Returning to normal…well almost!

It has been a while since my last entry as the last few months have been a time of gradual change, and not that exciting to read about!

I was a bit of a slow developer and the full effects of my radiotherapy didn’t kick in until three to four weeks after the end of my treatment, and I ended up with a lovely red rhomboid shape mapping the exact pattern of the linear accelerator’s path!. I wish I had shares in E45, as I have got through so many tubs of it!. But it was worth the investment as my oncologist was surprised that my skin had recovered this well at this time. And I am glad to say that my body also continues to heal from the surgery, and the “curled up T shirt” feeling I used to get when I lifted my arms up has finally gone. Also my strength and stamina are gradually returning albeit slowly. You may be pleased to hear that the Omega 3 fish oil also helped my left foot, and I can now feel all my toes!

I can now also manage the four flights of stairs to the staff room at work, even though I am puffing like a steam train by the time I get to the top. And I managed to cut my own toenails for the first time in 4 months, little goals, but good ones!

It won’t surprise those that know my love of planning, to hear that I had a plan for my return to work. And one of the items on this list was to attend the course called “Moving Forward” run by

https://www.breastcancercare.org.uk/

It is specifically designed for those returning to work after long periods of treatment and I found it informative and uplifting.

One of the subjects covered which was of particular interest to me was lymphoedema. (for the ease of two-fingered typing I will now abbreviate lymphoedema to LD!). The talk we had from a member of the local LD team was very informative. She explained that everyone’s lymphatic system is different, and none of us know how close to capacity our systems are running at. This means that one person who has had very minor surgery may go on to develop LD very quickly and another who has had quite major surgery doesn’t develop it at all! So her advice was to do all we could to prevent LD but not to worry, as if we do develop it, caught in the early stages it is manageable. She also recommended measuring the limb that is likely to be affected, now, so that we would know if it was swelling. I thought this was an excellent idea and mine have been duly noted! But sadly for me, the prevention of LD includes the cessation of my corset wearing…a dark day. But I have decided to go with waistcoats instead and will be back on eBay with a new search!. It also gives me more reason to do lots of my clothing adaptations.

We also heard a talk from an oncologist with decades of experience that left me feeling much more positive. He wanted us all, now we had completed our treatment to go out and enjoy life, as we deserved it, and not to spend it worrying about what may or may not happen. He also said that even if our cancer was to return it is now treated much like a chronic illness and many people live for years with it, by just dealing with the symptoms as they arise. I liked this viewpoint, it was very reassuring.

We were also given an article to read by Peter Harvey, called “After the treatment finishes then what?” See the link below:-

http://www.cancercounselling.org.uk/Peter%20Harvey%20-%20After%20the%20Treatment%20Finishes%20then%20What.pdf?openElement

This is definitely worth a read, and to print off and give to your employer before or on your return to work. It is useful because it helps the person that has been through the treatment not to beat themselves up when they feel tired or emotional, and helps others to understand the physical and psychological effects that cancer treatment has.

One vital part of my return to work plan was to get my hair done! Obviously there wasn’t that much to work with, but as my new hair is naturally forming a “fauxhawk” I decided to go with the flow and am leaving it long on the top and very short on the sides. I couldn’t leave it it’s natural colour (even though I was very glad to see so little grey) and I am now sporting a warming burgundy bonce! I have a feeling that as my style develops the colour may become more vibrant…I have always fancied blue!

I am now back at work, and the company I work for allows a gradual 6 week return to work to build up my working hours, and even though I had thought my plan was gradual I have found that I was expecting far too much too soon and have adapted my plan somewhat!. The fatigue manifests itself in two ways for me, either a general overwhelming tiredness, or I am doing fine then suddenly hit a “ brick wall” and feel that I cannot go on!.

Luckily I work with an amazing group of people who gave me such a wonderful welcome back and are continuing to support me in every way they can.

This week I went for a fitting for my prosthetic boobs, they are so lifelike, they wobble and feel like real breasts when you handle them. Much more realistic than my cumfies. It showed just how much women are used to carrying the weight of their breasts, as when I carried them home they made my arm ache, but in a bra I didn’t notice the weight at all!

My only problem is storage, as they are massive (not wanting to boast) and need to be kept in special boxes that are 8x8x5 inches each! They definitely won’t fit in my knitted knockers box!

Again I have to give thanks for the NHS, as to buy these breasts would have cost approximately £300, a great deal of money.

So for now my story is done. I am today, free of disease, my body is well on the way to recovery and I am back at work. It has been one hell of a year, with huge challenges both physically and mentally. But strangely it has been a good year too, as it has shown me how much I am loved and I have received many random acts of kindness from friends and strangers that have touched me deeply. I don’t know what the future holds, but I am still here and I intend to enjoy that fact every day!

I have really enjoyed writing this blog , thank you for reading it and I may well be back with a new topic in the future! So watch this space…

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To Radiotherapy and beyond!

Walking into the radiotherapy treatment room is a bit like walking onto a sci-fi set. There is an adjustable bed in the centre with various attachments, a number of computer monitors on stalks on the walls, lots of lights and a camera set in the ceiling and finally the star of the show…the Linear Accelerator!

Having removed the necessary items of clothing and put my boobs on the chair, I climbed onto the bed. My special attachment was a stirrup for my left arm to keep it up and out of the way during treatment. It was much like those used in other tests us ladies have to undertake!

Once I was settled the radiographers then used my tattoo markers to line me up on the bed. The general lights were then dimmed and green ones now generated a grid across my body. One of the radiographers called out the required grid settings while the other checked that this matched where I was on the bed. (As the room was quite cold they also kindly draped my cardigan over the half of my body that was not being treated, to keep me warm). Once they were happy that I was correctly positioned they left the room, but I was constantly observed by cameras in case I was to do something silly like fall off of the bed!

Things then became even more like the sick bay on the starship Enterprise. The very large, circular, stainless steel head of the linear accelerator moves around to it’s first position and delivers it’s rays with an ominous hum, whirrs and then moves into the next, and this dance continues until the treatment cycle is complete. For me the last couple were delivered from under the bed so that they could get right up into my armpit! In my head I could see any remaining cancer cells splatting like paint-ball pellets, so I smiled all the way through the procedure!

The treatment only takes a few minutes and is not at all painful. I was however, advised to use E45 cream three times a day, drink two litres of water daily and try not to wear tight clothing that would rub on the treatment area. This is all to help the skin to cope with the treatment as it can suffer quite badly. Also to keep up my daily exercises as everything was likely to get very tight again.

Being the good patient that I am I did all this and it paid off, as on my last appointment I was told that my skin was less inflamed than they would expect at that stage. The worst effects actually happen in the 7-10 days after the end of treatment but should completely clear within six weeks.

Halfway through my three week course I was given a review, which for me was a wonderful opportunity to talk to someone about all the treatment I had had. Yet again I was reassured, given confidence and have another person I can ring at any time with concerns.

I need to take a moment here to say how wonderful all the staff have been throughout all my treatments and appointments. I have been made to feel like they all truly care about how I am and want to do their best to help me. With our NHS struggling with a lack of facilities and heavy workloads for all the staff, I really appreciated them taking time to care and can’t praise them all highly enough!

Oh and I never thought I would be so happy to have bingo wings, but as I am at a high risk of developing lymphoedema, due to my lack of lymph nodes, all the time those wings are wobbling I know I am still ok!

NB: I have contacted the lovely people from Knitted Knockers and they were very happy for me to include a link to their site.

http://www.knittedknockers.org/

Healing and tattooing

The past few weeks have taught me that this healing lark is a slow process, and to look for weekly improvements, rather than daily. However, when I saw my nurse four weeks after surgery she was very pleased with my progress and I am set to start my radiotherapy as planned.

Our local train service is suffering with a lot of disruption at the moment, but I very nearly gave some long-suffering commuters a day to remember!

I have become so accustomed to stripping to the waist whenever a nurse or doctor comes into the room, that during this check up I had almost everything off, when both the nurse and I suddenly realised that the blinds were open, and we were looking into the faces of a train full of passengers that had pulled up on the track behind the clinic! Cue a frantic dash by both of us for the blind cords, me still with my top off! Then we just fell into the chairs laughing, thinking of a Reggie Perrin type going home and telling a long suffering spouse about his unusual train journey.

Also during this visit I swapped my bra for a different size and was delighted that the new one is black! The reason for this change of size is because following surgery I have developed wings! Sadly these are not the angelic feathered variety, but are due to body tissue that was held in place by my breasts migrating to my armpits (much as my breasts used to do when I laid down).

In this last week I have worn my “cumfies” for the first time and it felt quite strange to have breasts again. I have my crumb collecting shelf back, and am aware that as they are so synthetic that I will have to be careful that I don’t do a “Mrs Doubtfire” when I am cooking!

A friend told me about a wonderful charity called “Knitted Knockers” that runs in both the UK and USA. Lovely volunteers knit breasts for women that have had a mastectomy, and they even have optional nipples! I now have a pair ( black of course) and have bought a wooden box to keep them in.

My first trip out with my “cumfies” was to my measuring appointment, ready to start my radiotherapy. At this appointment a CT scan is done to measure where they want the treatment area to be, and once that is decided a couple of dots are tattooed, so that when I go for my daily treatments they just have to line up the dots rather than measure me every time.

As the technician was about to warn me that there would be a sharp scratch as she did the tattoos, her eyes alighted on my two tattooed half sleeves and she said “but I guess you will be ok with that!”.

This visit also showed the importance of doing my daily exercises, as if I hadn’t been able to get my arm up and behind my head my treatment would have been delayed. I start radiotherapy next week and if all goes according to plan it will finish the day before Christmas Eve, perfect timing!

Rest & Recuperation

The last couple of weeks have been spent learning some special skills and how to adapt to being post surgery. This is because along with a certain level of discomfort I have what feels like a tight iron bar across my chest which restricts my movement.

The most important skill in the early days is the “Zen art of cushion placement”. As the strategic placing of various shaped and sized cushions is vital for a comfortable night’s sleep.

The second skill is use of a “grasper” ( you know, the metal rod with a claw at the end that you can use like a litter picker, to pick things up off the floor). Mine was invaluable, if only so that I could pick my mail up and read it. But one word of warning…do not drop your grasper to the floor as you then don’t have a grasper to pick it up with!

I also had to go around the flat and ask for all the items I might need to be brought down from up high, or up from down low so that I could reach them. This is when I realised how little worktop space I had in my kitchen! And in the kitchen was I think my biggest frustration so far. This was having a pack of sausage rolls to eat for lunch and then discovering that my oven door is so stiff that I couldn’t open it to cook them! Cheese sandwich is not a satisfactory substitute!

Another realisation was that I cannot put my tights on! As I am someone that does not own a pair of trousers this necessitated a quick online shopping expedition to buy some, as it’s pretty cold in November with bare legs!

I would also recommend in these early weeks not get hiccups…it’s not pleasant!

But on a positive note some of the after effects of chemotherapy are now starting to ease. I can’t tell you how excited I was to discover nose hair! Of course my eyebrows are growing back in the one place I don’t want them, and so as soon as they are long enough they will be plucked! And I now have enough hair to cast a shadow on my scalp and actually had some “bed hair” going on the other morning. The bad part of my hair returning is that it’s most lush growth is under my armpits, the one place I can’t get to at the moment!

This week I have seen both my surgeon and oncologist for post surgery check ups. My surgeon was very happy with how I am healing, but there was a build up of fluid that needed to be drained. Ten comedy size syringes later, 500ml of what looked like lager had been drained and I suddenly felt a lot less restricted across my chest!. Apparently my breasts weighed 2.4kg, and so with their removal and all the fluid my BMI is probably looking a lot healthier!

I proudly showed the nurses that not only had I been doing my daily exercises, and because of that had a relatively good range of movement, but I had also managed to wear a t shirt. It doesn’t sound a lot, but again it’s a step back to normality after wearing button up lumberjack shirts since my surgery.

My oncologist gave me some helpful advice on how to hopefully ease the last two remaining chemo after effects. To use Arnica on the cording in my forearms ( this is where the chemo has caused my veins to collapse) and Omega 3 fish oil to help the numbness from the chemo induced small fibre neuropathy in my left foot ( wasn’t that the title of a film?).

I will now be referred to the radiotherapy department for measuring, marking up and a three week course of radiotherapy.

I think I should mention the word prognosis at this point. I was, like many others I am sure, thinking that following pathology results the specialists would be able to give me an idea of what the future holds for me. But I have come to realise that what I was told at the beginning of this journey is so true:-

I am unique.

The cancer I have is unique.

The relationship between me and this cancer, is unique.

This means that no-one knows what will happen, there is no point in using statistics as they can only ever be a “guesstimation” and no other person’s experience will be the same as mine.

My doctors are using all the treatments that they know have been successful to cure me, I am keeping my positive attitude, and bless it, my 50+ year old body is doing very well with all that’s been thrown at it. So all of us together will beat this thing as I intend to claim the free bus pass that I have paid taxes for all these years!

The show went on.

As you can see from the title, just two weeks after the dress rehearsal my surgery went ahead and I am now home, convalescing with daytime TV and chocolate biscuits!

On the appointed day I went through the same procedure as before, and when I saw my surgeon he apologised that my hospital gown was not black ( you know the type, one tie at the back that leaves everything exposed to the world!). But I did manage to get a pair of support stockings in a very dark green that could look black in the right light!

I was then wheeled on a trolley to meet the anaesthetic team. Here I am afraid my very shy veins let me down again, and sadly my “good” vein was on the side that my lymph nodes were going to be removed from. After a few attempts to raise a vein I mentioned that when having chemotherapy they had put my hands in warm water for 5 minutes which had worked. My anaesthetist disappeared for a while, and then came back with a couple of surgical gloves filled with warm water and tied up to make little hot water bottles! I did have to laugh, but it worked a treat! Once the cannula was in the operation could begin.

I thought I would be “knocked out” in a side room and then wheeled into theatre, but no, I walked into the room myself and was greeted by the whole operating team, the table and a lovely set of shiny steps, like those used to mount a horse, for me to get onto to the table with!

Once I was up and settled down a few monitoring pads were put on my body, an oxygen mask applied and anaesthetic injected into my cannula. My last words were, “ I can feel it taking effect now”…

When I woke ( it seemed like only minutes later) a lovely nurse was offering me a drink of very welcome water and thanks to my surgeon’s magic spray I discovered that I had no drains in my wounds. This meant that I would be able to go home the following morning if all went well overnight…great news! I was then wheeled back to the recovery ward. It felt slightly surreal that it was all done after such a long build up to this day and when the nurse on the ward asked how I was feeling…I said I felt a little tired…she found this very amusing as patients usually mention pain, soreness, discomfort etc; and told me I was entitled to feel a bit tired as I had had a busy afternoon!

After an even more welcome cup of tea and biscuits I was given another heart pillow so that I now had one for each side and made my way to the main ward. This journey was also on a trolley and I did my best royal wave as I was trundled through the corridors, my trusty porter telling me if I had missed anyone on the way!

By the time I was settled in the ward and had chosen what I wanted for breakfast I was really looking forward to a good night’s sleep…

This was not to be!

The frailest member of the ward showed that she had the strongest lungs, and kept me awake with sounds ranging from loud sighs, through dirty chuckles to full blown orgasmic sounds!. The nurses took pity on me, and as they could not find any ear plugs moved me into a side ward. Even though I could still hear her through the closed door it was muted enough for me to sleep until I was awoken by my Rice Krispies and a blood pressure check!

I travelled home later that morning with my heart cushions held to my chest to protect it from the seat belt, still not quite believing that my surgery was finally done.

A couple of days later I went to my doctor’s surgery to have the dressings changed and am pleased to report that all looked well.

Walking out of the surgery a wonderful thing happened…a total stranger walked past me, turned around and said “I love your style, you look amazing”, and then walked on. This was directed to me, in a military style hat covering my bald head and my first outing with my newly breastless chest.

That man had no idea how much his comment meant to me, or how important it was. It just proves that if you feel like saying something nice to someone…do it!! It may make their day like it did mine!

False start/dress rehearsal?

 

So, I had the date for my surgery and I religiously followed all the instructions. I set my alarm so that I could have tea and toast before 7.30 am and only drank water until 11.00am. Little did I know how long it would be before I ate and drank again! And I also did a ceremonial throwing of my bras into the bin ( apart from the one I was wearing of course).

On arrival at the hospital I was fitted with an appropriate wrist band and an additional shiny red one, as a warning that after surgery my left arm should not be used for blood pressure checks or needles of any type due to the removal of my lymph nodes. I tried to convince myself that it looked like a festival wristband, but I don’t think I will be keeping this one on when I leave! The nurse advised that the only thing left to do was to remove my many ear piercings. This was because they may injure my surgeon or his team…I do love my spikes!

I sat and waited, and was visited at various times by medical staff including the anaesthetist who told me that I would have a morphine pump, so that I could administer my own pain relief post surgery. He must have seen a particular look on my face as he hurriedly advised me that I couldn’t give myself so much as to become addicted!. The next visitor was my surgeon who wrote some intriguing hieroglyphics on my breasts with a marker pen.

Now I sat and waited, and waited, and waited. I did some Soduko, read for a while, tried not to look at the clock (without success) and was also aware of a whispered discussion about theatre delays coming from the nurses room. Finally at 4pm my surgeon and anaesthetist came into my room and told me that unfortunately my surgery would not go ahead that day. The reason for this was an emergency that had occurred, which had taken the operating team so long to resolve that there was not enough theatre time for me.

I felt a strange mix of emotions, but the strongest was disappointment, closely followed by concern for the emergency patient, which put my disappointment in perspective. The nursing staff were great and knowing how long I had been fasting rapidly produced two cups of sweet tea and practically force fed me sandwiches!

I then realised that I was 20 miles away from home and had no money as all the hospital paperwork had said to bring no valuables! Luckily I had taken an old “clockwork” Nokia and a spare sim card with me which meant I could ring someone to come and get me. But as everyone assumed I was “under the knife” no-one seemed to want to answer a call from an unknown number!

The nurse then told me there was a bus that could take me for free if I had my hospital letter…but clever me had not wanted to have my house key and a letter with my address on in a bag that may be stolen…so no letter.

Luckily I managed to contact my mum, who rang a friend, who cancelled a book club meeting and drove all the way to pick me up.

I have learnt my lesson and will take with me some way of paying for a journey home next time, But I am hoping it will be a case of “bad rehearsal, great show” and on my next scheduled date for surgery all will go according to plan!

P.S Once home I luckily remembered to take my bras out of the bin.

P.P.S After three showers I still have the hieroglyphs on my breasts…an interesting look!

 

Meeting my surgeon

I have to share some slightly personal information at this point to explain why I did a rather unusual thing the day I met my surgeon for the first time.

I am a large breasted woman, in fact I wear an H cup bra, and once I knew I would be having a mastectomy I started to think about how I would manage only having one very large breast. Also being in my late 50s, let’s just say that the breast would not be what you might call pert either!

I decided that it would be a lot easier for me to manage with a completely flat chest and use prosthetic breasts of a more manageable size. I mentioned this at a meeting with my oncologist and was told that surgeons are loath to remove healthy breasts, and that I would have to put a good case forward.

This is where my unusual act comes in!

I wanted to graphically demonstrate just how big an H cup is, and so I took a spare bra to my appointment and when the discussion started I took it out of my handbag…and placed the cup of the bra on my bum fluff covered head to show that it exactly fitted my skull…in other words my breasts are the same size as my head!

Luckily my surgeon has a sense of humour and thought my demonstration was an excellent idea.

I then put the rest of my case forward and he totally accepted my argument, and agreed to a double mastectomy! In fact he asked if he could use my case in a lecture he was giving on this very topic (but perhaps he may not mention the bra on the head!)

A couple of weeks after this I saw my MacMillan nurse so that she could give me more information about my surgery. When she approached me I noticed that she had a large carrier bag and I wondered if she’d done a bit of shopping in her break, But no!

This bag contained my new breasts!

Affectionately known in the trade as “cumfies”, they are little (well in my case not so little) stuffed,soft cushions to place in a special bra (also supplied) with pockets, to wear while my chest wounds heal. Once healing is complete (hopefully 4-6 weeks after surgery) I then swop them for the more substantial ones! My nurse had also brought one of these for me to handle. The full size prosthetic breast (known in alternative circles as a chicken fillet) was pretty heavy and so I was glad I had decided to go for a D cup rather than anything larger, or I would have had to add back problems to my list of side effects!

Also in my goody bag was the sweetest thing so far…a little heart-shaped cushion to place under my armpit for comfort after my lymph node removal.

It may seem daft considering what lies ahead, but I came away feeling happy and cared for.