My Partner Has Breast Cancer - Our Story

End of Chemo - The beginning of the end (we hope!)

2010-08-28T19:08:00Z

Yesterday marked 3 weeks after Sal's final chemo. In a week she starts radiotherapy.

I have deliberately not been posting to this blog recently as we are now trying to put as much of the treatment behind us. So, with that in mind, I have decided to stop this blog.

This blog has been very worthwhile for me. It has allowed me to vocalise my thoughts as treatment progressed and to get others thoughts and feedback. I want to thank everyone who contributed. I hope it has helped others.

Sal is doing fine recovering slowly from chemo... even her hair is showing signs of sprouting again!

I will look in and post occasionally to the forum but as my last post on the blog - thanks.

Chemo Cycle 6 Starts - The Beginning of the End!

2010-08-05T13:52:00Z

Finally Sal's 6th and final chemo cycle has arrived. She had the treatment this morning and as it has been on all 6 cycles there was no reaction at all during treatment.

She is in bed now though because again, as with the previous cycles, she gets very tired very quickly and this combined with her getting very little sleep last night from the steroids she is completely shattered.

We have agreed that her Hickman line will remain in for at least 4 weeks while she recoveres from this cycle just in case it is needed.

Sal will have a meeting with the oncologist to review chemo as a whole in 2-3weeks time (date to be set).

Radiotherapy will commence in about 4 weks time (date yet to be set).

From my personal point of view I am glad that the end of chemo is now in sight. It will be great to get back to some level of normality in a few weeks when Sal has started to recover. We have coped well but this treatment schedule is difficult regardless of how resiliant and positive you are... eventually it gets to you in one way or another.

I apologise for not reporting as often as in the early days of treatment. We have been spending less and less time thinking about cancer and treatment and more and more time trying to do normal things.This strategy has worked well and allowed us to cope with things without it becoming all-consuming... something we tried to avoid right from the start.

So recovery from cycle 6 then radiotherapy... bring it on!

Chemo 5 review and Radiotherapy Consultation

2010-07-31T00:34:00Z

We went to the hospital today for the standard review of cycle 5 but also to see the ocologist and radiotheapy planning person to discuss Sal's RT treatment.

This cycle has been OK. More fatigue and nausea but that is to be expected in later cycles. She was given the go-ahead to have cycle 6 - the last cycle!

We talked about her RT treatment. She will have either 3 weeks or 5 weeks of daily treatment (not weekends) depending on whether she might want to consider reconstruction surgery later. If she does then they will give the RT treatment over 5 weeks as that is slightly less aggressive on the surrounding tissues. Sal hasn't yet decided. So in preparation for the RT she had a CT scan today to aid with positioning and had a few small tattoos done for alignment. Just dots... no angels or roses or anything quite so noticeable!!!

We also discussed the removal of her Hickman line which will be a week or two after cycle 6.

Sal was also given a prescription for a tamoxifen alternative Letrozole. This is one tablet daily for 5 years. There are some side effects which include bone thinning so Sal will be scheduled a bone density scan soon to ensure her bones are able to cope.

So, things move on at a rapid pace. It is hard to think back to when Sal's chemo started and we were saying "It is only 6 cycles - it'll fly by" - and it has!

Cycle 5 Starts

2010-07-16T17:40:00Z

Chemo 5 went ahead without any hitches. Sal doesn't get much in the way of symptoms during the chemo session but she does get a "moon face" from the steriods.

She is quite well today, just waiting for the chemo fog to kick in in the next day or two. She says it is like having several bags of cement on top of her! Mind you, her appetite for ice cream hasn't deminished! Good job the golf is on TV for the next couple of days.

Sal's symptoms seem to have settled down into a pattern now but she is getting more tired. The nausea seems to last all through the 3 weeks now which it didn't before but the metoclopromide seems to take care of it most of the time. Fatigue, heavy legs, some water retention (face and ankles), occasional mouth sore, some tummy issues... but nothing too bad really.

Interestingly, her pulse is generally quite high throughout the cycle but blood pressure and temperature is normal... a sign of the body working hard to recover I bet.

So we only have one more chemo to go after this one. It is strange... it all seems so long at the start and then the end seems so far away but with all that is going on it is amazing how quickly it all goes. Only 6 more weeks to go then before radiotherapy looms... we are not thinking about that until necessary!!!

Onwards and upwards...

End of Cycle 4

2010-07-12T18:47:00Z

Again, I haven't posted recently and that is the reflection of things going quite well.

Cycle 4 has been similar to cycle 3 but the symptoms were more severe... more fatigue, more bone ache, more nausea, more muddy mouth taste. Nothing that wasn't manageable but worse than before nonetheless. One thing that was noticable by me was that she had more energy than before after about day 8. This was particularly good as we spent the last week away in the caravan at the British Grandprix at Silverstone. I think she has done a little more than she should have done but she insists it was worth it. The last week was completely free of discussions about cancer and chemo so it was particularly refreshing.

I have continued to flush her Hickman Line every 4-5 days without any issues. I am feeling quite happy that I can flush now safely. Like everyone said... it isn't difficult after proper training.

So, cycle 5 starts Thursday. Just one more after that. I am just hoping that the sysmptoms don't continue to get much worse. They are manageable at the moment but if they get much worse it will start to become less tolerable. Onewards and upwards...

Thank you for all your good wishes and thoughts

2010-06-23T20:40:00Z

I haven't been able to reply to everyone individually who has commented on my blog posts and has sent good wishes.

I have found, and I am still finding, writing this blog to be a real help to me. It may sound strange but just writing about what we are going through... what Sally is going through... is so helpful to me, but for some reason it is. I find that in having to think about our experiences I also have to try to put them into some kind of perspective and this seems to help me handle what is happening a bit better. Also, it is good knowing that others in a similar situation might read the blog and might perhaps gain some small comfort from knowing that their experience might not be so unusual. Hopefully it might make their expierence a little less scary... at least at that moment... in the same way that reading of others experiences has help us.

I love reading about other experiences on this site... and I hate it! There are stories of great news, great courage, great suffering and great loss. It can be very confusing to spend a couple of hours taking in others posts but in doing so it is always a pleasure to log out knowing that we are all one big community sharing in what life has thrown at us. Some are coping better than others but I hope that whatever your experiences, our experiences, we can help each other through these difficult times.

So, thanks from both of us for reading and commenting, even if I don't actually get to reply to you all.

Paul & Sally
x

Cycle 4 Starts

2010-06-23T13:32:00Z

The past few days has been quiet on the blog because we managed to get a few days away in the caravan. These days are a great way for us to relax and recharge our batteries ready for the next cycle of fun!

Sal went to the hospital ths morning for her pre-chemo blood test. Her Hickman line wouldn't allow the taking of blood so they had to get it via a vein again. This time they didn't have any problem though and all went well.

So the next cycle has started. It seems to be settling down to a pattern and we are both hoping that the pattern holds this time round. Sal's breathlessness is much better now but not gone completely. The nausea is very much still there but controlled very well by the drugs. We are hoping that Sal won't need any more blood transfusions this time round.

So, onwards and upwards...

Cycle 3 Review

2010-06-18T18:01:00Z

Sal and I went to the hospital this morning for her normal review of progress so I thought I would bring you all up to date.

This cycle has gone pretty much to plan. Symptoms this time include slight nose bleeds, breathlessness, nausea, bad tastes, fatigue, trouble sleeping. Nothing too disabling or troublesome but they decided that Sal should have a chest x-ray today just to check.

Sal had a head CT scan last week and that has come out clear.

So, just 3 cycles more and it is all starting to become almost routine and as a result a bit less stressful or worrying. Blood test is next Wednesday and chemo cycle 4 is Thursday is her bloods are good.

More next week.

A drop of the Red Stuff

2010-06-07T11:52:00Z

Sal is in hospital all day today receiving 2 units of blood. She has been breathless almost all the time since starting chemo and her Hb count was down to 9 at her last chemo bloods (normal is 12-16!). It is not that unusual for someone on chemo to need red cells, full blood or platelets so it isn't anything to be concerned about... it is just another full day at the hospital for Sal unfortunately.

Each unit takes about 3 hours so I expect her to be finished about 6pm. So far, her Hickman line is behaving so, so far, no needles.

We have been told that she may not feel the benefit for a few days but hopefully she will feel much better in a day or two.

Chemo 3 Day

2010-06-04T12:03:00Z

Chemo 3 went without a hitch this morning. Sal is already feeling the effects; starting to feel tired, funny taste in her mouth.

They did notice that Sal's red count is down so she is anaemic and that might explain her breathlessness and excessive fatigue. So they have scheduled a full blood transfusion of 2 units on Monday. Even that is a bit of an ordeal. Each unit takes 3 hours and so it will turn out to be a long day for her especially when she is going to be already fatigued from the chemo. Coincidently, I gave blood while Sal was getting her chemo so we are taking 2 units and giving one back. Sal won't be getting my blood back as we are different types but it is a wierd feeling to give blood knowing that Sal is benefitting from someone else doing the same thing.

So Monday will be a long day in hospital for Sal.

Confusion over Hickman Line maintenence

2010-06-02T06:32:00Z

Everywhere I look I get conflicting information on how to carefor Sally's Hickman Line. Some trusts say flush twice a week, some once. Some trusts say use a Heparin lock, some don't. Some trusts say aspirate before flushing, some don't. Some trusts use a bionectar, some don't. In fact, there is even confusion within my local trust because on the Oncology ward they flush once a week and don't use bionectars whereas at the Oncology Outpatient Treatment Centre they flush twice a week and use bionectars!

It seems we are going to have to make up our own minds on how often to flush and how to do it and so I have read all the material I can find on the web (of which there is loads as many trusts publish their line maintenence guidelines), I have listened to the specialist nurses at the hospital and I have spoken to a specialist cancer nurse at MacMillan Cancer Support and these are my conclusions:

always use an aseptic procedure... obviously that doesn't vary much between trusts
many trusts don't aspirate blood beforehand and as I haven't been shown the correct procedure to do it then I won't aspirate
use a bionectar and change it weekly
change dressing when required or weekly
I am not given Heparin so I won't be using a Heparinised saline lock
I will flush every 4 days. This is a compromise between the weekly and twice a week (both of which seems acceptable) but one that fits nicely with the chemo treatment intervals. So I will be flushing 4 times between chemo sessions

So that is our conclusions. It isn't cast in stone and if we change things again I will repost but for now that is how we are looking after the line.

Away in the Caravan

2010-06-01T08:55:00Z

I just wanted to give a quick update to the blog as I haven't been updating the Latest News for a few days and I wanted to explain why.

We actually managed to get away for a few days in the caravan! Yippee! OK, we didn't go very far... just 3 miles actually!!! We went and stayed on the site where we store the van in Landrake, just 3 miles west of Saltash. We were hoping to get away to a friends birthday party near Redruth but we felt that 50+ miles was a bit far in case we needed to get to the hospital in a hurry. Perhaps next cycle, when we have a bit more confidence in what might happen, we might go a bit further afield.

So, bloods tomorrow prior to cycle 3 on Thursday. So I will be deep cleaning the house again tomorrow and antiseptic wiping everything once again.

I'll become a good house-husband at this rate!

So back to the daily "Latest News" updates for the next couple of weeks at least. Thanks for reading.

Cycle 2 Review

2010-05-29T14:22:00Z

We went to the hospital yesterday for a review of Sal's progress with the oncology team yesterday.

It all went pretty much as we expected. The last cycle they dropped the Adriamycin (doxorubicin) and they plan to continue the rest of the cycles with just TC (Taxotare and cyclophosphamide).

The surgery wound is finally showing signs of healing and the Hickman line is all OK.

Sal is to continue to take Metoclopramide when ever she feels nausea and they have dropped the need for her to take any antibiotics at days 5-9. They are keeping the Neulasta injection the day after chemo because she ent particularly low on her counts on cycle 1. In fact, she went low on all counts... white cells, neutrophils, platelets and red cells! Something that is very rare and it is a good job she was in hospital for that period as she was quite vulnerable at that time.

So, cycle 3 starts next Thursday and it all happens again. Still, the good thing is that this marks the half-way point in terms of treatments. Doesn't time fly by when you are enjoying yourself !!!!!

More Acid Reflux

2010-05-23T08:57:48Z

Well I haven't done a post for quite a few days now so I thought I would write a quick update of how last week went.

All in all it hasn't been a bad week. Sal still has part of her surgery wound that hasn't healed yet and that is the main issue right now. The surgery wound healed but when she was in hospital last cycle a 1 inch section of it came apart and got slightly infected. It hasn't really healed much since then. No one at the hospital seems concerned about it though. They have looked at it and decided that it would be better off without a dressing and it has formed a bit of a scab but it still is an open section of the wound and just doesn't improve much. They have given her high-dose oral antibiotics (flucloxacillin 1g QDS) to get rid of the infection but this is causing Sal considerable discomfort because it gives her acid reflux. In fact, last night she didn't sleep much at all and had to prop herself up with pillows all night. Also, she is having to take her ant-sickness drug all the time too as the antibiotic gives her nausea. We will mention all this at the Oncology Clinic tomorrow when we go to get her line flushed. I am hoping that after tomorrow I can flush it for her... fingers crossed.

So, apart from that the week has been a good one. Sal felt so good that we went to the supermarket and did our first food shopping together for nearly 5 weeks! Luxury! From my perspective this is a huge relief. Not only that Sal clearly recovers to some extent between cycles but also that for a week at least it looks like I might not have to do absolutely everything myself. f course, I shall make sure she doesn't over do it, but sometimes it is the little things that take off the strain... like making a cuppa or getting her drugs ready to take. It all sounds rather silly and perhaps a little petty to be concerned over little things like making a cuppa. It only takes a few minutes and is no effort. Yet, after 5 weeks of getting up from my chair to get or do everything that either Sal or I wanted, to have a cuppa made for me is a shear luxury! I don't begrudge doing this for Sal. In fact I would do anything, for as long as possible, to make Sal's treatment more bearable, but when you are used to sharing all the chores, to do them all oneself becomes very hard work. How my mum managed brining 4 of us up pretty much on her own (my dad didn't do much except work to bring in the money) I have no idea. I now have a new respect for single parents too!!!

Next week Sal has a few things booked. Tomorrow (Monday) she is at the hospital for a few things... having her Hickman line flushed, she also has an appointment with her neurology consultant about her progress with her migraines, and she has a fitting appointment for a prosthesis until she decides on whether to have a reconstruction. On Wednesday she has a "Mini Makeover" at The Mustard Tree Centre at the hospital. This is to help with makeup and other issues surrounding hair loss on head, eyebrows etc. She is looking forward very much to that. Thursday is another Line flush but I may be able to do that myself at home. Friday is her regular progress meeting with her oncologist.

Lots going on this week then. More next weekend unless something happens before. I am updating the "Latest News" section on the right of the page every day so if you just want a quick update then that is the place to go.

I hope you all have a great week this week with all this hot sunshine (assuming you have it as we do today!)...

Steady As She Goes

2010-05-15T20:40:00Z

It has been a couple of days since posting so I thought I would drop in and post an update.

The good news is that there isn't much to report. Sal is very fatigued and spends all day resting in her chair at the moment but that is the bulk of the effects of chemo 2 at the moment. This is pretty similar to cycle 1 which didn't go wrong until she started taking the antibiotic on day 5. This time the oncologist has said that she should not take any antibiotic during days 5-9. They feel that this is probbaly the best way to go especially as they dropped the doxorubicin this time. They don't expect her white cell count to go anything like as low as last time. It does mean that we will need to be extra careful not to pick up any infection but hopefully it will mean that cycle 2 goes much better.

So, so far so good and steady as she goes.

Even if I don't post a blog entry I will continue to do daily updates to the Latest News on the right of the web page so keep looking in.