A feeling of loss

I have made arrangements to have my DNA taken and stored this week as it will change if/when I have a transplant. I realise that I haven’t a hope of finding out who my father really was or possible half-siblings before the bone marrow transplant. There is just so much going on. Of all the events which have happened this year, that was the most challenging as it changed every perception I had about myself and has made me rethink all my relationships.

Perhaps when/if I emerge from the challenge I face in the bubble I can revisit this topic. I am a little ultra-sensitive at the moment and although I would have liked to contribute to the debate about donor conception, I think perhaps I must leave this to others who feel, perhaps rightly, that they are more knowledgeable. There have been so many areas in my life where I have found that a head-on approach is not always the best and in the end I have usually found alternative routes.

As a newcomer to the debate, in many ways I lack experience but what I do have because I learnt about my origins so late in life, is the experience of being on the other side of the debate. I don’t mean I thought donor conception was a good idea, but having been through the years of conceiving and bringing up children myself without knowledge of my origins, I was able to form my own ideas about adoption, IVF, abortion, eugenics without the subjectivity which comes from knowing about one’s own origins.

One of the greatest challenges of the truth about my conception is the feeling of loss. I am fortunate in having a husband and family of my own and I know I must look forward but we all come from somewhere. Most of us need to know about who we are and our history and I still feel that half of that has been lost. It is easy to dismiss this but when we hear about children adopted from one culture into another, of the latest schemes to manufacture embryos but we must start to think less about the sad lives of the couples who would love to have children, and more about the children themselves and their needs.

Difficulties

So difficult to keep thoughts and feelings in check. A letter arrived from the hospital outlining my appointments to have lung, kidney and heart functions checked. Made me realise I’d better do some singing practice to improve my breath control which is pitiful at the moment. One one hand this is all progress but on the other it reminds me that none of this will happen unless I am in remission and only Wednesday will give me that news. In addition, unless I can get rid of the nasal infection and chronic rhinitis, all this will be in vain.

It is such a strange time to be thinking about impending isolation because, of course, life is going on for everyone around me too with important events in their lives. Anna’s friend, Stu, is having a very difficult operation on Tuesday. My heart goes out to him because he has had to suffer a lot in his young life and now this elective surgery could improve his life but always it takes courage to face an operation because you do it on your own. I am thinking about him and hoping so much that all goes well.

In the wider world despite all the Christmas decorations and displays in the shops, so many people at the moment are facing real problems with unemployment and house repossessions, yet still we have bankers getting bonuses and M.P.s complaining about changes to their privileged lives.

At Christmas time, which is now approaching, we think of peace yet sadly the coffins of soldiers are being flown back from Afghanistan. Just as the best of a generation was lost in World War I, we seem to be losing so many really wonderful young men. I wonder how many wars there would be if the people who declared them actually had to go to war themselves.

So in my safe, comfortable world I must prepare for the journey ahead. It’s not as if I haven’t faced difficulties before, but I must try my best to make things as easy for my family as possible. As I read about other cancer and lymphoma patients also facing difficult treatment and scan results, I know I am not alone and we must all support each other.

Filling in the time

Tuesday was pentamidine day. It was also the day the central heating boiler broke down. Fortunately, the engineers arrived early, diagnosed the problem and fixed it so we set off for the hospital in good time. Unfortunately, it was raining and the roads near the hospital were gridlocked – parking is a very real problem, particularly when it’s wet. Ray dropped me off and spent the next half hour circling round to find a parking spot.

When I arrived, the pentamidine room was still occupied; they were running late as they had been held up by the pharmacy – probably one or two pharmacists spent hours traversing the city to find a way in. Eventually, it was my turn. If I could put the apparatus together myself I could go in; if not I would have to wait another 40 minutes for the fumes to clear so a nurse could enter the room.

The diagram was not the best but I managed to put it together and put the first drug in and connect it up. Unfortunately, as I have nasal congestion the whole thing was something of a farce. When I came to put the second drug in the apparatus had come apart and had to be cobbled together. I am always very shaky after the pentamidine so we had a delicious (!) lunch at the hospital to allow me time to recover.

Today brought news of the health checks I shall need before the transplant can go ahead. Although it looks daunting it somehow brings it all much closer.

Ray is desperately trying to fill the time before the PET scan results next Wednesday. He collected some topsoil from someone in the village and is redoing the flowerbeds by the front door – and he’s not a gardener. He’s even been seen sweeping up leaves ….

Now is a waiting game

Now is a waiting game. I am waiting for the results of the PET scan but I am also waiting to see what will be done to eradicate my other health problems so that, if I am in remission, the bone marrow transplant can go ahead. When we were at the hospital on Monday Ray delivered letters to the Bone Marrow Transplant Consultant and my oncologist. Unfortunately my oncologist is on holiday this week but someone is needed to co-ordinate the ENT treatment.

So far I have been trying to do what I can with diet, nasal sprays etc. but a more powerful approach will be needed if I am to meet the deadline. I am also worried about the number of scans I have had already and will have this year.

Although physically I am quite weak, mentally I am feeling a little better. Constant chemo has a serious effect on my concentration, vocabulary and memory – both short and long term and all this can be quite frightening.

Last Friday I wasn’t feeling too good and I was lying on the sofa when the skeletons arrived. No, this isn’t the chemo talking. Two skeletons arrived for my daughter, Anna. She is a forensic archaeologist and needed them for teaching. A friend of hers runs a museum and these were left after a Red Cross Exhibit. The Red Cross no longer wanted them and Anna’s friend had had them sitting in his office for some months.

As I looked across I had this surreal vision of a skeleton sitting in the red leather armchair I usually use – very comfortable in front of the log fire so I hope this was not an omen. Anna was beside herself with delight. The other skeleton was in pieces but it seemed to have two right arms and wasn’t that an extra pelvis?

They could be a good burglar deterrent if we go away on holiday in the future.

Remember, remember

I’m waiting for my PET scan results and to learn what the ENT experts plan to do. In the meantime articles in the “Sunday Times” and “Sunday Telegraph” have made me revisit my experience of ductal carcinoma in situ. In the late 1990s I could not get NHS reconstructive surgery after mastectomy because I had refused to be televised or to have my operation at a crucial of the academic year. I had to find a solution. My friend Marion, also engaged in adult education (short-term contracts), put her logical mind to the problem. She calculated that if I paid for my operation this might equal most of my part-time salary for that year, but I would be able to opt when I had the operation and thus save my employment, not just for that year but subsequent years.

Reconstructive surgery after mastectomy required two operations. The first removed skin and muscle from my back to the front so a new breast was built up and the second a built up a realistic-looking nipple.

Unfortunately, because I had these operations privately, my then GP (yes the one who had encouraged me to have the mammogram) would not allow my operation wounds to be treated by the practice nurse. I had to have a district nurse from another area who put on her rubber gloves to protect herself and then rummaged around in her handbag for a pen. I ended up with MRSA - I was told to take a couple of paracetamol.

Fortunately, the consultant who carried out the operation did assist me. I remember my husband driving me down to a private hospital somewhere between Portsmouth and Chichester and carrying me in to see him. I remember the fluid being drained off. I remember knowing that nothing counteracts MRSA. I remember the incredible pain. I remember listening to Rachmaninov’s second piano concerto and knowing, yes knowing that I had reached the crisis point when I would live or die.

I remember the helplessness felt by my family, my refusal to go back into hospital where I knew I definitely would die and I remember my daughter searching Southsea for manuka honey which she thought might save me. The practice nurse took matters into her own hands and rang me offering help. Miraculously I recovered.

After the second operation I contracted MRSA again, although less badly than the first time. This was because the dressings were not fastened securely enough at the hospital. But I did recover and you cannot spend your whole life looking back or being bitter about other people’s mistakes. I am assured that my lymphoma is not related to either the operations or the MRSA but the fact is we don’t know. People should not have mastectomies if they don’t need them – then they would be spared all the suffering.

Nightmare of ductal carcinoma

Not sleeping as PET scan looms. I’ve read articles in the “Sunday Times” and “Sunday Telegraph” which make clear ductile carcinoma in situ can lie dormant for years and perhaps half of them never develop into breast cancer yet hundreds of women have mastectomies which could be unnecessary. If I had not been operated on or subsequently developed MRSA from the sequence of operations which followed my diagnosis would I be suffering from lymphoma today?

As far as I was concerned the late 1990s was a very difficult period. The operation itself was absolute mutilation – a 19^th century solution to a 21^st century diagnosis. From then on I found it difficult to get work as I had a history of “cancer”. I remember arguing with my new GP as to whether it really was cancer and if I had to put it down as such on my health form for prospective employers – I always opted for ductal carcinoma in situ. My life insurance doubled overnight and trying to find travel insurance became a financial nightmare.

I did not opt for a reconstruction immediately as the mastectomy itself was difficult for my family to cope with and this would have entailed very long surgery. As it was I lost a lot of blood. Each morning we were got out of bed to have our breakfast in another room so the surgeon could do the ward round without the bother of encountering any patients. The prosthesis was awful so on my return home I requested reconstructive surgery which I understood would take place about one year after the original operation.

At the time the only work I could get was adult education short-term contracts which ran from late September to May when the examinations took place. I therefore requested that I have an operation in May, June, July, August or September as I would have no sick pay. I could hardly take on an examination course in all conscience and then say that I would be off work for six weeks. It would not be fair to students. I made this very clear and regularly enquired where I was on the list.

Then I had a very special offer. I could have my reconstructive surgery in June (12 months after my mastectomy) PROVIDED I AGREED TO BE TELEVISED – I believe it was for Channel 4. As my children were teenagers I knew this would be horribly embarrassing for them and refused. I then asked when my surgery would be if I couldn’t have the operation in June. I was told October – just at the start of the academic year for adult education. If I behaved ethically and did not take on any work, then I would be deprived of all my classes for that whole year and there was no guarantee that the Adult Education Centres would then come back to me the following year.

I explained that October was impossible and if necessary I would wait until the following summer. At that point I was told if I did not accept either of these offers my name would be put to the bottom of the list i.e. I would not be operated on at all! From then on the nightmare got worse …..

"Sunday Times" & Ductal Carcinoma

When I started this blog in June 2009 I started looking at the possible causes of my lymphoma, particularly those related to stress. I rather glossed over one very difficult episode in my life, ductal carcinoma in situ which I mentioned on 29^th June. An article in today’s Sunday Times criticising the Government for not ensuring warnings about mistreatment in their encouragement to women to have mammograms brings that back in focus.

If you have been following this blog you will find I am not entirely enamoured with the medical profession. In the late 1990s I was a fit, healthy woman. My then doctor was constantly wanting me to have a mammogram, not that anything was wrong, but it was like having a car MOT or maybe the practice got extra points for referrals. This was the worst mistake I have ever made.

I was recalled to the hospital to have a needle biopsy and faked a fainting fit half way through but not before they had made a start. Then I was told the shattering news. I had ductal carcinoma in situ. This is where pre-cancerous cells are detected in the milk ducts of the breast but haven’t developed into a lump or moved anywhere else in the breast itself.

I was told two ABSOLUTE LIES. Number 1 – it always developed into full-blown cancer and Number 2 – the only treatment was a mastectomy.

Even in my highly emotional state I knew that Number 1 was illogical – how could they tell that every case of ductal carcenoma in situ always developed into cancer – unless every woman who developed cancer had previously had a mammogram (that in itself could be a consideration). I was hustled into making an immediate decision by the scaremongering that hospitals can be very good at. Breast cancer was still regarded then as a major killer of women and I had my family to consider. My mother asked me why they could not treat the condition by laser – quite an intelligent remark in the circumstances. In the end I had to agree to the operation, not because I thought it was necessary, but because I was afraid that the needle biopsy might have disturbed an otherwise quite discreet site.

This operation set off a chain of events which were physically, emotionally and financially very, very costly……