sea! Hurrah!

Then its just a matter of some surgery on my left armpit (removal of all lymph nodes), left breast (implant replacement), right breast (full mastectomy and reconstruction), Radiotherapy, 3 weekly intravenous herceptin for the next year and Tamoxifen for the next 5. Should be a walk in the park.

Talking of walks. I've been on a couple of lovely ones this week. With the Newsreader and his beautiful pregnant Newsreader wife on Saturday and with one of my very Lovely Mummies and our five beautiful daughters today. Heaven!

Forty Four

Tuesday, 5 February 2013

On Wednesday 30th January I went for my pre-chemo consultation at Guys. Husband and I had already had our enormous 'The week leading up to chemo' argument on the Monday so we were getting on fine by Wednesday. The nurse decided to use a different vein for my bloods which has bruised quite badly and annoyed me a bit - was he just showing off?

The consultation went quite well. I mentioned some chest pain I'd been having and was sent up for an ECG. If I'd known this was going to happen I wouldn't have worn a dress! Felt quite silly in my tights and bra with sticky pads and wires all over my upper body. Turns out I have a first degree heart block. This is much less impressive than it sounds. The Doctor told us that extremely fit people like marathon runners can develop this. We assured him that this was NOT what would have happened in my case!

We went for lunch at Borough Market and booked tickets to see AnDa Union play on the 9th at the South Bank which I'm very excited about. Thursday was tiring, Husband had a full day in the office and the shopping had to be done. The girls were great and spent the afternoon in the garden with Granny pruning and making a small bonfire to eat supper around.

On Friday morning we had to stop off at school to see daughter 2's mid-term Assembly on recycling. She had lots of speaking parts and did really well. Then it was off up to Guy's on the train. My chemo went smoothly, Lovely friend came and kept me company. Then we took the train home and I did the post-chemo-race which involves getting fed and changed and ready for bed before feeling too rubbish. My Curly friend and her Man came to stay. He to accompany my Husband to a gig and she to look after me. We had a quiet evening looking through the old Footsbarn photos.

On Saturday morning I felt fine. The steroids were still strong and the pain hadn't started yet so we took advantage of the girls being at Granny's and piled into the car for a day trip to Hastings. I wasn't able to completely join in but managed a very respectable afternoon of pottering and eating. By the time we got home in the late afternoon I was whacked and slept really well.

On Sunday the slightly sore throat and little cough I'd been trying to ignore had got a bit worse. I spent most of the day in or around my bed. Then on Monday (yesterday) I went to the GP. I was diagnosed with a mild chest and throat infection. Normally nothing to worry about but in my current state a potential problem. I also had my bloods taken to see if I had any immune system to fight infection and a seven day course of antibiotics prescribed.

By 7.30pm last night my temperature had gone over 38degrees (If this happens at any point during chemo you have to rush to the nearest hospital). Mother-in-law came to watch the kids and my Acute Oncology Consultant phoned ahead from Guys. I arrived to a packed A&E but luckily they were expecting me.

No one at our local hospital A&E is trained to use my portacath so they needed to insert a cannula in order to take my bloods (full blood count for immune system and culture to see if I had any infection in the blood) and give me IV antibiotics. Unfortunately Wednesday's show off nurse had blown one vein and the GP had bruised another earlier in the day. The A&E nurse finally decided on the edge of my wrist. The experience was so traumatic that I'm afraid I went into shock. My blood pressure dropped to Hypotension 80/50. I was very nearly sick, lost the feeling in my limbs and felt absolutely awful.

Once I finally came to, I was given two massive syringes of antibiotics and two pints of plasma to top up my blood. The culture had come back showing signs of infection but my white blood cells were not neutropenic. At 3am the Doctor decided I was safer at home than in the hospital and I've been dozing off and on in bed ever since. I feel MUCH better today, the fever has gone and my throat is less sore. Hopefully in a week or so the body pain will subside again and I can enjoy a window of normality before my LAST session at the end of this month.

Forty Three

Saturday, 26 January 2013

If you have enjoyed any of my blog (I know some of it can't really be described as enjoyable but I'd hope there's a bit of joy to balance it out) please would you consider sponsoring one of the below £5 or something.......

All these people are using my name and their legs to raise money for some of the charities who have really helped me in the last six months.

Firstly My Husband's brother who is going to run an ACTUAL MARATHON!!! to raise money for Macmillan Cancer Support...... read his story here
http://www.justgiving.com/ouchtisamarathon

Then there's his cousin who is running for Breast Cancer Care..... read her story below
http://www.justgiving.com/Emma-Louise-Coffey