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Me!
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I am 44 years old, Married to Sean for 19 years and have 3 lovely children Hope is 14, Jack is 10 and Joe is 5.

Sunday, 2 April 2017

Chemo Round 4

As you will have noticed I haven't posted for a few days. 

It's been a tough week. A REALLY tough week. I think that being in hospital for a lot of the time between Rounds 3 and 4 of chemotherapy has had a lot to do with it. Always before I've had the chance to regroup, to recharge my batteries and bolster my thoughts ready to face the next onslaught. I literally had 'day release' this time around. What a lovely day it was! Sunshine, Mothers Day, fresh air and dinner out. Wonderful but not enough. 

I was so relieved that they didn't delay the chemo and I could proceed on schedule. Tuesday morning, chemo day, dawned and it was so hard to remain positive and cheerful. I had to drive the kids to school and be jolly and encouraging and drop Hope off knowing I wouldn't see her until Friday. So yes, when the brave face mask slipped I sobbed, and sobbed hard. I dreaded returning for the chemo, knowing yet again how ill it makes me and the pain causes. The rational mind knows it's 'one step closer to better health', 'one more under my belt' and all the other good reasons to go and be subjected to this medieval, brutal torture but the inner child wants to run in the other direction, fast.

I also knew I had to have the chemo through a cannula in my hand as I had my chest line removed due to infection. Thankfully as you can see that's healing well.



Despite the years that have passed my veins do not like needles. After just 10 days of not having the Hickman my arms are like pin cushions, bruised and swollen. I am thankful for having the line to get me through the first 3 cycles and to have avoided these problems thus far. 

You are advised to take paracetamol and ibuprofen before wearing the Cold Cap which has always helped. This time however I already had a banging headache and the meds didn't help. 

I decided it was a battle I didn't need to face on Tuesday, I had too many others and they were making my strength wane. Thankfully I had my long time chemo companion Ainsley (aka Legend) to bounce this idea off. Good decision.

Unfortunately some of the chemotherapy drugs leaked out into the tissue around the cannula in my hand https://en.m.wikipedia.org/wiki/Extravasation_(intravenous) The way to treat this leak is to inject around the whole area with the antidote dexrazoxane. As you may imagine this needs to be done quickly with no local anaesthetic and is incredibly painful especially as there is no flesh on the back of your hand.

I can usually grit my teeth and bite my lip and not cry out. Not on this occasion. I was barely aware of being in a bay with 5 others receiving chemo as it just felt like the pain from one injection to the next rolled together. The nurses couldn't have been kinder or more apologetic. They told me it's the worst thing they have to do to patients and they feel like they are literally torturing people. Ainsley tells me my lovely, lovely friend and chemo buddy Sally was shouting encouragement through the curtain. She experienced this once too when she had chemo 12 years ago for osteosarcoma in her leg. An experience no one EVER forgets or wants to repeat.

Hindsight is a great thing but I am glad I didn't use the cold cap as I would have had to go through this experience with it on. Even if they switched it off immediately it takes 20-30 minutes for the ice to melt so you can remove it.

My hand is much better and healing but I've been told it'll be sore for a while. Due to the quick actions of the medical staff I won't have to severe tissue damage, face plastic surgery or worst case scenario amputation. How can your veins and blood stream cope with this poison when your tissue would be so damaged?? Mind blowing.

I have also been told they can't attempt the chemo in my hand again. Next week we'll discuss the insertion on a PICC line http://www.macmillan.org.uk/information-and-support/treating/chemotherapy/being-treated-with-chemotherapy/picc-lines.html 



This will hopefully get me through the last two rounds without too much drama! I will await to hear if they need to check if the superbug http://www.everydayhealth.com/klebsiella-pneumoniae/guide/ I contracted when I had the Hickman Line has been cleared by the antibiotics. 

I have suffered quickly this time from the usual chemo side effects - sore mouth, with ulcers, skin peeling off and altered taste. Bad reflux and nausea. One of the side effects of one of the chemotherapy drug I have docetaxel http://www.cancerresearchuk.org/about-cancer/cancers-in-general/treatment/cancer-drugs/docetaxel is bone and joint pain. The use of GCSF injections for 5 days post chemo to try and prevent the blood counts dropping, avoid neutropenia  and help the body still fight infection is routine after some types of chemo including mine http://www.macmillan.org.uk/information-and-support/treating/supportive-and-other-treatments/supportive-therapies/g-csf.html But it can also cause bone pain in the areas where there is a larger surface area e.g. The long bones, pelvis, back. So as the medics describe it 'a double whammy'. 

Days 4 and 5 towards the end of the injections are always the worst for this but I try and remember that they are doing their job and manage to sustain my counts in between rounds. The pain breaks through the usual paracetamol, codeine and ibuprofen that I take regularly and preventatively. Morphine is usually the only effective way to tackle it. This time I have been given it orally to have at home. Fingers crossed it will keep me out of hospital this round! 

#TeamVicki have been on hand again in abundance with everything from meals to flowers and more, our gratitude is beyond measure. 





I am now on the countdown to Day 8 which is usually the turning point for me. I sincerely hope for some 'good days' in between rounds this time, especially with Easter coming up and some nice activities planned. I look forward to being back at work and immersing myself in module reviews, tutorials and placements visits. One of latest gifts will be worn with pride ha!



My hair will now all come out but that is the least of my worries right now and I have 'Shine Caramel Glow' waiting in the wings and a zillion hats! Retaining my anonymity early in treatment was important but everyone now knows including my students and I will steel myself to face the stares and questions from strangers.


CLICK ON THE VIDEO TO WATCH









Monday, 27 March 2017

The Reality of being treated for Breast Cancer - Part 13

Well I managed to get all of 36 hours away from my 'second home' as I call it http://www.leedsth.nhs.uk/a-z-of-services/leeds-cancer-centre/what-we-do/

It's been a TOUGH third round with very little respite from symptoms and complications. Unbelievably though I have somehow managed to get to 3 weeks post chemo and the day of Round 4 and not to have to delay it despite being on 2 lots of antibiotics sadly caused by infection in and around my Hickman Line which is seen in immuno compromised patients http://www.everydayhealth.com/klebsiella-pneumoniae/guide/  They are surprised I am not more 'unwell' (so I am reading that) but I feel it's a positive sign that my neutrophils ate up enough to go ahead with chemo and my infection markers are down enough. I am not neutropenic. Although I did I became very unwell one night last week in hospital, unable to get my breath. It really was the first time I was frightened. I was lying there thinking 'I am beating this cancer and now I'm going to die from this' truly petrifying, looking at the panic and concern on my nurse's face didn't help. They haven't ruled out a pulmonary embolism despite the chest CT scan but hopefully are being overcautious injecting me with http://www.medicinenet.com/tinzaparin-injection/article.htm So in theory I am good to go.

I spent time watching a movie with my family on Saturday night when I'd escaped from hospital. A lovely Sunday watching the little boys play rugby and nearly 2 hours in the sandpit in the sunshine, ran errands and the day was topped off by a Mother's Day meal out in a lovely local pub.

I actually enjoyed doing the school run yesterday and especially seeing my 'Mum Friends'. Then it was back to reality and the hospital, clinic, blood tests etc But I got to do almost a full working day afterwards; tutorials with students, emailing, marking and just being away from the hospital was hugely welcomed.



Now waking, after about 3 hours sleep or should I say tossing and turning and sweating, thanks to the diet of steroids yesterday. Brings the feeling that has been deeply buried for nearly 25 years, of having to drag myself back to the hospital to be made very unwell again and be barely able to function. The pre-chemo nausea has set in. Boy, this is hard and unwelcome.










Sunday, 26 March 2017

The Reality of being treated for Breast Cancer - Part 12

I have spent the last week in St James' Hospital. At The Yorkshire Cancer Centre which is actually a world renowned treatment centre where people from all over the country and the world are treated for many different types of cancer. I am just lucky I'm local and have access to treatment! 

Finally I am home, after 20+ doses of IV antibiotics, many more IV flushes, umpteen doses of oral antibiotics, 1 trip to the operating theatre, 1 Hickman line removal, 1 ECG, 1 chest X-ray, 1 CT scan, 4 different cannulas, many blood tests,  blood pressure, temperature and sats checks, swabs, blood cultures, codeine, paracetam'ol, oramorph,  several Gluten Free meals (thankfully!), dozens of cups of green tea, lots of gf supplies along with their visitors and not surprisingly very little sleep.

The staff looking after me were lovely and kind and of course overworked. Sometimes I had to wait a long time for drugs or someone to stop the IV pump from bleeping or didn't get a cup of tea. Although unlike some people who have secondary cancers and are having to raise huge amounts of money to go for available treatments abroad, as the NHS can't offer them anything else, I am getting my treatment and tests and am thankful for this.

I am desperately hoping this week's chemo isn't delayed but we will have to see. I go to clinic on Monday and I'm sur I can convince them! I will have to have it through a cannula in my hand now the line has been removed. My infection markers are going down thankfully and counts are good so here's hoping!!!

Thanks once again for all the ongoing support, cards, gifts, messages, visits, food and childcare it is VERY much appreciated as always :-)



Wednesday, 22 March 2017

The Reality of being treated for Breast Cancer - Part 11 - Lost Track of the Days

Well I know how many days I have been stuck in hospital.....4 so far :-/  I have lost track of the number of days I am post chemo as I'm now on the countdown to the next round....6 days. It comes around too quickly. This is the reality of cancer.

I am getting well and truly fed up now. This is my 'good' week, when I feel much better and well enough to do 'normal' things. Spend time with my family and friends, Mum taxiing, shopping, cooking, working but I'm feel it's been wasted battling infections. This is the reality of cancer.

So yes this IS the reality of having cancer......exactly what I'm writing about, but it doesn't make it any easier to swallow. Usually this week I can almost pretend life is moving forward as if this nightmare wasn't happening. If you'd told me that I'd be spending this afternoon discussing genetic testing, how much hair I'm losing, mouth ulcers and which type of breast reconstruction was preferable, with my dear friend Sally I would have told you that you were nuts. This is the reality of cancer.

No matter how positive you remain you are still staring your own mortality straight in the face. Relying on the statistics that 78% of women get through this barbaric treatment and live their lives as they choose to again. You can't help but have that niggling doubt and embrace every opportunity...to give your child that party they REALLY want even though it's expensive, buy them that game they desperately covet or take that trip you've always dreamed of, read your child just one more chapter of the book, watch that show you've always planned to see; you want to make sure you create those lifelong memories...just in case. This is the reality of cancer.

Yes I am lucky to have several friends and family who have beaten this dreadful disease and it's never come back. Plus everyone I meet has a positive story about a friend, family member or neighbour who has too and it does help to hear these BUT it's hard to push those out of your mind who haven't. Such as the wife of a friend of over twenty years who died of breast cancer 2 years ago and having been in this environment before, all those you meet along the way who don't make it. This is the reality of cancer.

I am protecting myself more this time around. I don't catch the eye of the person next to me in clinic or pre-assessment, I am thankful for my own room, I'm avoiding The Robert Ogden Centre and The Haven. I don't want to hear everyone's awful heartache that I meet whilst I'm on this journey. Yes bone tumours are much rarer and have nowhere near as good survival rates as breast cancer but I lost 8 out of 10 of the friends I made and kept in touch with. I can't deal with that again. This is the reality of cancer.

I am fighting a losing battle with my Hickman line. It's sore and stops me sleeping, I have a bug around it and in it and now another one in my blood. I will let it win on this occasion. It has served me well for half my chemotherapy treatment and taken away the stress and pain of having needles.

I do not want to waste more time stuck in here; battling to get fed properly, I'll have the next chemo in my hand and then when all these infections have cleared I can have a PICC line. I hope chemo won't be delayed, tomorrow I will see the Professor of Oncology and the Registrar and I will convince her it's the best course of action. How soon I will get a theatre slot and whether they will release me yet after the removal with oral antibiotics are all questions for tomorrow. I will just have to be patient.


Monday, 20 March 2017

The Reality of being treated for Breast Cancer - Part 10 - Day 12 Post Chemo

Well after battling a problem with my Hickman line site for as few days now, after one emergency visit to St James' last weekend and a week on oral antibiotics it was worse than ever. I rang the hospital and asked for the oncology bleep holder and they advised me to come in to Ward 95. Which is where I'm typing this from now on Day 13 post chemo! Yes they captured me and I had to stay in!

I'm not too fed up as I know it's what's required and I am in the best place to get this nailed once and for all. I am lucky to have my own room therefore some privacy for me staggering to the loo on the crutches, drip stand in tow! I am hoping to escape later this evening after 24 hours of IV antibiotics as they seem to be working and my chest is far sore woo hoo!


Saturday, 18 March 2017

The Reality of being treated for Breast Cancer - Part 9 - Days 9-11 Post Chemo

As seems to be the pattern I have felt better and better as the week has gone on. Ha, even the students I saw on Friday noticed the improvement since Wednesday (subtly conveyed of course ;-) I've enjoyed being back at work and have been very busy, so thankfully no time to dwell on things.

The main problem I've been battling against is where my line exits is sore and not only that, for about 3 days post flush it's been sore under the skin too, as if bruised. I have been on antibiotics all week but this doesn't seem to have shifted the problem - maybe not the right drugs....

It is a worry as problems with it can delay chemo but we'll cross those bridges if they arise. I keep thinking each day I need to go back and get it checked, as it's oozing again tonight, tomorrow may be that day.

Another frustrating aspect is that I feel 'well', then as soon as I start to do anything, whether teaching or walking around the shops I have the most awful head and neck sweats, where I'm literally dripping onto my collar :-/ and get really breathless. I was told by the oncologist that these are chemo side effects. The state of me when I was teaching this afternoon, goodness knows what people would have thought!!

As you start to feel better and more like yourself it's hard as you know you're shortly going to have to go back and be made so poorly again. My rational mind knows 'needs must' and that it all means it's one step closer to this brutal treatment being over and preparing for the Mastectomy. More appointments scheduled too over the weeks to come with my Oncologist, Breast Care Nurse, Breast Surgeon. Scans and weekly line flushes, blood tests and counselling for Jack.

So the world keeps turning and as has also been the pattern, our friends and family continue to be so hugely supportive, with everything from meals to childcare, gifts, cards and flowers. Yet again I really cannot express how this is all helping us to continue with 'life as we know it'. The children are finding it hard, so any semblance of their normality is a bonus. Jack started counselling this week as we really don't know how to help him sometimes to deal with his feelings and worries. I'm hoping and praying it helps for him to talk to someone who is not emotionally connected. Hope took the brave decision to stay at school whilst I was in for chemo and for the following few days. A mature attitude from a 15 year old, who could recognise what she could and could not deal with. Thankfully school have been helpful and accommodating beyond measure and I know she will be well looked after and thankfully has a great connection with staff. It is heartbreaking for me though..... Cancer is never easy for anyone and sometimes (both during this experience and the last) I think it's almost harder to watch someone you love go through this and be unable to do anything to take it away.

I will keep on keeping on.


Wednesday, 15 March 2017

The Reality of being treated for Breast Cancer - Part 8 - Day 7 post Chemo

I was too tired to post yesterday, after another busy one!

I need my line flushing weekly, ordinarily you wait in on that day for the District Nurses to come but that would of course mean I'm unable to plan anything else for that day. This way I get to go into work before and after. And to be honest my first (and last) experience of waiting for the District Nurse wasn't very positive. She rang me and told me they were too busy and wouldn't be able to come.

Although as you will see in the clip trying to actually park at the hospital is easier said than done (N.B. I wasn't holding the phone while filming it was in the cradle!).

Since the line was flushed (saline gets syringed through to check it's still 'open' and they check they can still draw blood from it) it's been really sore (tender and uncomfortable even to the touch) I'm just helping it settles tomorrow but we shall see.

So Day 7 I was shattered and Day 8 I'm hoping is the turning point, as it has been the previous 2 cycles  and from Day 9 I start to feel myself again. Both boys hav been off school ill which has been tricky. Obviously looking after them, whilst trying not to catch anything but also not wanting to have any more time off work.

I also took Jack for his first counselling session. After not wanting to go in it seemed to go well, as he was quite cheerful when he came out and I took him for a special tea together.