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chemotherapy care

A Patient's Blog

This is a first hand account of a female patient who has been diagnosed with a cancer and is currently receiving chemotherapy at the Jersey Oncology Unit.  It will chart her feelings and experiences, including the ups and downs, of her journey through treatment.

A new year and a new beginning?

04-Feb-2013

I met another friend who unfortunately was diagnosed with Ovarian Cancer three months after me, and during the conversation we briefly discussed our Chemotherapy regime. Hers differed slightly from mine with three cycle’s pre op and three cycles post op. Very straightforward and simple, and also as it turns out very effective, as she has just been given the “all clear”, which is good news indeed.

As very little of the proposed plan for my treatment had gone smoothly I should have known that cycle number eight would be no different. We finally had to admit defeat, and give up on the last cycle, part of me was relieved, but the other half of me was a little anxious. A CT scan was booked for the middle of January.

Even that wasn’t without incident; it took three attempts to put in a cannula! The right arm vein ‘ran away’, and when the Nurse tried the left arm, the needle bent!!! Luckily the veins in the hand were still operational!

Six days later I had the results- and it seems that there is no evidence of any residual disease, and I am now in remission- great news- but (and there always IS a but!), I am waiting for confirmation from the Marsden, and until that letter comes through confirming the fact, I am not fully celebrating.

So I would like to think that although 2012 was not a particularly good year for me, 2013 is looking a whole lot better, and in the words of Winston Churchill, KBO!!

It’s Official

Its official, exercise really is good for you, especially so if you have or are recovering from Cancer! Physical exercise is, to quote the Macmillan Cancer Support the new ‘wonder drug’. They recommend that you should aim for 150 minutes of ‘moderate physical activity’ a week.

Bizarrely in the short term exercise can help with severe fatigue, depression and reduced muscle strength. I do know from personal experience that even when I do feel tired, any amount of exercise (even just walking) makes me feel better. Maybe it’s got as much to do with being outside, and trying to grab the few daylight hours that we have at this time of year, but ultimately I think it’s more to do with the hormones and endorphins that are released during exercise.

Now there is a saying that goes “Never count your chickens before they hatch”, and so there I was feeling remarkably pleased with myself for finishing the last cycle of Chemo and thinking the next lot would be a cinch. Therefore in turning up for my pre-clinic appointment I was dismayed to find my clotting platelets had dropped to 47, but worse still my neutrophils were equally low….0.69.

Consequently Plan A was put into action, give it a few days…. Bloods taken, still dropping…. So onto Plan B, give it a few more days….dropped even further!! Plan C, I had an injection (GCSF) to boost my bone marrow- this worked for my white cells but my clotting platelets dropped even lower, now down to 32!

By now we were running out of ideas (and plans- and very nearly veins!) so we decided to defer the whole cycle until after Christmas as there was a fairly good chance I would have needed a ‘platelet transfusion’ over the holiday period, and that wouldn’t have been much fun- for me or them.

Hence I am following Macmillan’s advice and taking as much exercise as I can….. While I can!

Happy New Year!

Completed cycle Number 7!

30-Nov-2012

I am feeling very pleased with myself, I have actually managed to complete a whole cycle of Chemotherapy uninterrupted by low blood counts, whoopee!

Having said that compared to the strength of the drug I was getting and the ‘watered down’ version I am on now, I should have sailed through it!

I am also much relieved that I am not receiving the ‘Taxel’ part of the drug cocktail as it’s taken me months to grow the inch of hair currently on my head, and I don’t want to lose it. As far as I understand it is that drug that is the culprit for hair loss!

There is no doubt in my mind (actually I’m not sure what is in my mind) as a lot of the time not only do I get stuck finding the right word I need, I also replace the missing word with complete gobbledygook. In fact it’s not just the words I struggle with, some days it all seems a bit hazy.

For instance I tried to start the car yesterday using the dog lead…..

New faces in the Oncology Unit, there have been quite a few changes in the last eight months I have been visiting them. You do build up relationships with all the staff there; they are all such a good bunch of people, and I know that the treatment and care you receive in Jersey is second to none.

Thought I’d finish off this blog with a quote by Les Brown;

“You are never too old to set another goal or to dream a new dream.”

A walk in the Park?

You would have thought so far into my treatment that nothing else could possibly go wrong, only two small doses of Chemo left, a positive ‘walk in the park’!

Alas it was not to be, my bloods particularly the white cells were very slow to pick up, ditto clotting platelets. A subsequent CT scan looked at by Dr H over here seemed clear enough, but there were enlarged lymph nodes to warrant continuing with the programme.

This time a revised format (not wanting to follow a ‘normal’ plan) has been introduced. I started today with just Carboplatin , no Paclitaxel and am due to receive it weekly for the next three weeks. A weeks break and then another cycle and then……………….who knows!

I recently read an article in a newspaper about Cancer, and it included in it a comment from Shelia Hughes describing her breast cancer as ‘like going on a journey to a strange country. You don’t know if you’re going to survive the journey; you’ve got no map; you’ve got no compass; and you’ve got to drag your family along with you”.

I think that pretty well sums it up, don’t you?

Blood Bath?

A similar format followed the previous blood transfusions, in as much as I turned up on Rozel ward at 9am and had a cannula fitted, and then nurse RF escorted me to Rayner Ward, actually I escorted him as he wasn’t entirely sure which way to go! (Well he is a Norfolk boy and doesn’t get out much)

We arrived on the ward and bumped into my consultant PS, and upon request I had a big hug, (always makes me feel better!) reunions over I was shown to my bed, and settled myself in for the day.

This time I only had about 30 minutes wait until my three units of blood arrived; the drip was set up and with regular checks everything went smoothly. Late morning I had my second bag and once again everything went according to plan. A nurse change over at 1.30pm, and I was due my third bag. I was feeling ok and thinking that I could be home by 5pm.

Now, in attaching the blood unit bag to the drip you have to push the needle quite hard into the bag, when using this procedure using a saline bag, it’s far simpler as there is an extra piece of hardened plastic that leaves no room for error. Unfortunately chemo bags (and others for all I know) do not have this reinforced plastic. So in forcing the needle into the bag it pierced the plastic and caused a leak. Assistance was called for and a discussion ensued resulting in a clean-up of the bag and then applying a large ‘sticking plaster’ over the hole!!

Apparently a unit of blood costs around £500, so not only is it too expensive to waste, the nurse did not want to deprive me of my much needed red cells!!

Unsure how long the ‘plaster’ would hold the blood was sent through the drip on a fairly fast speed, so despite the drama I still managed to leave the hospital by 5pm!

Blood test anyone?

30-Oct-2012

Monday morning saw me once again knocking on the Oncology door for my routine blood test, and not feeling brilliant- predicting a poor outcome of results……

Unfortunately I was right, my haemoglobin had dropped to 8.5 and my white cells a miserable 1.6, with neutrophils at 0.4, the only high point were my clotting platelets which had scraped up to 27.

Serious looking faces and a brief consultation with the doctor as to the way forward, before deciding to come back again on Thursday for a blood test, as this is really the only way to determine what is going on.

Thursday morning Macmillan were holding a coffee morning (their once a month affair), so I thought I could squeeze in a visit before the hospital appointment. My husband came with me as it’s a good way for him to feel part of my on-going treatment and meet up with other partners and share experiences, or even talk to the wonderful staff! (And the coffee is great!)

The discussion this month was based on the psychological help you can receive at Macmillan and apparently there IS such a thing as Chemo brain!! Such a relief to know that- it explains so much! If you want more information on that or anything- go and ask them!

Anyway, off I toddle to Rozel ward and had my blood test, feeling a bit better than I had at the beginning of the week, and fully expecting the results to mirror that…….. how wrong I was!

Haemoglobin down to 7.9- lowest it’s EVER been, White cells 1.4, dropped again, neutrophils 0.5, and clotting only a measly 28! Rubbish! More serious faces and action needed, therefore phone calls to the wards followed looking for a bed for a transfusion ASAP. They didn’t want to wait until after the weekend, it made sense as whilst I was there a cross match could be done and I would be ready for a blood transfusion on Friday.

After a relatively short wait a bed was found and I was told to check into Oncology at 9am where they would cannulate me and deliver me to Raynor ward, and therein lays another story!

Up and Down and Round and Round

22-Oct-2012

Friday morning I eagerly raced up to Oncology for yet another blood test- Ok, so can you tell I’m fibbing?!!

The third visit in a week, I really didn’t know what to expect, other than I had hoped my neutrophils had picked up sufficiently from the GCSF injections.

The good news is that they had- and now stood at 6.5, and my white cells were also up at 7.8- powerful stuff that GCSF – not a good idea to dwell on exactly what it does to your bone marrow, but it seems to work for me!

However my haemoglobin had dropped slightly to 9.0   – and worse still my clotting platelets had dived right down to 19 – not good news. They think that in boosting up one set of cells it had a detrimental effect on the other cells.

Obviously there was absolutely no question of chemotherapy and a real concern for my general welfare, strict orders to continue to ‘take it easy’ and look out for any symptoms associated with low clotting platelets.

I was booked in to return again on Monday – so I trundled up to Rozel ward in the morning and had another blood test. I had taken it easy all weekend, but certainly didn’t feel particularly brilliant, the previous week had been a very emotional time and I didn’t want a repeat performance.

Haemoglobin dropped down AGAIN to 8.5, (ah, so that explains why I struggled to walk up hills!) White cells dropped significantly to 1.6 and once again I was Neutropenic with a count of 0.6!  The only light at the end of the tunnel were the clotting platelets which had slowly crept up to 27.

No doubt about it, I felt ‘down in the dumps’, with so many visits to the hospital, combined with the antibiotics I was on and the emotional stress of the repeated blood tests, I shed more than a few tears.

Thank goodness for my family and friends, who offer practical sound advice, words of comfort, and copious amount of hugs as and when needed!!

 

February 6th, that was the day my world (as I knew it) fell apart.

02-Oct-2012

I read an article recently about a man who had just been diagnosed with a rare type of cancer, carcinoid or neuroendocrine tumours (otherwise known as NETs). Upon hearing this news from his consultant he felt as though he was “drowning in fear and confusion”, I know how he feels.

Just lately I have been using the past tense when referring to ‘my’ cancer, I had cancer, and not I have, effectively banishing the thoughts of any mutant cells snaking around my body.

I do believe that as I am nearing the end of my chemotherapy (hopefully, although I’ve been down this road before!) it is throwing up yet more ‘fear and confusion’. Suddenly this world of hospitals, blood tests, scans and doctors that has been so much a part of my life is coming to an end. I’ll be on my own…. And while it will be welcomed it’s also quite a scary prospect.

Of course I haven’t liked spending so much of the last 8 months in the ‘system’, (who would) but with that comes a certain sense of security. Any niggling doubts, questions that I needed to ask, and my ‘wobbly’ days have all been compassionately dealt with. I have no doubt that I will be welcomed at any time in the future, and I know Macmillan have an ’open door’ policy.

Last Monday I had a blood test for my pre-chemo; my clotting platelets were low at 32 (the rule of thumb is no chemo if lower than 100). However, the Marsden have decreed that unless the count is below 30 my treatment should continue.

Chemotherapy booked for Wednesday (check bloods first), so I duly arrived, was cannulated and had bloods taken. The news was not good; my clotting platelets were only fractionally up to 36, still worryingly low. Dr H came over and explained that he had never given chemo to any patient who was under the 100 ‘bench mark’, but we both knew that the Marsden had instructed him to continue. I had a discussion with my nurse as to the side effects that I may experience (not pleasant) as I tried to mentally prepare for what lay ahead, when Dr H came back with my full blood results and it quickly became apparent that my white cells were 0 .4 and I was in fact Neutropenic!!

This news does not normally provoke a joyful reaction but I for one was relieved, (and I think that applied to Dr H too!). There was absolutely no chance I could have any chemotherapy, I really would have become seriously ill.

The cannula came out, an injection of GCSF (to boost my white cells) and a prescription for antibiotics followed, and I was sent on my merry way, with instructions to return on Friday for yet another attempt!

Drama in Oncology!

30-Sep-2012

What a week! I was looking forward (if one can ‘look forward?) to starting my 6th and hopefully last cycle of Chemotherapy on Wednesday, blood test dependent. So, the test results come back with my haemoglobin flagged up as 8.8- anaemic enough to warrant a blood transfusion. My white cells were just about holding their own, and my clotting platelets had dropped to 73, but Dr AJ said we would ‘press ahead’ with Chemo.

This meant another blood test to cross match for transfusion, and some other tests to see if the rash I had on my legs plus my low count and mouth ulcers was masking something else, although it is more likely that I am Chemo sensitive (apparently not a bad thing!)

Wednesday morning arrived and I duly turned up at Rozel Ward bright and early. Nurse HD was already laying out the equipment for the day and we chatted about this and that, before she tried to find a vein ready to cannulate. Halfway through the nurses had a discussion about using a yellow or blue one as I was having a blood transfusion afterwards and the department usually like the ‘blue’ ones. I realise retrospectively that I should not have been looking as I don’t really like needles at the best of times. This is when I felt a slight drip on my arm and looking down saw my tube wasn’t quite attached, now whether this was the trigger point we’ll never know but I immediately said, “I don’t feel well, I feel faint!” Nurse HD sprang into action, tipping the chair back and opening the window.

Still feeling unwell, I tried to convey this to HD, but I’d gone out like a light!! I came round a bit groggy to see two nurses trying to wake me – to which I replied to their name calling saying “Lovely dreams” and promptly passed out again!!

According to Nurse HD I was out for a few minutes, probably with a vasovagal, I had thrown my arms back and was out for the count. This all happened before I’d even started any Chemotherapy!

I eventually ‘woke’ to see one nurse putting a saline drip up, one doing my blood pressure, one holding my legs up, and one shoving an oxygen mask on my face, the doctor looking on anxiously and another nurse rushing backwards and forwards fetching stuff!!

I had effectively the whole department behind my curtain, whilst the other poor patients were put on ‘hold’ with their treatment- I did apologise to everyone after I told them they had interrupted my ‘lovely dreams’!!!

This episode delayed my chemo somewhat, but after discussions, followed by toast and a hot drink we went ahead as I felt fine, just really tired! Needless to say I slept for an hour while HD had a hot drink to recover from her earlier adrenaline rush! Of course I told her I was just giving her valuable learning experiences she’ll need in the UK!

Thankfully the rest of the morning was uneventful and at about 1pm Nurse HD was relived (understatement) to hand me over to Chevalier ward for my transfusion. Fortunately I didn’t wait too long and started the first of two units at about 1.45pm. The ward was fairly quiet and I’m afraid to say I plugged my IPod in and fell asleep even though I was on 15minute checks, I still managed to try and sleep through them!!

The Invisible Wig

18-Sep-2012

Wig versus bandana, it very much depends on how you feel, I actually feel more comfortable wearing bandanas, I’m not entirely sure why that is – in fact I bought two wigs before my Chemotherapy began, thinking that I would be wearing one every day. However, that has not been the case, maybe I just feel more ‘secure’ with the bandanas, or I find they don’t itch like the wig does.

Still, it’s nice to have the choice, and sometimes if I feel like being ‘invisible’ and not “Oh, look, that poor lady must have Cancer”, I’ll wear the wig.

Well, from being on the brink of no more chemotherapy, I’m back on the toxic stuff! The Marsden have advised that I should continue with my original programme, so I have two more cycles to finish. However a slightly changed format, weekly dose for three weeks, then a break for a week, then another cycle. A shorter length of time sat in Oncology (much to the relief of the nurses), as I’m usually a nuisance! This is of course, all dependent on my weekly blood tests – and they are far from predictable as we have previously discovered!

Initially, there is no denying I struggled with ‘going back on the bandwagon’. I was feeling good, my hair had started to grow back, and I was trying to get fit again, so to happily go back to potentially feeling rubbish was not a pleasant prospect.

Luckily common-sense prevailed, and I realise that it is in my very best interests to continue with this regimen, and I know that all the doctors (and nurses) want to give me the very best chance of winning my own battle. So, thinking of the great Winston Churchill I will KBO (not sure of the acronym? Look it up!!)

Confused.com

11-Sep-2012

A bit of an emotional week full of twists and turns, I could do with Miss Marple to unravel this lot!

It started with a blood test on Monday to see if those clotting platelets have picked up sufficiently, therefore allowing me to have a chance of having my 5th line of chemo. They were much improved, and I had a brief chat with the Doc, the outcome of which I thought was continuing with the ‘programme’ of Chemo, as this would be the only time I could have this particular combination. Should I ever have a re occurrence in the future (let’s not entertain that thought) I would have other treatments available, but not as efficient. (We are talking Domestos not own brand bleach!)

Friday morning I report to Oncology for another blood test, it is always so crazy busy in there, sadly there seem to be quite a lot of ‘us patients’ requiring medical assistance. Bloods were taken and sent down via pod, however 20 minutes later, no sign of results. On chasing up the missing phial, it transpires that it has gone AWOL- never happened before…..so, more bloods were taken and sent down (by hand this time, no room for errors!)

Whilst this was going on a call was made to the doctor confirming Wednesday’s Chemo, (bloods permitting), only to be told- no chemo any more, too much time has elapsed from the last dose (June 22nd!) No wonder I thought my hair had just started to ‘grow’ back, a very slight ‘fluff’!

Confusion now reigns ;( well, at least it does in my addled brain) very kindly an appointment has been made for me on Tuesday next week to see the doctor and try to make sense of this conglomeration! So until then I shall ‘Carry on Regardless’!

Frustrated!!!!

19-Aug-2012

Why do the goal posts keep moving in this particular ‘game’ of chemotherapy? I am feeling well, my friends tell me I look well (unless they are just being kind!) and yet when I went in for my blood test- after postponing chemo for a week to ‘let my clotting platelets pick up’, the results were STILL bad!

I had a blood transfusion on Friday 20th (that was a fiasco- had the cannula fitted in oncology at 9.45am, got taken to the ward, and 2.45pm started the transfusion!!!) and I really thought that there would be no problem the following Monday but my body is obviously fighting an internal battle and just not telling me!

Consequently with all this palaver my chemo was not only on hold, but my whole 5th and 6th cycles are now under jeopardy. The bottom line is this, unless my clotting platelets improve they cannot administer the chemotherapy, otherwise I will become seriously ill, so…..the plan at the moment is yet another blood test next week with possible chemo on Wednesday! Poor Dr H, I am apparently quite unusual, and he is ‘problem solving’ with me all the time as well as keeping up his calm and reassuring demeanour .For which I thank him and indeed all the nurses, as there is no doubt, all the worst case scenarios race around your head when things don’t quite go according to plan!

P.S Did I mention that to top it all off I am also now Neutropenic! How is that possible? I’ve been swimming in the sea and playing tennis this week!!

Being “smashed” makes me think about life

09-Aug-2012

I smashed a bottle of Olive oil yesterday, all over my kitchen tiles, and whilst I didn’t get annoyed it did make me think. Carefully picking up the shattered glass shards which were scattered over a wide area I felt as if once upon a time I was a ‘whole’ person doing all the ‘normal’ activities that people do, and now I feel that there are only fragments remaining of the original me.

I guess it’s just not having the control over one’s life anymore, letting other people decide what you can/can’t do it and when. All for your own wellbeing and recovery of course, but still it’s hard.

I had yet another setback for my 5th cycle of Chemo; I needed a week’s ‘rest’ in order for my clotting platelets to pick up, but they haven’t, and that means that chemo looks doubtful again this week, and I will have to have a blood transfusion, sooner rather than later. This will kick-start my body back on the road that will enable me to finish the 6 cycles.

Mentally you try and prepare yourself for ‘tests’, ‘results’ and the dreaded but very necessary  chemotherapy sessions, and then your carefully laid plans go awry. I guess in the day to day life I just try not to ‘sweat the little things’ and be as flexible as I can when the strategy I had originally mapped out, doesn’t work out!

A wobbly start to the week, Give Us a Wave and abseiling!

08-Aug-2012

I had a ‘wobbly’ start to last week, I sailed into Oncology ready for the perfunctory pre chemo blood test to find that all was not as well as I hoped. My haemoglobin count although still low at 8.9 was acceptable, as were my white cells, but unfortunately my ‘clotting’ platelets weren’t. This meant an automatic refusal for Chemotherapy on Friday. On top of that a previous CT scan had shown that a very small but seemingly insignificant node in my armpit had changed slightly, enough to warrant a mammogram “just as a precautionary measure”. Despite my outward smile, and again the nurse explained everything twice (I am finding it harder to process and retain information- or is that just my age?) I left the department feeling as flat as a pancake. I think mentally I had ‘geared’ myself up for my 5th line of Chemo and it just wasn’t going to happen, still, that’s something to look forward to next week!!!

At least the weather turned out not too bad for the ‘Give Us a Wave’ fund raiser at St Ouen, a huge thanks to Little Joe and his team, as well as all those hardy souls that braved the sea in the name of Charity! (I heard the cakes were pretty good too- thanks ladies!)

One of my sons is attempting to abseil down Cyril le Marquand house in August for Jersey Cancer Trust (rather him than me, however I have abseiled before and actually once you’ve ‘gone over the top’ it’s quite fun! Having said all of that I was in my teens and far more fearless than I am now!) You are talking to someone who STILL can’t look at the needle during blood tests and especially NOT the cannula.

 

A trip to St Ouen’s…

12-Jul-2012

I thought I would pop out to St Ouen and see ‘Little Joe’ (next to Big Verns) called Little Joe’s Surf shop today- he’s a nice chap and very helpful. We chatted about the forthcoming ‘fund raiser’ and big launch of ‘Give us a wave’. The idea is to get together a team of people (4 or 5) and try to catch as many waves as possible- in a relay format and in an hour.

All the proceeds of this fund raiser will go towards FOJO and Macmillan- helping people like me get through this terrible disease called cancer.

I always try and look on the ‘bright side of life’ but sometimes it is just not possible (you are allowed to have ‘down days’. For instance I have found that it took me a week to ‘recover’ from my 3rd line of chemo, so it was with some foreboding that I entered the oncology dept for my 4th line. However after chatting to my nurse, she explained that they expect this ‘dip’ in patients and look out for it accordingly. You do usually start your treatment in full battle armour with the required vim and vigour that one needs, but as each session progress’s it is harder to ‘fight back’. This is entirely normal (even for me!) but fear not, as help is out there if you should need it, and soon the rollercoaster is on the upward climb once again!!

Heath Robinson desk

10-Jul-2012

There I am sitting in the green chair minding my own business (for once) and contemplating the choice of either opening my book or reading the newspaper, when I get a call from across the way from nurse HD. She informs me that her patient a silver surfer (an o.a.p. who goes on the internet) is happily ‘playing around on his spanky new ipad!!! Outrageous, and why haven’t I got one!!

Talk about feeling like the poor relation! While we are on the subject about feeling poor, those nurses struggle to find space on their ‘Heath Robinson desk’ in the corner- ok, (sigh) meaning of ‘Heath Robinson’ for all the youth?

William Heath Robinson (signed as W. Heath Robinson, 31 May 1872 – 13 September 1944) was an English cartoonist and illustrator, best known for drawings of eccentric machines.

In the UK, the term “Heath Robinson” has entered the language as a description of any unnecessarily complex and implausible contraption, similar to “Rube Goldberg” in the U.S. “Heath Robinson” is perhaps more often used in relation to temporary fixes using ingenuity and whatever is to hand, often string and tape, or unlikely cannibalisations. Its popularity is undoubtedly linked to Second World War Britain’s shortages and the need to “make do and mend”.

Crikey, wish I hadn’t used that illustration which makes me feel 100 years old!! (Saying crikey doesn’t help my cause either!)

Macmillan coffee morning

I thought I’d give the Macmillan coffee morning a try out last week, even though it was aimed at ‘thyroid cancer’ anyone (all are welcome, including carers) can turn up.

Big smiles from the lovely Theresa, Sue and Tracey greeted me- plus homemade chocolate brownies, an excellent first impression! It was very easy and informal, and particularly as I was feeling a little ‘down in the mouth’ from my 4th line of chemo, just the tonic I needed.

Very refreshing talking to ladies and gents who have been on the ‘rollercoaster’ of chemotherapy and come out on the other side- still able to have a laugh!

I’m not sure how the conversation got around to body hair (or lack of it!), but you don’t realise how necessary nasal hair is, until you haven’t got it- fancy being told by your 10year old son that you need to ‘blow’ your nose as it’s running down your face!! And on top of that when it grew back it was so long she had to trim it!!

We took a few pictures of us enjoying the hospitality of Macmillan facilities and a very special mention has to go to Big Maggy’s as they provide the coffee at EVERY function FREE of charge!

I believe they hold a coffee morning on the last Thursday of every month- well worth a visit to the Lido Medical centre if you’re not busy……….