My musings and ramblings in a blog. By recording my thoughts and my fears I think this will help me come to terms with this disease and maybe reassure others who might be unsure.
My Diagnosis:
Left breast cancer: T2 (25mm )N1 (3/4) Mx invasive lobular carcinoma grade II. ER8 PR4 HER2 FISH non-amplified, but a great deal of necrotic tissue. Margins clear. No LVI.
Treatment:
Wide local excision plus sentinel node biopsy. 4 x EC (Epirubicin & Cyclophosphamide) + 3 x ‘T’ (Docetaxel)
My breast cancer journey
I was diagnosed in August 2017 when I got called back for another mammogram. Wasn’t unduly concerned and I had no lump that I could feel and thought it was probably just routine. DH went with me and we spent the best part of the morning at the Luton/Dunstable Breast Clinic. I cannot thank or praise these nurses and doctors there enough. The doctor kept ordering more mammograms as she could see a lump from one angle and then not at another!!
Finally said there was a lump and had biopsies on lump and lymph nodes to be sent for analysis. I was told there and then it was cancer!!! Did not need to wait for biopsy the doctor knew.
Referred to St Margaret’s at Epping, Essex and received appointment to attend (when we were actually away in Spain) which we definitely needed at the time.
Attended appt with consultant and told more scans and MRI to be done
Attended more appts for these and went back to consultant to be told lymph nodes were clear however, 2nd lump found. Big relief really as I know lymph nodes are the real baddies!!
Went into hospital for Lumpectomy in October, in as a day case and sent home in the evening with drain.
Back for results when consultant advised surgery went well (pause) but 3 /4 lymph nodes diagnosed Not good
Had lymph node removal in Dec 2017. Total 8/14 diagnosed.
So that meant chemo and radiation for me as previously was only going to be radiation!!
And so the journey really begins………………………..
Wed. 24/01/2018
My first chemo session.
Well, that went better than expected!!! I am having EC-T chemo.
Nurses in these places are just fantastic!!!! Full praise to all of them up and down the country having to sit and listen to our woes and worries and probably hearing the same thing every day!!
The lovely nurse talked through everything she was doing to me and DH. It just makes these experiences so much better if you have happy people around you.
I must say in the ward there were more people than I expected but everyone was chatting, happy. I suppose I thought it would be gloomier and quieter etc. So glad it isn’t!!
So, will now try to update each day on how I’m feeling and my thoughts of the day. And also, a pic of my knitting as promised!!
Mon. 29/01/2018
Well there I am day 5/6 of treatment; (yesterday 29/1/18) thought this chemo was a piece of cake! How wrong am I??? I have got up this morning and just feel awful. I really can’t explain how I feel, no energy, my mouth and tongue feel strange, I’m crying and just now realise this is what I’ve got for the next few months. I have been so positive since diagnosis, I suppose, as I didn’t feel ill, it has all been a bit surreal until today! Now I just want it all to go away and wonder if I’m going to get through this with my sanity still in place. I know there are people a LOT worse off than me, and much braver, so I’m sorry for whinging.
This chemo doesn’t give any warnings does it? Boom there you go take that.
Biggest curveball coming straight at me.
I suppose the good thing is I am sleeping reasonably well but won’t hold my breath!
The biggest support (apart from DH, which goes without saying) is the ladies online at the Macmillan Online Community.
OMG they are tremendous
You could whinge, wail and moan all day and they would still be positive. What a fantastic community this is.
They have all reminded me about the effects of the steroids, the comedown (urghhh) and injections. They then explain how they felt/feel and most are more or less the same.
This is a massive journey (much as I hate using that word) but it is. I just keep thinking this time next year all over, hair grown and back to normal (whatever that is).
Ah well, back to knitting and daytime TV (never watched so much TV) while I still can!!!!
Thanks everyone J
Mon 05/02/2018
I have decided on this title as the ‘the gift’ as I got up this morning, felt fine, had a good night’s sleep etc. and pondered (with my 1st coffee) this is not too bad, had a couple of really bad days, a few not so bad so all in all getting there.
BOOM ……. an hour later I felt as though I had been knocked into next week. I felt awful, flu like symptoms all over my body and absolutely no energy. I had an oncologist appointment today (my first since treatment started) and really could not find the energy to get washed and dressed.
Obviously, I did, as had to be at the appointment. But, by the time I arrived was feeling fine again!!!! So, so strange.
So, that’s why this is the gift that keeps on giving. I think it could be me as well thinking I’m sailing through this and it comes up and says NO.
Still oncologist was really nice, everything will stay the same for next round which is good. In and out in 15 minutes!!!!
Wed 14/02/2018
2nd round of chemo today, went really well, DH came with me and felt fine all through it. Even drove home!!
Carried on with steroids, injections and anti sickness as per first time. Felt a bit woozy and tired but nothing unmanageable.
This 2nd round has been really good and have felt better than first!!
Mon 26/02/2018
Oncologist again today asked how I had been and said yes, all good. He said would keep dosage the same as my body seem to be tolerating it well. Good for me!!
Wed 07/03/2018
3rd treatment today, OMG. Felt it really going through and didn’t feel too good. Nurse was lovely and kept checking I was OK.
Finished off with a coffee and biscuit but did not feel well enough to drive home so DH got me home safely.
Well to say this knocked me for six would be an understatement!!! I felt so so tired when I got home fit for nothing. So different to the 2nd one. Maybe it is the build up in my body, not sure but do not like this at all.
Bed early after all the drugs.
Thur 8/3
Got up didn’t feel too bad but not great. Pottered about at home doing nothing much as so so tired. Not slept for more than about 4 hours.
Fri 9/3
Did some housework, no real change just very tired. Didn’t sleep well again about 3-4 hours.
Sat 10/3
Louise and Isla came over, still so tired and worn out, no energy at all, again 3-4 hours sleep. Went to bed early but woke 3 separate times. Not good.
Sun 11/3
Mothers Day!! ha ha, felt awful when got up again not enough sleep. Then the CRYING started. Horrible but can’t stop it. All the questions, why me? effing cancer, what have I done to deserve this? All the usual.
Bed early and slept pretty well, that’s cos steroids have stopped.
Mon 12/3
Slept better last night but just no energy, horrible taste in mouth still, woozy, giddy, just plain horrid
Monday 12/3/2018
What they don’t tell you
Not quite halfway through this chemo shite and these are my observations on common side effects that no-one talks about too much as people tend to focus on the bigger effects. Which is quite right. A lot of people end up in hospital on a regular basis through having this treatment either very bad side effects, bloods low, infections etc.
It hit me today about the smaller side effects that have such a dramatic effect on our everyday lives.
Crying
OMG the crying comes on and you can do nothing about it. It hits you like a ten-ton lorry, boom… there you go, take that. You feel very very sorry for yourself
Tiredness/Lethargy
It wears you down, everything small thing you try to do it seems it like climbing a mountain. I walked up the stairs and had to sit down on the bed as I was puffing and panting with the effort of the walking.
Weariness
No energy to do anything, you just want to sit and do nothing
Concentration
No concentration for a few days. I will get up to get something and stop and think ‘what was I going to do or get?’
Horrible tasting mouth
Urgh, coffee, tea everything tastes horrid. Does go after a few days and settles down.
Hot Flushes!!
Didn’t suffer with this during menopause but now… duvet thrown off in the middle of the night!! Hot flushes during the day just sudden sweats horrible!!
Runny Nose
No hairs up my nose so it likes to ‘run’ more than normal.
NO HAIR!!!!
Nearly all of my hair has gone and I feel I’m getting used to it in as much as I will answer the door to the postman/postlady and think nothing off it and wonder why they look embarrassed!! Poor things. AND the hair below…. go to the loo and wipe myself with tissue and bits of tissue stick to my skin as no hair!!! Sorry needs to be talked about .. these are facts!!!
These are my main side effects. Nothing as bad as some people I do understand but they get me down as I just want my life back and I keep thinking I have got until at least June/July before the finish line.
Thur 15/3
Well I last updated 3 days ago and thought by now I would be feeling better, no, how wrong am I. When I said this has hit me harder this time it is also going on for longer. Previously I have felt fairly good as taking the steroids, finish them have a major meltdown for a day or 2 and then back to normal (well, as normal as you can be with this poison through your body).
Not this time the emotional side of it has JUST about subsided but the physical side is still well and truly there.
I have been trying to go for a walk which, for me is very difficult as I also suffer with Spinal Stenosis which makes walking very painful. So, add to the tiredness and I sometimes feel I’m going to pass out!!
Then the emotions…. my daughters call or text and all I do is moan about the SE which then makes them feel helpless as they can do nothing. THEN when they don’t contact me I’m feeling unloved and no-one cares. So, so silly but these emotions are truly horrible.
Have just come back from the supermarket, only popped in for a couple of things but came home and had to sit down as felt I had run a marathon!!
Ah well, onwards and upwards.
Well, not updated lately so thought I would put down how I’m feeling this time round.
Mon 19/3
Saw Oncologist and mentioned all side effects including tiredness, steroids not seem to have kicked in as well as usual, no sleep, very emotional and the weariness seemed to go on forever. She wasn’t too bothered until I mentioned I had a sore mouth and tongue for a few days (now gone) which felt like the after effects of going to the dentist. Didn’t think much about it until I told Onco and she was very concerned ??? looked on her computer and said this was NOT a common side effect and went off to seek more advice. There was me thinking this was nothing. Anyway, she came back and said they would reduce my dosage slightly for #4!!!
Wed 28/3
Had round 4 of chemo (EC) was really dreading it as had felt so lousy after number 3. Anyway, apart from some nausea first day everything seems to be working as it should this time and so far, feel fine. I know the steroids will finish tomorrow and will more than likely have a major meltdown again but as I know it is coming can at least try to control it a bit better.
Good Friday 30/3 Easter Weekend
Not had a good Easter as my darling Honey (the cat) was not well all over Easter and I know she has kidney disease and think the end is very near now. We wanted and hoped she would die peacefully at home but this is not going to happen in all reality and called vet with appt for Wednesday.
Latest update on my wonderful chemo journey!! Following day was not bad, touch of heartburn Friday and Saturday however, by Sunday steroids had finished and felt awful. Meltdown once again (however, think I am managing them slightly better now), just felt so, so tired and no energy once again. Spent most of Sunday and Monday laid up on settee sleeping on and off.
Tuesday DH back to work and tried to do some housework but again no energy and just took ages doing the slightest thing. Still have bad taste in mouth and have been very achy this time, started around the weekend and still achy by Friday (6/4).
Wed 4/4
My darling honey has now gone for the long sleep. She is at peace now and not suffering however, I am distraught. She has been good company while off work and always talked to her but I know it was for the best and if left any longer it would have been selfish off me. Doesn’t help with the hurting though.
Sat 7/4
Am trying some pineapple today as it has been recommended on the forum https://community.macmillan.org.uk/home so will see how that goes.
Been to supermarket today with DH and still no energy levels to speak off and ended up with raging backache, couldn’t wait to get home.
SE are slowly going but it is the energy levels I can’t cope with. Just walking up the stairs I end up puffing and panting and having to sit on the bed to get my breathe!!!
They have definitely got worse after each chemo session.
So, my last EC was #4 and now have 3 sessions of the ‘T’ to look forward to, absolutely dreading it!!!
First ‘T’ Treatment ……… here we go, into the unknown once again.
Mon 9/4
Have seen Onco today and told about SE from last chemo, saw Dr Appo who previously arranged my treatment plan. Said how good I looked which was a wonderful boost!!! Went on to tell me about possible side effects of T. Anything and everything so will have to wait and see.
Have to start steroids day before chemo this time, MORE to take so stronger dose!!
Wed 18/4
Have taken steroids yesterday which gave me a big lift and didn’t sleep well Tues night, bit of steroids and also worrying about the T treatment.
Had the treatment was there about a couple of hours all in all. Felt Ok at the time and came home and just flaked out.
Thur 19/4
Felt fine as last day of steroids, weather was great so sat in garden very relaxed.
Fri 20/4
Louise and Isla came for a visit, had new toys etc for Isla which she loved and, again, a lovely day in the garden however, was starting to feel tired by the afternoon as steroids were wearing off. Had a gritty eye yesterday and today which was irritating more than anything.
Sat 21/4 (day 4)
Well here we go….. woke up felt bloody awful. Up at 5am as couldn’t sleep and SE starting to kick in. Had pain in both legs the ‘pins and needles’ they talked about!!! More like bloody daggers stabbing me continuously. Shooting pain in breast scar. DH bought gel for sore mouth. Spent most of day on settee.
Sun 22/4 (day 5)
Up at 5am again with pain in legs getting worse. Also started tingling in hands and feet, fingernails sore and going brown. Again, in so much pain as taking painkillers like sweets. Still pain in same places, sore throat, headache and taste buds GONE!!! Everything tastes awful. Feeling very, very sorry for myself and crying with pain.
Mon 23/4 (day 6)
Again, same as Sunday, so much pain and up at 5 again as pain wakes me up. Fit for nothing, also toothache, earache, back and hips ache as well which is probably down to bone injections.
Tues 24/4 (day 7)
As above, no change, crying all the time, don’t know how much more I can take, feeling very desperate now and an absolute wreck.
Wed 24/4 (day 8)
Still the same not quite as severe but still enough to wake me at 5 and keep me more or less permanently on the settee. Rang John and asked him to take me to hospital on Thursday.
Thur 25/4 (day 9)
Went to hospital for line flush, DH had to take time off work to take me as have been in so much pain ALL week couldn’t drive.
So, we got the at 9.30am nurse flushed my line and I asked about seeing the doctor as could not stand the pain any longer, yes that was fine he should be in about 10ish, fine we would wait. So, sat and waited and waited and waited!! Doctor strolls in at 10.45, someone was already booked to see him so would have to wait a bit longer, OK but the doctor just carried on walking about here there and everywhere, no urgency at all. Finally saw him at 12 noon!! He prescribed painkillers (codeine) and steroids to start relieving the pain plus mouthwash that we could only get from hospital pharmacy. So off we go to pharmacy put in prescription at half 12 and was told would be half hour. Went and had a coffee and DH popped down there to pick up for me. He was gone about 20 mins so I strolled down to see where he was. Still waiting at 1.30 – not ready. Sat and waited and then I got up and said to person in pharmacy where is it?? Oh, it’s being done. Well asked for manager as we knew it had probably got overlooked so played the cancer card (don’t think it made much difference though!!) finally got out of there at 2pm. NOT HAPPY.
Started steroids and painkillers this afternoon after flaking out with exhaustion after the morning we had. However, did start to work pretty quick and started feeling better at long last.
Fri 27/4 (day 10)
Had a good day and managed to potter about a bit. Fingernails and feet starting to really hurt and skin is drying and cracking on my fingers. Feeling exhausted still after the worst week of my life.
Sat 28/4
So, day 11 after first T and only just beginning to feel better.
Did not want to take steroids today but by this afternoon hands and feet were really painful so have taken them and a painkiller and feel much better already. Skin on fingers is still so, so dry and just falls off and nails still changing colour.
Now just have to wait and see Onco on Friday and see what they have to say.
Fri 4/5 (day 17)
Saw Oncologist today, Dr Appo, really lovely, told him how bad I had been on this last treatment, just smiled as if to say ‘well I did tell you it would be bad’. Because, of course, I’m feeling and looking fine when I go to see him!!! Checked everything with me and it was only when he pressed my finger he said would reduce by 20%. Thank god, could not go through another bad 2 weeks as before.
Chemo day, had a reduced dosage today. Felt fine afterwards, came home and just rested.
Thurs 10/5
Went to see a friend for a catch up.
Fri 11/5
Went to lunch with my brilliant friends Debbie, Gill and Nola. Still on steroids so felt fine. Had a lovely catch up with the girls. My poor Nola has been diagnosed with lung and brain cancer
Mon 14/5
Still in pain but nowhere near as bad. Have stronger codeine from doctor so, as long as I take painkillers I can cope.
Fri 25/5
So, full pay now stops and will be officially on leave as from Monday – ha ha!!!
Tues 29/5
Went for blood test (late as bank holiday), then Oncology and then Vascular appt for my legs!!!
Oncology we saw Dr Goyal as he is medical Onco and went through my radiotherapy with me. Has made referral and will wait and hear from North Middlesex hospital for planning appointment. Has booked to start on 2nd July.
Vascular appt was good as no problem with circulation in my legs so back to doctors in due course.
Feeling fine as 3rd week of chemo. Not been as bad as last time.
LAST CHEMO TODAY!!!!! HURRAY!!!!!
All went well at chemo, Picc line removed. Gave the nurses a card and some chocs and biscuits. Then went and RANG THAT BELL!!! How good did that feel.
Thur 31/5- Sun 3/6
Pretty sure have had full dosage this last time as symptoms are manageable but absolutely exhausted and in pain. Have taken steroids for longer for some relief but is really dragging on. On painkillers every day which I hate but cannot function without them.
Mon 4/6
Up to North Mid for radiology planning appt. Waited about half hour to be seen and met an old friend, Neil and his mum, while we were there!!
Eventually got called and all in all took about an hour. They sit you under the CT scan to line you up and has to be exact!! Then you get 3 tiny tattoos for where the zaps will go.
On way home got a bit lost but all ok in the end!!!
Felt Ok while at hospital
Mon 11/6 – Sun 17/6
In pain every day and cannot, NOT, take painkillers. Still hard even pottering about, so, so very tired all week.
Tue 19/6
First day back at work!!! Only doing 11-3 to start as still so very tired. Also had doctors appt for runny eye gave me some drops not very good!!
Have been like this since last chemo and feeling very frustrated as it is the last and want it all over now but pain and tiredness still really, really lingering!!! This has been such a long, long journey and am tired in pain and want it all over with now!!
Silverknitter 