Steps back to ‘normality’….easy right? I wish it was but as the saying goes ‘nothing worth having ever comes easy’ and I’ve had a lot of practice at dealing with challenges so I’m not going to give up after winning the biggest personal battle of my life so far.
I’ve talked in my previous blogs about the emotional aspect of my cancer journey. However, I had major surgery only a few months ago and it is also a long physical healing process. Once the initial convalescence period was over and I was mobile again, I began to experience the sensations of my body working to join the nerves, blood vessels and muscles back together. It varies from a small tingle to occasional sharp pain which stops me in my tracks. It is something I have to tolerate pretty much on a daily basis now. If I’ve had quite a physical day it can be a dull ache.
Having a DIEP flap reconstruction is often compared to a ‘Tummy Tuck’. DIEP flap breast reconstruction uses a patient’s lower abdominal tissue to recreate a warm, soft, natural breast following a mastectomy. In reality, the two procedures are very different in several important ways.
One of the main differences is that “DIEP flap surgery requires the expertise of highly trained microsurgeons. This is due to the extensive care and technique required to properly harvest the necessary blood vessels and sensory nerves needed to successfully transplant the abdominal tissue to the chest wall for breast reconstruction. Although seeking a highly trained and board-certified plastic surgeon is important for a Tummy Tuck procedure, no special care to harvest blood vessels or sensory nerves is necessary.
….Both procedures remove skin and fat from the lower abdomen and preserve the abdominal muscles. However, the DIEP flap is a more invasive procedure: the blood vessels (“perforators”) that keep the DIEP flap skin and fat alive travel just beneath or within the abdominal muscle. An incision is made in the abdominal muscle to access these blood vessels. The prepared tissue is then disconnected from the body and transplanted to the chest using microsurgery. The surgeons then shape the tissue to create the new breast. In contrast, the tissue removed during a Tummy Tuck is simply thrown away as medical waste.” – (Ref: PRMA -enhance.com)
Despite the first few weeks when even the slightest stretch was a feat and I was at the mercy of the limitations of my body, I was rather naive about the longer term! I always remained very positive about my recovery and genuinely thought that getting back to ‘normal’ at some point would be a breeze! I had exercised pretty much all my life, how hard could it be? I soon found out….
My initial rehabilitation was about gradually working towards doing routine household chores and getting out for walks. I was surprised that I could only manage short distances and walked a much slower pace. I don’t even mean compared to my old ‘power walks’, this was still less than a gentle amble! Obviously this has improved and I can do a ‘proper’ fitness walk now but power walking is on hold for the time being!
In terms of getting back on top of cleaning, ironing and anything that requires standing for long periods, this is still a work in progress. I break all of the chores up into smaller chunks now. It’s not just the stretching, sometimes it’s leaning against something to clean such as kitchen worktops and our very deep free standing bath. My husband was a legend with the ironing. He did it all for months. Luckily for me he finds it therapeutic! However, he is so busy with his business that I got to the point where I thought I should try doing a bit here and there, nothing too arduous or heavy. It was so much more strenuous than I anticipated though. I think quite a lot of factors came into play – leaning against the ironing board and lifting the iron while standing up. This would result in an upper abdominal pain, slightly different to the usual discomfort.
Be patient and don’t rush, you’ll arrive when you’re ready. The one who wins the race is often slow and steady.
I was supposed to have my follow-up appointment at the Queen Victoria Hospital in East Grinstead in November 2022 but unfortunately I had the flu so it had to be rescheduled to February 2023. It was the first time I had seen the plastic surgeon since she performed my operation in July 2022. She was very happy with the way everything looked and we discussed nipple reconstruction. Before my surgery I had thought a lot about having a novelty tattoo in place of my nipple but once I saw how amazing the reconstruction looked I thought much more about having the look of an actual nipple. This stage of reconstruction is usually done some time after the mastectomy to allow the reconstructed breast to settle into its final shape so the surgeon can position the nipple accurately and is usually around 6 to 12 months. Nipple reconstruction is usually done under a local anaesthetic and you can go home the same day.
“The surgeon will use some tissue, known as a ‘flap’ from the reconstructed breast and will stitch this together to form the projecting nipple. This will produce the nipple shape but the colour will be the same as the colour of the reconstructed breast.
The areola can be reconstructed using skin from a donor site; usually the upper inner thigh as the skin here is slightly darker and is a better colour match for your areola than the breast skin. This would leave you with a scar at the donor site, where the areola skin is taken. The scar will be a straight line about 5-6cm long and will fade with time.
Nipple areola tattooing on to the skin can be performed following a nipple reconstruction or on its own to produce a good appearance and colour match for the nipple areola complex. If you do not want a scar at the donor site tattooing alone can be performed to produce the areola colour.” – (Ref: cuh.nhs.uk)
I made my decision to have this procedure at the appointment and now I am on a list, waiting for an available slot. Apparently they are very busy and couldn’t give me any idea how long that wait will be. My surgeon did say she would like to do it herself and is hoping she can but wasn’t able to guarantee it. I am nervous about having it done while I’m conscious but I know the fear is almost certainly much worse than the reality.
As this was also a general check up I did ask my surgeon about some of the tummy pains I’d been experiencing as sometimes they are above my surgical site. I asked if it could be muscular and she agreed whole heartedly. Her response was “Well, we did have to cut through your muscles”. This made sense and put my mind at ease. I asked her whether I should avoid doing anything. She replied that I should do whatever I could manage and it wouldn’t do me any harm. That was what I was hoping to hear as I wasn’t looking for an excuse to give up on physical activities. At the same time, I didn’t want to do any unnecessary damage to myself.
Since then I have been gradually getting back into a bit of formal exercise but it has been a reality check. The first time I went back to doing a Pilates class on ‘Zoom’ I was perturbed by how hard I found it. I was restricted on how much I could stretch which is difficult as a lot of Pilates is about stretching. I have also lost a lot of flexibility in my left arm due to the lymph nodes biopsy. It feels very tight and tense. The worse thing for me though is how much weaker my muscles are. I’ve never been very flexible, despite many years of toning exercises, but I’ve always prided myself on how strong my core is and I’ve always found abdominal exercises well within my capability. However, I can no longer do a ‘roll up’ which entails pulling yourself up to a sitting position from a lying down position, using only your stomach muscles, either completely outstretched with your legs straight or with bent legs. I know it is early days in terms of my surgery but I’m not sure my muscles, having been cut through, will ever return to the same strength as I’d worked so hard to get them to over the years. There are a lot of Pilates exercises I am able to do though and I do as many of them as I can. I’ve only attended a few sessions since my operation and I’ve experienced quite a lot of abdominal pain in the days following the classes. I would expect to get the muscular pain but unfortunately I’ve also felt quite sore around my surgical site from stretching too far. It has made me realise that the healing process could take years before I am fully recovered and I will need to be very patient with myself (something I’m not very good at!).
“Not being able to do everything is no excuse for not doing everything you can” – Ashleigh Elwood Brilliant (English-born American author and cartoonist).
Recently a group of my girl friends decided to sign up to ‘Mum Dance’, a franchise offering a termly session of fitness classes involving dance routines to retro pop classics! Five of us have been attending these classes at the local college and we mostly laugh our way through them! The routines are very fast and involve a lot of rapid twisting and turning. Personally I think it’s all a bit too fast and frantic to do any of the moves well and I feel that the benefits may be outweighed by the risk of damage to our knees! The young instructor is lovely and encourages us to do what we can and improvise if necessary but sadly I think we laugh more than we achieve! The first week I came out wondering if I was Julia Walters or Victoria Wood as I most certainly wasn’t Jane Fonda or Arlene Phillips! The concept is great but the pace is too much for the amount of different moves. I’ve done years of high impact aerobics classes and they are more manageable because the moves are more simple and carried out for longer sections so it’s not such a problem if the music is fast. Don’t get me wrong, those types of classes are a killer but more because of the energy level than how complex the moves are. We thought we would improve after a couple of weeks but we’re all struggling and not finding it any easier. It was worth a shot but we’ve decided not to sign up for next term. We’re hoping to find something more suitable to our ability and fitness levels.
In addition to my post-op recovery I had not truly realised the extent of how much of an impact taking the Tamoxifen would have. My mum must have either breezed through it or more likely been her usual stoic self and simply got on with it. It’s not until now that I am experiencing the side-effects that I can appreciate the impact it has. I’ve now read online comments and questions from a lot of forums from women who have been taking the drug for some time and who can’t wait to get to the end of the five or ten year period, depending on their situation.
“Progress always involves risks. You can’t steal second base and keep your foot on first.” – Robert Quillen (American Journalist and Humorist).
The most serious side-effects are Thromboembolism (blood clot causing blocked vein or blocked artery) or a stroke. The risk of these occurring is just over double when taking Tamoxifen. However this also takes into account other factors, such as family history. Other less common effects are changes in the lining (endometrium) of your uterus. These changes may mean serious problems are starting, including cancer of the uterus. Liver problems and cataracts are also a risk. These risks are all much higher where there is a previous history or pre-existing condition so the important thing is to be vigilant about any signs relating to those specific dangers.
Any cancer treatment in women that lowers oestrogen levels can increase the risk of osteoporosis. Tamoxifen has been associated with reduced bone density in premenopausal women, although it is not known whether this may result in an increased risk of fracture. Premenopausal women taking tamoxifen should be advised regarding measures to maintain bone health.
“Guidance from a UK expert group recommends that women taking hormone therapy for breast cancer, who are at high risk of osteoporosis, should have bone density measured at:
• the start of treatment
• regular points throughout treatment
The test used is called a dual energy x-ray absorptiometry scan (DEXA scan) of bone mineral density (BMD).” – (Ref: cancerresearchuk.org)
I haven’t looked into this yet but I know that my maternal grandmother had Osteoporosis so it’s definitely something I plan to make enquiries about.
“If you risk nothing, then you risk everything.” – Geena Davis
As I said earlier, I hadn’t been prepared for the effect Tamoxifen would have on me and, besides the less common side effects, there are a lot of typical side effects.
The most common side effects of tamoxifen are:
hot flushes
vaginal discharge
nausea
mood swings
fatigue
depression
hair thinning
constipation
loss of libido
dry skin
Fluid build-up (oedema)
Leg cramps and muscle pain
Headaches
I am experiencing quite a few of the above, most notably extreme tiredness, sometimes feeling very down, hot flashes and joint pain/leg cramps.
The fatigue is the worst and not helped by how bad my sleep is at night. It can take me hours to get off to sleep and I’m so restless. I have quite a few hot sweats during the night which adds to the challenge of sleeping well. I’ve been through periods of insomnia before but this is on another level. I know that it is a typical symptom of menopause and many women suffer from it. Unfortunately it’s just harder to manage without being able to replace the oestrogen. Tiredness typically contributes to low mood as it’s so much harder to cope with anything when you are feeling exhausted. I’m hoping this will improve with time. I am currently in my ninth month of taking the drug so maybe my body is still adjusting to it.
I also experience a lot of ‘hardening’ of my breast and tummy. At night I still use the heart-shaped cushion I was kindly gifted from a breast cancer charity. It’s generally not painful but can be very uncomfortable. The worst thing is if I’ve got an itch and no amount of scratching will make a difference as my numb skin doesn’t react! It makes it feel like it’s an internal itch and none of my efforts to relieve it ever work! There is one area of my breast that has never gone soft since my surgery and sometimes it does cause me some aches and pains. I have been advised to massage the area but it doesn’t seem to make a difference. I expect I’ll just learn to live with it.
“The secret of change is to focus all of your energy, not on fighting the old, but building on the new.” – Socrates.
I get more hot flushes in the day now too but I was offered some complementary therapy via Macmillan Cancer Support. They referred me for six sessions of acupuncture with the Sara Lee Trust. The trust supports people in Hastings and Rother who have been diagnosed with cancer or another life threatening illness by providing free counselling, complementary therapies and group activities specifically designed to work alongside medical treatment. At my first appointment I was advised that I am eligible for free counselling and any of my close family members are also eligible for a limited number of sessions. They also offer, amongst other things, yoga, reflexology, massages and support groups.
A therapist contacted me and I had my first five sessions at St Michael’s Hospice where the trust is based and the final one was more local to me in one of their other centres. The therapist was lovely and very flexible, as I work and couldn’t always make the same slot each week. The acupuncture definitely helped but didn’t get rid of the problem altogether, not that I really expected it to. I don’t think there’s any quick fix to this predicament and some women try many different treatments before they see any improvement.
I regularly get cramp in my calves and the muscle goes into a spasm. I hadn’t made a connection to the medication but after it happened a few times I read up on it. Similarly with the joint pain. It is mostly in my fingers, hands, wrists, forearms, ankles and feet. There is a history of Rheumatoid Arthritis on my dad’s side of the family and my brother suffers from Dupuytren’s Contracture so initially I wondered about that but I think it’s more likely a side effect in my circumstances.
Despite all of this, I am aware of how lucky I am to be free of cancer at this time and that this is a way of lowering the risk of the cancer returning. The probable risk for me will always be there and oestrogen will never be my friend so it’s a lifetime change. As much as this medication may be affecting my overall health, I know I will be anxious when I’m no longer taking it, so it’s definitely a double-edged sword.
When you look back, don’t think of it as a year of pain but a year of growth. You made it through each day, You should be proud of yourself. You are a better you, despite all the hardships. Take a deep breath and enter with hope and confidence.
Hoping for a Happy Ever After 