So many updates....

..... that I hardly know where to start.

Since I last blogged (and, apologies for the even longer absence than last time), I've been very down in the dumps for various reasons, but finally, with the emergence of the sunshine (better late than never), I seem to be coming out the other side.

I've no idea what set me off really. Probably a combination of being Neutropenic again after my last chemo, and waiting to start Radiotherapy, as well as waiting for MRI results.... too much to think about really.

The CT scan pre-RT was awful. For some reason it hadn't occurred to me that I'd have to lie half naked with scars etc on show in order for people to manoeuvre me into the precise position needed for the RT sessions themselves. Despite the extremely professional and wonderful staff, I felt extremely exposed and vulnerable, which stressed me out completely. My back also went into spasm after the CT scan which really didn't help... Hey ho.

We managed to get away to see my parents before starting RT which was lovely. It was great to be "home" again, visiting old walks and haunts, but it also made me extremely sad. So much has changed since I was last at home and I'm really not the same person any more.

What didn't help was just as we arrived at my parents, my Breast Care Nurse rang to tell me that there were some "changes" on the MRI that needed to be checked out, which of course sent me into completely panic mode. I won't keep you in suspense - a week later, I had an ultrasound which showed some milk ducts blocked with "debris" but nothing that needed to be biopsied, so an all clear for my remaining side which was an enormous relief. It didn't stop me panicking for 10 days or so though.

What it has made me realise is that I really do want another mastectomy, regardless of whether I have reconstruction or not. I am not prepared to accept the liability of keeping my left breast. Stupid really isn't it? We're born with two breasts whether we want them or not. The fact that they might cause such problems never enters our heads until the shit hits the fan. Enough is enough for me - I'm going to take back a bit of control and get rid whilst the choice is still mine.

What else has been happening? Too much to mention really, other than the fact that I've survived the RT intact and so far without too many burns. Apparently the skin and my body in general will keep reacting to the dose of RT for another two weeks, so I can look forward to my skin getting pinker and being more tired for a little while to come, but I'm hoping it won't get too much worse.

I hated going to the RT at first and in honesty, I've never got used to having to lie on a table half naked with people prodding me into position. This is usually done in the semi-dark so they can line you up with lasers for the RT, and when the lights are turned back on it felt, to me like I'd been abducted by aliens! You know those "classic" alien abducting scenes with the victim on a table, lots of bright lights, white ceiling....... just like that.

After the first couple of doses I started asking for the lights to be left off which helped a lot and reduced the feeling of being exposed. All of the teams work differently, and occasionally I was semi-covered up while they were giving me the dose on my neck, which was a relief. My back managed to cope with being on the table too - there's nothing like having to be helped up to dent the ego, but by the end I didn't get any muscle spasms at all.

All in all, RT was "better" than chemo, but it did feel relentless. Most of my appointments were in the evening - about 7pm, so the whole travel process is tiring. It's another milestone over and done with though, and I can't say I'm not relieved.

So, what's next? Well, I have an appointment to discuss my start of Herceptin on 13th May, two days after doing the Moonwalk, so I might be walking wounded! It'll be before the end of May though I think, so I'll have nearly 4 weeks off actual treatment which is much needed, from a mental point of view if nothing else. 

More than anything at the moment, I feel mentally shattered, and very brittle. It wouldn't take much for me to break but hopefully we will have calmer seas to travel for a little while.

I have finally started taking the Tamoxifen, and so far so good. I have already been having hot flushes and for a few days they eased off which coincided with starting the pills, but judging by the lack of sleep last night the hot flushes are here to stay for a while. No leg swelling yet, but I am keeping extremely active (training for the Moonwalk helps) so hoping to keep it at bay.

Should you wish to sponsor me, this is the link for my Moonwalk: http://www.walkthewalkfundraising.org/rebeccas_pink_ladies

I'm hoping to do it in less than 8 hrs, but we'll see!

 

Is no news good news?

I had an appointment with my Oncologist today to discuss the next lot of treatments, which went well, and rather surprisingly, started on time! It was a huge relief to be sitting in the waiting area of what is effectly, the chemo ward, and not be waiting for someone to call my name to take me through for more poison....

Still no MRI results though, which is frustrating as I was desperately hoping for some good news by now. Apparently it's the surgical team (and my lovely surgical consultant) that have to contact me, so perhaps I'll get a letter with an appointment booked by the weekend.....

A couple of ups and downs today - the up being that I can start Tamoxifen "when I like" but of course, within reason - sometime in the next couple of weeks. This doesn't sound like much of an "up" but my joint pain has been much worse today, not to mention my cold/cough (thank you children), so any excuse to delay taking more pills quite frankly, is a good thing.

For the downs - apparently I didn't pay much attention when we discussed Herceptin. I had assumed that it would be every 4 weeks for a year, i.e. 12 doses. Not so - it is 17 doses, so one every 3 weeks for a year. Bugger. Oh yes, and I should expect some joint pain as well.... Bugger.

However, I keep telling myself: "at least I'm going to be given it at all". It isn't offered to everyone, and particularly bearing in mind my "heart issue", I'm lucky that they'll give it to me at all. I will do anything to myself stop cancer coming back, so I'll just have to get on with it, scary or not.

I am slightly proud of myself this week though, even though it's a small thing.

I've been having injections in my tummy to increase the white blood cells by encouraging the bone marrow to generate more. Well, I had to do the injection myself yesterday, and despite a bit of whinging and moping about it to start with, I did it. Without fainting. Or being sick. I even did it again today.

This is a huge result, not only for me but for my poor long suffering husband who has had to pin me down the last few times.......

Small steps, but I feel pleased with myself nonetheless.

I'm back up to the hospital for a CT scan tomorrow to help plan my RT, and will report back in due course. Thank goodness for free parking is all I can say!

Chemo - Done.

Said in the typical style of Ched Gordon Ramsey.

I feel like hell (and am suddenly very sympathetic to the biggest child who has been complaining of a sore throat all week (ahem, ooops), but I am also very relived.

Phase 1 over. Now to chase up my Tamoxifen and Herceptin start dates. Whooppee.......

Well, maybe after I've had a sleep.

Everything aches, and my heart is racing, so it really is time to sign off for a few days and take it easy. I've got a feeling this chemo is going to go out like a lion, not a lamb. Very unseasonal....

So, not that you'll notice the difference as I've been so sporadic in my posting really, but "night night" and see you in a few days!

MRI's are LOUD!

I was expecting it to be loud, but had no idea it would be like a jackhammer going off next to me. Hey ho. Earplugs were provided, and I was v grateful to have them!

Other than being a wuss as I didn't realise I'd have to have a jab/infusion with a reactor during the MRI it went well. I cannot get over how amazing these machines are. Am very grateful for the money the NHS is spending on me. 

I won't get the results for 7-10 days, possibly two weeks, so will be keeping my fingers crossed. I do wish it had been a whole body MRI - would be nice to be entirely sure that there is nothing else going on.

I also survived my last "routine" blood test - apparently they aren't needed before Herceptin infusions, so that is a big plus Just got to survive the actual infusions!

For some reason I got really upset before and during the blood test again. Totally stupid, but the chemo ward was full of really v sick people yesterday (to my uneducated mind) so I guess it all got to me a bit. I reallly really really don't want to end up back in there having more chemo. Ever. What will be will be I suppose, but I'd give anything to stay cancer free.

Bargaining - does that mean I'm still in denial?

In other news, the biggest has what sounds like croup, so I'll need to talk about that with my team tomorrow. The smallest has also started coughing up phlegm, but isn't croupy, so all in all if I have to catch something I think I'd prefer his bug. 

Can I go and stay in a spa for a month please?

Will report back after tomorrow's chemo. Remembered to start taking steroids today, and I am so pleased I won't be having them any more. 

Trying to keep my chin up, but I have so many mixed feelings about tomorrow it's hard to describe let alone explain. 

Stiff upper lip. I will be fine, and all that jazz.

Tiredness and Low Blood Pressure

Is it possible for one to cause the other, regardless of which way round?

Chemo 5 has been average, other than the tiredness and dizziness - my husband and I both fell asleep during the session again, and I'm sure that the nurses have a bet on as to whether we'll doze through the Taxotere 3 times in a row.

The joint pain wasn't as bad this time round, which was a relief - it also possibly shows that I was far more run down before my last session that anyone realised. I am ridiculously week though, and my muscles ache at the slightest hint of "hard work".

I'm sure that this ridiculous weather doesn't help either - it has been so very very cold. The horses started to moult, then changed their minds, and the children have made an amazing amount of use of their ski suits - they have at least allowed me to get out and have some fresh air! They are possibly a bit too fit though, as I was so cold and tired the other day after 3 hours outside I had to beg them and bribe them to go indoors again.....

I know that it's meant to be the start of Spring, but is it too late for me to start hibernating? I could sleep for a month.

I met the Radiotherapy consultant last week - he's lovely, very friendly, and very positive, which was nice. He wasn't going to use RT on my neck (where there are lots and lots and lots of remaining lymph nods), and I'm just under the "cut off" point - usually, 4 postive lymph nodes would automatically mean that the neck would be included in the "zapping", but 3 of course is just under. So, I've begged, and if when I have the planning scan, which is in a CT scanner, they are confident that they can give my Neck RT as well as chest wall, without catching too much lung (risk of lung scarring) then my neck can be done too.

Hopefully the consultant didn't think I was mad for asking for it to be done, but just in case I can't have all my doses of Herceptin I need to know that we have covered as many bases as possible.

So, chemo number 6 next week. Gulp. 

I'm torn between wanting to celebrate and just wanting to curl up in a ball and hide. I certainly don't think I'm going to do much after Wednesday (which is chemo day) other than curl up in bed and watch old episodes of Lovejoy.

I honestly think I am relieved - certainly when I talk to others who are just about to start their chemo journey I'm bloody glad I am where I am. I guess I just need to concentrate on the next part of the process, focus on getting through that, then ditto with the next treatment.....

In the meantime, perhaps I'll just sleep...............

And we're off.

Just about to leave for Chemo number 5. I'm sure I should be happier than this, but all I feel this morning is emotional and tearful. 

Tears of joy to be near the end? Those would make sense. I'm not sure that's what I'm feeling though.

More fear, actually, I think. I've just started to get used to this horrific cycle and soon it's going to change to Radiotherapy, then after 3 weeks of daily "tanning"  it will change again to Herceptin, and I don't ming telling you I'm terrified of starting that.

I suppose for now I'll just have to get on with it - stiff upper lip and all that, but boy oh boy the pressure is starting to mount. 

I've just lost 4 days!

Well, what a busy few days I have had. Well, I say busy - I haven't accomplished anything, but I seem to have lost 4 days somewhere....

I felt rather delicate last week post chemo, which was expected, and by the time Thursday came round was nearly back to normal. More tired than I hoped to be, but bearable. I went to work for a few hours on Thursday, in preparation for an auction of toys on Friday. Managed to get to work by 8am on Friday morning, and again, other than feeling a bit lethargic was fine.

I didn't feel much enthusiasm to start the auction at 10.30 so I asked a colleague to take the rostrum until I felt I could take over, which worked well and I did the last hour or so, which did wonders for my sense of self worth (chocolate teapot syndrome).

After the auction I will admit I wasn't much use, and by the time it got to 3.30 I was starting to get a bit shivery so went home. Things started to go downhill after that, and my temperature start to rise for the first time since I started chemo. I managed to feed the smallest his supper - fortunately, my daughter was at a sleepover so I didn't have both of them to look after. My husband came in at 6 and whisked J off to bed and made sure I ate some soup. 

I wasn't improving much and was still freezing, so decided to go to bed and cuddle my electric blanket. Fortunately we checked my temperature before I disappeared and it read 38.2. Not ridiculous, but the advise is to ring the acute oncology team if it goes higher than 37.5 which we did, and they asked me to go in to be checked out. Bother.

By the time we got in it was 9pm. My temperature was re-checked and found to be 38.9 so slightly more serious than I thought. We needed to have blood taken, and fortunately they were able to get a paediatric nurse to come and take blood from my port and leave the needle in for antibiotics etc, otherwise they would have had to have fitted a cannula which I wasn't too keen on, having gone to the hassle of having the port put in in the first place. 

It felt like it was taking ages for the bloodwork to come back, and as I clearly wouldn't be allowed to leave I sent my poor husband home to get some supper and some sleep.

Anyhow, the first thing they check is to see whether your neutrophil count is low. Neutrophils are, so I have learned, the most abundant white blood cells found in humans, therefore if your neutrophil count is low, it indicates that the immune system may be struggling to fight an infection, be it viral, or from a specific site such as my port.

We eventually got the blood results back and my neutrophil count was much lower than expected (0.1 I believe rather than between 2.5 - 7.5) and within two minutes I was whisked into a side room so I wasn't put at risk of catching more germs from any of my other inmates. 

I was extremely relieved to be moved, as it was quite distressing having to watch the very elderly lady in the bed opposite try and understand where she was, why she was ill, and why she couldn't go home.

I spent the rest of the night barely sleeping between doses of antibiotics and two hourly obs. I think that I was about 2am by the time I had a chest X-ray and was put back to bed, and I was up at six.

Saturday was largely uneventful other than a visit from the on duty oncologist who laughed and said I must be joking when I asked to go home!. To be honest, I was feeling pretty lethargic and shattered so the prospect of lying round in bed wasn't that unappealing. Bed at home, with my own creature comforts would of course be much better, but I was so tired that I was just relieved someone else would be making the decisions for me. A definite sign, for those that know me, that I wasn't well. Monday would be my release date, all going well.

I was prescribed a series of injections by the oncologist, to encourage my bone marrow to produce white blood cells more quickly. Extremely clever drugs. The only downside is that the jab has to go into my stomach, but it wasn't as bad as I feared.

I slept on and off most of the day - I was woken lots of times for obs and new drips of ab's etc, and the odd bit of food, which wasn't as bad as I feared it might be, except for the cardboard cornflakes at breakfast time.

My husband visited between 2 and 4, which was lovely - I definitely needed a hug. He was shattered too so whilst he would happily have come back again in the evening, we decided that he would be far far better to get some rest and come back again with the children on Sunday. I started to go downhill and get the shivers just before he left, and when my temperature was taken it was just under 40 degrees. Not good. So, a good dose of paracetamol, and I sat/lay with windows open, using cold flannels and a bowl of cold water to put my feet in to try and get my temperature down.

I think that it eventually broke around midnight, but I was back on very regular obs, not least because my blood pressure had dropped quite considerably. One of the nurses told me it took her about 2 minutes to wake me up which worried her a little, but I'm pretty sure that it was just because I was so so tired. I think the lowest it went down to was 75 over something or other - I'm normally around the 120 mark..... hey ho.

Sunday was fairly unremarkable. It started with a rise in temperature and the shivers first thing, but improved rather drastically after that as I was allowed out for a walk!! Admitedly I didn't go far as it was freezing outside, but I felt rather less like an inmate afterwards. My blood pressure went up a bit after this, which made everyone a bit more relaxed about me too!

I had a lovely visit from my husband and children just after lunch. I think the kids coped really really well. They only lasted about an hour, but in fairness other than play with the electric bed and look at the garden out of the window (which, to my great annoyance you can't actually get to), there was very little to do. There were no tears on leaving, which was a relief - I think that the promise of going to a playground on the way home helped considerably. I love the fact that my children are so easy to please!

Another boon to Sunday was the discovery of the free hospital wifi! My husband kindly brought my iPad up to the hospital, so I was finally able to make contact with the outside world which cheered me up no end.

Slighly annoyingly, the shivers that I'd had for a couple of hours started to get worse - not helped by the fact that it took nearly 3.5 hrs to get 2 paracetamol from the nurses....I know that they are very busy, and visiting times make it worse because family members often want updates on their loved ones, but still, it was a bit annoying... I eventually got dosed up, and my temperature went back down without too much hassle.

I had another visit from my husband in the evening which was really really nice. It isn't often that we get 2 hours to actually sit down and talk without interruptions! We went for a walk round the hospital as well, which helped to stretch my back out somewhat. I seem to have one of those bodies that complains if it doesn't do very much..... I usually walk between 2 and 4 miles a day, so having been in hospital for 2 days I was really starting to seize up.

After my husband left I got the predictable shivers etc so had another dose of paracetamol and got ready for bed, determined to get some sleep. 

I was woken for anti-biotics at 10pm by a lovely nurse that I hadn't met before. She was far more knowledgeable about the use of portacaths than the other nurses, and confirmed that I had been right to keep asking about a Heparin flush for the port -  this is used to stop the blood clotting and blocking it up. She confirmed that she would order a dose, which she would give at my next set of obs, so around midnight.

Midnight duly arrived, and not only did I get the Heparin, but I was also told that I was going to be moved to another ward, which is all side rooms and often used for private patients! I'm not sure who I had been nice to to get this treatment, but on the basis I didn't know how much longer I would have to stay in, as I was still Neutropenic, it sounded great to me. 

I think that I was moved down by about 2am, quickly settled in, had a dose of paracetamol, and was advised I'd be left alone until 6am. Bliss! 

It was a huge relief to have been moved - for the silence if nothing else. No dementia patients screaming, and far less noise from the almost constant sound of the nurses being bleeped. I think I slept quite well, other than having to sweat through yet another fever..... I was fine by morning and felt much more human having finally had a decent period of unbroken sleep. 

You know you've got kids when the prospect of 4 hrs unbroken sleep sounds like bliss!!!

After the normal obs, shower, breakfast there wasn't a lot to do other than wait for someone to tell me whether I would be free to go or not! I actually ended up with a visit from not only the duty oncologist, but my own oncologist who was really rather jolly and had clearly just popped in for a chat! Bearing in mind how stand-offish he was to start with, I was particularly surprised to get a hug and a kiss! Everyone, I'm pleased to say, confirmed that my Neutrophil levels were now at an acceptable level so I would be allowed home once I'd collected all my drugs. What a fab result!!

I had a great visit from two friends in the morning too, which was lovely. I also managed a walk around the outside of the entire hospital which was wonderful in bright sunshine, albeit with a bracing wind.

My husband arrived at about 2.30 and we sat and played scrabble whilst waiting for my drug delivery and for my port fitting to be removed. Rather annoyingly and I suppose, predictably, my temperature started to go up and the shivers returned just as we were thinking about packing up, so I had to go down the whole obs and paracetamol route again whilst waiting for the on call doctor. Fortunately, he decided that I was capable of reacting to whatever my body decides to throw at me and agreed that I could go home anyway, on the promise that I would ring for advice if needed and return if required. Phew! A lucky escape.

We quickly packed up and headed off to pick two very excited children up from nursery. My eldest had been heard complaining to her brother that "it isn't fair, I want mummy to come home now", and on Monday morning, the youngest was wandering around asking "where's mummy?". Very gratifying - it's always nice to be missed!

All in all, despite ranging from being colder than a penguin in the Antarctic and hotter than Hades, my hospital stay wasn't that bad, though I expect that I shall sleep for most of the week. I am incredibly pleased with my port. It made life extremely bearable. I have had a cannula in before, and trying to get dressed, shower etc with those attached to you is much harder than with a needle/fitting and tube in the port. It also meant that every time I had to have blood taken there was no hassle - just a quick job with a syringe.

I have to say that I felt a fraud at times for being in there - it has been a short sharp reminder that however poorly I think I might be, there are so many others who are a lot worse off than me. I've been counting my blessings again, and there are so very many of them I feel extremely blessed. 

No doubt I'll be here whinging about how tough it is at some point, but for the moment, I shall enjoy the bliss of being at home with my family, where I belong.