Today I saw the Doc again. And as always it was a real pleasure. I do love this man. Officially, it was to review my lacy bones. My DEXA scan of a few weeks ago showed that all is stable – neither worse nor better, which given the bone leaching properties of Aromatase Inhibitors is good news indeed.
Of course, a general review was undertaken and on being asked how I was, I promptly burst into tears. Not my finest moment. I have been really struggling with side effects from the Exemestane. My sleep is rubbish. I am woken several times a night by muscle cramps and joint pain. The joint pain is so bad that there are days when it is hard to physically get out of bed. Kneeling down is something I have been avoiding as much as possible because hauling myself back up again is extremely tricky. I am hideously weepy (see above for classic example!) and the fatigue is overwhelming much of the time. And everything has dried up. And I mean EVERYTHING! My skin, eyes (now need drops), vagina (thinking of renaming that the Sahara).
I have had some success in tackling many of these symptoms myself. My joint pain has improved since I’ve been taking Glucosamine 1500mg and Chondrointin-Sulphate 1200mg a day based on this study. Thanks to Liz O’Riordan’s blog, I have now been prescribed Yes Vaginal Moisturiser which is a massive help. However, despite this, things have remained pretty grim. Since arriving back in our land based home, It has felt like I am living something of a half life, with fatigue, lack of sleep and joint pain controlling everything I do.
The Doc went through everything. Having tackled my symptoms we then looked at my prognosis which given that I have had both surgery and chemotherapy is pretty good, despite an Oncotype Score of 28 and a grade 3 tumour on biopsy. The hormonal therapy does make a difference, but there comes a point when quality of life has to be taken into consideration. But I do not know how you say no to something that has a proven ability to elongate your life.
For now, the Doc has suggested I take a break. My hormone therapy is to be packed up until after Christmas in the hope that I will get some respite from the relentlessness of hideosity I have been experiencing. I will then see him in early January and will start on Tamoxifen, with a side order of Venlafaxine or Amitriptyline if necessary.
My date with the poison always seems to steal upon me in a rush. You could be forgiven for thinking I did not want it to happen. Actually, for the days leading up to it I am assaulted by all manner of conflicting emotions: I do not want this treatment; I do want this treatment; I do not want to be ill again; I do want to cross off one more; I can not wait for it to be over; I am scared of it not working; I want to stop being treated; I want the reassurance of being treated. I could go on but you get the idea.
On the upside, I am getting to know the staff at my unit well enough to call many of them by name. They appear not to have come across the late Kate Granger’s Hello, My Name Is campaign. As the staff do not introduce themselves and their name badges are invariably covered by aprons, it has taken some detective work to sort them out. However, it IS nice being able to joke around with them by name. And they are remembering me too. The loon in the lippy is hard to forget, it seems! I really want to tell them about the not introducing themselves thing and the impact such a small thing has, but I do not want it to come across as a complaint that undermines all the many good things they have done. I know well how the NHS can handle such ‘complaints’ and am keen to avoid something that is not my intention.
Back to today. I feel rubbish. All the usual but just to shake me out of any kind of complacency I have excruciatingly achy knees. I have no idea what that is all about but I currently have a hot water bottle underneath them and my vein arm heat pad on top of them. Between these measures and the ibuprofen I have taken, I can just about cope. I continue to drink masses in case flushing the toxins out will help. Who knows?
The general administration was trouble free which is seriously good news. It is no secret that I have excellent reasons for being terrified of my veins packing up. This time, along with all the other things I have been doing, I tried drinking miso soup last night and again this morning. I picked up the tip here and decided I had nothing to lose. Of course, that was before I tasted it. As I was downing it this morning, I was hoping it would make not the slightest bit of difference because it is truly disgusting. Especially for breakfast. However, having never been blessed in the vein department, I was honestly gobsmacked at the ease with which cannulation happened on this occasion. I suspected the miso was having an effect as I had not peed as much following the consumption of the medium sized lake. By the time I got to vein inspection time they were standing to attention on the back of my hand which was quite the novelty for me. I have never been able to see them before so this was astounding. Un-named poison nurse declared them beautiful. I was so proud.
Now I am off to nurse my shakes, my aches and general rubbishness in front of the tele. Until I can go to bed #wontbelong
I have been taking my decision to doing more walking seriously. And much to the Captain’s dismay, no leads have been involved. It has helped that the weather has been so good. Last week we managed to visit not one but two National Trust properties and chalked up over 6000 steps at each. Given that seven days previously a mere 250 steps left me gasping for breath, I was pretty chuffed with this. True, I needed a rest day after these performances which feels a bit pathetic. But that is just how it is.
Today, we went blackberry picking. Being something of a forager, this is as close to my day job as I get. And it was wonderful. Blue skies, slight breeze and fat jewel-like berries glistening in the sunshine. We picked beside the canal so it really was a little piece of normality. The only downside was the need to pick carefully. Normally my hands look like they have been shredded. And I spend the evening picking out prickles that have embedded themselves in my skin. Today I was very cautious. The last thing I need is a blackberry acquired infection.
I am shocked by the fatigue that is continuing to creep up on me. It is not much fun having it poleaxe me on a regular basis. Particularly as it seems to disrupt my sleep too. Yeah, that makes no sense to me either. On the whole, I have felt well for more days this cycle than last I think. My first week was rough, but thereafter it has really just been exhaustion that has been the major issue. I do struggle with sore eyes, sweating/hot flushes, indigestion and sore veins but these too will pass.
I am not sorry THAT week is over. For reasons that I do not completely understand this week has been, erm, interesting.
The initial side effects were much like they have been all along. Nausea still under control, phew. But the rest – the aches, the sweating, the hot flushes, indigestion, bloating, general unwellness – they were all magnified. And as for the fatigue. Oh. My. There was a point on Sunday when I was eating lunch and my jaw was just too tired to keep working. And I was eating soup.
However, what has been a lot more interesting has been my rate of recovery. This time in cycle 2 I was still feeling pretty rubbish. Currently I am definitely tired. I fall asleep a lot. I am low on stamina. But I made it to the Becoming Bendy class yesterday. And generally I feel pretty well.
On the whole I would say this is a good thing. I’ll take more intense side effects for a shorter period. Of course, it could all change next month, but for now, this is good.