Jill's Book Cafe

Just what the Doctor ordered … and some things I wish she hadn’t.

 

SV201194
The perfect place for a lie-in and a brew –  the view from the bedroom window

I’m delighted to say that our holiday was a perfect 2 weeks of rest and relaxation and just what we both needed before the onset of more challenging treatments. Our rented house was overlooking the bay in Glandore on the South West Coast of Ireland. The view from the house was enough to brighten anyone’s day. When the weather was fine, it was beautiful and when the weather was less so, it was dramatic.

While it did have wi-fi (accessible if I sat at a certain place near the kitchen rammed up against the door) it was not conducive to interacting and/or spending long periods browsing. Consequently social media was to some degree on the back burner. This certainly helped improve my ability to actually get some reading done. Having decided to put all review books on the back burner for the duration of the holiday, I managed to read the grand total of 12 books. Given my recent output that was nothing short of a minor miracle and serves to prove that part of the problem has been less my medical circumstances and more the pressure of reviews and pre-occupation with social media So lessons to be learned I think.

Surgery wise everything was appearing to heal nicely, until a couple of days into the holiday my affected boob started to go all red and mottled underneath. Googling the possible cause was a big mistake, worst case scenario was sepsis, otherwise at best it was an infection that needed antibiotics and a trip to the doctors asap. However common sense prevailed as I figured in either case there would be some other signs, so in the absence of swelling, hardening, pain or fever I figured I’d live another day to see how things panned out. Of course what it turned out to be was a hideous bruise that continued to ‘mature’ over the course of the next week, but who would have expected it to appear 2 weeks after surgery, with no other previous bruising having been seen – not me. I’m beginning to see a pattern emerging with some of this process in that instead of scaring people to death with all the symptoms that might not appear, why can’t someone tell you what is commonly likely to happen. A brief warning of all the strange tweaks, twinges and ‘shocks’ that are normal as the nerves begin to knit would also have been useful. As would the knowledge that it is normal to feel as if your nipple is attached to elastic and some bugger is pulling it from the inside. That and the fact that it seems to have taken on a sensitivity never previously experienced.

Coinciding with sepsis-gate, my armpits decided to take umbrage at the new ‘safe’ deodorant and became exceedingly sore and itchy. So the search was on for an alternative.  Thankfully, the health food shop in Ballydehob came up trumps with a Salt of the Earth deodorant spray, it worked, it didn’t sting and is still doing its job without any problems – hurray.

While away, I also acquired some perfect accompaniments to join me on my chemo journey. Some lovely fluffy socks and a fabulous warm cuddly blanket. Who knew that bed socks at 3 pairs for 3 euros would send me into ecstasy – my priorities are definitely changing!

SV201287
Me with my not so little superstar

Sadly the two weeks came to an end and I’d like to have it on record that my OH was a star while we were away. I didn’t have to do a thing as he took on all cooking, cleaning (not too much) and washing up duties as well as all the driving. So thank you – I knew those 30 years of training would pay off one day. Of course coming home meant that the results we’d been trying not to think about were only a couple of days away.

Monday arrived and not sure how we got any work done in the morning, but we managed to look occupied even if we were pre-occupied. A reasonably quick drive to the hospital followed by the inevitable but not too long a wait saw us greeted by my Breast Care Nurse ahead of joining my surgeon. I won’t drag this out, I’m delighted to say that the results were the best we could hope for. The margins on the tumour were clear and neither of the 2 lymph nodes that were removed showed any signs of cancer – yippee. So now onto the next stage.

My first appointment with my oncologist was set for Thursday and we set off for The Christie trying to second guess what the Manchester rush hour traffic would be like. As it happens on this occasion better that we anticipated. This was just as well as it transpired before I saw Dr H I was scheduled for blood tests. One of my favourite things – NOT.  I was immediately ticked off for not drinking water and being de-hydrated as this makes it harder to find a juicy vein. In my case it transpired it was impossible and so the nurse resorted to using the back of my hand – I’m still sporting the dirty great bruise that resulted. Yet another example I have to say of not being informed about what will happen. No mention of blood tests (or indeed the ECG that also followed) and even if I had been warned, no-one had ever pointed out (what might be obvious to some) the direct correlation between water and veins. I am now drinking water for England ahead of the needlefest that takes place next week.

I have to say my oncologist was very personable and not stuffy, which was a good start. As she proceeded to go through by proposed treatment I could feel myself deflating inside at the prospect. Once again a list of side effects you wouldn’t wish on your worst enemy and of course as ever the worst case scenario was heart failure – that’s all good then. So it appears my regime is 3 cycles of Epirubicin and Cyclophosphamide followed by 3 cycles of Docetaxel and the start of 18 cycles of Herceptin. As if that wasn’t enough once the chemo has finished the Radiotherapy kicks in – can’t wait! I did have an inner giggle when Dr H asked to look at my breast to check that things were healing OK as my OH was still in the room. I’m well aware of an apparently common male fantasy of girl on girl action and couldn’t help thinking this wouldn’t have been what he had in mind had it been one of his. (I should add I didn’t ask and I don’t particularly want to know).

So with the formalities out-of-the-way, that was it. We were left to ponder the coming months and how we were going to cope with juggling work and treatments (I work with my OH who is self-employed). A visit to the The Christie was also the opportunity to get fixed up with my wig voucher – yes, another thing to look forward to – I will lose my hair. I’ve also been warned that it’s not guaranteed to grow back perfectly and might be patchy. We had broached the subject of a cold cap to try to allay this possibility but I’d ruled out that option several weeks ago. I already suffer from headaches, can get brain freeze from eating ice-cream and a headache from walking in a cold wind.  The idea of sitting in a freezing cap for 45 minutes before, during and after treatment was a non starter for me and OH is fully supportive. As he keeps telling me, I am not my hair or my nails (yes they might fall off too), my eyebrows or my eyelashes – where did I find him?

We also took the chance to pop in to the wonderful Maggie’s Centre which offers a little haven of tranquility or chatty support depending on what you need. We were happy to chat to G a volunteer whose partner is at the end of the process I’m just starting. It was good for my OH to hear that it isn’t all doom and gloom, and that life and work still carry on, just not always at 100%. Mind you he did let drop she was a bit of a gym bunny, so that does give her a bit of a head start on my rather more couch potato approach to life of late. I’d love to visit again as they have some great courses and presentations (not to mention free tea and Roses chocolates – yum) – I’ll need to bribe someone to drive me in.

So we’re nearly up to date, this week only involved 2 hospital/doctor visits and I managed to get these both out-of-the-way on the same day and thankfully locally. A quick trip to my local hospital for an Echocardiogram. The Herceptin and chemo can weaken heart muscles so I need monitoring before we start and regularly throughout the treatment. I guess whatever else happens I’ll know everything else is working perfectly by the time I’ve been tested each step of the way. Finally an exceedingly quick jab at my local surgery for the Flu Vaccine and that’s me set up for next week when the fun and games really begin.

 


 

 

67 comments

  3. Keep drinking that water! Recent experience with a family member has shown how important this is as not drinking enough coupled with chemo has not helped low blood pressure resulting in a couple of hospital stays following scary passing out episodes! Your holiday sounded great and I love your comment about thirty years of training! 😁

    Liked by 1 person

    Reply

  5. Aww Jill, you know my love, massive hugs and my naughty humour are with you every single day. After reading this I can now offer another one of my services….
    Eyebrow pencilling in..!
    After losing mine a few years ago, I’m now an expert.
    If you want to look happy, sad, surprised, angry, puzzled or indifferent, I have perfected eyebrows to suit every occasion with my trusty Wunderbrow…. although after getting distracted by a rather dashing UPS man at the front door on Wednesday, I failed to return to my morning beauty regime and ended up doing the school run with just one eyebrow!
    Seriously, sending you more love, hugs and huge admiration, I think you are fast becoming my hero!
    Gina x

    Liked by 3 people

    Reply

  6. Thanks for the update Jill. I did check your blog yesterday to see if I’d missed one so this one is appreciated.
    Positive news about the lymph glands.
    12 books! Sounds as if you had a lovely relaxing time.

    Caryl x

    Liked by 1 person

    Reply

  8. Have been thinking about you this last week wondering how you’ve been getting on my lovely. A huge hug for you & the husband! He sounds like he’s been a wee trouper, that training has most definitely paid off haha
    I’m another that can confirm about water & veins, however despite drinking a volume similar to the Atlantic Ocean it makes no bloody difference with my veins – they just don’t want to be stabbed with a needle & I’d like to keep my own blood thank you very much 😂 our practice nurses dread me coming for bloods!

    Are you going for a normal wig or comedy one? Personally I think you’d rock a purple Afro 👍

    Keep smiling my lovely, you’re a bloody strong fighter & im so proud of you xxxxx

    Liked by 1 person

    Reply

    • Awww thanks Kate. I hate needles (and it’s not getting easier after last weeks attack) so anything that might help I’m happy to try. I already drink my body weight in tea everyday so not sure how I can be dehydrated but hey-ho. Not sure with the wig – certainly won’t be opting for my own colour though – mottled grey is not a good look. I’m not averse to something daft except other people will have to be seen with me. Still Ronald MacDonald does OK! Thanks for your support it makes me feel less like a raving loony sharing all this stuff. xx

      Liked by 1 person

      Reply

  9. Jill, I am so pleased that your results were so encouraging. The treatment ahead must seem daunting at times, but you are being so practical about it and I’m sure your lovely sense of humour will help … as will your OH, who sounds wonderful! I’m glad you enjoyed your holiday and the social media break 🙂

    Liked by 1 person

    Reply

  11. Wonderful post Jill. You are steadily debunking so many myths and fears for others going through teh same process. Steve’s armpit still gives him problems following the lymph node removal after two years and he feels bruised inside.
    I hope all goes well for you over the coming months and weeks and am thikinng of you and sending positive thoughts daily. x

    Liked by 1 person

    Reply

  12. What a fantastic post. The positivity will definitely help. And putting your fingers in iced water during chemo will help if you start to get peripheral neuropathy with Docetaxel .. if your nails start to lift, Vicks Vapour Rub (and those dinky white gloves) overnight works wonders. It’s a bit DIY and Heath Robinson, but it worked for the OH who had ten goes at it. Good luck and keep drinking … water, obvs! x

    Liked by 1 person

    Reply

      • I think the nurses thought I was being very mean, topping up his iced water! But he had chemo for seven months and his hands were fine. You never think you’ll get to the other side, but you do. There’s no cure for his cancer, but onwards and upwards, and relentlessly positive seems to make things so much easier. Everything crossed for you, you’ll meet some amazing people along the way xx

        Like

      • Sorry to hear that Jan but I think positivity does help neutralize things. One things for sure being negative doesn’t improve the situation. I’m already discovering how supportive and helpful people can be and as I have to go through this process then it would be nice to take something good from it xx

        Like

  13. Lovely to hear from you, Jill. I was just thinking about you yesterday and wondering how you were getting on.

    As always your trademark humour had me smiling but you also brought tears to my eyes with your stoicism regarding hair etc. You’re an inspiration.

    Love and best wishes for the next stage.

    Liked by 1 person

    Reply

  15. Just wanted to say I’m still thinking of you, I hope things go okay when you start your treatment. It sounds like your OH is being a total star – glad all the training of him has paid off! 😉 I laughed when you said about the doctor needing to see your boob. My husband always takes me to my medical appointments and I was once asked to take my top off so they could look at my spine and the nurse suddenly yelped and said that she hoped the man with me was my husband and not the taxi driver! Apparently she has had that happen before! Can you imagine?! Eeeek!
    I’d recommend buying a stretchy cotton cap to sleep in if you do lose your hair – my mum swore by hers as she couldn’t believe how cold she got at night before I bought her one. Also soft cotton scarves for the times when you might not want to wear a wig – my mum thought she’d hate scarves but she loved them because they were so soft on her skin and kept her warm.
    Sending lots of love and hugs xxx
    PS. Just let me know if you need any books, I’m always happy to send some your way. 🙂 x

    Liked by 1 person

    Reply

    • Thanks Hayley – the idea of being examined in front of the taxi driver is hilarious – unless it happened to you! A cotton cap is on my ever growing shopping list and thankfully I already have enough scarves to stock a shop – I knew they’d all come in handy one day. I’ve just been for what is probably my last haircut which felt a bit strange but never mind. If I’m honest I’m more bothered about losing my nails which are always long, though I’ve heard black nail varnish is the way to go – who knew!! I really appreciate your kind offer of books – should I run out I’ll be in touch xx

      Like

      Reply

  16. So good to hear from you Jill. That view is beautiful, hope you have booked to go back! Great news on the clear margins and well behaved lymph nodes.
    I’m so with you on the lack of info about expected occurrences .. Dr. Google is certainly not my friend.
    Wishing you lots of love & patience for your next steps. I have only heard good things about The Christie & chemo nurses are often the best. My only advice is be prepared for the unexpected & savour the ‘good’ days .. totally agree on fluffy socks being the highlight of the day. How we used to take tings for granted eh!?
    Always here if you need an ear .. xxx

    Liked by 1 person

    Reply

    • Thanks Ali, we’d definitely go back – the good news is it wasn’t expensive either. It’s comforting to hear so many good things about The Christie, I did have a choice and could also have gone to North Staffs or possibly Clatterbridge but not only was The Christie marginally the nearest, it does have a great reputation and their charity does amazing things. Under NHS rules I wouldn’t have been eligible for a wig voucher as we’re not on benefits, though that doesn’t mean we have money to throw around on wigs. I was reconciled to the fact I’d be wearing hats and scarves until my first visit to The Christie when they told me I could have a wig because The Christie charity covers the cost so that everyone who is likely to lose their hair can have a wig. Not sure about an ear, can you do nails lol xxx

      Liked by 1 person

      Reply

      • That’s brilliant about the wig being funded by the charity. At least you have an option then. I don’t know if The Christie also do massage, aromatherapy, reiki etc like The Royal Marsden do. I’ve never been ‘into’ that but it can be such a treat if you want a boost. On one occasion I was so poorly (after surgery) just having a lovely lady give my hands a massage with nice scented oils was bliss. I’m totally with you on the cold cap I think that would give me worse brain freeze than I already have lol.
        I’m due a full bone scan on Monday because they have found ‘something’ in my thigh, so watch this space I’m likely to be joining you on your journey!
        Take care xxx

        Liked by 1 person

      • Aww Ali, while I’d love your company I’d rather it wasn’t under those circumstances. I’d love there to be an innocent explanation but I’ll be thinking of you – let me know how you get on. You can always DM me via Twitter. Sending hugs xx

        Liked by 1 person

  19. You are doing an amazing job of looking at the funny side of what is clearly not a funny experience. Great news on those lymph nodes.
    I can’t agree more with you about the importance of being told everything in advance – i know the medics hold back because they think people can’t cope with too much info but I would rather know than be scared when something seems to be going wrong. I can highly recommend the MacMillan website – its written in a very practical, easy to understand way – even better is their helpline. You either get put through to someone who can answer your question or if they are busy, they will commit to ringing you back and they do. Again its clear helpful advice – I used them for several queries ranging from medical things like ‘what does this measurement mean from my results’ to ‘how long after chemo do I have to wait before I can get my highlights done’.

    Liked by 1 person

    Reply

    • That’s my girl Karen, highlights are very important 🙂 I’ve just had what is probably my last haircut today which is weird but had a very fun/helpful conversation with my hairdresser about colour choices for my wig – I’m not choosing my own mottled grey!. I’ve used the MacMillan web site and for me The Breast Cancer Care site is also a great resource. Both myself and my OH have fund raised for both in the past so I have a great respect for them.

      Liked by 1 person

      Reply

  21. Dear Jill, your Ireland respite was indeed a haven of pure heaven, and the pictures and descriptions were incredibly wonderful. I am so very glad you shared, too. You and your husband look so happy together.
    I know you are now approaching a different journey, and you may have just made the path easier by writing about all that happened and what you are now facing over time, and I am going to say this, dearest Jill, four of my very close friends underwent the treatments; three had mastectomies, one had a lumpectomy, and everyone’s experience has been different. Therefore, you will discover that you are unique and will have your own tales to tell, but take it one step at a time. You have an amazing support system with your husband and medical team, and your online friends, as well. I am sending angels to watch over you!

    Liked by 1 person

    Reply

    • Many thanks for your support and best wishes, I’m happy to accept angels too xx Sadly I’ve also had close friends go through similar and while most are doing well, not all came out the other side and some are unfortunately battling for a second time. While I keep my posts light and tongue in cheek I don’t want people to think I’m not aware of how serious this is and will get, or worse still that I’m trivialising it. This is my way of coping right now, and it does help me try and see the funny side of what could be a depressing process if I let it. I’m really appreciative that so many people are supporting me because that is a big help too. xx

      Liked by 1 person

      Reply

  25. This is so fascinating to read. Whilst I wouldn’t wish what you are going through on anyone, it is something I know so little about, even though it has affected those close to me. Thank you for sharing and fingers crossed as your treatment continues.

    Liked by 1 person

    Reply

      • I hope by the time you read this you have found a remedy that works. Google throws up some ridiculous suggestions. When they read you the awful list of side effects from the Chemo the least worrying I thought was constipation but following Moms first treatment that has turned out to be by far the worst one, she has been really poorly with it and tried everything as you have. I think the only thing that kept her out of hospital with it was accidentally overdosing on the lactilose that the oncologist prescribed. If she had £1 for every well meaning gift of ginger biscuits she would be rich by now and they don’t seem to do much either. Hope you have a better night tonight x

        Like

      • I have to agree, constipation seemed doable – but there’s constipation and constipation as your Mum can testify to. It’s the trying to second guess symptoms which also complicates matters. I’ve been taking the anti-sickness pills for the nausea, completely unaware that the nausea could be caused by the constipation, and of course the main side effect of the pills is constipation. One big vicious circle. I have to admit that Jacobs cream crackers were far more beneficial than ginger biscuits for me, but after the Dulcolax worked it’s magic I’m hoping the corner has been turned. The way forward now is making sure that doesn’t happen again, so prunes are def on the menu. My BC Nurse also recommended orange juice to move things which at least isn’t unpleasant if it doesn’t work and counts as a 5 a day so result! I think both your mum and I are on a steep learning curve, we just need to keep smiling, even if it is occasionally through gritted teeth. xx

        Like

Leave a Reply

Please log in using one of these methods to post your comment:

Gravatar
WordPress.com Logo

You are commenting using your WordPress.com account. ( Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. ( Log Out /  Change )

Cancel

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.