Cancerversary

I received the letter last week for my mammogram screening appointment. The one-year anniversary, or “cancerversary”, is approaching since I was diagnosed with breast cancer last year.

April has always been quite a significant month in terms of anniversaries for my hubby and I. It was the month that we first met each other, when we got engaged, when we first moved in together and when we arrived back home from travelling around the world together. Now the month holds a much less joyful anniversary and brings back disturbing memories from a traumatic period in my life.

The 24mm sized lump in my left breast did not show up on the mammogram I had last year. This is because breast tissue is dense in younger women so I had to have an additional MRI scan in order for it to be visible. At my last oncology appointment I requested to have an MRI as I was already feeling anxious about whether I would only have a mammogram. As soon as the letter arrived, a horrible feeling arrived in the pit of my stomach and my eyes filled with tears. I immediately rang the hospital to check whether the appointment I’d received was for an MRI. The nurse said the appointment is for a mammogram and explained that they always do a mammogram first and that I was also scheduled to have an MRI too.

I’m not sure if the terror and fear of the cancer coming back will ever leave me, but I know that at that hospital appointment I’m going to be transported back to the scary place from last year. The innocent and somewhat naïve approach I took to attending that screening appointment with my dear friend. The day that unfolded into having an ultrasound, laying on that hospital bed in tears having a needle biopsy and the ensuing trauma from the worrying look on the doctor’s face who sat and told me that “we are concerned”. The day my life and the plans I had for it changed, the days of being care-free ended.

Luckily my breast care nurse happened to call me this week to see how I was getting on. I told her about the mammogram and I asked how long it would take to get the results. She said I could ring her if I hadn’t heard within 7 days and she would then follow up and get them for me.

I’ve also just started my Tamoxifen medication. I had been waiting for my oncologist to let me know whether I’d be taking Tamoxifen or an aromotese inhibitor, Letrozole. He was conferring with his colleagues as to which I should take. In the meantime I’d been doing my own research and had used Breast Cancer Care’s Ask the Nurse service. This was particularly helpful as they sent me information on results from trials that have been carried out on both drugs.

I’d come to my own conclusion that as I was pre menopausal at the end of chemo and was having ovarian suppression, that an aromotese inhibitor proved slightly more effective than Tamoxifen. At my last oncology appointment I was slightly miffed at the fact that I was seen by a locum, who had to go next door to check with my oncologist which medication I would be put on. This meant I didn’t have the opportunity to understand the reasoning behind his decision. I will speak with him again at my next appointment, but I must have faith in his knowledge and experience that it’s the right choice for me.

Life, and work in particular, continues to be challenging. I’m sure I can get past this significant anniversary and continue to look forward with the positive and strong mind set I already have and gradually put this whole experience behind me. They do say that as one door closes, another opens and I have a feeling that life has plenty more positive and rewarding opportunities in store in the coming months ahead.

Mixed emotions after finishing breast cancer treatment

I did it, I’m done, I’m through, I’m finished! I’ve not posted here for a while because I really wanted to write something positive and upbeat about finally reaching the end of my treatment (well, kind of). I know loved ones would like to hear this and are eager to help celebrate my victory over cancer….but I just don’t feel like partying.

Quite surprisingly to me I actually feel the opposite to how I think I should right now. I thought I’d be overjoyed at this point, relieved that the treatment is over – hands punching in the air, lots of high fives and feeling fantastic. Don’t get me wrong, I’m pleased I’m still here and alive, obviously, but I really hadn’t anticipated feeling this way at all.

I’m having difficulty sleeping, my head is a whirlwind of worries hurtling round my mind and I wake up feeling stressed and anxious with my heart pounding. I feel pretty flat and waves of tears just appear out of nowhere. How can there possibly be any more bloody tears left in me? There are times when I can’t stop crying, uncontrollably, and in the most inappropriate places – it’s really quite embarrassing. My fabulously supportive friends are wanting to see me, which is so lovely, but I feel overwhelmed by it all and just want to hide away from the world. And then I feel guilty for feeling this way. My poor hubby probably wonders where his wife gone.

Oh I wish had more energy, more motivation and more life in me… I so desperately wish I could go back to being the old me. But of course I can’t. I will never be the same person I was before, I need to readjust and adapt to this ‘new normal’, this brave new world. I must be patient, my body (and my mind) needs time to heal. I’ve heard from others that it takes as long as the total duration of treatment to feel fully physically and emotionally well. There is a continual and constant fear playing in the back of my mind. I wonder whether the treatment was successful, I’m frightened by every ache and pain and I worry if the big C will reappear its ugly head again in the future. I’m sure at this point anxiety is at its highest for all cancer survivors and it will undoubtedly lessen over time.

As soon as you’ve finished treatment, I think there can be an expectation to just pick up and get back to ‘normal’. I’ve been told by nurses, health professionals and other people who have been through the same experience that the way I’m feeling is perfectly normal – and is actually more the typical behaviour displayed by someone rather than the jumping for joy feeling. I’ve been in contact with others who have transitioned through the end of their treatment phase and back into ‘normal’ life again. I’ve heard how people have struggled at this point and also felt similar emotions so at least I know I’m not alone and it is common to feel this way. After months of hospital visits, surgeries, nasty chemical infusions, being nuked and poked, prodded and punctured with needles my body and mind has taken a battering. It’s hardly surprising that, as much as I’d like to, I’m not quite ready to bounce back into life as it was before.

I guess you use all of your strength and courage keeping it together to get yourself through all of the treatment and then when the finish line appears you’re left thinking ‘what the feck just happened?’ You go from feeling relatively strong, positive and ‘brave’ to this person whose confidence is on the floor, who has difficulty keeping it together at times and has these debilitating melt downs. I was recently told that your brain purposely shuts down excess feelings until you’re ready to handle them which makes good sense.

These feelings are also being magnified by the start of my Zolodex injections. Women usually approach the menopause much more naturally with their oestrogen levels dropping off at a gradual and natural rate. Mine however have been pretty much been switched off overnight, chemically, and very unnaturally so I guess the feelings/side effects are more severe. I am told that this will level out over approximately 3 months as my body gets used to the Zolodex.

I am starting back at work at the beginning of February and am dreading having one of these melt downs in the office. My employers have been absolutely fantastic and my colleagues and friends at work so supportive, I know they will look after me when I return. I’m still petrified and worried if I’ll be able to keep up with everything. Fortunately I’m doing a gradual phased return which will help me back into working life gently. I’m also worried about seeing people in my wig who I haven’t seen since I was diagnosed. It feels like going out in my wig for the first time all over again.

My treatment isn’t technically finished as I’ll continue to have my 3-weekly Herceptin injections until November as well as my monthly Zolodex injections. As my cancer was oestrogen receptor positive I will also go onto long-term medication – either Tamoxifen (for up to 10 years) or Letrozole. I’ll continue to be in contact with my oncologist and healthcare professionals for a little longer which does provide a safety net of some sort.

I’ve been having some counselling sessions at the Haven to help me process everything and provide me with some coping strategies and I’ve also started a ‘Moving Forward’ course run by Breast Cancer Care.

I have also discovered Dr Peter Harvey, a psychologist who has specialised in supporting cancer patients and he has written an in-depth article (After the Treatment Finishes – Then What?) which accurately describes and completely makes sense of the way I’m feeling.

Just when you think you’ve come to the end of one road, it feels like another has started. I’m absolutely sure things will get better and that each day that passes life will get easier as I get stronger and my body and mind have time to recover. My apologies to my darling husband, friends and family if you’re wondering why I’m miserable or withdrawn – I promise I’ll be back soon!

Image by Power of Positivity (powerofpositivity.com).

Starting Herceptin, Zolodex and radiotherapy treatment

I can’t quite believe we’re nearly half way through December already. Here we are with just under two weeks to go until Christmas and I’ve now started the next stage of my treatment. Last Tuesday morning I had the first of my Herceptin (Trastuzumab) injections which will continue for the next year. 

As it was being administered into my thigh, I squeezed hold of Pats’ hand and whilst it did sting a little, luckily it wasn’t too painful. It was quite unlike any injection I’ve had before as it took the nurse a good few minutes to inject it. I wasn’t looking, but Pats told me the nurse was gently and slowly injecting the fluid into my leg. We then had to wait for two hours afterwards to ensure that I didn’t suffer any adverse side effects (which I didn’t).

After applying a local anaesthetic cream onto my tummy, just to the left of my belly button, I was given the second treat of the day. This was an early Christmas present from my oncologist – the Zolodex injection. I’d recently heard from other ladies that this can be a really painful injection (hence the numbing cream) so I was really quite nervous about it. The nurse suggested that I didn’t look at the needle, just as well as Pats said it was rather large! It actually implants a small pellet into the skin area. My eyes diverted to every possible location in the room other than the needle going in. To my surprise it wasn’t as painful as I anticipated!

I’d  discussed hormone treatment with my oncologist the day before and he was still undecided whether to prescribe me Tamoxifen or to use an alternative aromatise inhibitor in conjunction with Zolodex. ‘Let’s switch your ovaries off for Christmas and start the hormone treatment in the New Year,’ he said. And a merry Christmas to you too!

Goserelin, or Zolodex as it is also known, is a hormonal therapy used to treat breast cancer. It works by interfering with the way hormones are made or how they work in the body. The breast cancer I had was strongly oestrogen receptor-positive (ER positive) and therefore relies on this hormone to grow. Zolodex is used to treat women who have ER positive breast cancer who have not yet gone through the menopause. It can be used after surgery to reduce the chance of the cancer coming back (typically over a two-year period). Before menopause, almost all oestrogen is made by the ovaries – Zolodex stops the ovaries from making oestrogen.

I am slightly concerned about what effect this is going to have on me. Because the Zolodex will prevent my body from producing oestrogen it will technically put me into a medically induced menopause. Woo hoo, another lovely side effect to add to the list and cope with. Having said that I am glad that my body won’t be producing the hormone which will reduce the risk of the cancer coming back. But what will this do to me? Will I grow a beard?! Will I become moody? I do hope for my hubby’s sake that neither of these are the case.

After a quick lunch break we returned for the third and triple whammy appointment of the day, my first radiotherapy treatment. There was a delay with the machine so we had a bit of a wait. After an initial meeting to discuss the treatment, side effects and do’s and don’ts, I was given a rather lovely gown to change into that I will keep for the duration of my treatment. We then sat in a smaller sub waiting room until I was called in.

I walked into the room and was greeted by two nurses and could see a very large ‘Clinac’ machine. As I laid out on the bed, the nurses drew on me, lined me up with the machinery and were calling out various numbers around me. There was music playing along in the background. Although whilst this initial part was happening, a particularly dramatic and apocalyptic piece was playing which made it all feel rather intense. Luckily the nurse asked to skip on the song as it was supposed to be festive Christmas music!

I lay there looking up at the ceiling above me which was emblazoned with an image of bright blue sky and the branches of a tree sprinkled with white spring blossom, whilst Christmas songs were playing over the speaker – a very strange and surreal experience indeed.

The team explained what would happen and that they would leave the room whilst the treatment was in progress, but that I would be monitored on a camera at all times. If I needed to alert them at all I just needed to raise my arm. I laid there very still, thinking back to what the nurse had said earlier about trying to relax and to breathe as normally as possible. Quite difficult when you’re laying in a position trying not to make any movements at all!

As I write this now I have completed five radiotherapy treatments so far. I’m pleased to say that it’s not painful at all, but I am very aware of a feeling or sensation of something ‘happening’ in that area. I can’t really explain it, more like a tightness, or almost going back to a period post surgery where I was very aware of that area/my scar. I have definitely started to feel more tired, but they did say this was to be expected, especially following chemotherapy treatment.

I received some recommendations of products to use on the skin from other ladies who have had radiotherapy, so I have an arsenal of creams and gels at my disposal.

Have you had any of these treatments described in this post? Have you suffered any side effects? If so, do you have any tips you can share to help  deal with these?

The Nuffield Victoria Wing

At our first consultation appointment we met with a nurse who went through some questions regarding my breast surgery and planned cancer treatment.  She explained that the fertility treatment would commence at the start of my period and that I would be put on a “short protocol” to get me through as quickly as possible.

I had an AMH blood test taken – a hormone test that gives an indication of how many eggs I have left in my ovaries.  The result wouldn’t give a number of how many eggs are actually left, it would be a measure of how strong the hormone is (if the level was not very high it could indicate approaching the menopause). The result of this test would help them get the correct dosing for the medication used for the IVF.

She asked if we were self funding the treatment which we said we were because I wasn’t due to be having chemotherapy and because we were over the age of 34. She said how much of a post code lottery IVF funding is and that had we lived in Surrey we would have been able to have treatment up to the age of 39 and would have been funded for two cycles.  Damn it – we just moved from Surrey!!

We both completed a medical questionnaire each and a whole host of other paperwork and then she scheduled in our next appointment which she said would be approx. 2 hours long. This session would cover how to do injections, how they monitor the cycle with ultrasound scans, how they collect the eggs and then create embryos for us as well as storage of the embryos and the hormone supplements to be taken.

The nurse also explained the two types of fertility treatment . IVF (In vitro fertilisation) where the egg and sperm are put together in a dish and they find each other and fertilise naturally. ICSI (Intra-cytoplasmic sperm injection) where they manually inject a single sperm into an egg which increases fertilisation rates. She said they would rather prepare us for the fact that we may need the latter as it would cost an extra £1,300 rather than shock us on the day. Jesus, this is all so expensive!

She said that the average number of eggs collected is between 8-10, although not all of those would be high enough quality to freeze – they would only freeze the good quality ones as they’re the ones that will survive the freezing and thawing process. As this would be our only shot at having the treatment they would likely freeze as many as possible.  The storage of the embryos would be done in a batch and would cost approximately £400.

We were then introduced to the Doctor for our initial consultation.  He immediately brought up the topic of funding, and said he couldn’t understand why our case hadn’t been look into in terms of funding on the NHS. We explained what the consultant at QA had said to us about my planned radiotherapy treatment and the upper age limit making us not eligible. He said they would apply for funding for us and see what they would say, it was worth the chance and he said in my situation they may be slightly more flexible.

He agreed that the right decision had been made in terms of having the surgery first, and that in the window between having the op and starting treatment they would take me through a cycle. He said that the recommendation after you have been on Tamoxifen for two or three years is that it’s possible to place the embryos back. Current teaching is that Tamoxifen is taken for five years, however he said that conventionally it’s two to three years (this would depend on the staging and type of cancer from the analysis).

The doctor reassured us that they will do their very best to obtain the best quality embryos to maintain my fertility and whilst it may not be my priority in terms of getting through the cancer, once I am through with my treatment that my ability to carry a baby would in no way be compromised.

He said his goal would be to get around 10 eggs, to then have seven to eight embryos, with four to five blastocysts. We would have an approx 30% chance per transfer of each of those embryos.

He offered us their counselling services and also suggested we take Omega 3, Vitamins B, C and D and a supplement called Proxeed. We were already both rattling with about 12 different vitamin supplements we’d been taking so think we were safely covered there!

We walked away feeling positive about the potential results of the treatment and definitely felt like we were in very safe, caring hands.

Back at home later on that day I received an unexpected delivery of flowers from a colleague at work. They were beautiful and I was touched by her kindness and thoughtfulness.

Shock number two…

As we left the office a breast care nurse, Claire, came and took us into a separate room.  ‘A bit of a shock, not expecting anything like this today, or…?’ she trailed off asking inquisitively. ‘My husband is a really positive person and he refused to believe it would be anything other than a cyst, whereas I certainly had hope but preferred to be prepared for either outcome,’ I replied.

Claire went on to explain a bit more about the cancer, that it was low grade which meant it was very slow, not a quick or aggressive growing tumour and that their plan was to go on and cure and treat this. She said it was obviously very frightening and that I’d clearly want treatment to start as soon as possible but that due to the nature of my tumour, it wasn’t going to change at all in a period of weeks.

Claire said that breast cancers these days are much more treatable and that success rates are very good and for grade one tumours in particular, however it would all depend on the size and grade after surgery and whether the lymph nodes were infected.

Pats asked Claire what lymph nodes were and she explained that they are part of the lymphatic system.  A filter system that gets rid of waste products – debris, infection…and cancer cells.  She said that if anything was in the breast that the lymph nodes might try to get rid of the cancer cells and that it often spreads to the glands under the arm. She pointed out that my glands seemed to be all normal and so were optimistic that it was confined to the breast.

Claire then went on to say that radiotherapy would be likely afterwards.  This is an x-ray treatment that sterilises the rest of the breast. She said I may not need chemotherapy as its a grade one and that the benefit to me would be very minimal, but that they would need more information. I asked again about what effect this would have on my fertility.

As most of our friends and family know, Pats and I had been trying for some time to get pregnant with a little Moonmin but sadly to no avail. I’d already rang a fertility clinic the week before to ask about what options might be available and the lady I spoke to said they would be able to harvest my eggs. Claire also said that this could be done, but that it would very much depend on timing. ‘Often by the time they can harvest eggs we would need to have you in for your treatment but that’s certainly something that we can look into.’

The  cancer I have is hormone receptive (it feeds off of oestrogen) so I would need to take anti hormone drugs. Claire said  that there is a possibility that the medication could potentially switch off the ovaries which would affect my fertility. I’d have to take the tablets for up to five years with a recommendation of being off them for two years before getting pregnant. ‘It’s like a double whammy isn’t it?’ said Claire. I began to cry again.

All our hopes and plans had been on starting our own little family for such a long time, to hear that those dreams could now be taken away from us was just absolutely heartbreaking. It sounds strange but it kind of hurt more than hearing about the cancer diagnosis.

Pats and I had certainly taken our time in deciding when we wanted to have children.  We’d spent many fun-filled years enjoying ourselves, having a great social life, travelling the world together and not marrying until eight years after we’d met. Starting a family was something we’d always said we wanted to do but had left it to a much later stage in our lives than most couples.

I was already rather neurotic about the desire to get pregnant. I constantly read books, websites and blogs on the best tips to maximise success.  I was having regular acupuncture treatment and had spent god knows how much money on ovulation kits, tests, potions and vitamin supplements – you name it, I had it! Poor Pats had felt the pressure from my yearning, especially since moving into our new home which we’d especially chosen as it was perfect for a family. We’d already started investigations into why things hadn’t been working for us…in a way it was a blessing that I wasn’t already pregnant at this stage.

Claire went on to say they had a fertility specialist at the hospital and that she would make an appointment for us so we knew what our options were. She said there were possibilities that we might potentially be able to wait a month or two whilst my eggs were harvested before starting the treatment. She said if my cancer was a higher grade or lots of the lymph nodes were affected we’d be in a different situation, but said that we may have time and might be able to wait one to two months before starting the anti hormone drugs.

Claire said she’s known ladies who have successfully got pregnant after  breast cancer treatment, which raised a smile and some hope within me. However she said they may not want to me to have IVF as that would involve giving me hormones and they would need to be mindful of the breast cancer risk. ‘We’d need to take age into consideration as you would be on the tablets for at least five years, but it may be that you’d be able to take them for two and then…well, that would need to be a consultant decision. We want to give the best treatment for you, what’s safe for you, against the risk of breast cancer returning.’

Claire then went on to book  in my pre-op assessment for 11 May and gave me some blood test forms saying I could have the bloods done that day or if I’d had enough I could get them done when I go back for the mammogram on Monday.

As she left us in the room alone together, Pats gave me a massive hug and said how positive it was and what a good job that I’d caught it early. He said you just don’t ever think it’s going to be that. “It can do one anyway,” I replied, my fighting instincts kicking in. ‘That’s the attitude,’ said Pats. ‘Will you still love me with a deformed breast?’ I asked Pats. ‘I’d still love you with no breasts,’ he lovingly replied.